Today I had my IV iron infusion and it was quite the long appointment. 4 hours!! I had never had IV iron before so I had to have premedications and a test dose then wait before having the actual dose. So the day went like this:
Got to the appointment at 9am. Got my IV in after 2 sticks. The first one was in my left hand and that one hurt like the dickens. The nurse who put it wasn’t very good at it and I’m gonna have a terrible bruise there. But she was finally successful in my right arm. Then the premeds each which took about 10 mins: benadryl, zantac and a steroid. Then the test dose over an hour. At this point they watch closely for any reactions. I guess anaphylaxis is common with this drug hence the premeds and test dose. I had no issues though so onto a bag of saline over an hour to wait for any delayed reactions. When that was over it was onto the real thing. I wanted to kiss the bag!! But instead I just took a picture:
Coming Up to Breathe 
did you ever think that you have poor veins, dipsh*t? and it is not the medical personnel you should be criticizing.
FUNNY how I had the same problem with the dipstick nurses in NC getting the IV to work!! I don’t think it’s us. I am a nurse also!!!! Not once have I had a problem anywhere else with them getting IV’s in!! Maybe the medical PERSONNEL needs to go back to SCHOOL!!!
I had my iron infusion today. The nurses were most than helpful when they were putting IV in my hands. Yes they have tried 3 times but it does not make them incompetent. I had a surgeon putting iv in my arm and took him 5 times to get it right. It is not personnel who is in wrong. It is circumstances we are in at the time and our body’s react to it. When you are frightened we all know what happens. We all also have a very hard skin, all those factors come in to it. I think my nurses were wonderful no matter how many times they tried. And guess what i have paid for it. Please stop winging and get on with your life’s as you may need those incompetent nurses one day and they may be the ones witch will save your life.
Indira,
I think you are the case of a person who does have difficult veins. Maybe you realize you do have a difficulty and you were happy with the extra care you needed to handle your situation? You sounded almost pleased with your difficulties, but in any case, you certainly did make quite the good and obedient patient 😛
I don’t think it is right of you, though, to call others who maybe WERE dealt with by an incompetent nurse “wingers.” (I know you meant whiners.)
Maybe you should try being a little more supportive of others. In my situation I do know that one of the nurses I had was incompetent. Someone who will pump an iv needle in and out of a vein over a dozen times isn’t using proper methods. After the dozen times I made her stop. She should have removed the needle and sought another site after putting the needle in, backing it up and pushing it back in fully ONE TIME. Her actions caused a deep, large and very painful bruise and the vein has a knot in it that I’ve been told is probably permanent. The other IV nurse commented later that said nurse had caused further scarring to that vein and now they can’t use that vein at any point from the damaged site on down. If I want to whine about that, I think it is my prerogative to do so. I hadn’t brought it up on here before, but you inspired me to tell it now. If you don’t like it when you think others are whining, don’t read it. I also found it insensitive of you to tell people to “get on with their life.” I think the people here ARE getting on with their life. If they post a complaint here, that is THEIR WAY of getting on with it. Not everyone handles things in the same way, Indira, but that doesn’t make their way wrong and yours correct.
For those who would care to know how I am doing several months post IV therapy….My counts are dropping and I’ll need future infusions, but my doctor wanted to wait until it was “dire” enough that insurance would pay for it. I don’t think that is a good standard of care and it certainly wasn’t what he had promised me, but it is a limitation I have due to my insurance. (Unfortunately when I was in care last time the insurance wouldn’t pay for the infusions to take me all the way up into even a normal count, but only to take me “near” to normal) I’m trying to take good herbal supplements which seem to help me more than the prescription iron does without the side effects. I also cook out of an iron skillet now and eat liver regularly (blech!?) I think it has kept the drop from being as great or as fast as it would have been otherwise.
One happy thing has been that my hair has started to thicken up. I have bunches of new hairs that are in two lengths…either one inch or two inches long. They all want to stand straight up along my part, so it is easy to see that there are quite a few of them. My hair had always been so thick, then when the anemia got to it’s worst, I lost about 2/3rd of my hair. I think it looks like I maybe am getting a fair amount of it back but certainly not all that I lost. I’m thrilled with even this much coming back.
It has been good to see how others are feeling as they go through the infusions and after. I appreciate those who have posted both the good AND the bad. This site has been the most honest of all the places I’ve gone to. I’m glad I knew what to *really* expect.
Indira,
First of all, who are you to act haughty and all-knowing when you were not there? Your experience is just that…YOUR experience. It has absolutely nothing to do with this experience.
Second, there are indeed people with veins that are small, that tend to roll, that collapse because the person is dehydrated, etc. That does NOT mean that every nurse is adept at inserting an IV or that it is automatically the patient who is having the problem.
I had hyperemesis gravidarum during my pregnancies. To those unfamiliar, let me explain it by saying this: In my first full term pregnancy, I was unable to eat for 7 of the 9 months. I was vomiting around the clock, unable to keep food or even water down. My doctor estimated that I threw up roughly 5000 times during the length of the pregnancy. I was constantly in danger of dehydration, I was anemic, my potassium levels were in the basement. Because of this, I had to have IV’s near constantly. I am exceedingly familiar with the potential problems due to circumstance. I am also well experienced to tell you with extreme confidence that many nurses are not all that adept at inserting an IV, particularly in a patient with known issues (small veins, collapsing, etc.). There were many times they had to bring in the anesthesiologist to insert my IV. One nurse tried for half an hour before they called in the anesthesiologist, who was able to put it in in less than a minute.
you must be a nurse and a dipshitty nurse at that. everyone tells me i have good veins, then one nurse came to take my blood and after 3 attemps, she said, “it’s your veins, im sorry, i’ll call the dr” and i told her, “thats funny, everyone always says i have great veins” she smiled and left, when the dr. came back he took my blood on the first try and said, “i dont know what the problem was, you have great veins” i laughed and i told him, that is exactly what i just told your nurse! – another, thing, if you dont have something nice to say, why say anything at all. you dont know what people go through with medical problems and you call someone a dipsh’t, who you dont even know. well then, you’re a loser.
Liz I agree with you because I have cystic fibrosis and have regular 2 week stays in hospital (sometimes more than 5 in a year) and always to have iv antibiotics. My veins are good because otherwise they could not stand that amount of invasion. However I have lost count of the times that a struggling nurse has told me I have bad veins and called in a colleague – who has then inserted the venthflon with no trouble. Often I have been left in pain and badly bruised, but I have never complained because I know that it is not incompetence it is just that some people have “the knack” and others just don’t.
PS as I also have to have iron infusions, at least they can use the iv already in my arm!
Um didn’t you just call her a dipshit too? hypocrite don’t you think? Everyone has a right to an opinion, but you just called this person a dipshit and then bashed them for saying that too. Whatever makes you feel better I guess.
Hey Jen…thanks for your information from a medical person’s perspective. I saw you left another reply up near the top. All of that stuff up there is from when this blog was first started (a LONG time ago). Newer posts are down here at the bottom. Everyone seems to get hung up at the top over the good vein bad vein issue and then try to 1. Add to it or 2. Get discouraged by it when they really want basic information. Hope you make it through all the body of this long scrolling page and find the info you are looking for. Let us know how your infusions help you.
I only came on to read about the procedure for my iron infusions next week to find you lot arguing like school children. Grow up, all of you.
Thank you Ike for your very sage advice…if you had cared to read any further you would find that people are NOT always arguing on here, but there are trolls here just as at any other forum. The blog owner pretty much leaves this place alone, so even the unsavory comments are going to be found sprinkled here and there. What a shame that you judged the entire content of the blog off posts that were made years ago and didn’t dig any deeper. There are good people here who give excellent advice and help and support. Maybe after you go through your infusions you would like to come back and offer some encouragement as well. Don’t just look on the sour side, but look more closely and you will find that there are plenty of helpful and friendly folks here.
Is it really necessary to call names?? I don’t think so. If you don’t have anything nice or constructive to say, keep your comments to yourself.
I think you know if you have poor veins or not. I have been poked and prodded on a regular basis for almost 20 years. I know when someone is experienced and cares about drawing blood from a patient (me) by the way they do their job. One nurse told me years ago that she didn’t want to poke me in the hand. But due to so much scar tissue in my veins and no luck getting blood from my arms that she had no choice but to try my hand. This was not a first choice. Since the medical personnel did not try your arm first and went straight for the painful area of your hand is the example of someone that really didn’t care about your feelings. This kind of negative behavior can stay with one for doctor treatments to come. I would ignore the comment by the rude poster with the foul language. I appreciate your post and it helps me to understand what to expect from my future appt for a IV iron infusion.
I have had one complete course of 6 wks iron infusion and am on my second course, two wks in. I requested the IV needle go in my arm, not the back of my hand and it’s almost painless at that point. Every nurse has willingly listened to my request and has complied. I think you were just nervous and maybe tensed up – understandable. Try my method and see if it helps you as much as it does me. Good luck!
For me, no one has ever tried anything but the arm–no one has approached my hand. I might punch them out if they did. I’ve just had more bad attempts.: several at the Mayo Clinic and several at an eye surgery center. Some people do have veins that more difficult–and some technicians and nurses are better than others.
hi terry- i have a question for you since you are having to get multiple iron infusions- initially i only needed one per year, ten every 8 months, now had to get one after just 5 months– did you start as i did and have to slowly increase or did you always need multiple courses? i don’t have my follow up appt for another 2 weeks and am just wondering.
Hey lay low, he was being cute and there are some incompetent professionals in all walks of life. As a RN I’ve seen small and big mistakes and drawing blood and causing a bruise is nothing. You must be a young kid who got on mommy’s computer while she was gone! Seize the day!
I am just here to talk about my iron infusions. Tomorrow I get my 5th or 6th run and I feel absolutely tired and tired of being tired. My levels are the lowest they have ever been and I feel it. I am dizzy – my heart is doing crazy things, I am very irritable and I can’t seem to even focus on anything.
I go in tomorrow at 11 am for the 5 hour 1st treatment and yes – my veins are non existent – not the nurses’s fault, not mine, just life. They have warmed me up with towels, and had a parade of people trying to get me taken care of (IV) I just try to be calm and think it will be over soon, the most who have shown up to do me was 5 – I was pricked and pricked and still calm because I had to be – for me and for my health. I have had so many issues with blood draws and everything. The great thing is – it is over soon, the bad thing – we will need them until we go on to another place. I just want to peel myself off the bed, come home without going straight to bed and be a normal person again.
Right now I am hungry, anxious, heart racing. I am not nervous at all – I just want 11 am to be here. I took a Klonopin to relax me and it has, but I just want to fall asleep.
Round two of the iron infusion will be decided after this appointment is completed.
FYI – I need iron, Vitamin D for life because of a gastric bypass I had done 12 years ago. That is a whole different chapter of my health and life. 12 more hours – I can’t wait.
I know I read a lot of varying opinions – just be positive and hopefully it will make things smoother. I try to think of the things I am not 100% at in life – I am sure a lot of us aren’t there. Give RN’s a break – 12 hour shifts, lots of personalities, death, sadness, joy, – they have feelings too. Most of them love what they do – if they don’t when you get there – chat with them a bit, take them out of the garbage they are feeling from whatever a Dr. said, another RN, know it all CNA – patient’s family and relax.
And no, I am not an RN or related to one. Just think they are pretty special people.
I agree whole heartedly. I, too, have almost non-existent veins. I always try to be pleasant even if I’m not in a good mood myself.
Janet
Hi Tricia,
I sent you an email that you can read if you’d like but I find it funny that you would actually leave your name so that I could email you to such a comment!
But basically next time make sure to have all your info straight next time…..I am a medical personnel (duh an RN) maybe if you actually read my blog instead of swearing at me on it you’d know that! I hope you have something better in life to do than make yourself look childish on others’ blogs. I’ll say a prayer for you.
Oh and P.S. If you look in the picture attached to the post you can see that I have great veins actually.
Dear Tracey,
Wow, that girl was so mean! TOTALLY uncalled for. BTW, I have terrible veins and there are many well-trained people who have taken excellent care of me. Bruising and pain is almost always due to someone not taking the time or having the skill to execute their job effectively. Your reply was priceless!!
That being said, hope you feel better! I have had two iron infusions and it’s not fun! Your attitude seems great about the whole thing! Best of luck…
Thanks Anna! That means a lot!
Tracey
I HATE people who use “I’ll say a prayer for you” in lieu of what they REALLY want to say, which is:”Fuck you”.
Jesus may love you, but everybody else thinks you’re a cunt.
Whether you are a Christian or not, will you always say F-U to someone that makes you angry? There is a point in time that it is appropriate to “rise above” pitiful people and “love your enemies” just as it says in the Bible… So having said that it is right to pray for people when they act foolishly, you never know what might be going on in their life to make them want to act this way. I understand that you may not comprehend this concept. I will pray for you.
FOLKS! CALM DOWN! I just have finished my 1st ever iron infusion treatment. 15 minites ago I had an IV pouringmuch needed iron into my body. Yes there are good and bad nurses, some worse than others.
I have Myasthenia Gravis and give home injections of B-12 and Lovenox 2xdaily. I am a human pin coushion LOL. I have had many a RN and even MD. Surgens etc. not be able to do the stick in a smooth painless fashion. The more they do it the better they get. BUT, sometimes it just does not happen.Yes it hurts, yes it is upseting, these people are NOT– NOT, purposely hurting you. Depending on each individual the circomstance(sp) is diferent. No reason for fowl language
and harsh words. C**Tand F**k ? How old are you ? Really you need to
find a more adult way of expression. The best thing I can advise is for you to be your best advocate. If your person is not getting it done. TELL THEMTO STOP! Ask for someone else or ask for a specialest to insert you IV. Only YOU can controll what is happening to you. You have rights, use them,insted of fowl and hurtfull words.
Hey Diane,
Nice to see you here and welcome. I did get a little laugh at your commenting to a very old post for people to calm down 🙂 I always figure that troll type people who come post ugly things just do it to incite and rarely come back to post again.
I’m not sure where this thread will put my comment. Not every post gets a “reply” button underneath it, so I’m not sure this will go to the right area even.
I think because this blog runs in a continuing long thread people don’t realize that some of the comments are a year old or more and are better for information than for trying to pick up discussion again.
Anyway, I do hope you will post of your continuing progress with iron therapy.
wishing you good health!
Kimber
You need psych help.
Duh, I am a nurse also for over 20 years and these Medical personnel need to practice on THEMSELVES more and not us!!!!
@Jessica – thanks for praying for me, cunt! :o)
Duh RN you need to go back to school and stick yourself more and see how it feels!!!
You were lucky though, because I had no test before my iron.. They just stuck it in wrong 3 times and walked away and stayed on the phone most of the time.
I found this very informative! My mom is scheduled for her first infusion later this month and she is very nervous, naturally. They still don’t know exactly why her levels are so low, but hopefully this will help her to feel better! Good luck and thanks!
i just had my first iv today. there was nothing to it. the nurse got it right on the first stick and i have small veins. the benadrel made me sleep the whole time. maybe this is not par for the course but i hope your mom’s will be the same way. i had mine done at the cancer center and they were great.
I had an iron infusion 2 months ago. Thurs I had more blood tests and my wbc, rbc, hgb and hct were actually worse. Doc said my marrow isn’t doing its job and did a marrow biopsy. What is he looking for?
I had an iron infusion 2 months ago. Thurs I had more blood tests and my wbc, rbc, hgb and hct were actually worse. Doc said my marrow isn’t doing its job and did a marrow biopsy. What is he looking for? oops, meant to click “notify me”
Hi Faith,
I would assume that he is looking for how your bone marrow is functioning and how it looks. They can get lots of info by looking at your bone marrow. It is where your red cells are made. Good luck getting some answers.
Tracey
Did the infusions help. My Dr. wants me to consider this. My Ferritin level is 8. I am trying to take oral iron along with an increase in my diet but the oral iron makes me so sick to my stomach I don’t think I am going to be able to tolerate it. Just wondering if it was worth the while?
I had an iron infusion almost a year ago. It was found out that my ferritin was less than 1 (I didn’t even know that was possible). After the infusion, I felt like a million bucks! Prior to it, I was exhausted all the time and was sleeping 12 hours a night on average. It was later found out that I had celiac disease and had not been absorbing iron, thus the low ferritin. After the iron infusion(s) (I had 2 of them), I had a ton of energy and felt a lot better. My labs showed great improvement (hct increased, mcv was better, hgb increased and ferritin went as high as 55). It seems to be wearing off after almost a year, but it was definately worth doing! There are some risks for side effects, so make sure that you get all the facts from your Dr.
Hi Tammy,
I never updated after this did I? I guess feeling so much better I found other things to do!! I really need to get some updates on here!
Anyway, the infusion did wonders. My ferritin went from 7 to 12 after 3 months of oral iron. Then it went from 12 to I think 235 after one infusion!!! WOW! They were very impressed with that. That was from lab work done a month after the infusion.
I’m glad I went for this choice.
Tracey
Tracey,
I went in for 3 IV iron infusions a couple months ago and now I have to go back in for 3 more!! UGHHH! I hate having the nurses worse than the actual iron!!!
my ferritin level is 6 – I have started orally taking 324mg of Ferritin. I am wondering if you tried pills before going for an infusion? I am thinking of asking my dr for an infusion right away as I am so tired of feeling this way.
Any advice?
my ferritin level is 6 – I have started orally taking 324mg of Ferritin. I am wondering if you tried pills before going for an infusion? I am thinking of asking my dr for an infusion right away as I am so tired of feeling this way.
Any advice?
sorry I forgot to click the notify me…
Hi Cheri,
I took oral iron pills for 3 months first and my ferritin went from 7 to 12. AFter that I had the IV infusion. I was one of those that just didn’t absorb the iron through my GI tract. I guess most people do. The recommendation is to try the orals for 3 months because the IV form does come with some pretty high allergic rates. I had to be premedicated and was there for 4 hours for my infusion. If I had had to have more than just one then the rest would have just been 1 hour sessions but for the allergic reasons I would at least try the oral agents first.
I know how much it totally sucks to feel the way you are but give it a go on the oral iron and avoid the IV if you can. It’s a quick fix but can come at a price if you have a reaction. I was lucky.
Hi Tracy
Thank you for your answer, your right it is best to try the less evasive route, I’m just tired of being tired!
Thanks again
Hd my IV iron yesterday. Still can’t
go to wirk because Blood Pressure
is to low.
I had a infusion of iron Oct -08, and my nurse missed the vein in my arm and the whole bag went sub-q in the tissue of my right arm. As soon as she removed the IV my whole arm turned the color of milk duds……and swelled up twice the size, one day later I was admitted to Beaumont Hospital for the awful pain I was suffering and still am. All this was done at Dr. Shaw Reddy infusion clinic through Providence Hospital.. This has never been reported, I was told by poison control it is very corrroisve to the tissue.
Shawn,
I’m so sorry to hear that this happened to you. How awful. I hope that by now you are feeling better and that your arm is healing.
Tracey
May I ask what treatment you were given as a result of this error? The same thing happened to my husband. His arm is still dark after 3 months. Thank you.
Hey Shawn, having the iron IV miss or leak out of the vien into the mussel tissue is a horrible experience. I hope you are doing okay now. On several occasions I too have had the iron infusion start to leak into my arm. Fortunately, I felt awful pain immediately and called the nurse to see what the problem was. Each time the nurse knew immediately what the problem was and took the IV out. I can only imagine the pain you must have experienced. Better luck in the future.
Hey have the doctor order an very detailed Ultersound regular one on your arm one that the IV blew in. Only reccomending that because I had a IV sub q in my arm and developed Cellulitis and also an DVT in my arm. All due to the IV sub q in my arm. The specialist told me that. Only thing to help is to get: Toridal by IV, Antiobioitc and then have to have a medication to help the blood clot correct. Only thing that helps the DVT also.
I know I have been at Beaumont that happen to me at Beaumont actually over Thanksgiving. So ask for the IV To come out ASAP if it is bad so you do not risk getting cellulitis or DVT in your body. Do not want. Still dealing with the DVT problem.
My ferritin is at 1 and I am having my first IV iron infusion today. Thank you ladies for posting this informative information, I am nervouse about this and am supposed to travel tomorrow out of state. Hopefully I will have no reaction and will see a positive rebound in my iron like several of you have.
Hi Anne,
I hope all went well and that you receive full benefits from the infusion. I am so glad I went that route.
Tracey
My doctor won’t let me fly when my iron gets really low. Can anyone explain this?
Hello, I went to the doctor Thursday for a follow up on my iron and B12, they called me Friday and said my blood cells were immature and not absorbing any iron (B12 went back to normal, from the vitamins) I’m going for my first iv iron infusion this week, a little nervous, but the information provided was awesome 🙂 that girl Tricia was ridiculous! Thanks guys!
Hi Elizabeth,
Hope all went well with your infusion.
Tracey
Tracey,
Anyone who just doesn’t know why they don’t absorb iron should look into Celiac Sprue. One is every 133 Americans have some degree of gluten senstivity and most don’t even know they have the problem. This can range from full blown Celiac to a mild sensitivity. This problem causes absorbtion issues. And, I know my hematologist didn’t check for Celiac.
I still have to get iron infusions. But, now that I am tyring to stay gluten free the infusions are about once every 18 months, instead of two a year.
Wow Regina!
Thanks for this info! I know when I had my EGD they tested me for Celiac by biopsy but not sure if I ever had the blood test. I’ll look more into my results. Thanks again!
Tracey
You must have a good doc. My blood work came back incunclusive so the doctor didn’t want to do further testing. He really didn’t want to test for Celiac in the first place. So, I tried the gluten free diet and I felt better. And, my iron didn’t drop as fast.
Regina
Actually in thinking back I’m not sure if they tested me by biopsy. I’m going to see a GI doc again though so we’ll see.
Thank you for posting this information. After a more than 2 year battle with low iron, my doctor wants me to have IV iron this week. I’m a little nervous and frustrated. I’ve taken supplements for years but my two pregnancies have wiped out all of my iron. And, now, it seems that my body may have stopped absorbing iron. It was nice to see someone else also mention Celiac (in the comments), I took that blood test today.
I hope that you are doing better and closer to finding out what is causing your illness. I just want to have energy again. I would love to be able to carry my kids around the house without feeling like I needed to rest for two days afterwards! 🙂
Hi Vicky,
Did you have the infusions? And how did your celiac labs come out? I’m thinking of looking into that route myself after so many have mentioned it!
After bleeding heavily for 7 or 8 months last year i started to feel run down this year my iron was tested and i was put on a hormonal drug to stop my period and it went bak to normal. this year in september i started feeeling very weak very tired dizzy shortness of breath weak and sore bones i had to go to the doctors 3 freaking times before they sent me for blood tests and it was found i have verrrrrry low iron so on october 23rd i saw a hemotogolgist and had an infusion in the day care hospital surrounded by chemo patients it was very depressing… it took about 7 hours to do the infusion as it was on slow release and a full bag of some iron supplement which i forget the name of now but it was a reddy browny colour..i had no sign effects…and i go bak december 11th to check my iron levels have gone bak to normal heres hoping they have….i have felt a shit lot better…i never would have thought it would be low iron…but the doctor thinks i lost alot of blood and my iron levels just went down down down over time…. i have energy and can do normal every day things now as i was sleeping 15 hours a night and waking up more tired then i was b4 i went to sleep….doctors thought it may have been a virus the flu or glandular fever but tests prooved it was anemia so lets keep our fingers crossed its gone back to normal when i go bak to my specialst
chantel of australia
Chantel,
So glad to hear that you are feeling so much better. It’s amazing what having no iron can do to a body and how poorly it can make you feel huh! Good luck on the 11th with the labs. I bet you will be amazed at how much it improved your numbers!
thanks tracey…friday is coming this week and im so nervous
can i ask you other people who have replied to this post…what was the cause of your low iron?do you have other under lying problems as to why u may have the low iron?and also how old ru all?
im 22 and have no other illnesses or problems other then being over weight…so this is why there so concerned as to why it is happening
Chantel,
Try reposting this on the bottom so that it is it’s own separate comment as i think it will get seen more. I’m 33 and have no answer yet as to why my iron is so low and is dropping again. I’m hoping the celiac will explain that. Let me know what yours shows on the 11th!
hello I just had my first iron infusion yesterday at Newton Wellesley Hospital. It was a long day and I thank you for the information you gave ahead so i had an idea what to expect. They put you in a hospital bed for comfort they also have you fill out a lunch menu they also ask every fifteen minutes if you want a drink or something to eat. other than a long day it was not bad I hope to feel better soon. Once again thanks for the great info.
You are welcome Barbara. Glad it helped you. I hope you start to feel better soon too. I bet you will. Come and update me!
tracey,
I met a woman while traveling who is anemic and does not tolerate oral iron and suggested there might be an alternative for her.
reading your story and the responses is eye-opening!
re the painful IV experience …putting those needles in is an art! It can be taught but the REALLY good ones have a touch that is pure art and can only be seen as a gift.
when my oldest son (48) was in the hospital his veins were pretty abused by all the surgeries he had had and I watched a young nurse try for 15 minutes to get a blood draw from him. She gave up! And sent in a geeky guy who looked liked Buddy Holly ( I swear) who was done in about 30 seconds. When he came in the room I said “Are you good, really goood?” and he answered in the affirmative and he was.
At 75 I have my share of IV needles and some have lifted me right off the bed so don’t feel you are being picked on by the nurses who write in. Maybe they had just had a long shift with crankt patients. It happens.
sue
Too funny about the Buddy Holly impression!! It really is an art. I put in IVs a lot myself as I’m a nurse too. I’m really not put off by the comments as I know that some people have nothing better to do in life than leave mean comments on blogs, but it was just that the first one obviously didn’t know what she was talking about. Right on my main page it says I’m a nurse and if you look at the pic on this post you can see that I have great veins!! 🙂
Sorry to hear that your son had his veins so damaged. Those are the ones that we hate seeing come in!!! Thanks for the warm comments!!
Hello, thank you for this informative blog!
I have been dealing with “slight anemia” for years, and have just recently started to collect copies of my own prior labs to compare. It seems, that back in July of 08, my Ferritin was a 5, with increased TIBC and low Hematocrit & low Hemoglobin- testing done by dermatologist, results sent to PCP. Dermatologist recommended daily Vitron C which I take. I still have pain in hips, legs, lots of hair loss(no balding), severe dizziness (out of wrk for over 1 month), tingling around mouth, hands and feet, very cold hands & feet, sensitivity to fluorescent lights and relatively low (231) B12. I am hoping at this point they send me for Iron Infusions as I don’t know what else to do. I used to take daily Ferrous Sulfate, but was switched to the Vitron C & 1000mcg B12.
Wondering what else you can tell me about Infusions and if anyone on here has had them done in the Winchester Ma area. (the closest I saw was Newton/Wellesley)
Thank you!
I’m in CT so no advice about Mass. Have you been to a hematologist? They are usually the ones that do the infusions. Maybe get a consult for one of them or if your insurance doesn’t require the consult just go see one. Take all your labwork and see what they say. A ferritin of 5 is quite low. My lowest documented is 7 so I know how crappy you feel!
The infusions are long. The first one is the longest to make sure you don’t react. Mine was 4 hours, to get all the premeds etc. Then any others would have been 1 hour. Good luck!
I was doing a search for what to expect during an Iron IV and found your site. I think I’m more worried now than before my search. Horrible to hear these unfortunate incidents so naturally I’m hoping I have capable practitioners.
I guess I should take a good book along? Do people generally feel significantly more energized after one of these treatments?
I have had to have Iron by IV about every 14 months or so for the last five or six years. I usually have a series of 4 infusions, one a week for four weeks. Until this last series of treatments I have had very little reaction to the iron. I found that taking benedryl the night before really helps. I also do better if I have eaten.
The needle stick depends on the nurse and your viens. Your viens will be easier to find if you are hydrated.
Where I receive treatment there is a TV, magazines and books available. Taking your own book is a good idea. I end up dozing for the most part.
As far as feeling better… Energy wise it can take about three weeks. The old wimpy red blood cells have to be replaced by healthy red blood cells. And, the life span of a red blood cell is about three weeks. I usually notice that I can think better after about a week. And, start getting a little more energy at 2 weeks.
Good Luck
Regina
Well that was helpful. I’ll drink up tonight (treatment is tomorrow). What is the purpose of the Benedryl? How is that effective (or why)?
Thanks.
g
Regina, I was wondering about your comment about thinking. My biggest problem is that I am not able to think clearly lately. I have a very low ferretin. The dr. said it was at 2. He wants me to have infusions immediately. Will this help clear up my thinking ablities. I am a normally smart, clear-thinking woman, but lately I can only describe my brain as cloudy. I have to make my mind work and it is so difficult. I tried to explain this to dr. He said that there is probably not a link with low iron and thinking. Your post gave me hope. Did you have “cloudy” thinking symptoms too? Please Please reply.
Dee
Benedryl helps if there is an alergic reaction. In my case my nose started running, my blood pressure dropped and the roof of my mouth started hurting. When I take the Benedryl these symptoms are very mild. You may not have a problem. Or the nurses may give you Benedryl by IV, which is the same as 2 tablets. One Benedryl tablet will put me to sleep for about 12 hours. I knew that if I had the Benedryl by IV I wouldn’t be able to go to work after the treatment. So, I take one tablet in the early evening the night before. You may want to wait and see how you do tomorrow.
Good luck on the infusion. I had the last of the series today. I have already started feeling better.
Regina
Thank you so much. I’ll try to keep my impulsiveness in check and try to do as you suggest: wait.
Hi Gail,
I hope everything went ok. I think the severe reactions you read on here (I’m assuming you mean the one about the guy who got the iron under his skin??) is pretty rare. Most of the reactions that occur are allergic reactions. But most places pre-medicate with IV benadryl and IV steroids. That is why the first infusion takes so long.
Probably this is too late to help though right? Anyway hope all went well and hope for an update. Thanks for letting her know stuff Regina!!
Hello! I am glad I ran into your blog. I had gastro surgery 5 years ago, and lost a considerable portion of my innards. I have been battling low iron levels since….(oral meds havent affected my labs whatsoever) but for the last 2 years it’s been terrible. Due to not having insurance, I didnt get my levels checked like I should have. I started feeling worse and worse….became unable to work (sales and training) and started being just generally weak and sickly. I thought it was lack of motivation….lol. I ended up at the emergency room a year and a half ago, my ferritin level was at 4….I recieved a blood transfusion, and a bill for $5,000.00. I recently became able to get care, and my Dr. said my level is currently 2…no wonder I’ve been feeling so crappy. He’s ordered infusions of 125 mg weekly for 8 weeks…and then we’ll adjust for maintenance. I’m hoping I’ll feel much better…I’ve been so low for so long I forgot what living really feels like. I’m nervous, but frankly more excited at the idea of having energy! Just wanted to share…I was glad to see there were others who felt like I do, and now feel better.
I was nervous too! So sorry to hear that you have been feeling crappy for sooooo long. It really sucks doesn’t it! And not having insurance is just as bad. $5000 bill is no fun.
I hope the infusions help. Mine sure did and I only had one. I’m dropping again tho and starting to not feel well again so I’m glad to hear that they will be doing maintenance on you.
Good luck!
Hi Julie, Tracey and all…
I too had WLS (albeit 20 years ag0) and started having low iron almost immediately. Now my Ferritin is at a 3. Most doctors look at the HGB (mine is at 12 which is just marginally low) and think all is okay. For some reason it appears WLS patients have very low Ferritin and not necessarily low HGB. Does anyone understand this?
I started IV infusions of Venofer 2 weeks ago. I had my 2nd infusion 3 days ago. I am not feeling any better (yet), but I am sweating like crazy. I have had the AC on non-stop and just can’t get cool. Has anyone experienced anything similar?
Hi Barbie, perspiration odour can sometimes be normal i found after an iv. it will pass. However, if you are Hot and sweaty and it is not a hot day, Call the clinic that you went to and tell them. You may have a temperature. Make sure you drink lits of cool water to rehydrate and flush out any body toxins as well. Good luck.
Thank goodness I found this blog. I will be going for my first infusion on Tuesday and had no idea what I was in for. My biggest concerns, are that I will have a bad reaction, pain from the iv, that it will be so difficult to be sitting next to chemo patients, and finally that I will be wiped out. Do any of you know if I will be able to drive home and I have a Holiday Party that night. Will I be able to attend? Also, the side effect about having a metallic taste in your mouth, does that go away? Just like all of you I am excited about the possibility of feeling energy. I am sleepy every day and cold and pale. I thought for the longest time it was depression, but now I realize it was my anemia. Also, I had a endoscopy and tested negative for Celiac. I still have a hunch I may have it, what is the blood test I need to take for this. Thanks so much for all your advise, it’s nice to know I’m not alone.
I have been having the infusions for several years. Until this last round of treatments I have had no reactions to the iron. This last time I had mild problems: Roof of my mouth hurt, runny nose and my blood pressure dropped. I found that if I take a benedryl the night before these reactions for the most part went away. But, remember that each of us are different and your reaction may not be the same as mine. The nurses will keep an eye out for any problems. I never notice a metalic taste. I have been able to drive home with no problem. And, I even went to work directly from the treatments. If you are given Benedryl at the time of the infusion I don’t know if you will be able to drive home, I wouldn’t be able to drive. But, I am real sensitive to Benedryl.
About Celiac, you can have the sensitivity to wheat and not have full blown Celiac. What I would suggest is try a gluten free diet for three or four weeks and see if you feel better. Might do this after the iron has had time to work. There is a magizine “Living Without” (livingwithout.com) that is a good source of information. You can also look at the many Celiac websites. I have the sensitivity and not the full blown Celiac. I do much better on a gluten free diet.
Once or twice there has been a cancer patient that has looked like they were not winning the battle for thier lives. And, it is heart breaking. For the most part you wouldn’t know there was a problem if they were not in Chemo. They do wonder about the iron treatments and sometimes will ask about the “chemo” you are getting.
I thought my fatigue was due to the stress of my job. One co-worker told me I should eat more carrots so I wouldn’t be so pale. It was a pre-employment phsyical that revealed the anemia.
Regina
Regina pretty much summed things up nicely 🙂 I didn’t have any issues sitting with the chemo patients either. The nurses knew them so well that it really was a happy place.
I don’t get sleepy from benadryl so I was fine with it but it really depends on how you react to it by if you’ll be able to drive home. If it’s your first one tho you will be there for awhile, I was there 4 hours so it should be wearing off. I would think the holiday party will be fine.
As to Celiac, I was just tested this week so still waiting on the lab work. I’m pretty sure if your biopsy was negative the labs will be too. But like Regina said, I’d try the diet and see how that does for you.
Good luck!
I just had my first IV infusion a couple of days ago and I’m still really exhausted. I’m scheduled to have a series of 8 weekly infusions. My hemaglobin was 11 and my saturation level is 3%. I had gastric bypass surgery 5 yrs ago, so I don’t absorb iron from foods anymore and while I take prescription iron pills, evidently, they aren’t working well. I don’t have heavy periods and only have cycles once every 5-8wks, so other than lack of absorption, I have no other reason for it being low. 11 months ago, my hemaglobin had gotten down to 6.3 just before I had my last baby. I’m so tired, cranky, dizzy, constant headaches and muscle pain, can’t focus, really depressed, etc. and I think it’s all anemia related. I was hoping to feel something by now from having the infusion, but guess that might be a couple more weeks from now?
Hi Erica,
Usually after about 2 weeks I start to feel a difference after 3 weeks I am feeling pretty good. And yes, all you symptoms can be anemia related. If you don’t start feeling better in a week or so tell your doctor. There are other problems that have the same symptoms as anemia.
Regina
Can you tell me how long the body aches after having the infusion are going to last and the headaches? Those are killing me! Also, is it weird that I’m MORE tired since having the infusion 3 days ago? I am absolutely exhausted!!
Erica,
The healthy red blood cells have to have time to be formed. The doctors usually tell you it takes 3 weeks for all your red blood cells to be replaced. For me I find that I start thinking more clearly about a week after the first infusion (I usually have a series of four). After two weeks I notice that I am not as tired, my headache is better and I am not as cranky. After three weeks I feel for the most part back to normal.
If the muscle aches and the headaches are bad call your doctor’s office and see what they say. They may want to go ahead and run more tests. Or, they may be able to help you with the pain while you wait to see if it is just low iron.
There are other things that can cause headaches, muscle aches, depression, and exhaustion. I have hypothyroidism. When my thyroid meds need adjusting I have the same symptoms as when my iron is low. I found out I had hypothyroidism two weeks after I was found to be anemic for the first time.
Regina
Erica,
I found it took a good 2-3 weeks before I felt a difference too. As to the muscle aches? I never had those so not sure, I had muscle weakness and it cleared up in the 2-3 weeks when I felt better. I had headaches and my neuro blamed them on the iron but I’ve always had headaches and they didn’t really change much either way.
Hope you get to feeling better soon.
Tracey
can i ask you other people who have replied to this post…what was the cause of your low iron?do you have other under lying problems as to why u may have the low iron?and also how old ru all?
im 22 and have no other illnesses or problems other then being over weight…so this is why there so concerned as to why it is happening
well so far from what i know, mine is caused by heavy prolonged blood loss. did they give u a occult fecal test? maybe you are bleeding through ur stool and you may not know.
I had a liver transplant 12 years ago and now my kidneys are failing from taking anti-rejection drugs. Your kidneys produce EPO which makes iron in your bone marrow I’ve heard. My ferritin and hg are low and I’m getting an IV infusion tomorrow. Also, I think I’ll be taking EPO needles 3x per week. My doctor said I’ll need more than one infusion.
Bill I certainly hope your iron infusion has helped you. You’ve gone through a lot and I am glad you’ve found what you need at this point in time. Your post is dated back in May so I trust you now are doing better. I had an iron infusion a week ago tomorrow – fortunately, no problems whatsoever. Hopefully, I will be getting more energy as I’ve heard it takes basically two weeks to feel the results. That is what I am looking forward to. I have a twin sister and we have both been “borderline” anemic since we were born, weighing 7 pounds total between us. Sis has had some heart problems (which I haven’t) but her blood count, etc. seem to be all right.
It gets tiresome having to go to the doctor often as I’m sure you’ve experienced. My heart goes out to you and everyone who has had to face health problems, no matter the age.
Chantel,
The doctors have not been able to determine why I do not absorb certain nutriants. So far the list includes iron, B12 and vitamin D. The iron problem started when I was in my late 20s. But, I ignored the symptoms. Thinking that: it was the stress of my job, I should exercise more, lose weight and/or take more vitamins. I was diagnosed with anmeia during a pre-employment physical when I was 34. I am now 44.
I have a theory. I was morbidly obese. I believe that I was overeating to compensate for not absorbing enough nutriants. I had gastric banding surgery about 3 years ago. The doctor would not do a bypass due to the iron absorbtion issue. Since the banding I have added B12 and Vitamin D to my have to watch list.
I do have a gluten sensitivity. The test for Celiac Sprue came back inconclusive. But, as long as I watch my gluten intake I can extend the time between iron treatments by about 4 months.
Regina
Hello,
tomorrow i will be going for the first IV treament for iron deficiency anemia. I was reading about everyone’s experiences and am worried. I am 24 and have been anemic since the beginning of my period. I believe the main reason i am anemic is due to my irregular prolonged periods that i have always had. Does anyone have a similar situation? I have to go for 8 weeks once a week for an IV. my hemotologist didnt share the results with me of my iron studies but it must be real low if i need an IV. my gyno hasnt helped me one bit. she always said i need to go on the pill and keep track of my period. it was very frustrating and after getting a pill to bring on my period, i felt like death. Im looking forward to better days with my IV tomorrow and the upcoming weeks. I hope nothing serious happens. They told me the IV would take an hour but i see for some it took hours. Is it only the first IV? i work full time and if i need to between work hours i don’t want to miss hours.
Well today I got my iron and hemogloben results and also whether I had Coeliac Disease…All came back GREAT!!!!!!
Iron went from 4 to 132 which is GREAT!!!
And the other one improved greatly to…( don’t remember exact numbers)
I am sooo relieved
Tested negative for Celiac
So glad!!!!!
The haemotologist told me if i started feeling unusually tired when i’m getting enough sleep or my menstrual cycle goes irregular i have to go bak to my Doctor straight away but for now my iron levels are good!!!
The infusion done wonders and it all worked out
Let us know how you go Tracey.
Im sure my doctor will say the same. my periods are so irregular and long its draining there are days i feel like going on the pill and giving up hopes of becoming pregant (which is the main reason i do not take the pill and i have been trying for 3 years). its exhausting ot feel the life being sucked out of you. i like to do my research and would love to get info or experience stories if anyone has any.
Don’t give up hope Karen although I would get your iron levels up to normal before getting pregnant. A baby will take nutrients from you so you need to start with as close to normal as you can or you will feel much worse than you do now. I don’t know that the pill is the answer but certainly getting some more iron whatever way the docs will help you is. Good luck hon!
Wonderful to hear Chantel!!!
Good luck Karen..Keep us posted how it goes for you
Each person is different and it varies…
Mine levels were so serverely low and it was my first infusion that they do a slow release infusion that incase i reacted to it and was allerigic mine took around 8 hours then pre meds and post meds after it into the IV also…
It doesnt hurt and I had no problems with it after 3 weeks I felt great back to my normal self it is a god send for those people with serverely low iron.
I got my results today and i’m over the Moon i don’t need another infusion and my iron levels are all corrected.
They arent 100% why my iron went sooo dangerously low but my specialist thinks it was the fact i bled for 7 months straight of light regular and very heavy menstrual bleeding.
Let us know how u get on after your results from the infusions.
I have suffered from iron deficiency anemia for about two years. It’s caused by internal bleeding, which can’t be located. I was told by my family doctor to take iron tablets. They didn’t work. When my hemoglobin dropped below 9 and my ferritin level dropped to 3 I was referred to a hematologist. By that time I was passing out when I stood up and/or walked any distance. He immediatley order two blood tranfusions. Since then I have had three iron IV infusions and now am on my 4th. I have had more needles stuck in me than I can count. While it is sometimes painful to have an IV put in a vain I’m thankful that there is a remedy for my problem. I have a gread deal of empathy for those who suffer when they undergo the IV proceedure. I am also so appreciative for the medical staff who have cared for me over the past two years.
Sorry to hear you have been thru so much Robert. IV’s are never fun that’s for sure. I always hate it when I have to put them in people at work, though I hate getting them myself more 🙂
Hi,
You are so lucky to get IV iron. My iron is down to 5 and has been for 6 months. My GP and his partner won’t give me IV iron due to risks with anaphylaxis. I find it very strange. Three years ago I had a pheochromocytoma removed and had three lots of IV iron close together prior to surgery with absolutely no negative reaction or side affects. I am dying here, not literally, but have no energy, do nothing but work come home and crash. No life. My iron is low due to heavy periods. How do I get docs to believe in IV iron.
ilovecats,
Look for a hemotologist. My primary doctor wouldn’t consider iron infusions. She also thinks that Ferritin is “gravy” and shouldn’t be considered. But, she did refer me to the hemotologist.
Regina
Absolutly ask for a referral to a hematologist. My primary physican treated me with iron suppliment for nearly a year, which did nothing for my blood iron level. It wasn’t until I was about to undergo some surgery tha Kaiser anaesthesiologist look at my blood screen, saw the low Hemoglobin and called in a hematologist. He immediatly order a blood transfusion and took over my case. One more blood transfusion and on to IV iron infusions. That changed my life. I actually have energy to live my life now. If I hadn’t been referred to a hematologist, I would either be dead or close to it. Good luck.
I also agree that I would ask to see a hematologist. They are the ones who specialize in iron deficiencies. They are the ones who give out the IV iron. Sounds like you need some too. Does your insurance require a referral? If not, call yourself.
I love cats maybe see a different doctor it took me 3 times to the same doctor before he sent me for tests always stick with a good doctor once u find one!!! its worth it
yes i agree. I met my hemotologist during surgery for gall bladder removal. he was very concerned and made me feel like someone cared. Its been almost 10 years and everyone brushed me off. if you live in the north jersey area of NJ i would recommend my doctor. And yes when i was in high school i would go home and sleep until about 8 to wake up eat do homework and go back to bed. now married and working full time, i always feel like i am running on empty and force myself to continue on. my sister is going through the same situation. she is 17 and she is anemic, low iron, and low folic acid and b12. she sleeps like crazy, eat ice, and is always tired and cranky. I also have von willebrands disease but there is nothing much i can do about that and i havent gone into further detail wit my DR about it i guess until my iron levels are regulated. i fear my sister is going through the same problem as my mother thinks she acts the same way i did when i was her age. i will def discuss this with my doctor today and thank you for your well wishes. i will keep you posted!
well i just came back from my iv and it went smoothly . towards the end i was getting pain in my arm i guess because the iron was goin in too fast but it went away as soon as the iv was out. overall i feel awake.not sayin im completely good. but i know it will take a while to feel 100%. my dr told me to take folic acid pills and is giving me a shot of B12 after the iv is out. my mom has been nagging me about taking b12 pills but i dont know if it is wise since i am getting direct shots in my arm.
Overall i feel ok waiting for the days i feel 100%. my dr is worried when my period comes i guess he suspects a great drop in iron but we will see how things pan out! til next week!
Glad to hear that things went pretty well! Hope you are feeling better in a few weeks!
You can’t take in too much B12, so take as much as you want. That is one vitamin that you will just pee out if your body doesn’t absorb it all.
Well, I had IV infusion #2 and I still feel exhausted almost 3 days later. I mean more exhausted than usual. It usually fades after about 4 days after the infusion and hoping it won’t be after every single one. That would stink. I mentioned it to the nurse and she said it might be that my body doesn’t even know what to do with the iron yet. Not sure if she’s appeasing me or whatnot. This time, I did have some heart palpations later in the day of and the day after the infusion and today, I’m itching a lot, but no rash or hives. I am having a hard time finding information on normal reactions after infusions, so not sure if that’s supposed to happen or not. Hubby works 14hr days, so I can’t take Benadryl until later tonight when the kids go to bed. My infusion cycle is kind of odd. I thought it was 8 weekly infusions, but after looking at the paperwork, it’s 3 weekly infusions, then 2 wks off. Then I have blood work ordered back at my hematologists office, then I am to go for my infusion that same day and for the 4 following weeks after that. But the 2 wks that I have no appointment are the Wednesdays before Christmas Eve and New Year’s Eve, so maybe it’s because my infusions are schedule for Wednesdays and perhaps they just won’t be open or do you think he just wants no infusions for 2 wks to make sure my body is receiving them adequately before continuing the next 4 infusions? Anyway, I am taking IV iron Venofer, in case anyone has any experience with that one.
Not sure why they are doing it that way. It may be that way with the venofer. I got something else and only got 1 total infusion. Then he said I may have to come back in 6 or so months but then said I was discharged. But now my levels have dropped again. So who knows.
Sorry you feel so tired after them. That really stinks. What are they giving you for pre-meds or do you get any pre-meds? I know I got benadryl IV before my infusion so most that would make tired.
Erica,
I am going in tomorrow for my first IV of Venofer.
Could you tell me how long it took for your first IV.
My doc said it would take 1 hr, so I was planning on going to work. Now I am reading that the first one takes 4 hrs.
Marilyn
Hi, i had my second iron iv 2 days ago, i usually feel like a car crash but i feel more like a train wreck after the last one. my first one lefet me with stomach cramps only for a few hrs. this one i had a freezing cold arm in agony in the same arm as the iv but the feeling was futher up in the arm, very painful,, nurse acted as if i was over reacting and it was unusual…which acording to someone else on this post they felt the same way. Obviously the staff administering procedure just do exactly that but dont know about reactions. My pain was so excrutiating i was in tears. they turned it off for a while and i begged for a warm pack which they didnt have, so the nurse got a latex glove and filled it with hot water and sealed it and i placed it on the arm, which was instant bliss. ( can u believe they didnt have a hotpack….its a hospital for f%^#k sake and i am in Australia not Ethiopia)
Anyways its 2 days later and i’m real sleepy, i am Hypothyriod and psitive blood test for coeliacs but endo was negatine as i have been Gluten free diet for 7 years now…i ate some prior to endo but was so sick i couldnt continue it for 2-3 weeks, i lasted 4 days and he said not to do it.
Been aneamic since i was little and thyroid med doesnt fix this bit, and dont know what causes it.
Hope i feel energy soon as the train wreck is rolling down the cliff.
oh yeah ….has anyone ever been acused of being on drugs at work …because you are tired. i have and i just stared back in horror.
Once when the needle had slipped out of the vein a little bit my arm became real cold and hurt. Luckily where I go has heated blankets.
I too have thyroid problems. When both are acting up I really don’t know if I am coming or going.
And, my boss has looked at me like she thought I was on something.
There are different types or brands of iron. If you have trouble tolerating this one get the doctor to try another.
I have a sensitivity to gluten. Not full blown Celiac. With a gluten free diet I am only able to slow down the iron loss. So, instead of having iron treatment every 8 months it is every 14 months. I also have trouble absorbing B12, Vitamin D and calcium.
Hang in there it will get better. If you need to get pushy with your doctor.
Regina
Just an observation. There are not too many men on this website. Maybe iron deficiency anemia is rare in men, or men who suffer with this problem are less inclined to talk about it. If there are any other men out there who struggle with ida I would like to hear your story.
I think it’s a bit of both Robert. Come on men….speak up!!! For Robert’s sake!!!
It is much more rare for men to struggle with anemia. Women tend to be more inclined to suffer with deficiencies because of menstruation, child birth, hormones, etc which are things men are blessed to be excused from:) LOL
I know you’re right, Erica. It does seem unfair that so many women have to suffer from ida. It certianly has been no picnic for me.
I agree robert the last 3 months for me were so awful…but for now atleast my iron levels are all good and i feel alive now
my iron was soo low i was sleeping 15 hours a night and waking up worse then before i slept
karen glad your infusion went as planned with no complications…it took me 3 weeks before i felt alive and normal again give it time… eat plenty of iron enriched foods
Hi Chantel, I have found that I can live with periodic iron infusions. I received regular infusions for two years while Kaiser was my HMO. Due to an employer decision I lost my Kaiser plan. My new HMO is good, but finding a new doctor, and a new hematologist took about two and a half months. Too long to go without an iron infusion. In the meantime I decided that all the pain meds and sleep medications Kaiser had me on were making my condition worse, so I stopped taking them all. It’s been rough. I will get my second in a series of infusions on Monday (thank God). I have a great new hematologist and am doing much better now. Good luck.
I have suffered from IDA for as long as I can remember, (about 13). None of my doctors informed me that I needed further evaluation. My hemoglobin has always been around 8 literally since I was a teen. They just said increase your iron intake and gave me a list of foods enriched with iron. LOL. When I complained of being tired and not having energy to do daily activities the Dr’s kept telling me I was depressed. They kept pushing anti depressants but I refused and just dealt with the suffering. But about 2 years ago I met a new doctor and I told her I am tired of being tired and she started focusing on my IDA. I have been on oral iron supplements with vitamin c for a year. There has been no improvement and finally last week my doctor referred me for a colonoscopy and endoscopy, scheduled for Jan 13. I will be meeting with a hematologist on Christmas Eve. I pray he can help me figure this out. I have been suffering from headaches, extreme fatigue, weakness, lack in sex drive, grey hair, and irritability, among other things. I am really nervous about everything. I have 3 of my own children and I am also raising my sisters baby. I am so sad, my life has been miserable, all I needed was for someone to care. Will I be alright to care for them after the colonoscopy and hopefully iv iron treatment? Thanks for this blog, I felt alone.
Kimberly i feel your pain. I went through the same situation. No one showed interest until you get to the point you are fed up of feeling tired. I had a colonoscopy done. the prep for it is the worst part. After the colonoscopy they tell you to rest for the rest of the day and next day resume what you normally do ,unless they took a biopsy of your colon or they found something they removed. then you need to have rest and not lift or over exert yourself. I took the iron IV recently and i felt fine. I got one of the low dosages. no real side effects. i plan on doing the rest of my treatments before going to work every week since I didnt get a reaction at all. it all depends. good luck
Good luck Kimberly. I would definitely find some help with the kids the day of the colonoscopy. The meds they give you to make you sleepy will leave you feeling pretty crappy that whole day. And then like Karen said if they take biopsies you won’t be able to lift.
As for the iron treatments…other than them taking awhile the day of you should feel fine. They do take several hours though, especially the first one.
Let us know how you get on.
IDA seems to be one of those diseases (?) that some doctors don’t want to take too seriously. That has certianly been my experience in the past. I know it can be hard to confront your family doctor. When, however, you feel so tired, fatigued, and overwhelmed with the frustration of it all, there are not many other options. I realized that being a man, plus I do treatment for violent offenders, it may be eaiser for me. But if you have not gotten any meaningful help from your doctor you need to let him/her know that you must have a referral to a hematologist. If telling your doctor verbally feels too uncomfortable, consider leaving a note with his nurse or writing a letter. As far as I can tell, no one needs to continue to suffer with IDA, if they can get the proper treatment.
I agree wholeheartedly. It is hard to confront your doc but remember YOU are paying their salary. Even though most of it comes in the form of insurance payments….you are still paying copays and insurance premiums.
And either way they are there to doctor YOU. If you aren’t happy, there are many other doctors out there. Find one that will listen to you.
I have no patience for doctors that play around. I am paying them to do a job and if they aren’t doing it in the manner I work in my daily life to budget and make sure I am on top of things before they get behind, then I’m sure as heck moving on to the next guy who can. And I don’t let them start all the blood work stuff over again. I request it be faxed to myself and to the office I’m moving on to so there isn’t any chance of a mix up. And it helps to know what’s going on with your records. I recently left my family doctor whom I loved because he got so busy I was getting stuck with his back up doctor, who was an old “urgent care” doctor for the last 15 years. He is used to passing the buck and when I went in with severe postpartum depression, at my wits end and considering walking out on my family, his response was that maybe I should make an appointment with a psychiatrist. Hmmm, that’s exactly what you tell a depressed and overwhelmed mom of 4! That was it and I moved on. I will never be put in that position again as a patient and I have found exceptional care in other places since. So you always need to be your best advocate for your health care. If your family doctor isn’t doing it for you, then definitely seek the consultation of a hematologist. And honestly, hematology is a very intricate specialty that a family doctor is usually not willing to or informed enough to order further testing to uncover the root cause of many of issues. Like anemia comes in many forms and to just be told you are anemic isn’t enough. Like I just found out I have actually been anemic since I was a baby and mentioned it to my hematologist and he’s ordering a further study to determine if there are other issues causing the anemia than originally thought. So it does help to get specialized care. Sorry for the tangent. Long day with the kids…LOL
I’m glad you had the gumption to find a new doc and recoginzed you had a problem Erica. Kudos to you. Hope the hematologist can get you some answers as to why you have been anemic for soooo long. That’s a really long time!
Tracey, thank you so much for giving people IDA an opportunity to talk out their frustration and feelings about suffering. You are a low flying angel.
Hello everyone
I have read all the previous posts and glad to see i’m not alone in how I feel. Its so hard and frustrating to relay to people (get them to understand) the concept of not having energy to do anything. LOL Sleeping 10 – 12 hours a day and still not feeling rested or rejuvenated is awful. I have taken iron on and off most of my menstruating years (i’m 41) and only recently was I told that I would always need to take it until menopause. Every time my levels were back to normal I was simply told I could stop taking the pills but no follow up. Then of course when I eventually would get sick again back on pills I go. Hopefully that rollercoaster ride is done this time as i have a new doctor and hematologist. My level was extremely low this time, a 2!! This was the lowest I ever had and only knew something was wrong when my hair was falling out immensely (over the years being tired became a norm). Besides the lack of energy, hair loss and being cold all the time I also feel depressed, cranky and can’t think straight at times. I am going for my first infusion next wednesday and appreciate all the helpful comments. I look forward to having energy and becoming a normal person again. 😉
Deneen,
If you symptoms don’t go away after the infusions. Have the doc check your thyroid. The only time I have had hair loss has been when my thyroid levals were off. The symptoms of hypothyroidism and anemia are almost identical. For me when I am anemic I get out of breath faster. When it is my thryoid, my hair falls out.
Good luck on the infusions.
Regina
Hi Tracey, I recieved my 2nd in a series of 3 iron infusions on Monday. For the first time in months I am beginning to experience my strength and stamina. I hope others will find the same healing for themselves.
After getting my iron levels back to where they were meant to be i got a call today and the doctors or receptionist had left a msg for me to call my doctors back so i did and it turns out my liver function test has come bak ‘slightly raised’ i have to be retested in months time to check it hasnt raised anymore
has anyone had this happen after an infusion?i am worried again now 😦
this sucks and is not fun
Merry Christmas to all. May the season and the new year be a time of peace and healing for all who suffer.
Hi all,
Happy Holidays to all! So far it has been going well with my treatments. My hemoglobin has been getting better and so has everything else. One big set back is that my copay is going up beginning Januray 1. so thats a big downer. another downer is its that time of the month for me and my doctor didnt want it to happen just yet, but you can’t help nature. I hope the treatments dont go to waste now as i have had problems wit my period. maybe a miracle will happen and i get a normal one this time around. Havent gotten use to being poked wit a needle weekly but I definitely feel my energy levels have gotten better. I even managed to cook for my entire family for christmas and not feel drained!
Wish me luck wit the coming weeks! Happy 2010!
May everyone find health, hope, and peace in the new year.
I had my infusion today. The Benedryl put me to sleep until noon and I was done at 2:30. I thought it was nothing. I read, worked on the internet and relaxed for a bit. No worries. I counted my blessings that I was not a chemo patient like the other 30 patients in the room.
I wanted to add that my doctor said you cannot get iron infusions more than once a month or it is dangerous.
Also I wanted to mention some causes. Heavy periods. I have a plum size fibroid in my uterus and have super heavy periods for 8 days each month. My OBGYN put me on birth control pills which helped a bit. I am 47. It is very common after child birth or as you get older for your period to get too heavy for your body to handle. After my blood is good, I will have a fairly new procedure which only removes the lining of my uterus so that I don’t have any more periods.
If none of these problems apply to you, you need to be checked for colon cancer. If a man has low iron they immediately check that.
God bless you all… even Tricia:)
Hi Cindy
I am also 47. I don’t have any children but have noticed that as I have got older my periods have become longer and heavier – just what you need when you’re iron deficient! Do you think as you get older having periods becomes more unpleasant? I used to breeze through them. Now, the knock me for six and I need to rest more.
Hello Everyone
Thank you for the wonderful site. I have been having iron infusions for a few years, I have Crohn’s disease and have problems absorbing iron. Unfortunately, the disease and the resulting problems that occur make you feel very lonely, so it is fantastic to find this site. You all have the same issues as me and I don’t feel like a freak. One thing I’d really like to know is what meds you take when you have muscle soreness. I get back pain that scares the living daylights out of me – what can I take to prevent it. Seems to come on about 24 hours after the infusion. I’m on the Venfor infusion at the moment. Also, I’m being treated by a gastroenterologist. Should I also see a hemotologist to make sure I’m getting the best care?
Kind regards
Claire
(from Australia)
Hello, all.
Just saw an endocrinologist today for the first time to discuss my Ferritin level, which has been low for much of the past ten years or so. I’m tired of being tired and feeling awful. Right now, my Ferritin is at 4.
He would like me to schedule in IV iron infusion for this next week. When I told him I am a bit afraid after what I have read online as far as side effects, he said, “We do these alllll the time … no pain, no side effects.” He told me not to believe what I read online. (… which in some cases, I’m sure is true.)
I really think I will feel better with my iron at a higher level. In fact, I have no doubt. I want my life back. However, I am concerned after some of the posts I have read here. It seems for some, the procedure was not fun at all. I don’t need it to be fun … but I also don’t want to go through hell.
Any thoughts to ease my anxieties?
Thanks,
Lisa
Hi Lisa
Everyone is different, so in one respect your Doctor is correct. Yes there are some horror stories out there but really, you’ve got to take the risk. What if you’re ok? What if you’re better than ok? You may be one that has no pain or drama. But if you aren’t, use the internet to know that you’re not alone and how best to do it next time.
Good luck.
Sorry I haven’t checked in. I was in a horrible car accident and ended up needing to have surgery to have a metal plate put in my arm. Definitely not what I needed right now while trying to get on top of the anemia.
Run down is I had 3 or 4 iv iron infusions between last november and december. I was having them weekly, with my last one the day after the accident and teh day before my surgery for my arm. I was then supposed to take 2 wks off to see how it went. I had a very hard recovery from surgery, still am even a month out, so missed my appt last week and just managed to get in yesterday for my next scheduled infusion. Had bloodwork drawn a couple days ago so we could discuss results at appt. Here’s the results:
CBC results:
Hemaglobin went up from 11 to 12.5
Hematocrit is 38 which is lowest unit on normal range
MCV 79 low
MCH 25 low
MCHC 32 lowest unit on normal range
Platelets were high 2 months ago, but are now in high end of normal range
Bone Marrow Serum (RDW): 17.5 which is quite high
Metabolic Panel results:
Glucose: high 137 (odd for me)
all other random stuff in norm range until we get to iron…
Ferritin:
(10) low, which is a drop down from (11) which was also low 2 months ago before starting the infusions?? Hematologist wants me to get it to 100!!
Serum Iron: 25 (low), but up from 15 (low) 2 months ago
Iron Saturation:
6.8% (very low) but up from 3.3% 2 months ago. He said this needs to be at a minimum of 20% and more in the 30% range.
I was scheduled for weekly infusions, but now for some reason the schedule changed. Right after his appt., I had an iron infusion (I get Venefor infusions) and then I’m scheduled for another appt for bloodwork in 3 wks, then another appt with him 2 days later with an Iron infusion after his appt. No other iron infusions between. Does that seem right? Do you think it’s likely to go up much with the iron infusion I just received.
By the way, even though the infusions bumped me into a normal hemaglobin of 12.5, I’m exhausted all of the time! I do not have heavy cycles and even though I just had surgery, the report shows very minimal blood loss. So not sure why I haven’t received any energy benefit from the infusions yet since it’s been abouy 6 or 7 wks since the first infusion and I’ve had a total of 4 or 5 now in that time period.
Being tested for Celiac Disease right now as well to find another possible cause for the anemia since finding out from my mom recently that I’ve actually been anemic since a baby. I was really hoping to feel better by now. I have 4 little ones, 3 of whom are 3 yrs old and under and I’m just so tired! I was expecting to see a much greater improvement in my bloodwork after this many infusions. Was I expecting too much? Or should more of a jump have been made? These darn things are a bit pricey if they aren’t going to work! My surgery recovery has been really difficult and painful and the car accident was unexpectedly traumatic emotionally that I’m still trying to deal with. Ugh. I just want to get better!
I had three goes at the IV stick… It’s definitely not us… And my infusion took 5 hours which felt like hell because I had a newborn at home who was waiting to be breastfed… We were both being tortured! Now I’ve found out I need another one…
It is so helpful to know that I’m not alone in all these horrible symptoms. My hair is so thin, I’m exhausted all the time, my children get snapped at just for wanting a little attention, I’m cold, my eyes hurt, my bones ache, my kidneys hurt, my brain is a marshmallow and I have nothing to give my husband…. Now I’m stuck on a remote island in Indonesia, don’t know when I’ll be able to have another infusion back in civilization…
Candy,
Have you ever tried liquid iron? There is a liquid iron product called Floradix. It seems to work for me. I had a 12 month follow up from my last infusion series and I am not anemic. The doctor thinks I will be able to go another 6 months. I haven’t been able to go 18 months between infusion for 8 years. I don’t know if it will work, but if you are unable to get an infusion right now, it might be worth trying. I will warn you that it is about $40 for a months supply.
Regina
There have been a couple of new comments to the blog, but I’m posting down here at the bottom so it is easier to find 🙂 I hope everyone is doing well. I’ve smiled to see Regina recommending Floradix now. Wasn’t it you, Regina who was concerned it might taste bad? That stuff is GREAT and seems to be digestible for people who have troubles with other supplements for iron. I’m taking split doses right now and have found a way to make it bearable. I have been on iron supplements so often, for so many years that any smell of it or slight taste of it causes a feeling of nausea. Even though Floradix WORKS for me, I’m noticing that the iron flavor does set of sort of a Pavlovian reaction of nausea which I used to get from the useless iron pills that were prescribed by doctors.
My new regimen is half a dose in the morning and half a dose in the evening with an orange juice chase. The OJ cuts the flavor really quickly. I hold my breath and down the dose, chase with OJ. Then I fill the dose cup with OJ to get every last bit of that expensive Floradix. I can’t waste a bit! Down the hatch. I’m then adding tart cherry juice to the remaining orange juice in my cup. That’s helping with my arthritis. It is delicious and I really consider it a treat twice a day and that helps the Floradix to go down easier, too.
I’ll be seeing a new doctor in late January and will get all my bloodwork done to check on the anemia levels then. I’m doing well, though, after a serious dip in my blood levels in the early fall due to heavy bleeding after a suspected miscarriage. My hair thinned out again, but right now I have lots of little one inch hairs to attest that my iron levels are already stabilizing. I don’t regrow hair if my hemoglobin is below an 8, so I think I have to be at least higher than that at this time. I’m hoping to be close to normal levels in January because I don’t want to have another referral for venofer. Hope everyone is doing well and I’m hoping people will update.
Wishing everyone good health this Christmas Season!
Kimber
Regina,
I want to thank you again for being there to answer everyone when I take breaks from this blog!! Plus my iron issues responded very well to a few infusions and I don’t have nearly the experience you do 🙂 Thanks a million! Hope you had a great Christmas and I wish you well in the coming New Year!!!
Tracey
Hi Candy,
Hang in there. Once you get some iron into you you WILL start to feel better!! The long infusion is not fun but after that it should be shorter if you need any more of them!
Tracey
Hi Erica
Maybe you were expecting a bit much. You’ve had surgery to deal with. I don’t know about you, but it takes me a good 6 weeks to get over surgery. Do you have anyone to help you with the children? I don’t have children, but I have 2 dogs and when I was going thru my iron infusions I almost had to send my dogs to the kennels coz I couldn’t care for them. I think you’re doing very well – perhaps for the moment you should concentrate on the things you’ve achieved because it sounds like a lot. Mind you, I was in tears the other day because I hadn’t “recovered” as quickly as I thought I should. I’m very impatient with myself.
Take care
Claire
Help? What’s that? LOL I’m seriously contemplating a separation from my husband so I can get away a few days a week to heal. I’m a stay at home mom and am suffering with depression and ADHD as well as trying to deal with the trauma of the car accident too. I’m just so over having to explain that rent is due EVERY month on the 1st and the stamps are always in the office and they are self-adhesively applied to an envelope. I am so drained and this accident and surgery seems to have wiped out the last bit off anything I had left in me. I’m 31 years old and don’t even recognize myself anymore. I feel like I’m just slowly dying and nobody gives a darn. My husband’s belated Christmas gift to me was a netbook computer. Nice, huh, since I have a broken dominent arm that’s immobilized in a brace for God only knows how long. The bone isn’t healing, which they say is because of the anemia. *sigh* I just feel so lost and broken right now and it’s crushing. I told my husband I wanted a divorce a couple days before the accident, but he of course blames it on the meds, iron infusions, etc. Couldn’t be the severe exhaustion added by the 6am tapping to iron him a shirt for work since evidently I can iron better with my left hand than he can with his right. Ugh. I just keep holding out hoping that once the anemia is under control I’ll know if I’m feeling this way because I’m so exhausted and fatigued from the illness and taking care of 4 kids, 3 of whom are 3 and under and the oldest is 7 and has ADHD and is mildly autistic or if I’m just ready to make a change that allows me to have a couple days “off” permanently. My body has been through so much. 9 or 10 major surgeries (gastric bypass, 4 c-sections, gall bladdler removal, internal hernia repair 15 wks into my 4th pregnancy, the metal plates in my arm, and darn it if I can’t remember the others right now. LOL! 6 pregnancies, emotionally I’m as spent as a person can be with the loss of our first child at birth and then a miscarriage later on with my 3rd pregnancy, getting married while still in high school to a boy I met for a month who then moved 1200 miles away. We married a few months later a week after I turned 18 yrs old and barely knew each other! I spent most of the summer with him before I went back to my home state. A month and a half later, we decided to elope the week after my birthday because we both had that Friday off with our schools. Insane! Not sure I’ve ever completely admitted how insane! He’s really a great guy, but we are totally different people. I am definitely the “man” of the relationship and I so wish I didn’t have to be. Especially when you need to heal and get your body and mind well. It’s so hard being the only person capable of making decisions or keeping track of the simple tasks like making sure the kids have a drink with their breakfast. Sorry for the vent. I’ve never been so down in my life and it’s especially hard when I was so expecting the energy to come rushing back after 2-3 weeks. The doctor said the jump from 11-12.5 on my hemaglobin is huge, but I just don’t feel a thing yet. I just feel more drained than ever before. I usually bounce back but guess it’s all finally catching up with me, huh?
Hi Erica
Wow – anything I type just sounds twee. You’re in a bit of a state aren’t you? Seriously, though, you need to get some domestic assistance to help you thru, even if it is an ironing lady (mother).
Isn’t it funny how the things you love when you’re well are the things you HATE when you’re not well. It sounds like you’re pissed off with yourself for not healing quickly and you’re taking it out on your hubby.
As my husband and I have grown older I’ve noticed that we don’t have many things in common. However, he makes me laugh, has the ability to look at things in a way that I never could and we dislike the same things. This is important to me – would you want to be married to yourself. Please do not even think about divorcing your man at the moment. Wait until you’re better and look at the situation then. You’re tired and vulnerable at the moment and just aren’t thinking straight. Your love story is the thing of romantic novels – very “Officer & A Gentleman” – all you need to do is get well and live happily ever after. As for the computer for Christmas – lot more useful than a pair of diamond earings! If he’d given you a vacuum – that would have been bad form.
As for your energy – you’ve made great progress with your hemaglobin (I’m very envious) and I’m sure the number of tasks you do in a day would defeat a company CEO. Bet you get frustrated because you don’t always finish the task. Don’t forget to ask for help – your husband cannot read your mind. And when your husband does something for you, don’t crack the sads if he does it differently to you. Just be thankful you didn’t have to do it. Don’t argue with your husband – you don’t have the energy and don’t waste time feeling resentful – again, takes up a lot of energy – that you just don’t have.
Lastly, make sure you get enuf sleep – you’re going to need about 9 hours to get you thru this and it doesn’t have to be all at the same time. Take a nap during the day if you can or go to bed when the kids go to bed and ask your husband to clean up for you.
Hold on – you’re almost there.
C
wow honey,i can relate in many ways but if you dont take care of you then you cannot take care of any one else. its easy to give advice harder to take it especialy with so many cerciumstances that are in your way i just found this site this am. because they sprung the iv thing on me fri to have done today with no info.my heart goes out to you and i pray for you also do you very many suportive friends? heres my e mail if you need an ear i dont know if your alloud to do this on here or not ? but if its gods will it will be done and dont worrie im not a god pusher lol latelysangel@yahoo.com
ericia i left a reply for you in the wrong place im new to this its on clares comment to you sorry
Claire,
So funny you mention the vacuum! I would have LOVED a new vacuum that actually worked since I have to vacuum up after the kids at least 2 times a day. Mine is horrible and I’ve been begging for a new one! And when he was hooking up the netbook he got me, he downloaded a virus on my main PC that crashed the entire computer and it wasn’t able to be saved at all. It just frustrated me to no end. I don’t argue anymore. I truly do not have the energy. I can’t any more. I used to be the fighter, but the fight in me is totally gone. 9 hrs of sleep a day?! My 1 yr old is STILL up all night with colic and digestive issues, so I think I get about 9 hrs of sleep in a period of maybe 3 days. LOL Hubby will “try” but usually in a way that he knows will keep him from having to keep helping. Like when I told him I desperately needed sleep to heal and was told the same by all of my doctors, he agreed to help with the baby at night. His idea of help was putting a full body electric massager under the crib mattress to vibrate the baby all night. Sure was a great attempt, but when I told him that it was a major safety issue to have an electric gadget hooked up to our baby’s crib mattress and running for a number of hours while we were asleep, he said that was the best he was able to do and if I didn’t like it, then I could get up with him. Helpful, huh? He works (3) 14hr days and then has 3 days off. That is his schedule over and over. 3 on, 3 off. He has been more helpful since I asked for a separation and have remained distant for the past several weeks. Of course, he thinks it’s because of my resentment towards the driver that hit me in the accident, which surely some is, but when you love someone, you care about them. Instead of researching wireless mouse gadgets, why can’t he research my anemia or celiac disease instead of writing it off as “if you would just stop taking topamax (my migraine medicine) you would be nice to me again and you wouldn’t complain about me not doing enough.” Why couldn’t that $400-500 in money he spent on the stupid computer be spent on childcare in a facility so I wouldn’t have to worry about taking care of the 3 babies even if it were only for a couple of weeks? Mind you, this is the same man that 4 days after my surgery walked in the house from work and the first question he asked was “did you wash my pants for work tomorrow?” My sister who came to help during that time actually left because she said she couldn’t stand it anymore wanted to teach him a lesson by making him take time off from work to take care of the kids so I could recover from surgery. Well, no such luck. He went to work each day (was Christmas time, so he worked 5-6 days a week 14hr days at that time) leaving me with the 4 kids knowing I couldn’t even fasten the tabs on diapers (2 are in diapers) with no help. I am not supposed to lift more than 1 pound and my baby is 26lbs and doesn’t walk. By the way, he had a week of available vacation time and 2 weeks of paid personal time along with the ability to take FMLA for disability reasons to assit me which was okay with his employer. He said he just didn’t want to “inconvenience” them. Hurt to the core, I tell ya. 13.5 yrs of marriage and while surely I will not claim to be the perfect wife, but if that is just a peek at the way he’s going to help me as we age, then I’d rather cut my losses now. lol He did finally take a couple days off when I told him I was going to collapse in pain because I couldn’t take my pain meds because I couldn’t safely take care of the kids and be on narcotics, so I was calling Dept of Children Services to come get them to have someone care for them in respite care until I was able to care for them again. We have no family to help and the only hired help we’ve been able to secure in our area is a 15yr old teen that creates more chaos than help unfortunately. She just can’t do it and even as desperate as I am, I am not willing to put my kids in an unsafe situation, you know. It just stinks when you feel like you are laying on the ground begging for help from everyone around you that is supposed to love you and once they realize you aren’t able to do for them anymore, they don’t even see you anymore. It’s incredibly devastating as the caregiver for so many years.
Anyway, when it comes to the anemia, I’m going to give it more time. I had my infusion on Friday and it burned really bad going in. Does that happen for the rest of you? I had a lab tech blow a vein in that arm the day before, so that may be why it hurt so much and all my bloodwork and IV’s can only be placed in my left arm now that my right arm is broken and braced up, so maybe my veins are tired too. Saturday was okay, but today, I am hurting all over. Very sore in my bones and muscles. I’m extremely tired, but not sure if I’ll have a chance to sneak in a nap unless the 3 babies decide to nap at the same time today. Oh how wonderful that would be. I am feeling a bit fluish with like a head cold and was up coughing last night, but hoping it’s just allergies and will not stick around. I usually get my infusions and after about 24-36 hrs start feeling like this and it lasts 4-5 days and then it goes away. Does this happen for you guys? I just had a mild menstrual cycle last week that I think is draining me a bit, but for some reason, still having occasional old blood discharge. Never had that before, but surely just stress related. My 7 yr old is out of school on Monday and that day is also my youngest baby’s 1st birthday. I don’t even have the energy or desire to get him anything or throw him a party. I feel so bad! This last year has been so hard physically! I didn’t celebrate hardly celebrate anything with my kids this year! Even their birthdays! Their birthdays are May, July, and August (of course now January) but other than singing happy birthday, we kinda just skipped them. In late August, I went to a thrift store and just bought a car load of toys for all of them and when I came home told them that we were going to celebrate their birthdays right then. LOL I didn’t wrap anything or take tags off or even clean them. Just brought in toy after toy and while they are young and they won’t really remember other than our 7 yr old, I still feel bad about it. Are any of you this drained? I am tired all of the time. And I do wonder why my ferritin dropped even though my hemaglobin raised quite a bit. Could that be from internal bruising from the surgery, broken arm, car accident, etc? Thanks for the ear! I don’t have anyone that speaks “grown up” around me, so without the internet, my socialization is limited to toddlers and medical personnel. lol
Hi Erica
Sorry for not getting back to you in a more timely manner. I’ve been back at work this week and after 5 x 10 hour days sitting in front of a computer the thought of getting on my home computer just wasn’t doing it for me.
How are you feeling now? Has the iron infusion kicked in? I had an iron infususion about 10 days ago and had shocking back pain about 2 days afterwards. It has settled down and I’m beginning to feel much better. I’ve been amazed that I’ve been able to work full time and not crash in a heap at the end of each day.
How is your arm going?
How is your home life? Have you been able to get any extra sleep? I decided to take my own advice and get to bed early all last week – I wondering if that was why I was able to get thru the week. Of course going to bed at 9.00pm isn’t ideal but until I’m 100% I’m going to try. It has been pretty hot here in Australia the last week so coping with that is hard.
Anyway, take care of you (nobody else will!)
C
Hi Erica,
Yes I can identify with all of your lack of energy and feeling wiped out. How are you doing now?
Kim
Kim,
I’m starting to think the infusions might be starting to actually work finally as I’m not experiencing the extreme fatigue and overwhelming depression as I have been. I have never been in such a dark place in my entire life as I have been since starting the infusions 2 months ago. I mean, DARK! I have repeat bloodwork in 2 more weeks to see how it’s doing. Off to get my screaming baby! He totally needs to get over this colic!! He’s a year old now!!
Erica,
I guess im not alone in the marriage department. don’t feel too bad..unfortunatly we get stuck doing everything while the hubbies just lay back and enjoy life. the 2nd day after having gall bladder surgery, i was still unable to move without feeling pain..guess what hubby did…went out wit some friends to a strip club didnt come back til late…how nice..u learn to not give a crap about all that and worry about urself. i kno you have children but you have to be selfish as well. u need to take care of yourself to be good for your children who need you the most..well maybe hubby will appreciate you when you are passed out on the floor of exhaustion..unfortunately that happens some times. but i wish you the best and just have some patience and let things roll off your back..its not worth the stress and think in the moment..im sure your children will understand if you aren’t 100% later in life they will realize all u did for them and be grateful for having a mother like you who is strong willed. i use to let things bother me when i was so weak and all it did was make me depressed. if u gotta do something do it and thats it..cuz its just something that u have to do…and pace yourself…lucky you don’t have to work ..my mom has a full time job, 4 children , one autistic, is involved in church heavily and has to tend to a father similar to your hubby and at times she crashes..but its all about patience.
Hope you feel better…the more stressed you are mentally the slower it will take to heal
Hi,
I have been anemic with B12 and Iron deficiency.
I kept thinking things would improve until finally I felt like I was dying and it wasn’t until I forced my Dr to listen to me. I was so accepting in the past of him/her telling me to buck up and that it was a real body mind connection only enhancing my severe guilt for my low energy and bizarro symptoms. Finally I demanded to see the Hematologist and I am so low that she put me on Iron IV fusion/Venofer right away twice a week for ten weeks. Can you believe that Drs would try and tell me that my symptoms didn’t warrant sending me to a specialist. I take a lot of the responsibility b/c I was so down on myself…felt like there must be something wrong with me psychologically and to know that I could have from the start …had this treatment. I can’t wait to live again. To take a shower and get ready for my day and not feel like I am going to pass out everytime I stand up. Thank you for this site as I am eternally grateful after reading all the posts that I am not alone and there is a solution.
Hi Kim
I felt the same back in November. I couldn’t get out of bed, I kept coming down with colds and bronchitis. Although my specialist knew there was a problem he was reluctant to do anything about it. Wait and see was his approach. My local GP had to intervene and get him to act. Like you I’m enjoying having a shower without a chaperone (to make sure I didn’t faint) and sleeping without waking up with the sound of my heartbeat in my ears (blood pressure very high). I was on the Venofer once a week for a while along with blood transfusions. I’m now on monthly iron infusions and slowly (very slowly) my energy is coming back. I’m sleeping a lot to help my body recover and I’m feeling better when I wake up. Previously, I was sleeping but felt as stuffed when I woke up.
Take care, you”ll get there.
C
Hi everyone,
It’s great to see that I’m not the only one with these odd problems. 😉 I had a series of 8 iron infusions a few months back after dealing with anemia for many years. That helped so much and I felt like a new person! The problem now is that I think I might be anemic again, just 2 months later. They had to stop the last infusions early (I needed 10 of them) because I was having such severe body aches. They don’t really know what’s causing the anemia.
Any ideas of what they would do if I were anemic again? Has anyone had to go back after just a few months? My hemo. originally told me they last a few years. Thanks!
Hi Grace
I had to have 5 iron infusions each week to get my iron levels up back in November. I am now getting monthly iron infusions, probably for the rest of my life. I have active Crohns disease and they think that the disease is using my iron stores. I had an iron infusion in August that I was alergic to and when I went to have my blood tests in September none of the iron was to be found in my body. Seems I had flushed it out of my system. My iron infusions have never lasted a few years but again I think that is due to the Crohns.
In answer to your question, they may try another form of iron. Do you know what kind you had? The Venfor is supposed to be symptom free but I’m not so sure – my back/hips were pretty sore for a few days after my last infusion. I worry about how I’m going to go with the next one.
Claire
Thanks Claire! Good to know about the Venofor. I might ask about that. I had received Ferrlecit. I had leg pains after all of them, but they became debilitating after the 8th one. I’m glad to know I’m not the only one who runs out quickly, although I don’t seem to have a reason for it like you do. Thanks for your help!
I am due to go for my first iron infusion/transfusion on Wednesday. My Hemoglobin is at 5.7 and dropping (was at 6.1 in December) my other levels are 4 for Ferr? and 9 in the absorbtion percentage? I haven’t been given too many details =- is it ok to eat before?
How long does it take to feel a difference?
They are working on finding the cause – ruling out one by one. So far it’s because I have had 3 kids – WOW!
They have also said this one “powerful” infusion will be all I need for the rest of my life (i’m 44)
doesn’t sound like any of you had that result.
Good luck with your iron infusion Katy. Just remember that everyone is different and you may breeze thru your iron infusion.
Should take about 3-4 weeks to notice an improvement. Again, everyone is different.
I think a lot of the people on here are on the Venfor which is for people who have had reactions to the other kind of iron. Venfor is infused in smaller amounts over a few weeks.
I’ve been receiving Venefor for the last couple of months and I have a lot of aches and pains all over. Especially my hips and legs and lower back. I always get like a head-cold or feel like I’m coming down with a flu with it too, but my hematologist said it’s the one that will cause the least overall symptoms. It burns when I get my infusions (like the infusion going in) for at least half of the infusion time, but when I get them at least weekly, my body seems to adjust to the iron and not burn as much going in. I usually go about 36-48hrs with no symptoms after getting my infusion, but then the side effects kick in and last 4-5 days. Usually they end just in time for the next infusion. LOL Just my experience with Venefor so far. I’ve received it about 6-7 times now and while my hemoglobin has risen well, everything else is about the same or I even had a drop. But did have unexpected surgery for a car accident, so hopefully we’ll see a more positive outcome soon. I’m just now noticing a lift in my overall energy, but still struggling to get through my days. I have been anemic since I was a baby, but have had 9 or 10 major surgeries in the last 7 years as well has giving birth to 4 living children, losing 1 baby mid-pregnancy, and losing another baby in an early pregnancy in that time period as well, so I think my body is just extremely tired!
Good luck with the infusions, but don’t get your hopes up. I was expecting to feel better in a few days after my first infusion and here I sit 2 months after getting my first infusion and I’m just now thinking I might be feeling like I might be noticing a difference. It takes I think 120 days for your blood cells to reproduce or something like that, so I guess being patient is necessary to allow it to work out. Take care and be prepared for the potential side effects and tiredness that you’ll feel from the infusions. I was kind of devastated that I was absolutely exhausted for those few days following my infusions, worse than had I not received the infusions, but perhaps it was because my body was getting to work on doing something with all that new iron?! I have more bloodwork in 2 wks, so I will know more then:)
Wow, happened across some random bloodwork that was done on my daughter at her 15 month check up and she is anemic in all the same areas I am!! The doctor NEVER said a thing to me and she’s 2.5 yrs old now!! This was obviously before I knew that my anemia was something that I also had since being a baby, so I’m going to have them take more bloodwork on her. I cannot believe they never flagged that it was an issue that she was anemic at 15 months old!! What’s the point of doing bloodwork on a baby if the pediatrican is going to ignore the abnormal results?? Now I’m definitely thinking it’s a hereditary condition now that she is coming up anemic as well.
hi claire i was wondering where in australia you are and which heamotologist you saw?
i am also in australia on the gold coast
the specalist i saw was great and would reccomend him to you
hope your feeling better
Hi Chantel
I’m in Melbourne. I’m going to see someone who works at Box Hill Hospital.
Mind you, it would be nice to pop up to the Gold Coast to see a doctor. I’d love a nice weekend looking at the sea.
Also did anyone get side effects of really low iron such as tingling in random places of the body like arms face cheeks and legs?like an itchy tingling sensation?
Hi Chantel
Funny you should say that but yes I did. For me it was itchy legs, back and shoulder. I thought it was the soap I was using so I changed to a non perfumed sorbolene soap and reduced the heat of the water. It sort of helped but now and then when my iron is low it still gets a bit itchy. I normally take a hay fever tablet when it gets bad.
Well I had my infed infusion – Other then low blood pressure related they thought to the bendaryl seemed to go ok.. The arm I had the IV in got very tingly like it was asleep as well. However still very tired and it seems I ache everywhere. I am only sleeping about 5 hours a night and even then very restless. I did have a breast biopsy done about 2 weeks before my infusion (benign thank goodness) but there is also swelling at the incision sight. Per the Dr. Iron tends to infiltrate any areas with injuries/scars and that’s the cause of the swelling.
The muscle soreness does feel like a flu coming on or something and sometimes its actually a sharper pain like when I am walking the dogs and they pull a bit much right where my legs join to my torso – ouch! Oh well, sometimes I think the being tired was better as it was only 1 symptom.
I go for my next blood work with follow up with hematologist on 9/9; hopefully some better results. I did talk to the Dr yesterday when I called about the swelling and they told me I will probably need this annually. Where as the hematologist said this was once in a lifetime dose… We will see. Even with insurance, /I have a deductible and it ran about $1000+.
Hi Katy
Glad to hear that it went well. I read somewhere that low blood pressure can occur during an infusion of Venfor. It seems back aches can also occur – so nothing unusual there.
If your symptoms are still troubling you, take a couple of ibuprofen tablets. I also find putting heat on your back can assist, such as a hot water bottle. I find that the pain can last for 2-3 days so after that time you drop the use of the ibuprofen and just rely on the heat. Oh, I also use voltaren gel on my back to get relief too. Do you have that in the States?
I also find that walking the dogs does help so keep that up if you can – maybe one in the morning and the other one at night. I find getting into the car can produce the same ouch factor. Thanks heaps for the information about your back pain. I was worried that was suffering from osteoporosis symptoms.
And lastly, try to get as much sleep as you can to allow your body to heal. I wake up every hour on the hour when I have my infusions. I get up and get a drink, go to the toilet and then get back in and try again.
Good luck, you’ll be feeling better soon – just don’t overdo it when you do feel better – remember to pace yourself.
C
Hello, I just went in for my second IV treatment and its still new to me. I had low iron at a 6, and managed to get them to a 12 and its been an uphill battle for about four years. Literally, I eat well, exercise when there’s energy and I’m in generally good health. I just feel like I’m carrying bricks around all day. I have ONE fibroid. It got as huge as a grapefruit and surgery was not an option for me because of the kind if fibroid. Embolization didn’t seem like an option either, after researching it didn’t seem to cure anything and would just create another fibroid. I thought a hysterectomy would do more harm than good, and I’ve never met anyone who has had one and come out better for it. So I suffered for a couple of years until FINALLY it was suggested I take iron via IV since the supplements were not working. Literally this is what feels like a last hope. So far so good, except I just had my first period after getting the infusion and it was extremely HEAVY. Has anyone else experienced that?? I really want this to work because I am so sick and tired of being tired. I want my life back.
I’m so glad I read everyone’s comments. I’ve been anemic for years and the iron supplements are not working. My anemia is due to surgery. I was told that I need to see a hemotologist and probably get iron infusions. I’m definitely scared but I hate always feeling tired and drained. What kind of bad reactions can one get from the infusions?
Just wondering…Has anyone had to have a bone marrow biopsy because of iron deficiency anemia? I’ve read that it’s common for other types, but I’m trying to figure out if it would be necessary for ongoing iron deficiency anemia. I want to get to the bottom of this problem!
Hi Grace
I had to have one about 4 months ago. They needed to know if my bone marrow was working properly. Turns out it is. I think they also check the shape of your blood cells. Not altogether sure of the importance of that.
If you have a bone marrow biopsy make sure you’re sedated for the procedure. I didn’t have sedation at it was quite difficult to lie still when in so much pain.
Also, the internal bruising of the site lasts for a few months, so when you have an iron infusion the site where you had the biopsy hurts that little bit more, as per Katy’s comments on January 29th.
Kind regards
Claire
Grace,
I have had iron deficiency anemia for more than 10 years, and have not had a bone biopsy. I have to admit that the doctors haven’t tried real hard to find out the cause of my anemia.
When I was a teenager I had a bone infection. I did have a bone biospy at that time. It was very painful, but the bone they used was the one with the infection. I second the recommendation of a sedative.
Regina
went in for my follow up after my labwork last week. My Iron is up to 9.1 from 5.7 and my .09 is now up to 900+. The other level was at 4 and is now at 45 – one was ferratin the other I can’t remember. But they want me back in 6 weeks as it didn’t go up as much as they thought it would. I am still not so sure about them saying this is the only one I will ever need. If it is still low they want to start looking at doing a colonscopy or other tests to look for internal bleeding….
Congratulations Katy
Sounds like a pretty good result. I would love a result like that. After having 8 iron infusions my ferratin level went from 5.9 to 7.7 – big deal! Mind you, I did have 2 very heavy periods in one month – 10 days apart. My Doctor has decided to give me iron infusions every 2 weeks and I have to go on the pill to regulate my periods. I had an iron infusion this morning and am just resting this afternoon.
Has anyone ever had a result where the iron infusion didn’t work? What did the doctors do?
Erica – haven’t heard from you for a while – are you ok? How’s your arm and your iron levels?
C
Dee,
Yes, my thinking get muddled when my iron is low. I think slower. And, I make more mistakes at work. My theory is that the iron in the red blood cells carry oxygen to the brain. When my iron is low my brain isn’t getting enough oxygen and I just don’t think as well.
For me the cloudy mind is one of the first symptoms to go away. It usually takes from 1 to 2 weeks after the infusions for me to realize I am thinking better. I start having more energy until about 3 weeks after the first infusion.
Good Luck
Regina
Hi Everyone,
I have been on Venafor for 4 weeks now going twice a week ..I have six weeks left. My Ferratin was a five like a lot of you. I am so glad that there is a solution. I really felt like I was dying.
Dizzy, light headed, cloudy thinking. I am only 44 and certainly wasn’t ready for dementia…ever since I began the IV infusion I have felt better and everyone said I look alive again. You know those deep dark circles under the eyes…mine were like purple. they have started to go away. My hands and feet are not ice…I am not only eating saltines…(pica) I developed due to the Anemia a compulsion to only eat saltines. My hematologist told me that is really common with people who have anemia…sometimes people eat chalk even. Thank God there is IV Infusion.
I can’t wait to see what my levels are like next week. I have such compassion for everyone on here…I send good wishes out to all of you and please know WE are not alone. I would love to talk with someone through email. I don’t know anyone who has been through what we have.
Take care,
Kim
I’m glad I found this site. I have IDA and currently undergoing Venofer IV’s once a week for 5 weeks. I’ve done 3 already. The first two weeks after the infusions I got bad joint pain, leg pain and crampy feet. I understand this is somewhat normal and my doctor gave me pain meds. But last week and this week I’m having horrible EAR problems- my ears are clogged and I hear a rushing sound inside my head. I went to the dr last week and he said my ears weren’t red inside indicating an infection and that it may be a side effect. It is driving me crazy, I feel awful, and I have 2 more treatments left- and 5 days after my last one I have to fly cross country. I’m scared that my ears will be plugged up and flying will be horrible. Has anyone had this problem??? Any suggestions what to do? I’m taking Sudafed and Flonase, that’s what the dr recommended. I was doing ok the first 2 days after the last infusion and now I’m miserable. I’m starting to feel off balance from my ears being so messed up and feeling very uncomfortable.
kim talked about saltines – mine was Ice. I did read somewhere that was a compulsion from low iron. funny thing is looking back on it I have been chomping on ice cubes for years. Now I can’t be bothered. Same goes for Diet coke – used to drink 3-4 at least a day, now maybe 1/2 cup every other day. Strange things. Still get an occassional dizzy sensation not sure if levels are dropping again. It’s only been a few weeks. I did get the comments on color in my face now and not looking like a ghost.
Mine wasn’t the venafor but the hi dose Infed Iron – luckily I wasn’t allergic just got major aches and pains. Wish you all luck and keep posting!
Kim i know exactly how u felt…i was so pale and had the really dark circles around my eyes..i didnt know what the hell was going on with my body i’m only 22!!!!I had just about every symptom because the low iron went on for some time before they tested me for it (slack!!! i know!!!!)
feel free to email me anytime
i hope your iron has gone back up!!!
Thanks so much Chantel.
I am feeling a bit better. Have you ever been told that you might have a Thiamine deficiency. As if this isn’t enough? Just curious. I am being tested for Thiamine deficiency since my dizziness is still there after all the iron IV’s ..My iron went up to a whopping 75 after treatments.
Kim
How soon do you go back after infusions are over? As I mentioned above, I finished a series of infusions a few months ago, and I already feel slightly anemic again. I don’t think it’s really bad. I’m not totally exhausted, but I’m more worn out and the ice pica is gradually coming back. Should I go back now or do I wait for it to get worse? I’m not positive I’m anemic again and don’t want to go for no reason, but if it’s bad I don’t want to hold out either. What are your tell-tale signs that anemia is back again?
I am going to chime in on this one. When I first started the infusions about 10 years ago I was lucky to go 6 months before I was anemic again. Ten years later and I am going about 14 months.
In my case part of the problem was food sensitivities. The more compliant I am with my gluten free and peanut free diet the longer I can go between infusions. I also was put on the birth control pills where you have less periods per year. And, that made a difference as well.
If you have any symptoms that didn’t go away once your iron was normal look into those symptoms.
Regina
I am just starting to get treatment. I will check in.
I am going for my 4th infusion since January 2006 this morning, I stumbled accross your blog when I was googling ways to pump up my veins because my 1st infusion I was stuck 6 times before they called the GURU of sticking over to get it right. I have a fear of that happening everytime I go. I don’t have the best veins in the world but they should never put someone through that. Now the same nurse does mine and they use a pediatric cath (talk about taking a long time). Nice to know you are out here, will visit again
It is SO nice to find a place where people have experienced the same symptoms/problems I have! I’m sorry anyone has to go through this, but relieved to hear that I am not alone! I have thought I was dying for weeks now… only to find out that my fibrin/iron levels are at a 4 and I need iron transfusions.
I am so relieved to have HOPE that there is an end in sight. My cloudy, foggy brain, low energy levels, extreme fatigue/ sleeplessness in spite of taking Ambien, aches/pains, and general feeling of ‘crazyness’ (not literally, but figuratively) have had me extremely worried. I pray that soon I will be feeling better! And I pray for you all too…
grace if u are not feeling 100% or feeling under the weather see your doctor and ask for a blood test done to check your iron
i go bak in april as itll be 6 months since i had my big infusion
i dont know if ill wait that long as the last 3 weeks ive been super tired ( unsure if its the heat here or not) but it’s not a good sign
let us know how u get on
chantel
New to this board. Hemoglobin hovering at 10. Ferritin 2, iron 30, ibc 404 and iron sat 7. Going to hemo next week upon rec of internist and gyn. What are thoughts on Venofer and with those levels am I a candidate? Oral suppplements ie slow fe wreaked havoc on gastric system. Have similiar physical symptoms to those mentioned by others on this board. Dr feel I shouldn’t be tired with hemoglobin at 10. Are there better iv infusions than Venofer or newer? Does insurance cover? Thanks in advance for your input.
Sherri,
When I just start getting anemic I get real tired. My primary is always surprised that I can tell that my iron was getting a bit low. She thinks iron stores are just “gravy” and that the size of the blood cell doesn’t really matter. The hemotologist understands a bit more.
The only oral supplement I have been able to tolerate is Nu-iron.
The others on this site may know more about the different types of infusuions. I know that sometimes the doctors will try different “brands” until they find that one that works best for the individual.
My insurance does cover the infusions.
Good Luck
Regina,
Thanks for your reply. Is that iron supplement available only thru prescription? Does it bother your stomach? That has been the issue over the years as I try iron(even a women’s 1x a day with iron).
Sherri,
Yes, it is by prescription. It is a prenatel iron suppliment. I had to change doctors and the new doctor didn’t even know about Nu-iron. Just don’t let the pharmacy talk you into the generic version. It is not the same.
I am one of those folks that will have stomach issues with just about anything. And, I had no trouble with Nu-iron.
The only reason I had to stop taking Nu-iron was that I wasn’t absorbing enough of the iron. I was on 3 times the normal dose with very little improvement.
Hi Regina
Was checking on line and see you can order Nu Iron; maybe they have changed the guidelines. How do you know if there is an iron absorption problem? I do not eat enough “iron rich foods” supposidly and that is why my counts are so low. Will be anxious to see what my intial consult with hemo will reveal. I also learned that iron must be taken with an acidic stomach and I am on zantac and nexium for laryngeal reflux .. therefore it has probably negated at positive affect on iron stores/levels. At this point I dont think even a radical change in diet would help restore both the iron and ferritin levels enough. Very frustrating…..
Thanks for your reply!!!
I was on Nu Iron about 10 years ago, plenty of time for the powers that be to change the guidelines.
We figured out it was absorption problems when I just didn’t get enough iron out of the pills. Even at the high dose.
If I had to guess what the hemotologist will do, I would guess that he will send you for infusions. Get your iron levels back in a more normal range. Then you can try a diet change and/or Nu Iron to see if your iron drops again.
Hang in there.
So it would of been 6 months in april since my first infusion i went bak in december to my heamotologist…and my iron restored 100% and all levels were fine…i was meant to go bak april for blood work to test my iron once more (would of been 6 months since the infusion) but the last week or 2 i have been feeling tired again achey and just not myself so thursday gone i went to my doc and asked for my iron to be checked…the receptionist called today from my local GP and told me the doctor has looked over my results and i need to come in on monday to talk about them im guessing my iron is really low again and im going to need another infusion…it’s really worrying me because it was only 2 months ago in december my iron was fine so i dont know why its dropped again within 2 months has anyone had this problem before????
could it just be i am anemic for the rest of my life now and going to need infusions every few months but with no under lying cause????
im so worried for monday….i don’t understand it at all
someone plz let me know if u have had anything like this before…
Hi Chantel,
I am new on the board so please excuse any redundant questions even though I did try to read all the posts.
How low were your hemo, ferritin and iron? Did you have just one infusion last April? Between April and Dec were you on oral supplements?
I will go to my intial consult on Monday with hematologist due to chronic low levels but internist still believes it is diet related. Oral iron hurts stomach and is counteracted by the ph levels of stomach as I am on nexium and zantac. So am anxious to see what his thoughts will be on my bloodwork. Have a history for over 10 years of tests so he can review. I do respond to oral supplements but as soon as I go off of them the iron levels are then very low.
My concern is how long will an iron infusion keep the levels constant and how often will I need them. Lots of questions but this board has been amazing to help with a better understanding of how others address their iron deficiency.
Take care!
🙂 Sherri
Hi Chantel
Sorry that things aren’t going well for you. I had a similar issue a few weeks ago. At Christmas things were looking good and I was responding to treatment and then in January I had my blood tests done and my haemoglobin had dropped from 8.4 to 7.7. My iron had also dropped to an all time low of 3. My doctor has increased the iron infusions from monthly to fortnightly and I have been put on the pill to regulate my menstral flow. I am also going to be tested for celiac disease. We still don’t know whether I’m using up all the iron stores or whether my body is rejecting them and just flushing them out of my system via my kidney’s. I have had to give up work completely and my life has a great big question mark over it. I can’t even drive at the moment because I’m so fuzzy brained and can’t concentrate on the task at hand.
Good luck on Monday.
Hi Claire and Chantel,
When docs decide on infusion… must hemo be below a certain number? Also I realize that iron store and ferritin stores are different. Is one more critical when the numbers are analyzed? Trying to understand all the different tests so I can intelligently discuss with specialist on Monday. As pills have not been a viable option; thinking that infusion may be next decision. Concerned how often that is; can you drive yourself to and from or is benedryl etc also added?
Thanks for everyone’s kindness and speedy replies as I just found this board.
🙂 Sherri
hi sherri it will be 6 months in april since i had my first and only infusion
i was reccomended to take iron supplements orally but didnt …
there is no reason why my iron could be low again
or could there?
can it just randomly drop?>
can i ask where abouts you are sherri?
how long have u been having infusions for?
HI Chantel,
Good luck on your appt tomorrow. Anxious to hear what choices are made to help increase your iron levels. I am from the US. Tomorrow is my initial eval at the specialist as my internist believes that infusions may be the best option at this point in time. Up until now I have tried various iron supplements that have all really bothered my stomach. So will fill everyone in tomorrow on the results of the consult!
Thanks for caring!
Sherri
hi claire thanks it just sucks doesnt it?feeling so tired and run down for no exact reason
im sorry u have had to give up work completely and stop driving
how long has it been going on for for you the low iron?
thanks ill let u both know how i go tomorrow
where abouts ru from claire?just getting an idea…
would definitely reccomend the heamotologist i have if anyone is near or in qld he is great and helpful
Hi there,
Had my initial evaluation/consult with hematologist. Decided to start Venofer and had first infusion today(while I was there). Took less than an hour from start to finish and actual iron iv was only 15 mins. Will have this every week for 6 weeks and every 2 weeks will have blood checked.
There were no pre meds or meds given along with the iron ; only had saline bag while waiting for iron to arrive from pharmacy to the infusion area.
Dr was not terribly concerned with hemoglobin of 10.4 or low /depleted iron and ferritin stores. Did believe that combination of zantac and nexium totally negates any absorption of oral iron supplements as oral iron needs to have acidic stomach. Therefore my attempts of tolerating the oral iron were futile actually. So I drove myself to hospital and home with no problems at all.
How’d everyone else do with their appointments?
Well I went in for my results to my doctor note: (not the doctor i dealt with last year when my iron first started dropping and getting dangeriously low) anyway this doctor told me my iron is low but not really low as it was last time i needed an 8 hour long infusion…so hes told me to take fefol iron supplements one a day for 3 months (no idea why for 3 months?!?) but i am still sleeping atleast 12 hours a night and feeling tired…does anyone think i should get a second opinion?i just dont feel right…???
Hi Chantel
I think you should go back to your doctor who first diagnosed you last year, if possible. What are your haemoglobin levels? They are more important than your iron levels.
The fact that you’re still feeling tired would suggest that a second opinion is needed. I also note that your tummy is playing up taking the fefol – you may not be able to take the iron orally so you will waste 3 months waiting for an improvement that doesn’t happen. If you think you’re tired now, imagine what you’ll be like in 3 months.
Hopefully now that the really hot weather in Australia is over we’ll both start feeling a little bit better.
Take care
C
I’m not sure if its the supplements or not but i have been feeling sick in my tummy to..do the supplements do that?is it a side effect?
HI Chantel
I have tried various iron supplements for years. Even the ones with supposidly minimal stomach distress caused problems. That is why I ended up not taking them. Had my first infusion this week since as an IV it bypasses your gastric system so no problem. Plus I found out that my zantac and nexium for reflux were really preventing ayny real absorption of the iron supplements. Do you know if your hemoglobin has dropped? PS my infusion of Venofer is 15 mins (1x per week for 6 weeks)
hi claire
i have a pathology report with blood test results on paper infront of me but don’t really understand it and there is nothing on here that even mentions hemoglobin??is there another name for it??
i dont want to feel stupid getting my iron tested again and be told it is still fine or low but not extremely low but the past 5 days i have been sleeping 12 hours plus a night and waking up feeling awful and crappy
i hate feeling this like this
Hi Chantel
How about Ferritin? Ferritin should be between 30-300. Iron should be between 5-30 and haemoglobin should be 115-160 – depending on the pathology lab.
Chantel, you never come across as stupid – in fact, you’ve always come across as very sensible. You gave me some good advice in February about going to a haematologist and I was very glad you did because the Professor I saw gave me some very good advice and I’m starting to feel better.
I think you know your body best and if you’re feeling like crap a second opinion or blood test can’t hurt. Just make sure they test your ferritin and haemoglobin as well as your iron levels. You can have high(ish) iron but if your haemoglobin is low the oxygen just isn’t getting around your body and to your brain. Might be a good idea to get your white cells and ESR checked – you might be fighting an infection that you’re not aware off.
I’m having my blood tests this week and an iron infusion on Wednesday. I HATE needles – ha ha.
Let me know how you go.
C
HI Chantel
Have you been able to interpret your lab work. Do you need any assistance maybe we can help?
How are you feeling?
Sherri
Claire
Good luck with your infusion tomorrow. I had my 2nd one yesterday and it went smoothly. It is venofer and the actual infusion of iron is about 15 mins which is added to the initial bag of saline.
Let us know how everything goes ! :)Sherri
Hi Sherri
Had the infusion. This is number 9 of the venofer and so far so good. I take a hayfever tablet before I go, and hopefully I wont suffer any backache over the next couple of days. Had my blood tests done yesterday and get the results from my doctor on Monday. Here’s hoping for a good result.
It took nearly 4 hours to get the infusion, nearly 2 hours of that was waiting at the hospital. Very numb bum!
Hope you’re still feeling ok. I can get a bit sore on the day after the infusion so I hope you’re ok.
Just stay calm and relaxed (if possible).
C
Hi Claire
Hope you are feeling ok. As I reread most of the posts I learned that you are in Australia.. interesting that both our countries are using Veonfer. I am also jealous that you are hopefully having nice weather.. as we have had lots of snow(way too much) I wonder why my iron infusion is only for 15 mins; unless it is because it is weekly? How long is your infusion for? When you say you are sore the next day do you mean body aches or your arm? I was lucky that the nurse got my vein (same vein..although arm had turned a rainbow of colors) very quickly compared to last week. (diff nurse). She used warm compresses to get the vein to pop up. I did not have any bloodwork but will have next week. They can run the tests right there in the lab while I am there to see the progress. Is this your first series of venofer and do you get it weekly? As my hemoglobin was 10.4 I hope we see quick results . Yes your hemoglobin was very low so your iron and ferritin must also be depleted. Did they get the results for celiac sprue?My iron and ferritin stores Ferritin 2, iron 30, iron binding capacity 404 and iron saturation 7 aren’t horrible therefore I am looking at this more like a preventative measure.
Let us know how you are feeling and what side effects you observe.
🙂 hang in there
Hi Sherri
I get 265mls of iron infusion and it is supposed to take 1 hour, but because I suffer from backpain afterwards they take it slower – 2 hours. I get my infusions on a fortnightly basis – I think my doctor is taking the slow and steady route to ensure that it gets in and that hopefully it stays in. Unfortunately, in Australia you have to go into hospital for the infusion and it always takes a long time to be admitted, to wait for a bed, to wait for a doctor to insert the drip and for the nurses to monitor you and then for the doctor to come back at the end and sign your release papers.
Well, I get my blood test results tomorrow. Wish me luck.
C
HI Claire,
Here we go through outpatient at the hospital and the nurse sets up the IV and monitors. You do have a specific day and time to come so that there will be an available chair in the infusion area. Do you know why you get back pain when the iron runs faster? Is it venofer? As I mentioned mine is a saline drip and then they add the 15 min small bag of iron; wait for line to clear and that’s it. All in all I would say once you are in the chair it takes 1 hr. Sometimes the longer wait is in the outside waiting area at the hemotologist’s office. Let us know how your results are. Good luck! 🙂
Hi Sherri
Not sure why I get back pain when the iron runs faster. It may just be all in my mind and I may just be a hypercondriac nutter. Hard to say. Anyway, they do it slow and so far things are going ok. Got my tests back and there has been a slight improvement. Not a great improvement, but an improvement – my haemoglobin was 77 and this time it was 87. I’m consoling myself with the fact that it is at least staying in my system – so I’m pleased about that. The old form of iron that I was taking just flushed itself out of my system. Ferritin levels are normal and iron levels are up from 3 to 4.
I’m not sure that it is called Venofer here in Australia but it is the iron sucrose mix. I am allergic to the iron maltose mix. The iron sucrose mix looks like Coca Cola.
My next session is next week. When’s yours?
C
hi hows everyone going with there iron?
i found out why im so tired and my iron has dropped…i am PREGNANT!!!!
Found out yesturday it does answer alot for me including being exhausted and tired
just thought id let you ladies know how i’m going..
Chantel
Yes alot of those prior mentioned symptoms may be explained due to your pregnancy… especially the gastric issues and tiredness. Will you still get iron during your pregnancy ? Is this your first baby? Congrats and hopefully some of your questions have been answered now. Hope you are feeling a little better!
Sherri
Hi Chantel
Well, that would explain things! Congratulations! How exciting. Are they going to be able to give you infusions while you’re pregnant or are you going to have continue with the iron tablets?
Anyway – when is the baby due?
C
HI Claire,
Yes my iron iv bag looks like coca cola. I can tell when the saline mixes with the iron as it does burn going in. Good to know that it is working for you too; as I was thrilled that after 2 infusions my hemoglobin went up to 11.5 (not sure of conversion factor). The day I do get my infusion I find myself coming home and feeling very chilled. I then fall asleep for a couple of hours.
So I don’t find any of your symptoms unusual and probably the slower drip will alleviate any potential problems for you.
Now I understand that the hemo will restore first then the irons stores (iron and ferritin).
How many more infusions do you have and are they still every other week? How often do they ck your blood counts?
Be well
Sherri
Hi Sherri
I’ve noticed that a few of the people who have made comments on this site refer to discomfort at the iron going in. I don’t seem to have that – I have a very long canula that goes into the vein – it gets a bit uncomfortable but it doesn’t seem to burn.
My aim is to get to 11.5 – here that is classified as the lower end of the normal range. I’m going to have a party when I hit that number.
Thanks for the information about the iron and ferritin – they never fully explain what goes up and when. You get snippets of information so it’s good to be about to talk about it.
When I come home from my iron infusion, I have a hot shower and then go to bed with a hot water bottle for the rest of the afternoon. I find that I really need the rest. I then get up and take my dogs for a walk and then cook dinner and have an early night – either reading or watching a bit of tv. I find that if I rest on the day of the infusion, I generally don’t get the flu like symptoms, including backache, the next day.
Looks like I’ll be having fortnightly infusions until the middle of June – oh joy!
Hi Claire
I think the discomfort may be combinaton of the push of the meds in 15 mins along with the consistancy change of the iv infusion from straight saline to the iron mix. I didn’t think there would be any side affects that day so I really thought I was imagining my symptoms. At this point I am scheduled for 3 more infusions for a total of 6 as my count was between 10.1 and 10.4 so I was low but not very very low. I was happy with the 11.5 to see the progress in a very short period of time. Do you use a hot water bottle like a heating pad as I know that I have it on my back after treatment. Sometimes I think that I am so tense before and during that my muscles just need to release and relax. Keep us posted on your progress!
🙂 Sherri
I’m seeing the hematologist on Monday, because I am pretty sure I’m anemic again. (After just having finished my iron infusions a few months back!) But, I was wondering if anyone has experienced a tingling in their hands or arms because of anemia. I’ve been feeling some tingling on and off for a few weeks. It’s not major, but it is strange since I have never had it before. Is it related to iron deficiency anemia? I don’t want my dr to think I’m crazy!
Hi Grace
Not so much tingling in my hands/arms but in my feet. That was when I was really anemic but now my levels are up a little bit it seems to have passed. I also had heart palpitations when my iron levels were low. Thankfully, that has stopped now too.
C
HI Grace
Have you had any blood levels taken since your last infusion? Hopefully the results of your next test will confirm whether the anemia is back.
The tingly feelings in your extremeties(hands/feet) can be a peripheral neuropathy. I have the same tingling (more so in feet.. which are always a lovely shade of blue). This is a circulation issue vs hematological issue. An arterial doppler can identify the bloodflow to your feet to be sure no obstructions etc. Basically I was told it is called Raynaud’s Phenomenon(harmless but often annoying) Maybe you can read up on it and ask your dr when you have your visit.Your doctor will not “think you are crazy”! Keep us posted!
Hang in
Sherri
Hi everyone:
I just wanted to report that I was found to be thiamine deficient as well. That is a B1 Vitamin and it can give the same symptoms of Anemia. Extreme fatigue/ dizzyness/ low blood pressure.
So it turns out I am Iron/B12 and B1/thiamine deficient. That is why I was craving those saltine crackers…they have thiamine in them. So now I am going for a Thiamine Injection regimen that will last for 14 days every day. If you are still feeling like (&*__*^_ after IV infusion…keep checking…they found it in a Vitamin / Blood test.
Thiamine deficiency can lead to a lot of trouble with brain function…..It is called Beriberi…never heard of it until I was diagnosed. Hope Claire and Chantel are doing well…Hi Sherrip
Hi thanks yea first pregnancy..suprised and shocked
currently i dont need any more infusions and im on elavit which is a pregnancy supplement which has iron in it
thanks for the congrats guys 🙂
hope everyone is well
congrats chantal on your pregnancy. hope you and your baby have a healthy 9 months.
I was wondering, were you having trouble conceiving prior to you getting infusions? i did some reading and found some tihngs that insinuated that if your iron is real low it can affect the blood even trying to conceive. My husband and I have been having trouble conceiving. I have been anemic since i got my period at 14 and are abnormal. my dr came to the conclusion that i am anemic because of my period and have been having infusions for the past 3 months. my iron is stabilized now and feel way better . It has been over 4 years since my hubby and i have been trying with no luck. for a moment i thought i was earlier ihs month but it didnt happen. do you think that it could be b/c of the iron deficiency anemia? i checked myself and found that i am able to get pregnant but dont ovulate everymonth (again abnormal periods). hubby is just hopeful (but hasnt gotten checked..yeah i kno wat ur thinking y not…lets not get into that). just wanted to see if u had trouble conceiving cuz maybe you can give me some insight
Good to hear from you Chantel
Hope you are feeling well!
🙂
Keep us all posted
Grace
If your infusion is venofer.. maybe it will be similiar to my infusion. They start with saline, then when the pharmacy sends up the iron mixture (venofer) it is then hung next to the saline bag and runs simultaneously for 15 mins. The line is then removed and that is it. Every other treatment; a blood sample is taken to test the hemoglobin levels. Mine went up after 2 infusions and I had my 4th of 6 on Monday. I find myself very achey the following day and dont know if side affect others feel. The afternoon of the infusion I usually just have a headache(prob just from stress)and just take a hot bath and a nap!
🙂 good luck and let us know how it goes for you
Hi Guys.
I feel so much better now that I am receiving my Thiamine injections for the next two weeks. It was a combination of the low iron and the B1 deficiency. I really thought I was dying. Blood pressure was 80/60 on a reg basis..Everytime I stood up I felt like I was going to pass out. Tired beyond belief..conversations were difficult. I can’t believe that it was this easy to fix. Wishing everyone good health today and to Chantel..Congrats on being pregnant.
I’m waiting to see if my infusion will happen today (Newton Wellesley)… I’ve been so weak and crummy feeling that anything has to be better than this. Thanks for posting your blog so I know what to expect….I wonder if I can bring my laptop? Or at least my iphone as my book is on there…
My iron levels were sub 9 in the fall and down to 8 now… my GI is checking into celiac. I’ve been taking oral iron for several months but no luck. Prior to fall of 2009 I had normal iron levels so not sure what’s up…. I had 3 pregnancies from 2000 – 2004 and nursed all my babies for at least 18 months (last one for 30 months) so that can deplete iron too….but he will be 6 next month so it’s been over 3 years since I’ve been taxing my system like that.
Won’t get to eat today as my GI has scheduled a colonoscopy tomorrow afternoon. Wahhh no coffee. 😦
I’m more than a little scared but trying to stay calm–I’m frankly too weak to freak out right now!
April,
Good luck today, and tomorrow. Don’t get too freaked out by the infusion. It is a real basic procedure. The length of time you are there will depend on the type and how much iron you are to recieve. My treatments always take right at 4 hours. I am allowed to take books, laptop, phone and just about anything else that I need or want. The nurses will take good care of you. And, remember that as the iron absorbs into you system you will start feeling better. It usually take two to three weeks to really notice a difference, but it will happen.
Regina
Hi April
How did your infusion go? I am on my last infusion of venofer (1x a week for 8 weeks). Each week they pushed the venofer so it ran quickly (15 min w/ saline). This week a new nurse ran it for 30 min since she had inquired about side effects and mentioned some of the minor ones. She believed it might help reduce them and it did. My hemoglobin as gone from 10.1 up to 11.9 and stored iron(ferritin) up to 38 which is the highest in probably 15 years.
At least I know now that my problem was absorption of oral iron supplements. After the 8th infusion I will have 5 weeks off followed by a visit with the hematologist and blood levels measured. That will determine the future protocol. Will be quite nice not to get weekly. Let us know how it went for you.
Hope you begin to feel better soon!
Hello bloggers! I’m so glad I found this page! I started reading through some of these and decided to post my own story. Any advice is welcome!
I am 25 years old, generally healthy female and have been “anemic” all of my life. Last year I went to the Dr. for heart palpitations, thinking it was stress related and my life has revolved around iron levels and blood counts ever since.
My Dr. did an EKG and the normal heart murmur I’ve always had showed, but nothing new. So he did blood work- over and over again for a few weeks. My platelets, WBC, RBC, Iron and B-12 were all very low. He sent me to a blood cancer specialist who wanted to do a bone marrow biopsy, but opted to do another series of blood tests over a 6 month period first.
He thought the low levels could have been caused by some virus that had since passed? (Thank God it wasn’t lukemia). I was taking 2 feosol tabs 3 times a day for the 6 months and he finally said things were normal enough to go back to my regular Dr. “Cured?”
I ended up switching to my BF’s doctor since mine had gone into sports medicine during this time period. The new doctor was concerned and when he saw the blood work from my “healthy” diagnosis he said the blood levels were a little better, but not near the normal range yet. I was very discouraged, angry even.
I willingly let my new doctor run tons of blood tests, and in concern for my kidneys (after high doses of feosol for 9 months) he also did several urine tests. Now the results are in and he has done phone conferences with my old doctors, read through all my medical history and examined my latest lab results.
He wants me to do this “new treatment” which it sounds like many of you have done. He recommended an Iron Infusion every other weekday for 2 weeks. It seems like many of you only had one infusion, some of you two… but 5 or 6????
What can I expect when I go there, how can I expect to feel after? Will I be useless for 2 weeks? Any support and advice is greatly appreciated… this seems like scary stuff!
Also, what if I don’t do this treatment? The Iron supplements, iron packed diet, feosol in every form all failed… can a person survive with severe anemia? I don’t feel bad, possibly because I’ve been used to it my whole life and my body has adapted, but long term could I be in trouble?
Thanks so much and God bless!!!
Welcome to the group! Honestly, I wouldn’t hesitate about doing the infusions. I was supposed to have 10 of them in a 4-week period. It all depends on how anemic you are, and the type of iron they use. I made it through 7 of them before having side effects. (Don’t worry, you probably won’t have any problems…things like that happen to me!) I felt better within 2 or 3 weeks. I didn’t think I felt that bad before, but I think it was just because I was so used to feeling worn down. I noticed a huge difference when my levels were up. While they were a pain, I was so glad I did them. I was sorry that I wasted my time with so many drs who didn’t take it seriously and I spent so many years feeling run down!
Now that I’ve read on a little more I see that some of you have had several infusions that puts me at ease a little. I have tiny arms and rolling veins so I’m not looking forward to the IV… yikes!
Welcome Flybird
As Grace mentioned, if the hematologist recommends iron therapy it is probably the best thing you can do for yourself. You didn’t mention what your hemoglobin is or ferritin so hard to tell how anemic you are.
I am having my last (series of 8) infusion tomorrow. It was every Monday for 8 weeks. These infusions of iron are called: venofer which is a newer form of iron iv that is safe and efficient. My hemaglobin and ferritin(stored iron) levels rose slowly yet steadily into the “low normal” range. After tomorrow I have 5 weeks off –yeah!!!! then a recheck of levels and visit with hematologist. Again dont worry about how many infusions or how long it lasts. Each protocol is different. My nurse explained that venofer can run no faster than 15 minutes so they of course run it for 15 minutes with the saline drip. They tried running it for 30 minutes last week and some of the minor side effects were not evident.
As a 51 year old woman who has struggled with iron deficiency for years I hope that you have success with the therapy and start to feel better! I know the doctors just kept telling me to eat more iron and take slo fe(form of oral iron). Evidently I had poor absorption due to gastric issues(taking zantac and nexium). So I could have kept going that route with no positive outcome.
Keep us posted on your progress. And I have tiny tiny veins.. and with the butterfly needle there have been minimal problems. Drink alot of fluids the day of your iv, have them put a hot pack on your arm prior and have the crook of your arm(elbow) elevated. (tricks they taught me!)
🙂 Take care. Sherri
God Bless the person who started this blog!
My story is different from everyone on here. I had my first of 3 infusions yesterday. My neurologist sent me. I’ve been seeing him for Chronic pain & fibromyalgia. He believes that the transfusions will help to decrease my pain & muscle spasms & to increase my energy levels, due to low iron levels (I’m borderline anemic).
I understand about the lethargy, but Has anyone experienced body pain
due to low iron levels? I hope that I’m doing the right thing. I want to trust that my dic knows what he’s doing, but it’s hard when I can’t find anyone else that’s going through the same thing.
My pain levels rite now, are through the roof. OMG! I rested when I came home, but I didn’t sleep well. Advil didn’t help.
Also, my IV site is very sore. As a matter of fact, my whole arm is sore. Is
this normal? During the infusion, I got muscle cramps in my arm. Has this
happened to anyone else?
I don’t have family in the area & I don’t want to overburden my friends. Thanks for letting me vent.
Yes I experienced a lot of pain while getting the infusions. I had 6 total, 5 once a week, then I skipped 2 weeks due to a wedding and had my last one when I got back. I had very bad pain in my legs, but also all over pain, just very stiff and sore. It’s been almost 2 months since my infusions and I don’t feel that much better even though my iron levels are normal. (well they were after 5 infusions, not sure if they stayed that way). I’m incredibly frustrated, wondering if I have fibromyalgia or chronic fatigue syndrome because now I’m showing symptoms for both of those. Add torn ankle ligaments and a bruised heel, and what fun! But I would say yes, I do experience body pain from low iron, but not sure how it relates. During my infusions I was taking vicodin for the pain.
Maggie,
Has your doctor checked you for thyroid problems? The symptoms of a thyroid problem are almost identical to anemia symptoms. The only way I can tell when it is anemia and not my thyroid acting up, is that I get out of breath more with anemia.
Hi Arleen,
Hope you are starting to feel better. Are you getting venofer as your form of iron iv infusion?
I have completed 8 weekly infusions and my hemaglobin has responded wonderfully and up over 13. Additionally, I am back to exercising; not to my previous levels but took a 45 min walk today with no feelings of breathlessness or racing heart rate. That is a major improvement. I found that by not exercising that I found achey and lethargic. Once I got moving again I discovered more and more energy. My problem is also a diet that needs much more iron to maintain these ideal levels of hemoglobin. Even the stored iron levels(ferritin) have begun to creep up. I did find myself achey the day of and after my infusion and the nurses said often patients do better with a slow infusion rather than a pushed like mine was in 15 mins. The minimum amount of time for my infusion was 15 mins and that was what they were doing. Sure my arm has bruises and the vein in my right are was unable to be used for all 8 infusions. Luckily veins were located in the left arm but not as accessible. A week later my arm is now changing colors of the rainbow but hey it’s a small price to pay. Now I am on hiatus till end of May when my hematologist will recheck the levels to see if my body was able to maintain. At that point he will determine the future protocol on the infusions and whether I can go to monthly or whatever he finds appropriate.
Best wishes!
Sherri
Ah one more thing.. I found that even during the 2 months of infusions… if continued to do alot of stretching, arm weights, crunches etc. I was not attending aeorobic classes but did want to stay limber etc since I have sciatic issues. But I am back on the treadmill trying for just 20 mins a day to increase my endurance. Important to keep moving as weight bearing exercise is critical to help prevent/ reduce osteoporosis.
So when you feel a burst of energy just go take a walk … enjoy!Sherri
Regina,
I am going to have my thyroid rechecked next week. Last time my doctor did only a TSH test and I don’t think that was enough. I have “fired” her and going to a new dr….do you know what tests I should have done? That very well could be the problem, I have been on thyroid meds before.
Maggie,
My thyroid doc does a TSH and a T4 test. Make sure you get the results. I had one doctor that thought just barely in the normal range was good. But, I still felt bad. The normal range at that time was 0 to 5.0. My thyroid doc wants my TSH to be between .5 and 1.5. I feel the best when my thyroid is about 1.0. The normal range was changed not long ago, but I don’t know what the new the numbers for the new range.
Good luck
Very interesting reading.
I had my first iron infusion one week ago.
My ferritin level was 7. After 6 months of oral iron suplements my ferritin was 12.
I’m wondering how long it takes to start noticing an improvement and start feeling ‘better.’
Hi Kirsten,
Do you know what type of infusion of iron you had? I found that after my 7th weekly infusion of venofer I felt “peppier” and definitely increased stamina. Everyone is different so it is difficult to predict but my hematologist had prescribed 6 infusions and then added on 2 more. My ferritin has gone from 3 to 38 and hemoglobin from 10.1 to 13.2. Those are major improvements!
Feel better!
🙂
Sherri
Thanks Regina! I’m going to have my doctor do any lab work they think might be possible. After a week of having no symptoms, they came back again last night. Low grade fever, chills, bad body ache, headache, sore throat..I’ve been dealing with this for over 6 months now and it’s ruining my life!
Maggie,
If you have to push your doctor. Sometimes they just don’t understand how bad you actually feel.
Good Luck.
Hows is everyones iron levels going?
Hope your all well xo
I am severely anemic and have tried oral iron pills and they did not help. My doctor prescribed iron shots. Has anyone had these before? I am hoping to get started on them tomorrow. Am tired of being tired and out of breathe. Lately have started having chest pains. Hope it gets better and not worse. Will let you no how it goes.
Hi Jan
the shots don’t last long…3 months max …will help a little short term..but you will know when it wears off. the chest pain is what i had too…although the doc thought i was exaggerating…it is what i think called tryin really hard to breath with a low hemaglobin……no iron = not much oxygen in the blood…….hence more stress on lungs and breathing…even thinking …etc
get the infusion done instead…… yes the process is uncomfortable during and a little after , but a week later you will be walking up hills like there is an angel carrying you. What more can i say. Good luck and i hope you are well soon too.
I really appreciate this ongoing blog..thank you to all who contributed. I spent about an hour scanning through all the posts and will go back to read more in depth. I will be starting IV iron therapy on Monday and will be having the venofer type. I’m scheduled for infusions on Mon, Weds, and Fri of next week, then Mon and Weds of the next week. I’m then to have a blood draw at 3 weeks and follow up with my doctor a couple of days after that. I am SO hoping I don’t have reactions to this medication. I feel bad enough already and my kids need me to come home able to continue seeing to them at least to the level I currently am and NOT less.
My hemoglobin is currently around 7 but I was dehydrated when they did the test, so I think I am probably in the 6 to mid six range really. I’ve suffered with iron deficiency anemia for most of my married life. I have tried every way to get better care than what was being offered and I get so discouraged with the entire medical establishment sometimes. I went in to see our family doctor this week intending to ASK for the IV therapy and surprise! He offered it. Now if only it goes well and brings up my levels. He seems to feel I might be to a 9 hemoglobin in 3 weeks and if I am tolerating the treatments, I’ll do another round at that time. He thinks I will need about 3 rounds but will be using iron supplements and iron rich foods even as I’m doing the therapies. He said the goal is to get my count to a good 13 or 14 so that I have a padding for those months when my period is heavy. Sounds good to me.
I was glad to know that for most of you the first visit for therapy took a little longer. I know now to have my son who is driving me bring along entertainment and I’ll take a book myself. The doctor said normally the infusion will only take about half an hour, but he was not including prep time and such. I am thankful to have a better idea of what to expect after reading what all of you have experienced.
BTW…I am not driving right now because of the foggy thinking. Have any of you suspended your own driving until you felt better or had a doctor suggest that you should? I drive 5 of my kids around regularly and this is not easy for me, but I realized I am NOT being wise with them to drive right now. They are so precious to me I just can’t risk it. Are some of you driving because you have to get yourself to work? I am not sure HOW I would manage if that were my situation! Please, those who are severely anemic, consider if you are risking an accident which even if only a slight one actually can be FATAL if you are severely anemic. By the time a lab processes your blood, you could be in dire straits after even a simple accident where you take a hard knock or get a deep laceration. Remember that if your HGB is already at a 7, you are considered to be only functioning on half your red blood cells. You are already in trouble! Be careful everyone!
Interesting that there is so much discussion of gluten and wheat intolerance. I recently saw a naturopathic doctor who is sure I have at the least a gluten intolerance, but feels it also could be true celiac disease. I’m considering trying a non gluten diet to see if that gives me any easing of fibromyalgia and RA symptoms. I seem to always be trying SOMETHING and so few things work. But this natural doctor said that many people who have fibromyalgia or rheumatoid arthritis are helped by avoiding most grains. I figure it is a reasonable thing to try, but I’d like to see if this iron therapy gives me a boost in energy first. I don’t feel I have enough gumption in me to even try changing how we eat at this point.
Again, thanks for the site! Will come back and read more very soon and will update after I get my first infusion.
Warmly,
Kimber
Good luck on your iron treatment.
When my iron was the lowest I wanted to give up driving. But, when you have to get yourself to work you have to get yourself to work. I did make sure that I took it slow and easy. But, it would have been different if my home town were larger.
When you try the gluten free diet you have to go about 3 months before you really start to notice a big difference. My cousin noticed a slight difference after 3 days. Here is a site where I was able to get a lot of information http://www.csaceliacs.org/ . The magazine “Living Without” is good source for recipes http://www.livingwithout.com/ .
Regina
Pensacola, FL
HI Kimber
How are you doing? Let us know how things went with your first infusion. My last one was a month ago (venofer ) and after about 8 or 10 weekly (15 min) infusions my hemaglobinwent from 10 to 13.8 . The hematologist was thrilled. Now waiting 90 days to be retested.
Hang in there.. you will feel better soon.
Are you located in the states? It appears that different countries and areas have different rules and regulations with the meds etc. It is interesting to compare.
Sherri
PS how’s everyone else doing????
Thanks for asking Sherri. Glad to know your HGB is up so well. Good for you. Hope it stays up as well!
I had my first infusion yesterday and it went really well. My biggest frustration of the whole day was losing two new magazines I really really was looking forward to reading. Sat them down at the desk and my son went right back to get them and they were gone. She SAID she put them in the magazine rack, but they were not there. So I am out two of my FAVORITE magazine. So you can see, it was a petty thing that was the height of the whole experience.
It took a little while to get the insurance paperwork in order and I was frustrated to find that I have to check in through the registration desk EACH visit. That will take my experience from being short and quick to taking how ever long chance makes it because I will have to sign in behind every other person in the waiting area. BLEH! 😦
The infusion itself was 20 minutes. No biggie. I got a bad taste in my mouth as soon as the iron began to infuse and popped a strong mint in, and by the time the mint melted, the taste was gone. Thank goodness. Then my arm ached above the infusion needle and felt cold up to near the shoulder, but it stopped as soon as the infusion was done and removed. The RN said that the infusions are given so quickly that it does sometimes irritate the vein, maybe because it is colder than blood is. It was uncomfortable, but not painful and as soon as the IV was out, it stopped. I felt fine when I got home. No problems at all. I have a little bruise on the top of my hand. I really don’t want her to reinsert the next IV into that spot, but I don’t like the idea of making a row of sore spots or of getting the other hand used next time, but it has to be done.
Hope this works pretty quickly. I get a new blood test in 3 weeks and then most likely will need two more sets of the IV therapy.
Have you noticed you have a lot more energy now that your counts are up? Hope so!
Warmly,
Kimber
Hi Kimber!!!
My biggest issue was getting my earbuds to stay in my ears!
A few things I learned from my experience with venofer. Usually they start the IV first with just saline. I always have them use a vein in the crook of arm(inside). The hand has a bigger tendancy of post neuralgia with nerve endings.. My problem is that they used a butterfly needle to reach veins which were deep and thin. The good vein finally built up too much scar tissue that they had to resort to the other arm. They put a warm compress on the area first to help bring vein to surface along with a towel under that part of arm to raise it. The venofer itself can run for as short as 15 mins but I later learned can be put on a longer drip rather than a push. My side affects stopped once they stretched out the session to 30 mins. Not sure what you mean by a set of shots. The venofer infusions I received were 1x a week for about 8 weeks. Then I had a 1 month break and 1 more infusion. Now I am 4 weeks out since last infusion and will be rechecked in 8 weeks. My energy level does seem increased as I can treadmill 1 mile a day. Are you located in the US?
Keep us up to date and msg me if you have any other questions or notes to compare. It is nice to know that you aren’t the only one with iron issues
🙂 Sherri
Sherri,
Thanks for your reply. Yes I am in the U.S. I am having my venofer on a very different schedule than what has been posted by people here at this forum. I have 200 mgs every other day for a total of 1000 for one round. The doctor is saying I will need at least 3 rounds.
I’ve been slow in getting back on here because I’ve had to deal with some side effects on top of already not feeling well. It seems like each visit I got a new set of side effects and now just feel really discouraged and still don’t feel any better from the treatments. Of course I started my period on Friday and that makes me feel like I’m losing progress steadily.
The doctor advised taking ibuprofin to curb heavy bleeding but it has just made my period worse in other ways than just heavy. This morning I had cramps so bad it felt like late labor. I bent over and just bawled because clots are not a fix to heavy bleeding. You still have to sort of weigh up that you are passing a good bit of blood when passing large clots. If anything, it gave me a BETTER idea of what kind of period I was having. It was just WAY too much. The doctor believes that once my iron counts are back into a good ranger that my period will actually lighten up. Hoping he is right.
I did ask the IV therapist to place the needle into a bigger arm vein and it worked really well for that first day. The next time when she tired to place it, the vein sort of had a spasm and bent the needle at first. She just kept playing with it until I wanted to scream 😦 Finally the needle did advance even and she got a good blood return then was able to start the IV. I was terribly nervous that I’d get iron leaking into my arm or something and end up with yet one more complication, but it went ok.
Side effects I’m having are intermittent low grade fever, deep bone pain, dark brown urine for the first couple of times I urinate after the infusion, urinary tract irritability and diarrhea. It has NOT been fun but I am determined to at least stay the course for this next round of therapy.
I am “off” this week and will get my blood work done early the next week and then will see the doctor 2 days after the blood draw to receive the results. I hope my monthly cycle will not have affected the results much.
How is everyone else getting along? I’m anxious to be done with this but I think it is going to be a long road.
Kimber
Wow Kimber that sounds like a lot. I am getting 200mg 1x a week for 8 weeks. What are your numbers at (or what were they at when you started)?
I haven’t been feeling great, but I also started taking Chantrix to stop smoking, so it’s hard to tell what is making feel so HOT and just not right.
LOL maybe it’s menopause , but I don’t think what I am feeling is a “flash.” It lasts and lasts.
I hope you are feeling better soon.
Hi Barbie,
I don’t know what my ferritin level was but the doctor said I have no iron stores. I will ask him what the numbers were last time when I go in for the new set of results. My hemoglobin was less than a 7. He said it was “less than” 7 because the day I had the blood draw I was dehydrated. It was low 7 even with the dehydration. I think it scared him a little bit because he was guessing I’d be around an 8 or 9 on hemoglobin and I told him I knew I was lower than that from the symptoms.
I tolerate anemia and even large blood losses better than most do, but once I get to a 7 I am not able to go up and down stairs without becoming breathless. That is usually my first clear indication that I’m in trouble.
Hope you also are feeling better soon. Update as you can?
Kimber
hi Kimber, your post seems somewhat very similar to what im experiencing, My last hb check was 7.5 and my doc said my ferritin was less than 4 and undetectable. ive had the iron transfusion a few days ago and although I seem to tolerate the anaemia better than most , I had symptoms of heart failure and infection where I was hospitalised for about a month. But beyond this I really dont feel much except im often told I look pale and pinched. has your situation improved yet? the only thing is the doctors cant find the source of the iron deficiency depite having done so many expensive tests , they cant find it . pleasee keep us updated
ahhhhh I must be somewhat different due to the fact I had WLS. My HGB is only marginally low at 12 and my Ferritin ranges from a 3 to 5. From what I can gather by the posts here it take 3 weeks to see a change in numbers (or feel better). This weekend I go for my 3rd infusion, so the following weekend will have the important numbers and I will report back.
Hi, I hope it’s ok if I jump in here as well. Hospitalized this time last year with anemia (7 hemoglobin) and given two units of whole blood… felt like a million bucks, for a while. Finally .levelled out at around 10 hemoglobin and haven’t budged since so hemtologist has me doing 4 rounds of Infed over next 4 weeks, first round was today. I am feeling antsy and can’t sleep and wondering if that is result of the steroids.
For those of you with tiny veins, I have tiny veins too (took 3 sticks just to get enough blood to test) and she sent me for a PICC line. While getting the PICC line put in was no fun it was also not so bad, and while it’s a little inconvenient for the next month it’s better than being stuck a gazillion times to try to get the IV started.
I’m hoping to feel better soon. I want that million buck feeling back.
Updating as promised…..
Went Saturday for third infusion. As always, uneventful (a good thing), but my Ferritin is up from a 3 to 73! That is after the first two infusions. I have 5 more to go.
Barbie
That sounds like you are making progress. Typically the hemo is last to drop after the iron stores/ ferritin have been deplenished. I am now 2 months without getting the venofer and will be rechecked in 1 more month. Hoping that the 8 weekly treatments have kept the hemo above 13 which was the dr’s goals.
Once the ferritin levels are down to like 3 like mine have constantly been your body then starts to use the circulating hemo as the storage is gone. So any climb in levels is always positive.
Keep thinking positive!
Sherri
How’s everyone else doing???
Welcome Kat. Hi Barbie…it is great that you didn’t have any problems with your last infusion. Keep that up! Yay on your ferritin level 🙂
Sherrie, I do hope your levels have stayed up as you are hoping.
Update for me: I had my blood draw today and get the results tomorrow when I meet with my doctor. My period was pretty awful again, heavy and just all around a problem. I had started using the ibuprofin as was recommended by the Dr. and it seemed to delay the period from starting well and caused large blood clots. I woke on day 3 with the most horrid cramps that felt like late labor really. I didn’t take more ibu after that and once the clots passed, the flow was back to fluidy levels with lots of flooding. :sigh: BUT I noticed that as my period wound up I seemed to be having a little more energy or FEELING at least that I was having energy. Still am on limited activities until the doctor gives me the go ahead.
My last infusion was sort of a mixed bag of being “fine” but I came home and was running a low grade temp. I also thought I was having a fibromyalgia flare, but I guess it could have been the muscle and joint pain that can accompany the infusions. I was terribly tired, I know that for sure and it took about 3 days to feel recovered from the experience.
I asked the doctor if we could run a test for wheat allergy/intolerance and he doesn’t want to. Call it a hunch, but I just feel my anemia is related to not absorbing my nutrients. He always rolls his eyes if I ask him to do any test other than those he wants to order. I’ve gotten to where I am afraid to approach him about other tests. My sister told me today I should change doctors and GET THE TESTS I want. I was fortunate I think to get a doctor who finally took my anemia seriously. I’m afraid to keep switching especially when I am in mid treatment right now for the anemia.
I suspect that when anemia is running our lives rather than us being able to run it, it is very easy to become complacent. I just don’t have the strength right now to buck the system or spar with the doctor. I just want to do this therapy and then figure out where to go from there. I am just feeling that I got to the end of my rope, you know? I tied a knot in it and tried to hang on, but I’m just so weary.
After talking with a friend about the ongoing health issues I decided to go ahead and begin eating non gluten and wheat free and let that guide me. If changing my diet in that way effects a change, then I am going to assume it was celiac disease. Since I can’t get confirmation any other way, I’ll have to do what I know to do. I did a mineral analysis a few months ago and I am depleted on many vital nutrients to a level that is quite concerning. I think that calls for me trying whatever I can think to restore my own health. But sometimes…I just get so tired of having to do it myself.
Sorry for the extended whining session. Hopefully I’ll perk up with some good news to report after tomorrow’s appointment. I’m just trying to figure out how to deal with this in the best way I can. It would be so nice to get my counts restored through the therapy but then to get to the bottom of what all the causes are and address the issue, rather than trying to treat the symptoms.
My best to all. Hope everyone is recovering energy and wellness.
Warmly,
Kimber
Hello,
My iron level wasa 4 so my doctor (hemotologist) suggested IV Iron therapy and I must say afterwards (Ive only had one) I feel actually worse, I’m just truly worn out…fatigued. Has anyone else has these symptoms. This is so frustrating, I’m so tired of being tired!!!! Thanks!
~~Monica~~
Monica,
When you say your iron level was a 4, do you mean your ferritin level or are you speaking of your hemoglobin? My ferritin was a 3 on my first blood draw and my hemoglobin was less than a 7.
I just had my blood draw to retest after IV iron therapy and the hemoglobin was 11.5 which is just below normal and the ferritin was in the low 70’s which the doctor said was also just only a bit low.
To answer your question about the fatigue…YES…I was extremely fatigued after my first and 2nd iron infusions. When you are severely anemic it sometimes is about all you can manage to do just getting to the treatment and sitting through it. I sometimes had chills after and had to always come home and take a nap. I saw that other women who posted here had similar issues. It takes at least 2 to 3 weeks for you to begin producing healthy red blood cells in the presence of that infused iron so it makes sense it will take you a little while to feel better.
Don’t get discouraged just yet. It feels like a long haul to recover from severe anemia but you WILL start feeling better. I’d encourage you to make sure you have a cleared schedule for the rest of the day after you have an infusion scheduled so that you can rest and nap. As you improve you may not feel as poorly just after the infusion. I had more symptoms as I went along that replaced the ones I had at first. I really don’t want to post them to you right now because I don’t want you to think you will do what I did. All of us handle it differently and you may have no other problems at all with your infusions.
Hang in there, ok? Hope you start having some more energy very soon!
I’ll come back and post the rest of my update very soon. I had really good results with my infusions but I did find out that I won’t be able to have any more due to the insurance. The doctor intended that I would have one or two more rounds of 5 treatments each until my hemoglobin was a 13 or 14 but the insurance only paid for it while it was “severe” anemia. Because my blood work showed I had improved to an 11.5, the insurance refused to pay for more therapy because that count is NOT severe anemia. So…they got me MOST of the way better but won’t see me ALL the way better. That is the story of my life with health care situations from doctor care, hospital care and insurance issues. I’m not discouraged though. I’ll figure out another way to get myself to that 13 or 14 !
Update when you can, Monica 😀
Warmly,
Kimber
Awwww Kimber thank you so much for replying now I don’t feel like I’m losing my mind…I’m going to go home and show your post to my fiancee because he’s was like what is wrong with you, you weren’t this bad off before the IV, now it seems like you are going in reverse. So now I know I will have to just be patient and take my time and listen to my body, when I’m tired, just chill and relax. I’m not sure what level it was that was a 4. My primary care doctor referred me to the Hemotologist after trying me on a couple of oral iron supplements that I couldn’t tolerate and I went to the Hemotologist two weeks ago, they drew blood and gave me what I needed to provide a stool sample to make sure there is no blood being passed there and when I came back two weeks later, as soon as I came in he (Hemotologist) just said you are severely anemic and I asked him what my iron level was and he said it’s a 4 and sent me next door to the infusion center. The Hemotologist suggested that I get three or four infusions before I come back to see him and once I do I guess I’ll find out if there is any blood in my stool. My concern is to find out where the blood loss is coming from. It’s so nice to know that others are or have had the same issues and not that I would want anyone to have to go thru this, but it’s just nice to know I’m not alone. Thanks again for the quick reply. I’ll update next week after my 2nd infusion, which is this coming Friday, July 30, 2010…:-)
Well I’ve had a total of three Venofer infusions, went back to see the hemo doctor and got my blood drawn, didn’t get a copy of my results so I don’t quite know what my levels were, but he order six more infusions, this was on the 13th of August. I got my first of the six on this day, then got sick with tonsilitis the following week so I missed the next one, but I’ll do the next five infusions and get my results and report back where I am. I can say I feel a little better but still not back to my old self, so I’m still struggling to deal with this whole low iron thing. Thanks for an out let to just vent!!!!!
HI everyone.. hope your summer is going well.
One thing I found quite interesting. I am on meds for laryngeal reflux. (zantac and nexium… at high doses). These meds make your stomach non acidic and iron meds (oral) need to be absorbed in an acidic stomach. So all the years of trying supplements were futile. I am now lowering the reflux meds to the lowest maintenance possible.
Of course the venofer bypasses the stomach as it goes straight into your bloodstream hence forth the boost to your hemo. I had 9 infusions and am now 60 days plus without an infusion. Have my next blood check in 3 weeks at approx 3 month interval. Hoping that the hemo maintained the high level achieved with the venofer therapy. (over 13.. which is wonderful). The belief for my low iron was 3 prong: 1. meds for reflux 2. vegetarian 90% of the time 3. heavy periods. BUT.. just skipped a period so will be very interesting to see the results of next lab work.
Hope you are all improving
🙂
I just found this blog today, and I was brought to tears reading your experiences, and realizing that I am not the only one going thru this!
My problems started about 2 years ago, when I was having constant dizzy spells so bad, missed two weeks of work, had to crawl to the bathroom, kitchen, etc, with my eyes closed. My doc said it was vertigo, and instructed me to do some maneuvers. While they did help some, I just never felt quite like normal self (not that my friends would ever say I was “normal”!) Bloodwork was never even considered to find out what was wrong. I started going to an ear specialist, who again prescribed physical therapy doing the maneuvers, and an anti-dizzy med, Meclizine, which didn’t seem to help. I returned to my doctor, demanding bloodwork to be done, thinking maybe due to my age (48) I was having hormonal problems. Received the results today.Turns out my hemoglobin is 8.6, hematocrit is 27.2, but my ferritin is less than 1. Was prescribed ferrous sulfate and vitamin C.
I had gastric bypass five years ago, and have the absorbtion problems that go with it, so I called my GB doctor to check if what I was diagnosed with was normal. He suggested the vitron-c infusion, which I brought up to my GP doctor. He wants me to try the tabs for awhile before we consider the infusion. After reading all the wonderful posts here, I am going to find a hemotologist to get a second opinion.
Thank you all so much for sharing your stories. I would never have put all of my symptoms, fatigue, dizziness, back ache, crankiness, cold hands and feet, into one problem.
Many blessings to you!
Hi Sandi and welcome. The WLS is a bear. I had a RNY Distal 20 years ago. I just went through 8 infusions over 8 weeks and my Ferritin is now over 100 (I started at 2).
In 20 years of looking I have yet to find a surgeon that knows what to do with the patients after they redesign our insides. Save yourself time and get to a hematologist as soon as possible. With those numbers they should start you on infusions immediately.
Please keep us updated.
Hi,
My Hemoglobin is 6.7, I’ve had two IV Iron Infussions but I dont feel any different. After the second Infusion I’ve had body aches/muscle pain.
I’m having second thoughts of going back for the Infusions. I need 6 more treatments.
Please advise
Hi Ana,
What exactly are you getting, how much and how long does each infusion take? Are they testing your blood before each infusion?
HI
At 6.7 is there a need for total blood transfusion. The lowest my hemo was 10.1 and I was really borderline for venofer therapy. The reason the hematologist chose it was heavy periods, low iron intake and laryngeal reflux meds which make the stomach non acidic. In order to absorb oral iron supplements the stomach needs to be acidic. The combination of the 9 total (I think) venofer infusions which can be pushed in 15 minutes or basically go as slow as you want. The last couple of times it ran with the saline drip for about 30 mins to see if the side affects were minimized. It did help.
Yes my hemoglobin was checked before each infusion and the iron /ferritin series of labs were done every other week.
Be well and hang in there!
I had a lot of muscle aches, too. Make sure you tell your doctor. I stuck with them until the muscle aches in my legs got to where it was hard to walk. Then my dr wanted me to stop then. By then my levels were okay, but not great. I completed 70% of the treatment.
I’d try to stick with it a little longer. I started feeling a difference after about 5 infusions, but I wasn’t as low as you. It takes time for your body to absorb it.
Hi Everyone
Had my 90 day ck up after my last infusion of venofer. They set me up with the IV infusion assuming I would need.. then I told them I had missed 2 periods(first time, can we say menapause) .. anyways.. my hemo was 13.9 so they unhooked me and said au revoir. Next ck up late November. I didn’t get the iron and ferritin work up but it was obvious that my stores could not be that depleted with that elevated of hemo that had started at 10.1 pre infusion therapy.
🙂
Hope you are all improving
There is a mention that 6.7 hemoglobin calls for a transfusion. I think that is something the medical system pushes but not every person is willing to go along with. I refuse blood products because to me it is a gross idea in the first place, but because when I researched it out, there is less RISK involved to allow the body to renew it’s own blood supply. Also, in the US there is a constant and ongoing situation where the blood supply turns out to be contaminated with “something.” I keep thinking that it is only a matter of time before some NEW illness is proved out to be blood borne, so I feel it wise to refuse transfusion unless there is a direct and imminent threat to life.
Waiting for the body to make red blood cells does take awhile, so if the counts are terribly low, the person IS at risk if an accident should occur. Because of this, my doctor put me on rest at home until my counts came up. It was wise anyway. I was so fatigued and pressed that I feel it may have been contributing to the overall inability of my body to recover naturally.
My last hemoglobin count was not low enough for the insurance to continue paying for the venofer infusions. The insurance only would pay for the treatment as long as I was “severely anemic.” I feel that the system got me “nearly” well then did the typical thing which was to cut me off from feeling TOTALLY WELL. That is the system here in the US….It almost seems like there is a conspiracy to NOT properly and fully diagnose what might be causing or contributing to anemia and to not properly help the person fully recover. You can see I am quite negative about the system here and I certainly am one of many. It just falls very short of giving excellent or even what I would call good care and that is a disappointment. I realized it was MY responsibility to figure out the full picture of why I was always anemic and take my own actions in order to recover. I didn’t feel I could put full trust in the doctor and what happened eventually proved that out to be the case.
I seem to finally be absorbing the supplements that I am taking. I now use a formula called Floradix Iron and Herbs. What really seems to have made the difference for me was a many pronged treatment plan with venofer being the first line of repair. I use an iron skillet to cook with. I use the Floradix supplement and I have begun regularly eating liver. I also have started eliminating wheat from my diet because I feel I have either a wheat allergy or a gluten intolerance which can dramatically affect the body’s ability to absorb nutrients. All I can say is that in the course of adding all of these things to my wellness plan, I began to recover at a faster pace than the venofer could have been responsible for. I only did one round of 5 treatments and was just shy of a “normal” iron count for the first time in many many years at the end of that one round of therapy. I do think the venofer helped greatly, but I strongly feel I will be able to manage my iron levels on my own from this point.
I’ll be having blood draws in early October for a recheck. If my counts have fallen significantly, then I’ll have another round of venofer treatment. I’m hoping and planning that this won’t be necessary.
It is good to see some new names coming aboard. I wish each of the new contributors a good dose of health! Welcome!
Hi,
I can see that this is a blog and not a forum, but I came across it when I was searching for experiences with IV Iron infusion – excellent information without the histrionics of other websites!
I’m getting my infusion next week, not sure of the type yet, but after 6 months of IM iron (and the v sexy permanent bruise I now have on my ass), I’m really looking forward to it. I went to the GP after having to pull out midway through a triathlon because I had a strong metallic taste in my mouth and painful burning sensation in my chest (I’m 24, so it was v weird!) and discovered that my ferritin level was <2! No wonder I couldn't complete the tri – my GP was shocked that I was functioning at the level I am. It's managed to get to 9 after the six months of IM, so here's hoping that I will get to somewhere reasonable after the IV.
HI Francis,
Good luck with your IV. It really helped my hemoglobin rise and that usually indicates that ferritin and iron stores have risen. Keep us posted on your progress!
Sherri
Had my first venofer infusion today. My ferritin was 1 and I had been feeling bad for about 2 months when I finally went to my dr and they did and cbc and some other blood work and everything was low.
My infusion took about 4 hours and during that time my arm ached somewhat and my hand began to feel stiff…tight. I got up once during that time to use the restroom and felt kind of stiff and dizzy.
After the infusion they took the iv out and said see you next week (I am scheduled for another next friday). As I got up and started walking I felt even more stiff and achy and my feet hurt to walk on them but I thought wow I am getting old (45), cant sit for 4 hours anymore.
Upon entering my car I could feel pain in my knees as I lifted my legs into the car. Half way home I pulled over and called the infusion center as my foot felt very strange when pressing the gas and brake, couldnt really feel it. I explained I was having alot of stiffness and pain. They said call your doctor right away.
I called and they didnt seem that concerned, by this time my feet, ankles, hands had swollen up tremendously. They told me to take a benedryl and some advil when I arrived home. They seemed only concerned about my breathing and if my throat was swelling which I didnt feel any symptoms of either.
I got home and could hardly get out of the car…the stiffness and pain was incredible, my feet felt like they were going to expload. I took the meds as instructed and it did make the pain manageable but I can tell when it starts to wear off. I am scared about this severe swelling it doesnt seem to be getting any better. My dr did call 2 mores times to check on my breathing but I was and am breathing fine its just the horrible pain, stiffness and swelling. Has anyone ever experienced this? am very afraid to get another treatment 7 days, then monthly there after.
I would greatly appreciate any feedback. I also am hypothroid and MS. 🙂
Susan,
So very sorry to hear of your difficulty with your infusion.. what a nightmare. Be sure they run your blood count before they start your infusion to see how your body reacted. I was lucky with 8 or 9 venofer infusions to have a substantial climb in my hemo and ferritin(2), iron and other related numbers. It is awful to feel that a treatment is making you feel worse so hopefully alternatives can be investigated!
Do you know what your infusion was exactly? Venofer is a newer form of iron replacement with much fewer side effects and negative implications. From what I learned, earlier forms of iron IV were tested first in a small dose to see if negartive allergic reaction appeared as they were not that uncommon. Benedryl is the ideal counter medication to have on hand.
My venofer runs for 15 mins along with a bag of saline. It is pushed to the 15 mins which is the fastest it can be administered but can go slower to avoid possible side affects and at times we chose to stretch the session to 30-40 minutes. That did help alleviate the aches and headache-flu like symptoms for the next 24-48 hrs. Yet the hemo staff were surprised when I reported any type of reaction to the venofer. Maybe you can find out about all of the alternative iron infusions to the one you had since you don’t need to suffer again with a future reaction.
Feel better
Sherri
Feel free to keep in touch.. I know how it feels !!!
Thanks for your Reply Sherri.
It was Venofer 500mg over a 4 hour infusion. They did not test me prior to the infusion for any reaction. It has been about 28 hours and I am feeling much better. Pain is almost gone and the swelling has subsided almost completely. I went shopping today for over an hour. I havent been able to do that in a few months now. So overall it was a good thing…I would like to know how it improved my ferritin, iron, sat, hemo and all the other numbers.
Before my next infusion my dr. said to take benedryl and advil to hopefully lessen the side effects this time.
I am so glad I found this site with all the very important information sharing available it is a blessing.
Wishing health and happiness to everyone.
Hi everyone,
I have a question for you all. I had iron infusions (ferrlecit) a year ago. I had bad leg cramps as a side effect. Fast forward to now and I need the infusions again. I now am extremely nauseous with a horrible headache 24 hours later. Any experience with this? I know these are listed side effects (that, along with every other possible ailment) but I’m surprised I still have them, 24 hours later. Does anyone know if I can do anything to prevent these?
I need many more infusions in the next few weeks, so I’d rather solve this problem now!
Grace,
I have had flu like symptoms for about 48 hours after a treatment. I have found that if I take Benadryl the night before an iron treatment I have fewer problems. Most of my symptoms have been sinus issues and low blood pressure. When the symptoms are bad I take more Benadryl and take it easy for a day or so.
Regina
Hi Grace
What form of iron IV did you have? There are newer ones such as Venofer with less side effects and can be given as a slower drip if necessary. There is no need for pre meds as I can drive myself to and from the appt. The actual Venofer can be pushed to 15 mins so once the saline drip is inserted it is pretty much smooth sailing. I have experience the headaches and flu like symptoms and was told that was highly unusual and they would dissapate over the span of 48 hours. Often the slower the drip the lower the chance of negative side effects. Let us know how you are doing!
Sherri
just had my first IV infusion yesterday….my only side effect has been diahrrea last night and today…could this be the ‘flulike’ symptoms you speak of? Just wondering what to expect, it seemed to go smoothly, drove myself there and home and felt ok. Is this what to expect with further infusions, i may have a few more coming up…or do side effects get wore with every infusion? Just wondering whats in store!
Toofelnr,
I started having to have infusions 7 or 8 years ago. A series 3 or 4 of infusions every 12 to 16 months. I have had flu like symptoms two or three times over the years. The side effects were backache, headache and a low grade fever. The last round of treatments I had a reaction to the first one, but not the next two. This time the reactions were low blood pressure, runny nose and dizziness. I started taking Benadryl the night before and the next two treatments went much better.
Tell you doctor about the side effects. He/she may want to try a different type of iron if the side effects are bad. Everyone reacts differently. Maybe some of the others that read the board will share their experiences.
Good Luck
Regina
Here’s a new question: I’ve been getting iron infusions twice a week for about a month. I just got my hemoglobin checked and it went DOWN! Has anyone had this happen to them? What did the dr say or do?
I’ve been having all kinds of yucky side effects and I was hoping at least it was for a good cause. 😦
Grace,
My hemotologist waits about 6 weeks after my last iron infusion to run blood work. Seems it takes a while for the iron to be absorbed into the blood stream. In my opinion you should have seen at least some improvment. Has the doctor checked for any possible leaks? It was 5 years after I started iron infusions that a doctor thought about a colonoscopy. Everything was normal, but I think it should have been check years earlier. If you don’t see a hemotologist think about finding one.
I take Benedryl before my iron infusions. It helps with some of the side effects. You might also see if you can get your Doctor to prescribe something to help with the side effects.
Hang in there.
Regina
I am having my first iron Infusion tomorrow. I have had ongoing issues with low iron stores for years, and I finally found a Dr who was prepared to do something about it, she sent me to a Specialist, and he was happy to take it further.
The information I have read here has been very helpful, at least I know now what to expect in all good and bad side effects.
My iron stores average around 3-5, so let’s hope I can get them up, and have energy like I haven’t had in years 🙂
Just want to thank you so much for this blog! I am heading into the local infusion center in a couple of hours for the first of 6 weekly infusions, and this blog has me feeling so much more prepared than anything I could find anywhere else. Thanks to all who have posted here, and the best of wishes to all for good health and caring medical professionals!
I had mine on Wednesday. Mine was 7 hours long, a very long day. Thursday I was very tired, and had no energy, so slept most of the day. Friday I woke up with vomitting, and Diareah, which passed after a few hours, and I then was freezing, and had body aches.. I had a fee sessions of being stinking hot as well. But I was told flu like symptoms are a side effect. Saturday still feeling a bit sore, but better. Can’t wait for my energy to return though
Wishing everyone a wonderful holiday with their loved ones. My quick update: last venofer was 5/10… counts were good 8/10 and last week great.. 14.5. The hematologist was thrilled and asked if I had added more iron in my diet (no) or periods had stopped (no). The only change was major reduction in acid reflux meds. FYI I learned that these interfere dramatically with iron abosorption so even with laryngeal reflux I was able to reduce my meds by 2/3rd with the advice of my ENT and that may be contributing factor. Whatever it is I was a happy camper.. and vein found on first try. Use the 3 stick method.. after 3 sticks ask for someone new. Also warm compresses on the vein prior to the infusion and drinking plenty of h20 before and during work. My venofer infusion was pushed with saline for 15 to 30 mins.
I have a 6 mo reprieve and hope to add more iron into my diet and maybe hormonal changes will also kick in.
be well folks!
🙂
What great news Sherri! You did very well with everything and how great to know that reducing the acid reflux meds has been so beneficial to your counts. I do hope your counts stay up well.
How often will you need blood draws? I will have them every 3 months, but I’m thinking of changing doctors to see if a different doctor would help me to get my counts all the way up to normal instead of accepting a 10.5 as good enough.
I do wish you a happy time with your family as well during this wonderful season.
Kimber
Hi, I’m new here and I am actually not the patient, my husband is. He has type 2 diabetes and congestive heart failure. He also is in stage 4 kidney failure. His doctor just told him he would need to start IV iron infusions once a week. Does anyone here have similar issues? I know there are different conditions which may require this. Thanks 🙂
Hi Karen,
While I personally don’t have those issues, my uncle is a type 2 diabetic who has heart conditions and last year had to have stenting done several times for blockages. The dyes that they were using for the stenting operations did cause some kidney issues which is not unusual for a diabetic. After having several surgeries my uncle just couldn’t get his energy up and was feeling VERY depressed. Finally the nephrologist realized that his iron counts were severely low…other doctors had ignored it or had not realized the serious health issue that could be. My uncle actually took IV iron before I ever did and he was the person I asked about it prior to scheduling my first dose. I hope this comforts you…my uncle did VERY well with the IV therapy and it made a very fast improvement in his stamina and also seemed to ease his depression because he felt so much more alert and vital. He didn’t have any of the side effects that I am hearing that so many women had. I believe part of the reason I have had discomforts during and after treatment is related to having fibromyalgia and other autoimmune issues. I’d still get the therapy again in spite of the increased fatigue and the minor aches and pains of it because overall it made such a wonderful difference to how I was able to function. I wish your husband the very best with is IV therapy and I wish you all good things as a person who is giving him care. I know it is VERY hard to be in your shoes but the ill person gets the attention. Take good care! Please report back on how he does with treatment.
hi , I had my first ever iron infusion and was completely overjoyed it went smoothhly since i’m allergic to loads of things and there was no reaction to the iv iron. its 4 days now but I have a burning itch on my palms and my soles and is so much worse when I splash it with warm water. Has anyone had this before. also how long before I know if the drug really worked. after over 15years of severe iron deficiency with few symptoms except an enlarged heart, occasional dizziness and unbelievably frequent infections, my doctor said last week that my ferritin was less than 4 and undetectable. just wandered how I’ll know im better. dont quite know the difference
Wanted to check in. It’s been about a year since my last iv iron infusion (had a series of 8 weekly venefor infusions) and the results were that my hemoglobin slightly rose to about 12.5, but my ferritin dropped to 10 from about 17. The plan was to continue doing the infusions until my ferritin got to at least 100, but my insurance stopped covering the infusions because I had WLS and they claim that is why I’m anemic which isn’t the case at all. I can’t afford to waste money for something that wasn’t working. My doctors have been pulling my bloodwork the last year and my levels have been steadily dropping again. But a complete iron study was just done for the first time since last year and now my ferritin is at it’s absolute lowest ever of 3. I’m not sure what to do. I’m already taking 2 carbonyl iron pills every day. My hemoglobin is 9.2 at the moment, which is quite low for me. My cycle is due in about a week. It’s very unlikely my cycles are the cause for the anemia because they are not heavy at all and the last 2 were rather light and since December, I had a hemoglobin drop from 10.8-9.2. So, the doctors are now looking for internal bleeding. I’m scheduled for an upper GI scan in just under 2 weeks and an endoscopy at the end of March. Hopefully, we’ll figure out the cause of this. My vitamin D is also really low, so now on supplements for that too. The GI doctor put me on meds (Prilosec and another med for gastric spasms) and also Align to see if that will help with the gastric distress. The fatigue and confusion/foggy brain/irritation are overwhelming most of the time. I’m in a lot of muscle and bone pain, which I think is because of the anemia or whatever is causing the anemia. I hope they will figure it out soon! Just wanted to update. I’m kind of hoping they will just do a blood transfusion. I mean, if my ferritin actually DROPPED and didn’t rise after all of those infusions, what else can they do?
Hi Erica,
Being a WLS patient as well I can relate. A few things to keep in mind… You are not going to absorb oral iron. If the WLS doesn’t stop it Prilosec and Nexium will. My Ferritin dropped to a 2 last year and I had a series of 8 infusions. I got up to 147. I just had bloods done and I am at about 100 which as you know is okay. I was almost completely void of D as well and am now taking 50,000 to get that back up, because no D is very dangerous.
Are you saying that right after the series of 8 your Ferritin dropped?
Sadie,
That itching could be a delayed reaction. Be sure to talk to your doctor about it. You might want to think about using benedryl in conjunction with your therapy. Some of the ladies on here used it to help with allergic reactions with good results.
It is hard to explain how I knew I was better except to say that I didn’t look so pale, I didn’t huff and puff when going up the stairs, I seemed to have more interest in doing things outside the home. It was slow and gradual improvement, but I did notice I just felt more “myself.”
Please report back as you go through treatment to let us know how you are feeling. My concern with having ongoing anemia has always been the fear that my heart would enlarge. People really do not understand that anemia can have severe consequences for ongoing health as well as severe impact on daily life. I’ve had doctors brush off my anemia because I had “managed to do things and even got to the appointment.” That is a wrong wrong wrong attitude. People shouldn’t have to live their lives with health that is compromising their full potential. I have not felt well in years and it causes depression when you know you are not WELL and you can’t seem to GET well because those who should help you don’t understand what it is to function at low levels of energy.
Wishing you HEALTH and wellness. I’ll be looking to see your updates as you go through your treatments. I so hope that you feel better very soon!
Thank you so much Kimberly , your kind words are really encouraging.
Thank you Kimberly, your kind words are really encouraging. I completely agree with you. Anaemia seems to be regarded as such a mild illness that the attention it gets is when it has gone really bad. Unfortunately Ive had mine for 15 years since I was a teenager,, and kept telling my docs that I couldnt tolerate the iron tablets as it was making me collapse , until I just stopped taking the tablets altogether , and tried to forget about it. On a positive note , I had a very brisk walk to work today and didnt feel my chest was about to explode (although I daresay it might be too early to tell). so far the only pressing issue is the allergy im experiencing at the moment, but im really looking forward to great things, energy , a lighter mood and no more infections and chest pain. Will keep you informed as I begin to notice real changes, wish you all the best as well, and a speedy return to healthy life. cheers
Erica,
Your post alarmed me. It will be good for you to have these tests I think to see if something is causing your anemia. I’m not a doctor, so I can’t diagnose, but I would strongly encourage you to become a detective about your own health. Get yourself educated in anemia so that you know the condition inside and out. You could have an absorption issue as a part of a digestive issue…you might have hidden intestinal bleeding or a blood condition that doesn’t allow your body to build up red blood cells. I do know that WLS can cause anemia, but for the insurance company to deny you treatment for a health condition is unacceptable. We live in a society that ENCOURAGES overweight people to get weight loss surgery, but then even the medical establishments and insurance don’t want to adequately handle the complications that can come from it. I don’t know that WLS is your entire situation, but it COULD be contributing. I hope they can pinpoint what IS going on right away.
I did want you to know that prilosec and other meds similar to that can contribute to anemia because they affect the body’s ability to digest some foods. Having said that, I am concerned for you because you say you have had many tests and they don’t know what is going on, plus you don’t improve with treatment. That just seems terribly frightening to me.
There are many health issues that can cause anemia, but your situation seems to indicate that you are not ‘absorbing’ the nutrient. Have you tried natural forms of iron? I can’t tolerate most forms, but I find that taking Floradix herbs and iron is a workable treatment for me. I also regularly eat liver as well as make sure that I eat lean red meats. I cook in an iron skillet. When I do ~all~ of these things I seem to stay on an even keel.
I do have heavy periods, so I am not able to make up in a month what I lose, but I also have been diagnosed with rheumatoid arthritis which can be a contributing factor in anemia as well. (I’m not convinced that RA is the correct diagnosis. I sometimes think they shove people who are hard to diagnose into the closest thing they can find. ) I am unwilling to have a hysterectomy or to undergo ablation, so until menopause I will need to do extra things to address my anemia. It may require occasional IV iron therapy, but that is fine with me. I also have insurance issues…they only would pay for the treatment when I was SEVERELY anemic. That dooms me to feeling less than fully well, but I manage quite well with the things I mentioned. I can tell when I need a boost though, and intend to pursue that I will have iron treatments when it is needed.
Please update as you find things out. I hope that the tests will actually diagnose something for you. Some people will hope that their tests come back negative. In cases like this, it sometimes is BETTER to get a diagnosis so that treatment can be given. I’m sure you probably understand what I mean. When you are very ill, it is not a happy thing to keep hearing again and again that they can’t find the cause of your health issues.
I’ll be looking for your updates. I hope you can get some answers so you can get well.
Warmly,
Kimber
I was so glad to find this site. I’m having a Venofer infusion next Friday and I’m worried. I actually had an infusion of it about 5 years ago and had a lot of pain in my hips afterward, but I was never sure if it had something to do with that medication or one of the several others they were giving me, or if it was because my I.V. overflowed due to a rapid saline flush afterward.
I have had Crohn’s Disease for 16 years and am always battling low iron. In 2001 I was supposed to go in for iron dextran (InFed) infusions, but I had an anaphylactic reaction during the test dose. I abandoned the idea of infusions and lived with the anemia I have for years until it seems to get too bad, and then I try again.
So even though I’ve read that the chances of having an anaphylactic reaction to Venofer is low, they’re going to give me a test dose, and I’m going to take Benadryl beforehand. I didn’t react when I had it before in the hospital, but that was a really bad experience overall and I don’t think I’ll ever completely get over that fear of having another similar reaction. I’ll probably be sure to have Tylenol on hand in case I have any aches and pains afterward.
Hey Amanda,
I had bone pain after my infusions and did have some fatigue, but it was “bearable” really. I really hope you don’t have any allergic issues this go round, but it sounds like you are doing all you can to prevent it. I’d be nervous too after what you went through, but I have heard that Venofer is the least likely to cause problems of all the treatments.
I did want to suggest that you try an herbal remedy that is well tolerated and seems to work for most people. Floradix iron and herbs is easily absorbed and shouldn’t cause problems with your Crohns. Also, if you can stand it, occasionally eat liver. Cooking in an iron skillet also can help boost the elemental iron in your diet. I keep telling people this is my three pronged approach 😀
Come back and let everyone know how you are after your treatment.
Hope you feel better very soon!
Kimber
Thanks! I was glad to have stumbled on this blog, and I’ve read everyone’s comments about their experiences. I definitely like the idea of the cast iron skillet and the supplement–not sure about the liver (I’m a super picky eater). I’ll try to remember to come back and post after the infusion. which is scheduled for Feb. 18th.
Thank you all of the info. I’m a little different…I’m a 55 year old male and have had low iron for at least 3 years, noticed I couldn’t run as much as I wanted/had been able to do and fell asleep quickly in a chair at night and always wanted a nap. This gradually got worse. I was sent to a cardiologist, a pulmonologist, and finally a hemotologist. I was diagnosed with pernicious anemia (inability to aborb B12), but also had low iron,also deemed to be due to an inability to absorb iron. My GP had me on 245 mg of ferrous sulfate daily for 18 months…my iron level barely moved (from ~25 up to 30). (From reading above, I know that seems really high to some of you. ) I also have not been able to figure out why it’s low or what happened to my abiltiy to absorb B12 or iron. On one page, their are rare cases of pernicious anemia caused by h-pilori—which I did have (I was raised in the country on well water). So, I’m now going to be on B12 shots monthly for the rest of my life and I take my first iron infusion on Monday. I am cautiously optimistic based on your messages. I will post my experiences afterwards as a way to continue growing our collective knowledge and experiences. Any last minute advice?
JS
My aunt has had pernicious anemia for many years. She takes B12 shots at least once a month. Even though her B12 is kept in a normal range she still ends up anemic. My aunt is about 75 now and is active as her arthritis will allow.
Good luck with your first infusion.
Regina
Hi all
My update is that i continue to maintain 13hemo. The venfer infusions lasst spring worked wonderfully. You can drive yourself and the treatment in under 40 min as there is first saline drip. My hosp liked to push it into 25 mins and sone folks report more side affects when given faster. I found that day and nexy day i was achey but that wad it. My nexium and zantac contributed to malabsorption. Keep those things in. Consideration. Oral iron never worked and venofer bypasses stomach.
Good luck. It works great.how is everyone else doing????
I hope you don’t mind me joining in your fabulous network guys, and I doing so from North Wales in the UK. My situation is a bit different. I have low iron count (started at 8 over 12 months ago and got as high as 24, but now dropping again). I am still on ferrous sulphate tablets but now my dermatologist has consulted with the haemotalogist and I am to have a IV iron transfusion shortly. My difference is the cause. I do not feel tired, I am very well actually, I don’t have heavy periods, but what I DO have is a constant “itching”. (so it was good to see this referred to in earlier posts). Over the last 18 months I have had a rash and spots all over my body, but they have gone now and its just the itching. They are convinced it’s all down to my iron level. All other tests have come back completely negative, which is good I suppose. So I’m going to go for it and just hope beyond hope that the itching stops once my iron levels are back up. I am living on antihistamine tablets at the moment, plus Betnovate steroid cream.
The reason for posting, I am wondering if anyone else has these symptoms requiring iron IV?
It is also hard for me to understand what you are going through re Insurance – Viva the British NHS !!!!
Dawn,
Have you been tested for Dermatitis Herpetiformis? “Typically, DH can be characterized as an intensely itchy skin eruption distinguished by the formation of small papules or vesicles. The patient may perceive having red bumps and blisters. The symptoms of intense burning, stinging and itching cannot be overemphasized. ” A friend of mine has DH. She described it as a real itchy rash. Everyone with DH has Celiac Sprue. Celiac Sprue messes with the absorption of nutrients and can cause anemia. Her treatment was a gluten free diet.
Regina, from Pensacola, Florida, USA.
Regina,
Thank you for that information. My oldest daughter has some lesions and little blistery areas and has been complaining of severe itching. She was just here over the weekend to visit and that was my first time seeing her since the breakout became widespread. I was SHOCKED to see her and just in real anguish watching how uncomfortable she is. I actually did some searching for answers after she left to return home, but this morning I saw your post and did a little follow up on it. I think the pictures I saw and the description I read fit her symptoms very closely. My heart just dropped when I read that they consider this disease ‘incurable’ and only treatable. Still, if this is what she has, at lease she will know what is going on. So far she has blamed it on their dog and carpet fibers in their new house. I didn’t think either of those seemed to fit what I know about contact dermatitis. I’d rather it was that, but it sure seems she needs to go see a doctor about this now. I hate to call her and give her this information in a way because I too have autoimmune issues and getting the news you have something you may deal with your ENTIRE life can be overwhelming and depressing. Interesting though that it causes nutritional deficits as it is related to celiac disease. I think my daughter was definitely looking anemic and ‘thin’ so my mothering genes are on high alert. Again, thank you for taking the time to post. Was your friend able to bring her breakouts under good control with a gluten free diet? I do hope so. At this moment I’d like to hear some hopeful news just in case this IS what my daughter is dealing with.
Kimber
Kimber
My friend that has DH has an active and full life. She give music leasons several days a week. She also canoes and camps whenever possible. She does have to be extra careful with her diet. She is also careful about sunburn. But, I don’t know if that is because of DH or just trying to prevent skin cancer. If she hadn’t told me she had a skin problem I would not have known.
Regina
Regina, Yes I have been tested for Dermatitis Herpetiformosis, particularly when I had all the spots and lesions about 12 months ago. I was CONVINCED that that was what it was. I even had a biopsy on the base of my back. But, like all the other tests I’ve had, it came back clear. The latest test has been for antimicro? bodies as itching can be linked to the liver, but again, it’s all clear. To be honest, they don’t know what is causing the itching, but remain convinced that it’s due to my low iron count and won’t do anything else until my iron count is good – hence the IV infusion. Thanks for responding so promptly. DAWN
Dawn,
Good luck with the infusion. My doctors have yet to figure out why I don’t absorb iron, B12 or Vit D. I hope your’s have better luck.
Regina
Had my iron infusion yesterday. It was called Cosmofer and it was 30ml in 500ml sodium chloride. It took 4 hours but no tests or anything first and no other drugs, just straight in with the infusion. Felt well throughout and after. Now just the wait to see if its worked. the doctor said won’t see any signs for a week/10 days, but the nurse said it could be up to a month. They are seeing me in clinic in 6 weeks – just hope the itching has GONE by then! Fingers crossed.
ok, so I had the infusion on Monday. Process was exactly as described above–I got benedyrll and aspirin as part of the prep. Test shot went ok, 4 hours later, I was done. I was given InfeD. No post symptoms that I noticed (no headaches, chills, etc). Now I’m just waiting to see if it works. I’ve read that 2-3 weeks may be required…any other changes I should look for to know whether it’s worked?
Good to hear it went well. When I have a reaction to the Infed it is usually either while I am hooked up to the IV or within a few hours of the treatment. The doctors will tell you it takes 3 weeks to see if it worked. I usually start noticing small signs after about a week. My brain starts working better. And, the weak feeling in my arms and legs starts to go away. After three week I feel I am back to normal.
Good Luck
Regina
Hey everyone! I’m set to recieve my first IV iron infusion tomorrow morning and so in my internet search on the process I stumbled across this great blog. I was tickled pink! I’ve been dealing with IDA since about November 2010. Mine started when I just generally felt crappy all day, everyday at work. I went to see my general practitioner thinking it was anxiety and nerves from my job (I’m lead pharmacy tech at a local CVS). I was having shortness of breath, erratic heartbeats, really high pulse and generally no energy whatsoever. So, she ran a cbc and found my hgb to be at 5.2. She immediately sent me to the emergency room for a tranfusion. Ended up getting 3 units and was admitted overnight for testing and stuff. Found out the cause of insufficient iron to be irregularly heavy periods lasting at least 3 months, usually more. So the resident OB/GYN put me on the pill to stop the bleeding….nothing happened….so I saw her again a few weeks later and was told to take a pill twice a day for a week and see if that stopped the bleeding….nothing again….(that was december). So I went from then till now (Feb) taking just 1 pill per day, kept right on bleeding, 2 trips back to the er cause I thought my levels were low again…and they were, 6.3 one visit and 7.3 on another visit. I finally got a referral from my gen. pract. to see a hematologist and go for my first IV infusion tomorrow. I am hoping all goes well and will feel better afterwards!
Lots of good information here. Thanks to all of you. My mom was in the hospital about a month ago and got four iron infusions in as many days in a row. Got hives so they stopped them. A few weeks later the nursing home she is at decided to do a blood test. Her numbers were up. Mom has a tumer in her colon which is bleeding, and with her numbers finally up they decided to do the surgery. Unfortunately, she got a UTI and was sent back to the hospital for it. They gave her an antibiotic for that. When her doc’s partner came to see her he decided to give her 1 infusion every other day. She got one, then sent back to nursing home. Her doc reset her for 1 a week. Because of the tumer she isn’t eating solid food, just Ensure Plus – up to 8 – 8 oz. glasses a day. She sleeps most of the time, although, she complains her room mate keeps her up all night with her tv. Mom’s 93, but until she got this tumer she was so healthy she wasn’t on any kind of medication. Surgeon says she’s had the tumer for at least 2 years, so at least one hospital didn’t catch it in it’s early stages. If the infusion works this time, she will have the surgery to remove the tumor and hopefully get back to living her life. She has a couple elderly friends who had the same problem and bounced right back AND started eating again!
All you have said interests me. On 3/25 I will have my first iron infusion. My Ferritin level stands at 5 and the tests have shown no evidence of bleeding. Tomorrow (3/22) I am to have a pick(?) line inserted. My doctor anticipates several infusions, and he wants to spare me being poked for an IV site each time. I think that’s a nice solution to the bruising situation . I’m also happy that the infusions will be done in the office of a Hemotologist. He is present to oversee things, and he has trained his staff himself. I’m eager to see if this will make me feel better. It’s been detrimental to be so tired all the time. Please wish me luck, and I won’t be offended if you also pray for me!
Its now been abou t6 weeks since my first iron infusion. I no longer feel the ache in my legs at the end of the day, but I haven’t noticed any improvement in my breathing/stamina in exercising. That may be related to an irregular work schedule. I don’t go back to the doctor until early May to see what my actual iron levels are now. I do have one question—did any of you notice a weight gain after the iron infusion? It may have been the B12 shots or the iron, but a felt like “munching” all the time and as a result put on about 5 pounds….any body else see that or should I chalk it up to something else?
oh, yea…Jan—I hope it went well and I did offer up a prayer for you.
i definitely put on some more weight , at least 3kg. cant tell its the iron infusion per say, but ive worn the same size for about 10years without caring what I eat , and I think i have officially climbed a dress size
I thought I would update a bit…I had follow up blood work done a few months back and called to the doctor to get my results and they refused to tell me on the phone what my numbers were. I have decided to find a different doctor. This guy is all about getting me in there for what seems his quick pay off and it irks me. I am more than a copay. I have 5 kids still at home and am trying to school them, keep my home running and manage a life in spite of ongoing ill health. I thought he understood that a trip to see him to just get a blood test number was a huge difficulty for me and often means I will have to rest a day to catch up. Any day that I leave home will lead to exhaustion and increased pain. I guess I sort of resent going in to his office, waiting and waiting, then seeing him for two minutes or even less while he tells me what could have been so easily said over the phone. It didn’t help me like him very much either when he stopped my IV iron short of getting me well.
I’ve tried doing a very iron enriched diet and taking the supplements I purchase at the health food store, but I can tell some iron IV therapy would be a good help right now. I do intend to try to find a doctor closer to home who isn’t so concerned about copays and is willing to give consideration that some people aren’t as able to come running in to the office for things that could be easily handled on the phone. I know I wasn’t the only patient who noticed this doctor cared more about the dollars than the patients. There are a few of his former patients out looking for a doctor who has more regard for their total well being. It has been frustrating 😦
It always is interesting to hear how health matters are handled in other places than the US. It all seems to messed up here and even with good insurance getting care is so very expensive.
As always, I hope everyone is feeling improvement with their iron therapy. Wellness is such a blessing.
Kimber
It has been interesting to read all of these blogs and honestly I can say that the iron seems to enhance fighting talk.
the only think that I would like to add to all this is that after having my first infusion a year ago the difference in how I felt was amazing, probably like all of us the journey pre- infusion was an unpleasant one with many awful side effects BUT even with problems getting the blasted needle in i have to say that the end result was fantastic and I got my life and energy levels back. I am just off to have another one and it feels like Christmas – its the best feeling ever that for such a short time post infusion and a bit of initial discomfort getting the needle in, I know that I am going to feel fantastic again after a couple of short weeks wait. We all need to remember how good we feel after this is done even with other medical problems – many years ago we would have just died I guess. We are the lucky ones, some people do not get any respite from their illness’
Well, my journey to find a way to treat my iron deficiency anemia continues. Yesterday, I had an appointment with the Cleveland Clinic in Weston, FL and had great hopes that they would explore WHY I’m anemic. However, it was the same old song and dance to have more iv iron infusions. The hematologist there said I would need at least 15 iv iron infusions of Venefor (having 3 done every week) just to get my levels out of depletion. I’m upset because I’ve already done a round of 8 weekly iron infusions in the past and had a DROP in ferritin in my blood work about 3 wks after the last iv iron infusion had been given. I’m not absorbing the iron via supplement pills or through the IV, so I know there has to be an underlying enzyme or mast cell disorder. I’ve requested a bone marrow biopsy from 3 different doctors now and all of them have said it’s silly to do a bone marrow biopsy since it’s clear iron deficiency. They keep blaming my gastric bypass, but I’ve been anemic since I was a baby! I don’t know what to do. The infusions are estimated to cost $2000 per 100mgs of Venofer and if she wants to do at least 1500 mgs in a month period, that is $30,000 for treatment that (if history repeats itself from my last iv iron experience) may not even work. THEN they will consider a bone marrow biopsy. Ugh. I don’t know what to do. I feel like I’m slowly dying every single day and in an extreme amount of pain, vision issues, heart issues, breathing issues, etc all because they aren’t willing to look beyond my bypass as a cause for the anemia. I’m not sure what to do. I’m a stay at home mom to 4 young children and I had a lot of pain and flu symptoms when I only did 100mgs of Venofer a week. I don’t know how I’ll function on the much higher dose! Is there an alternate to iv iron infusions? She said my only options are ferlicet or venefor (said Infed was too risky), but I’m thinking about trying Heme iron supplements. I don’t know if I’d be wasting my time, but it’s a whole lot cheaper of a stab in the dark than the iv iron. My current levels are:
9.2 – hemaglobin (while taking Integra Plus 125mgs of elemental iron, an additional vitamin C with my iron, and 2 multivitamins with added iron daily. I’ve been taking iron supplements daily in addition to multivitamins for 7+ years now, so it’s obvious I’m not absorbing or, in my opinion, my body is not processing the iron correctly.)
17 – hematocrit
3 – ferritin
326 – b12 (while taking monthly injections AND 2500mcgs of b12 sublinguals daily!)
23 – Sed Rate
555 – platelets
18.5 – RDW
(and my MCV, MCHC, etc are all low.)
What do you think I should do? I’m almost to the point of wanting to go all herbal or natural and see if I can get better on my own without all these useless specialists that keep referring me around the State to insist there is nothing other than an iron deficiency and the other health issues are not related. I’m beyond frustrated and don’t even have the energy to deal with this anymore. 😦
Erica,
I would suggest asking the doctor to try a different type of iron infusion. My doc gives me Infed. It takes longer to administer, but at least for me it works. And, if your doctor isn’t listening, find a different doctor.
When my iron was a little lower than yours is now, my doctor wanted to do an transfusion. It might be something to think about.
If you decide to go natural do your research. There is a book “The Encylopedia of Nutrional Healing” that I have found helpful. The book has lists of items you should consume and items that you should avoid for each problem.
Hang in there.
Regina from Pensacola
Erica,
Would you be interesting in having someone to talk to directly about your issues? What you are describing is quite complex and I would rather not discuss some of the natural things in the forum here, but would be glad to be a support for you and an encourager. I have gone natural in my treatment for all the reasons you mentioned, but my case was not as severe as yours. I am not opposed to traditional medical helps when they DO help, but when we can’t get the care we need, we must do SOMETHING. Would you like to email me? kimberdixon@gmail.com
Warmly,
Kimber
I’ve now had 4 iron infusions because of an on-going problem. Each started at 9:00 a.m. and it was about 2:00 p.m. when I got out. They watch extremely closely for the first hour, even though (or maybe because?) I’ve had the infusions before. In my experience, it takes at least 2 weeks to start feeling any improvement.
I’d like to speak to the comments about bad veins. I do have bad veins. When I was in the hospital for two weeks, the only solution was a pick line (spelling?). They always have trouble getting the IV started. However, I am in Mexico part of the year, and in Mexico, whether they are drawing blood or putting in an IV, they always get it the first time; there is never any bruising. After a blood draw, I get a “spot” bandage, and I have yet to see even a drop of blood on the spot. This leads me to believe it’s skill level, not my veins. I’m quite sure that the quality of my veins doesn’t change from month to month depending on my location.
This time after the iron infusion, I began taking FLORADIX, an iron tonic. Believe me, I have no interest in this company (wish I did), so this testimonial is not paid for. I felt better within a week. I’ve had 4 of the infusions, each 6 mts. from the last one; I am aware of how long it takes to feel better, and I know what happened to me after taking this tonic. I mention it only because I had never heard of it, was told about it and figured I had nothing to lose but the price of the tonic (about $40.00 for a 17 oz. bottle), so I tried it. I’m actually looking forward to my next blood test to see if it shows any improvement.
I forgot to say that my infusions have all been InFed.
Pat,
Glad you have had the same experience I have had with Floradix. I mentioned that on here in posts long ago, but because this is a scrolling website, older posts tend to get lost. I can just TELL it works.
Infed must be more delicate than the venofer I have been given. I am in and out of the hospital in about half an hour from start of the infusion to the end and they don’t do test dosing or anything like that. Once the IV of saline is in and running, they hook the IV iron and it is pushed quickly. I never feel very well afterwards and usually would go home and spend an evening huddled in a blanket. But over time I did get a higher iron count, so it was worth it.
Now I am treating naturally (floradix, cooking in an iron skillet, eating liver and other red meats regularly, taking several vitamins in higher doses than RDA) and I’m feeling pretty good. I need to go get a follow up test for my iron levels, but I feel they must be pretty good or I wouldn’t be able to do the things I have been doing. When my counts fall to around a 9 I begin to have a certain weird headache. If it falls to an 8 I start to have chest pains and breathlessness. Lower than an 8 and I can’t walk up the stairs without panting heavily.
I’m glad you have had good results with the iron therapy. Thanks for telling your story. It is always good to hear that someone is feeling better after treating IDA.
Be well!
Kimber
Hi I am scheduled for my first IV iron infusion in 2 days. I am not for sure what is going on and I am real scared. The doctor has had me on iron supplements for 8 weeks and my ferritin has went up from 2.4 to 3.4. When the doctor gave me the results he just said they still stink and he wants me to start IV. He thinks the difeciency is from blood loss but I dont understand that. I have not noticed any blood loss and only have periods 1 every 3 months of so. I just need some words of wisdom. If anyone has any advice please let me know. Thanks:)
You could have an ulcer that you don’t know about–that would actually be good news because it’s treatable.
Yeah that is very possible…just don’t know and thats whats so bad…
It’s scary not knowing, but don’t worry about your iron infusion. It’s a lot scarier to think about than it is to do it. You’ll go in; they’ll probably have lounge chairs that recline for you; they’ll probably have quilts for you because as the saline goes in, you’ll probably get cold. In case they don’t have quilts, wear something warm and maybe take a sweater or jacket you can put across you. Take something to read and maybe a lunch. Chances are they’ll have a coke machine. Since my veins seem to be a problem for them, I dread just getting it started. After that, it’s a cake walk. You’ll be fine.
I appreciate the support. It is scary not knowing but I think I’ll get through it. I’ll let you know how it goes 🙂
This is going to be a long post in hopes it may help someone. Today, I got my first ray of hope in 3 1/2 years.
I am so incredibly happy I can hardly write about it–I’m hoping that it’s not just a false expectation that will be dashed, but right now, I’m enjoying the feeling more than I can say.
I went to Mayo Clinic this morning to see the gastro doctor. First of all, I liked her. She really did listen to me and asked more questions to clarify what she was hearing. Then, drum roll………
1. She said the problem is not unusual; they see lots and lots of cases just like mine, and they fix them.
But they don’t always get them fixed with the first round of tests, so there may be a lot required. In the
cases where they don’t fix it, it’s generally because the patient won’t put up with more tests and just
decides to keep on with the iron infusions.
2. She said the problem has to be in the gastro-intestinal tract; there is no other option. I’ve had the
problem for 3 years; any form of cancer would certainly have made itself quite apparent in all that
time. I have none of the signs of an ulcer, so that isn’t it.
3. She said sometimes the veins/arteries get too close to the surface and they don’t really
bleed, but they do “ooze,” and they, thus, create a slow leak. I asked what they do to fix it and she
said “burn it;” that stops it.
4. She asked a lot of questions about my 2 week hospital stay and looked at the summary reports I
brought, the test for Celiac disease, the blood report flow charts, etc. She said they might have simply
missed the spot when they examined me in the hospital, and asked if I had ever had another
upper/lower GI inspection. When I said, “yes, here,” she was visibly pleased and looked it up and
read through it. While she was reading, I said it was intensely painful and that I came out of the
fog enough to hear the nurse say “She can’t possibly be in that much pain,” and hear the doctor
reply “Oh yes she can; she’s incredibly convoluted,” and I therefore was requesting anesthetic.
She said, “It”s no fun for me to have a patient writhing on the table either, so you will be sedated,”
and kept reading.” Then she said “Oh! The doctor who did your exam is very, very good, and he’s
noted that he almost couldn’t do the exam. You will be sedated. And now that I see that, we’re
going to skip what would have been the first step. I’m going to send you directly to the hospital;
we’ll use a new scope we didn’t have then, and I will have one of the experts with that scope do
the procedure. I’ve used that scope, but I’m not an expert, and you need an expert.”
She continued reading and then said “Oh! They noted in 2005 that you had lacerations within
the hiatial hernia. That would account for a lot. They definitely ooze. I wonder why they didn’t find
those while you were in the hospital. That’s definitely where we’ll start. They may have healed and
that’s why they didn’t find them, but if not, blood would be destroyed in the stomach.”
5. SO, I go for the procedure on Tuesday, June 7th. I have never before looked forward to being
abused, but this time, I’m truly up for it. Maybe, at last, some answers. If they find the answer,
then some sort of surgery to fix it.
6. If they don’t find it, the immediate next step is to swallow another camera. It seems the small bowel is
often the source of problems like this.
Even if they don’t find it, they feel the answer is in the GI, and they intend to find it. If I have to have other tests, I’ll take them. Getting rid of this problem would be soooooooooo good.
I am fixing to be 32. I have 1 child. I have been complaining about exhaustion, thirst, hair loss, etc… for quite some time and have insisted since last Oct. that I have an iron problem. I have non-diabetic gastroparesis so my hematologist thinks I am not able to absorb the iron and also I am on a LOW FIBER diet bc of my difficulty digesting foods. I cannot have beef, any beans, lentils, corn, anything with casing, etc… It is really hard to eat nowadays. I go for my first infusion on Tues and I am very nervous. I am worried about the side effects and the horror stories I have heard. I cannot tolerate oral iron. How often do most of you have the infusion? How many trmts did it take before you noticed a difference? Did you have any long term side effects? Please help me with any advice you can give. Thanks!
It depends on what they are giving you. If it’s InFed, you’ll be getting a lot, and it’s easy to have the treatment–but it takes from 8:00 a.m. until 2:00 p.m. or so. You’ll feel the difference in two to three weeks. If it’s one of the other products, given in smaller, repeated doses, I don’t know. Meanwhile, I suggest taking FLORADIX. I couldn’t tolerate iron pills, even the ones that are supposed to be “easy on the stomach,” but I can take Floradix and experience no problems at all. Within a week of when I started taking it, I started feeling better.
Good luck on the infusion–whichever kind it is, for me, the worst is the few minutes it takes to get it started; after that, no problem.
Amanda,
Good luck today. The hardest part for most patients is the not knowing what to expect.
I was first diagnosed with malabsorption anemia 10 years ago. I have a series of three to four InFed infusion about every 12 to 14 months. Once in a while I have a reaction to the Infed, usually the first infusion in the series. Taking Benadryl the night before the infusion seems to help. If Benadryl doesn’t knock you out or if you have someone who will drive you to the infusion you could take the Benadryl the day of the infusion.
I am planning on taking Floradix in the near future. I have blood work done next week and I want to get the results before starting the Floradix. I want to document the effect it has on my iron levels.
Once again good luck today.
Regina
Pat,
I just read your post, I do hope all went well for you. I am scheduled for upper and lower GI on Sept. 12th…Iam post menaposal and have been told that I have iron deficient anemia and am also low on B12. My doc says he thinks I may have an intestinal bleed…I’ve been on Nexium for years.
It they don’t find anything with those 2 tests…they will do a 3rd. One I didn’t even know about, which requires be put under and takes one & a half hours to perform. It goes to an area that is in between the areas that are reachable by the first 2 scopes.
Maybe what you were talking about?
I am really tired of being tired..I am hypo-thyroid also but they keep up with that. The Hematologist told me they are planning to give me an IV Iron infusion. After reading alot of these posts it kinda turns me off and scarces me at the same time. I really appreciate those who have shared more positive outlooks and experiences.
My Mother had Colon Cancer and by all rights should not have made it. However, I truly believe that her positive attitude and sheer determination along with a Very Healthy Dose of Prayers is what pulled her through.
I hope to hear that you are doing well.
May God Bless you and all of those struggling with illnesses…..
Regina, I will be very interested in your reaction to Floradix. I won’t see my doctor until mid-August to find out if it is actually having an effect or if I just think it is. At a different lab (so I really can’t compare the results), it appears that my hemo. is up, but I won’t be certain until I have a test by the same lab and have the same doctor look at the results.
Pat,
I will post how the Floradix “test” goes.
Regina
Had my first Infed trmt yesterday. It took 5-6 hrs. It wasn’t bad though. I was so nervous after reading all of these comments. I didn’t have an reactions during the trmt. Afterwards I had a pretty bad headache and some lower back pain so I alternated tylenol and ibuprofen and used a heating pad. I woke up this morning still tired so I took a nap and I am feeling good right now. I am worn out…that is about it. I go back next tuesday for my second trmt. My iron deficiency is due to non-diabetic gastroparesis so in 3 mths we will check my levels again to see how well I am retaining the infusion. I’m a little worried about it bc my disease doesn’t allow me to absorb nutrients so the only way to get the iron is this way. Gonna stay positive though. Hope everyone is doing well!
I’ve now had the endoscopy and colonostopy (spelling?) and they did, indeed find erosions. None of the erosions are bleeding, but they are “seeping,” thus causing a steady, slow drain of blood. At the hospital, they told me what had been found and said my doctor would go over the results with me on Monday, prescribe something to help the erosions heal, and then I’d probably have another endoscopy to see if I am healed enough for surgery–exactly what kind of surgery I don’t know. BUT they found something treatable that may correct the problem I’ve had for 3 years. I’m hopeful. I expect I’ll still need another InFed infusion at my regular 6 mts. mark, but maybe after that, it will at least occur less frequently.
My husband will receive an iron infusion for the first time today. I dread it for him because nurses have a difficult time hitting his veins. He has cbc’s very often, as he has a blood vessel in his stomach that periodically bleeds. One nurse, Rita, has learned how to find a vein on first attempt. His blood count got down to 6 a few years ago and several nurses tried to find veins. They had to give him a blood transfusion through a vein in his thumb. This took several hours because the vein was so small. Some people have deep set, rolling, small or collpsed veins, that are difficult to find or hit. It depends on the circumstance to. In my husband’s case, even the most experienced nurse had to use a vein in the thumb.
Ann,
I pray your husband’s first infusion goes/went smoothly. The only helpful that I know of for folks with “bad” veins is to drink plenty of fluids. This will plump the veins a bit and make them not quite so hard to find.
Regina
Wow, your experience is almost identical to my first iron infusion! It really does suck, but its nice to know there are others out there going through the same stuff. Thanks for writing!
Shirelle
In order to reach the part that the upper scope and lower scope can’t get to, they had me swallow a camera (in a very small capsule) and wear a device that monitored what the camera saw for 8 hours. I picked it up at 8:30 and turned it back in at 4:30. All of this took place quite a way from home, so we spent the day going to movies–since I couldn’t eat and didn’t want to shop. It sounds alot easier than being put under in the hospital for a procedure. Anyway, the camera found nothing, so the doctor has me continuing with the acid inhibitor (similar to Nexium, but apparently, a different strength or make-up) and continuing with the Flora-dix. She really believes the erosions are the answer, and I certainly hope so. She said that, for me, the only other course of action is to operate, repair the hernia and repair the erosions, but she feels taking the acid inhibitor is a better course of action for me if it works. I’ll be going back for more blood tests, etc. in October, and I may know at that time if it’s working.
As I said earlier, getting an iron infusion sounds a lot worse than it actually is: dress warmly, take a lunch and a book; it’s really not all that bad.
Hi, I had an iron infusion about 4 yrs ago. This time I will be having one that last 6 hrs. I needed it last yr, but I thought I could slip by. My initial appt is Oct 20 with the dr. I will probably have the infusion 21st of Oct or pretty close to that. I have all the usual symptoms: big time fatigue, no energy, sleep 12 hrs at nite, and take 4 or 5 yr naps. I’m told I have pretty good veins. I pretty bring my Kindle and snacks.
Hi Bonita
Is there some reason it will take 6 hours for your iron infusion? Maybe there’s a reason for this amount of time. I had one a week ago and I was in the radiology section a total of 3 hours which included the testing (15 min) and then the actual IV. Fortunately, I had no problems, no side effects at least so far. I drank a cup of coffee while I watched TV sitting in a fairly comfortable chair. The nurse insisted on putting a warmed blanket on me because she said most people do get a little chilly. Everyone was very very nice at St. Joseph Hospital. Good luck and I will be thinking of you.
I don’t know if this is true or not, but I’ve been told that the slower the drip, the fewer side effects and less chance of a reaction. I know that the nurses have changed the speed of the drip a couple of times during each infusion I’ve had. They start really slow; if it goes o.k., they increase the drip; sometimes they have come by and decreased it again and then moved it up again.
My Infusion was 7 hours from wo to go. Very long day. It was just taking its time flowing out of the bag. That was 12 months ago, I am due for next lot of blood tests to see if it needs doing again (possibly annually)
My erosions that “aren’t bleeding, but are oozing” seem to be responding to treatment. I had my last Infed the middle of April. For the past 3 years, I’m really dragging by the 5th month from the infusion, but I have to wait until I’m anemic before insurance will cover it. I just saw the doctor (6 mts.), and I feel fine. I seem to have enough feritin that if I lose 10 per month, I’ll still be o.k. until mid. December, which would put another infusion at mid-January. It is, of course, possible that I won’t continue losing and am healed. No way to know (without swallowing another capsule camera) except to wait and see what happens. In any case, getting an infusion every 9 mts. is better than every 6 mts. I’m also taking Floradix every day, and my hematologist and gastrointernologist both say to continue taking it; they both think it is helping the situation. All I know is that I feel good–and it’s been 6 mts. since an infusion!
That all sounds great, Pat! I am a big promoter of Floradix. That stuff WORKS. Maybe it will work so well for you as you are healing that at some point you won’t need the iron infusions at all. Now if I only would REMEMBER to TAKE my FLORADIX I’d be a lot better off 😀
It was nice to hear good your good news. Keep doing what you are and best blessings for healing!
I’ve now been checked out again—-and I’m not anemic! I have an appointment in March to check again. My last infusion was in April of 2011. It I make it until March, that will be a year. I really hadn’t even dreamed of making it a year. Both the hematologist and the gastro internologist want me to keep taking Floradix. It is, indeed, wonderful stuff.
Wow, Pat…didn’t see your post until now. Two thumbs up!!! yay for you. I’m amazed that you have two docs who are approving the continuation of Floradix. My doctors always “poo poo” it because it is something I can buy at a health food store 😀
I just returned from a vacation and didn’t take my floradix or other supplements with me. Had a menstrual cycle last month that nearly knocked me flat. This month hasn’t been bad at all. I can tell I am anemic again though from just my same old symptoms. I am going to press again with my floradix now that I am home.
I’m seeing a new doctor on the 20th. He is an older man, seems experienced and not so test driven. I do need some new blood work, but I would like a doctor to stay on the subject of the anemia for once and get me boosted up to a normal level. I really think this doctor will do that for me once we talk it all through.
On a different note, I was in the company of a physician while on vacation and he asked me a couple of questions about my condition. I told him that I’d been diagnosed with RA but have always questioned it as a diagnosis they put on me because I just really didn’t fit anywhere else. He looked at my hands and said they look pretty darn good and that is a clear indication that I don’t have RA. At my age, my hands would be showing clear signs of RA and they simply don’t. The other tip off is that I have joint problems on one side of my body which flare when I am sick with colds or flu or stress. RA almost always is bilateral. He said that I may want to talk to the new doctor about infectious arthritis and see if it merits a new hemotologist who will do a more careful study. This doctor also said I shouldn’t waste time on doctors who choose “not to believe in Fibromyalgia.” He said it is clear that fibro is real by now. I have been too much to let poor doctors jerk me around. So now, I AM going to find a decent doc and see what progress can be made. The other advice was “TAKE NAPS.” I think I will take that advice!
Hope everyone will do well in this New Year. May we all find good helpers in the medical system to guide us and treat us and may we all step closer to good health.
Kimber
hello everybody..i am having my first ever i.v. iron infusion in two weeks, i am so nervous about this, ive been reading about pain that you can get in your joints after it is done. does this happen to everyone who goes through this? i have so many other ailments. there is a tear in my intestine, which could be why im anemic, ive had a hysterectomy, so its not from losing to much blood due to heavy periods, which i did have before (hyster 6 years ago) i am really scared about this whole thing coming up..any info would be appreciated. i am getting this done at the cancer institute,which scares me alone..but i want to feel better, have more energy and enjoy my life…also, i am in menopause and have 9 children (dont know if any of this has any impact on the anemia)…thank you, arlene
Read through the posts here. You will be very re-assured. People have posted their experiences in detail, and you’ll know just what to expect. My advice is to take a sack lunch and wear something warm. The fluid is cold going in and even if they have lots of blankets for you (which they almost surely will), you’ll probably be glad you are dressed warmly. Take a book or magazines to read. There will probably be t.v.’s you can watch, but daytime t.v. isn’t really all that distracting or stimulating. I always wind up going to sleep for part of it, and you may too. Once it’s started and you realize there really isn’t all that much to it–it just takes a long time–you’ll settle down and may find the let-down in anxiety level sends you right to sleep. You can expect to find recliners which are comfy.
thank you pat… i had it done today, got there at 830, was done at 330…i slept most of the time..i didnt have any side effects at all. the nurses were nice and it was alot less scary than i thought it would be..i did dress warm and they gave me a couple blankets:) hopefully i will feel the results very soon and get back to my old self…thanks again, arlene
Glad it went so well Arlene. I am sure you will feel better very soon. BTW…how lovely that you have a large family 🙂 They will all be relieved to see you feeling well again!
Thank you for posting about your treatment. I have to have my first one done in a couple of weeks. I was kinda stressing it until i read the post. It makes me feel 100% better about it, and now I’m ready for it. And ready to feel better after i hope.
Hi June,
It is reassuring to read what others have experienced, isn’t it? In the big scheme of things getting the iron infusions is one of the simpler medical things we can face in life and the improvement it can bring makes it SO worth going through with it. I’m glad you feel ready to get this behind you and YES…be ready to feel better after. It takes a little while, but the boost is far quicker than what you can get by trying to eat your way to and supplement your way to healthy counts. It still is really good to take some quality iron supplements and you will see that Floradix is recommended by at least a handful of the people who have posted here. Some of us have digestive issues that make taking iron difficult, but Floradix seems to work well for pretty much everyone I’ve known to take it.
I hope you will come back and post after your appointment to let everyone know how it went and then post again when you start to feel the improvement. Take good care and here’s hoping you feel better very soon!
Kimber
Well……I said I would come back and post what is going on with my iron counts. I just talked to the Dr. today. When he got on the line he said I had to contact the hospital and go over immediately for IV treatment. He said all my counts are low except b12 and there is just no way I can recover on my own. I asked him what my counts were and actually they are much better than what they were, so I am very encouraged. He pressed for me to have the IV therapy and I told him I’d like one more month to work on it with what I’m doing naturally. I’ll go back and retest in a month and if they are the same or lower, I’ll get the IV therapy. If I’m better, I will keep with what is working now. Anyway, my hemoglobin was 10.1 which is a big improvement from 8. My hematocrit was a 23 which also is an improvement from 21 I believe it was. My saturation level was very low, but it is a time of the month where I would expect that. I’m going to continue treating with Floradix and then will see in a month where I am. The doctor was fine with me trying this for this ONE MONTH and said that the counts I have are not “emmergent.” So I was glad that after his alarming statement that this IV therapy had to be RIGHT NOW, today, immediately, he is ok with me giving it another month. Praying for continued good results with the Floradix. I’d like to avoid IV therapy if I can, but will accept it if I really need it.
Kimber
i went to see hematologist dr today and he recamened an iron infusion for me but every 6 months i don’t know what kind of infusion but he wants a standing order for every 6 months anyone ever get them every 6 months?
I’ve been having them every 6 months for 3 years. I’m generally in very bad shape for the month before they do the infushion, and it takes almost a month for me to get back to normal, so I have two bad months out of every 6. However, as noted above, taking Floradix has resulted in my having gone almost a year since the last infusion. It will be a year the middle of April, and I have a doctor appointment to be checked the end of March. As of now, I’m still doing o.k., so Floradix plus the proton inhibitor the gastro-doctor gave me to help heal the “oozing” has made an enormous difference. I can’t recommend Floradix enough; it made a difference in the way I felt in only a couple of weeks, and I’ve continued to be normal. After 3 years of every 6 months infusions, it looks like I’m moving on to every year!
Welcome, Faye! I have heard that a lot of people have standing orders like that for the infusions. Mine have been on a check and see type of a basis, but when I get my infusions, I have several in a row. I think it probably would be nice to just have the standing order if it was needed. Having said that, this go round I decided to try to treat naturally but aggressively. I’d like to avoid more infusions if I possibly can. If I’m not able to boost my counts sufficiently then back to the infusion center I go. Please come back and let us know how your infusion was and how you are feeling.
kimber
i have been taken profemia it is a natural but a lot of people is talking about floradix that is also a natural but when i talk to the dr he said not to take any iron prodeucts at all floadix is also a natural will it hurt to take it?
thanks
Hi Faye,
I don’t know why he is asking you to NOT take any iron products so I don’t want to advise you to use something that might be “contraindicated” for your situation. However, if you have typical iron deficiency anemia, I have NO IDEA why he would tell you to not take a product that is made entirely of foods and herbs. As Pat said, you probably need to ask him WHY he is saying no iron products. Sometimes they discourage the use of taking supplements during the time you are getting infusions. Perhaps that is because they want to ensure you don’t get an iron overload which is in some ways “worse” than being anemic. Iron can be really hard on the liver, so this may be his reasoning. If he advises against taking anything for now, perhaps you can use it after the infusions for maintaining your iron levels.
While it is best to do what the doctor advises, it helps to understand why they advise some things. It may be that if you tell him what a good product Floradix is, he will encourage you to use it. I’m thinking he probably is just trying to avoid possible overload while you are having treatment. Having said that, my doctor didn’t tell me to avoid iron and encouraged me to be eating a diet rich in iron. He knew that I was taking the Floradix. My gripe with him was that I went to all the trouble to get to all the infusions and then he cut them off as soon as my count got to a 10.5 which really is still quite anemic. I felt like he didn’t allow me to get all the way better after telling me the goal was to have the infusions until my hemoglobin was up around a 13 or 14. 😦 He said it was an insurance issue HOWEVER, my current doctor just advised infusions and my count is 10.1 – similar to what it was when the last doctor cut off the treatments.
This time I’m planning to try to treat naturally and will be pushing pushing this month to rebuild using natural products and diet. I don’t seem to absorb certain types of iron that are found in most vitamins. Floradix and Hemaplex which are natural seem to work for me, but it takes real diligence in taking them AND eating a diet high in iron to improve.
To sum it up, you should do as Pat mentioned and ask your doctor why he is advising against using iron products. If you can’t use them for now, ask if you can use them after the infusions to keep your levels up.
Hope you feel better really soon!
Kimber
The fact remains that it is an “iron product.” You need to ask him why he doesn’t want you to take any iron product and ask specifically about liquid iron products like Floradix and Geratol.
does the tablets of floradix work as well as the liquide or is it better to take the liquid floradix what do you perfer
thanks
I take the liquid. The pills, no matter what brand, are much harder to digest and the body doesn’t absorb the iron nearly as well. The doctor had me taking three pills a day (which causes digestive issues) and I wasn’t getting any better. When I started taking liquid Floradix, everything changed. The following is from the Floradix site:
The average person’s body will only dissolve and absorb 20% of most solid supplements and will eliminate the remaining 80%, possibly causing side effects such as constipation, gas and bloating. Because Floradix is a liquid solution and does not need to dissolve, 98% of the iron is available for quick potential absorption. As a matter of fact, Floradix was found in a recent study to be faster and more effective at bringing iron stores back to normal than iron from food, and can help women boost the average diet, which contains only 8-10mg/day, in order to meet the recommended daily iron intake of 18mg.
Floradix Iron + Herb Tablets with 7 mg elemental iron plus vitamins B1, B2, niacinamide and vitamin B6 is a balanced iron supplement designed to meet your daily iron requirements.
Floradix Iron + herb Tablets are especially convenient for those who want to have an iron supplement on hand at the office or when traveling.
ive had gastric bypass.i was told not to take iron suppliment due to i dont absorb them.ive had one iron infunsion.3 more due once a week.any input help
Corinna, There have been several visitors here who had iron issues that are just the same as you are having after having weight loss surgery. I know several weight loss surgery people myself and they all seem to have iron issues and can’t tolerate their iron tablets. You could try Floradix Iron and Herbs which is usually easily found at a health food store, but probably could be purchased online as well. It is pricey but it works well because it is made out of foods amd herbs and is gentle. It is a liquid and is easily asbsorbed. I did iron infusions in the past and found they were very hard on my body and though they did boost my iron and energy level pretty quickly, there was a big pricetag on having them in actual cost and wear and tear on my body as I went through the process. I’m a huge fan of the Floradix now. Wishing you the best. Let me know if you have any other questions. Feel better soon!
Hello,
I have never posted on a blog before. This is new for me. I had a ruptured stomach ulcer several years ago, and had to have part of my stomach and intestines removed from the damage. I have stayed iron deficient and anemic ever since. My doctors have treated my anemia with supplements, and we have never been able to get my iron levels and red blood count normal. I eat a very healthy diet and keep track of what I eat through a daily log that I have been showing my doctor to see if maybe I need to change something diet wise. Well, despite all efforts made, and due to my body refusing to absorb the iron that I need, my doctor has informed me that my iron levels have dropped to the lowest level yet so far. I will be starting IV Iron Infusions this week and will continue receiving treatments once a week for the next 5 weeks with the expectation of getting my iron to a normal level for the first time in years. I don’t look forward to the IV treatments, but I am so excited about the possibility of not being anemic. My memory is not what it should be, I have dizzy spells, my hair fell out and some of it has grown back, but it is still very thin, and I am fatigued in addition to other issues caused from the anemia. My doctor told me that my hair would probably start growing and thickening when we get my iron levels to normal and keep it that way. I have had anemia for so long that I don’t know what it feels like to not be anemic. I know it must sound crazy, but just the thought of having a normal blood count excites me so much that it makes me feel like it’s Christmas again.
Lisa
Hi, Lisa. When I had hair falling out by the handfuls, the doctor told me to take Biotin (an over the counter supplement). Previously to the doctor telling me to take it, my hairdresser had told me to, but I ignored her–shows what I knew. Anyway, it helped tremendously, and I have continued taking it every day and recommended it to others. The people I’ve recommended it to say it has helped. You might consider adding it to your regime.
I do know what you mean Lisa! The prospect of feeling real health again is such an enticing goal! Do you have questions about it, or do you need support to get through this phase of your healing? I know that I did and few places online have much to offer. The infusions will really give you a quick boost and though they are not “lovely” to go through, they carry less risk than transfusions. Ask anything you need to! I am sure people here will help and encourage you through this process.
Warmly!
Kimber
kimber
the dr. don’t want me to take any extra iron at first because of overload only get the iron in my diet gastric bypass nurse said probley after the first 6months after trement to see if the infusion helps to get my iron count up.
thanks for the advice
faye
Hi Again, Faye.
My thought before was overload worries and now you have that confirmed. I don’t believe you had mentioned before that you had gastric bypass. I know several people who have had that surgery and all deal with digestive issues that make it hard for them to absorb their iron and other nutrients well. After you do your IV therapy, you should consider using the liquid floradix and also explore using some digestive enzymes to see if you can keep your iron levels up. People complain about the cost of the floradix, but the cost of IV therapy was about 200 dollars for me for each one and a total cost of about 7 to 800 dollars was billed to my insurance. Floradix is CHEAP compared to that. Because you are so depleted, I think you really will benefit from the IV therapy, but maybe AFTER you finish it, you can see what Floradix will do for you. Hope you are feeling better very soon!
Kimber
hi
just last aug. i had a hernia fixed and i had a turmor in my colon so they fixed my hernia and they took most of my colon so mst of the time i have direrra tue of this week i had my iron infusion infed iron it went well but it was a long day they said i would feel better in about two weeks so we will see how it does
Hi Faye,
I also get the Infed infusions. It does make a long day. I usually have a series of four infusions. At the two week mark I notice that I am not as weak, and I think a bit clearer. At the four week mark I am feeling more like my old self again.
im not ood at computer trying to leave commet
Had iron IV infusion today. It was a breeze. Not the first side effect. I’ll post in a week or two. Can’t tell any difference in energy yet.
You people who hAve been posting comments about the nurses and ur viens are very aggravating! I came to this site looking for answers to my fears and hopes of a good outcome after three years of declining health!! I was just referred to a new hemotolgist by my nephrologist because she could not understand why the infusions she was giving me where not helping me sustain a decent iron count. I feel very hopeless because with the combined effort of all my doctors, ( dermatologist for sudden onset of phsoriasis m skin infections, urologist for painful recurring hemroids, that I had removed n they came right back, obgyn, for painful inflamed lymph nodes n my groin area, nephrologist for my poor kidney n liver function , internist for the extreme muscle fatigue and lack if energy, and now finally a hemotogist to take care of my low iron n hempglobins. With all these experts why can’t we come up with a diagnosis??? It all started with the birth of my three yeAr old daughter , and now when I look at her I long for the woman I use to be before her birth !!!! So if anyone can leave a comment about a similar health problem I would welcome the insight 🙂
It’s a pretty old blog here really and you started reading the oldest posts first. Browse around at the bottom of the page for the newer information and perhaps you will see some who have similar issues and I know you will see good accounts of how the infusions helped some and gave very few problems at all. It sounds to me like you have a digestive issue that is causing you to not get your nutrients. You will have to become your own detective and perhaps figure out for yourself what you need in order to become well. Most people who have unusual sets of symptoms are forced into that anyway because in real life there are no “Dr. House” types who will take on a plethora of symptoms. I do know some people go to the Mayo Clinics for a throrough assessment where doctors discuss findings and sometimes diagnoses are made that way. I don’t often hear of people who are being bounced around doctor to doctor the way you are now getting much help. Sorry to be blunt. Perhaps others have had better success and maybe someone here can recognize all your symptoms as one disorder and help you. Hope so. In any case, if you are very anemic, the infusions will help you a lot and pretty quickly, too. Feel better soon 🙂
I can relate to your experience. I was at a top hospital to deliver my baby in NC. I wad stuck 20 times in my lower spine for my epidural. They said to my husband, 20 mins…2 plus hours later and after I cried begged for another person, he arrived and it took a second. So, that shows you it was the person. I too just had iron via Iv, how has it helped?
I just had yet another blood drawing session. It turned out she was excellent, had spent lots of years in emergency. In chatting, she said “Never let anyone stick you more than twice before you demand someone else; they’ll ruin every vein you have, and then even someone good won’t be able to find a spot easily.” That’s my new motto: Never more than twice, and if any fool can plainly see the person has no skill, I’m modifying that to once. The last time I was in the emergency room, I had a person who attempted to push my vein to the needle. She did get it in, sort of: the blood was, literally, going into the test tube drop by drop. I’d have been there all day and night. I demanded another person, and it was done with one painless stick.
Hi all, i had to laugh reading these posts, i actually would just like advice…..going for my first iron IV in two days and im really nervous, especially when one reads the side effects, anyway my iron and ferritin are 3 and 3.5, it would be interesting if you could let me know what your counts are
Great info. Found out today that iv iron may be in my future. Now I know what to expect. Thank you so much.
Hi! Take what I say with a grain of salt…I was an IV therapy nurse for a few years, an ER nurse in a level I trauma center for many years, and I worked on an ambulance for over 15 years. I’ve put IV’s in newborns, pt’s who’ve used drugs all their lives and had no veins left so I had to get a special MD order to use their feet (!), moving ambulances, and well, you get the picture. You would think I’d be an “expert.” However, everyone had bad days (that’s why I always say it’s better to be lucky than good), some patients can be so nervous or so overbearing that they make the IV nurse nervous w/o realizing it or intending to do so (personally I HATE to have blood drawn despite having good veins so I intentionally try to create an environment with the lab tech such that I have her laughing and relaxed before he/she even starts; the last thing I’d do is tell them I’m an APRN or worse, that I have bad veins – hey, everyone gets dehydrated from time to time even people with the best of veins). I hope I remember my own advice today because I am finding myself on the other side of the table (better than the other side of the law I guess). I am leaving shortly for my first IV iron infusion. I read in another blog that an iron infusion is different than an iron transfusion. This didn’t make sense to me but I’m too nervous right now to look it up using medical resources. Anyone know if there’s a difference. I’ve only heard the word transfusion used when a whole blood or packed red blood cells are used, but I could be wrong. My “trick” of trying to make the person taking care of me feel good/relaxed/calmer… whatever has done really well by me. It works especially well when the person is new in their field (everybody has to be new at their job sometime). It also helps me feel better if I think the person is having a bad day and comes in to take care of me and he/she is in a pissy mood. Sometimes healthcare providers forget that they are there to help you with your problem and not v.v. because maybe terrible things are going on in their lives. Taking 5 minutes of my time to allow them to tell me about their day or to let them sit down and rest and relax while drawing my blood or starting my IV is good for me and good for them. I can’t say for sure that it helps them to be successful 100% of the time on the first try, but 95% of the time there appears to be a direct correlation. I only use this philosophy when it comes to healthcare workers – probably because I’ve been on the other side for so long. In other environments where I am the “customer” I have to say that I’m not always as nice (okay, that’s an understatement).
Now for those of you who have persevered (a good quality) through my “lecture” this far, I’d like to also share with you the other side of the coin and some of your rights as a patient. Now don’t laugh because of my limited vocabulary… You don’t have to be cared for by anyone with a pissy attitude. They can take a flying leap and go home for the rest of the day until they can come back with a better disposition. I have no trouble speaking with a supervisor or requesting another nurse or technician. The general rule when starting IVs is that if you can’t get access on a patient in two tries, it’s not your day and you need to call another member of your team (unless the only other choice is an intern, then, keep trying, you are the patient’s best option still). If you KNOW for sure that you are what is called a “hard stick” for whatever reason, you may request that a member of the IV therapy team be called to start your IV. You may have to wait longer but it will be worth it. You can also help by going to your appointment being as hydrated as possible, holding your arm down once the tourniquet is applied so that gravity helps blood flow go to the intended IV site, and lastly, the nurse can also apply a “hot pack” if none of your veins are “popping up” that day. Lasty, remember that it is more important for the nurse to be able to feel your vein than to be able to see it. It’s nice to have both and it took my a long time to realize this but looks can be deceiving, even when it comes to veins…..
I wish all of you who are reading this post the best possible health, now and in the future and remember, take what I’ve said with a grain of salt. I am partially distracted by watching the clock and counting down until I have to leave for my appointment….
What a nice post to read, Gayle. I’ve (I hope) put your suggestions into my memory banks and I’ll try to do my part before I get there, and I’ll remember about the hot towels, too.
Tracy, if having several sticks and getting iron
Is a your idea of a long day, I pray you never really get sick and have some real medical outpatient stuff done to you. An iron treatment is a cake walk to some tests you will have in the future.
BCS that is very nice of you to say. I was working nights at the time and it was a long day after working all night. I have had many tests that were harder that I didn’t blog about because I just didn’t have the energy. But I’m glad that this posted helped MOST of the people who have stopped by. If it didn’t help you then I’m sorry and perhaps you should move on. Have a blessed day
Hi all.. Well I go for my first IV of Iron on Friday morning. I really hope this works. I have been doing the Iron pills for the last year. And it didn’t work. My level started out at 5 and only went to 9, I am so tired, drug out feeling. And my legs ache terrible. I don’t know if this has any thing to do with low iron level or not. But these leg aches are killing me. Hope someone out their can answer my questions, Thanks…. Have a good evening..
I don’t know about leg aches specifically, but my experience was that EVERYTHING hurt, and once my iron levels were up, the aches went away. When you consider that your muscles and organs aren’t getting enough oxygen when you are iron deficient, it makes sense that you’d hurt. Hope you start feeling better soon.
i am going to the dr. tomorrow to see what my counts are now my iron infusion was in feb. nd i am going to ask him about floradix to see what he says. let you know what happening . thanks for all your help. faye
Hi I’m havn this done tomorrow. I am 11 I am so nervous. Everybody says it doesn’t hurt that much it’s just a little uncomfortable. Well my mane questions are 1) do u have 2 wear a jonny??? 2) do u sit in a chair or bed 3) can u watch tv ??? I’m bringing my ipod & books 4) can u move ur arm?? I hate needles!!
2. You are in a chair, a lazy boy type. They will have blankets for you in case you get cold. 3. You can watch t.v., but you’ll probably be in a room with a lot of other people, and the t.v. will be on a cooking show or something like that–probably not something you are interested in. Your ipod is a good thing to take, but you may not be able to get internet. 4. You can move your arm. 5. We all hate needles; it will be o.k. The people there are very good with needles so they’ll make it “quick and easy.”
Tip: Take a lunch box with a snack in it. They’ll probably have a soda machine, but a snack might be a good thing to have. You may find you relax and go to sleep; I do.
I forgot to say that you wear your regular clothes, shoes and everything. You do need to have something on that allows them to get to your arm, so no long sleeves.
Thanks I think it won’t be a big deal but I am still freaking out lol it’s 451 I already woke up I can’t sleep. I’ll bring some snacks thank u. I have celiac so I probaly can’t have something from the snack machine. Well I am bringing my own blanket if my mom let’s me. I’m glad I can wear normal clothes!(: its ok if I don’t get Internet I have games on it & my ipod hardly ever gets Internet unless I am home. Well i can’t wait til this is over. Bye
Erica,
Just in case you see this before you go… It helps me to look away from the needle when they stick me. The needle is actaully removed and a tiny plastic tube is left in your arm for the I.V. If you have any questions don’t be afraid to ask. If you understand what they are doing it will be a bit less or an ordeal.
If you see this after you go let us know how it went.
Regina
hi its me Erica, thanks 4 writing 2 me. i didnt go home til 430! when they started i felt rly itchy & my legs were hurting. but they gave me something else & it was ok. some ppl played cards with me. there job is just go around & play with kids lol i watched tv a little, i listend 2 music. it hurt a little but not that bad. ifelt freezing tho & i slept a couple times. when i came home i slept now its almost 8 im up. i dont feel good): my mom said i will probaly feel better tomorow. i feel naushus. im tired 2 it feels like midnight. i am gonna watch the vmas i missed it last night, either that or i might go 2 sleep.
I’m glad you remembered to tell us how it went. I forgot to tell you that you’d be cold–it’s cold because the fluid going into your body is cold; that’s why they have all those blankets. I always get a ton of blankets, attempt to read or watch t.v., and then I wind up going to sleep in a nest of blankets. You’ll be better tomorrow, and as the iron takes effect in your body, you’ll feel better. You’ll be surprised how good you start feeling in a couple of weeks.
hi pat thanks i cant wait 2 feel better. i wantd 2 tell u something else but i forgot what! if i rember ill tell u. goodnite(:
Goodnight–you will feel better tomorrow; your mom is right.
hi i didnt rly feel better yesterday. i threw up in the mornig & felt weak. but 2day i feel ALOT better, EXCEPT my legs are hurting a lot ): i have a headache 2 but not that bad manely just my legs ): i hate it. i took tylinol but it didnt help me.
its rly hard 2 scroll allll the way down on an ipod
Hey there just wanted to give you a quick heads up.
The text in your content seem to be running off the screen in Internet explorer.
I’m not sure if this is a formatting issue or something to do with internet browser compatibility but I thought I’d post to let
you know. The style and design look great though!
Hope you get the problem solved soon. Kudos
Not sure if anyone is still checking
this blog but I had my first IV Iron infusion
yesterday. Everything was fine until about
30 minutes later. As I got out of the car
it felt like my legs weighed a ton & they
were in fire. Not itchy just very very hot,
from the inside out, my Mom said my skin
felt like it was burning. I called my Hem/Onc
& the nurse said take 2 Benadryl (They
gave me Benadryl and all the test stuff
prior to my iron also) and she would call
me in 1/2 an hour. My sister noticed that
I had hives also, again they never itched.
The Benadryl helped, I took 2 BTW, it
knocked me out for about 2 hours. When I
woke up the hives were almost gone but
I had aching joints (my fingers, hands,
wrists, knees, ankles). I couldn’t walk the
bottoms of my feet felt like needles were
sticking me. Took 2 more Benadryl slept
2 more hours woke up vomited what little
I had in my stomach but still with the same sxs to a lesser degree. Feeling a little better
now but is this what will happen every time?
Have to go back on 8 weeks…..
Call you doctor and let them know how bad your reaction was. There are other infusion options. If they choose to keep you on the same meds make sure they give you Benadryl during the infusion and take benadryl right after. The IV Benadryl doesn’t stay in your system as long as the oral Benadryl. Most important is to tell your doctor.
I have had several infed infusions. I usually have a reaction to the first one in the series and then little to no reaction to the other three. I am just about due to start a new seriers.
NwendyJ I hope you will do better with your next infusion. I think you got some good advice about letting the doctor know of your reaction. They will be better prepared to handle your reactions the next time I think. If they seem unconcerned, please tell the nurses of your worries about it so they can address that well. Have you read through the blog here to learn about natural options that may help you address your anemia? Feel free to email me at kimberdixon@gmail.com if you would like to learn some things you can do to boost your iron naturally. I’ve been able to avoid having more infusions by doing some other things. I was glad for the infusions when I did get them, but now I’m happy to NOT have to have them. I’d be glad to discuss this stuff with you one on one.
Warmly,
Kimber
Stop belly aching all of you!! My god I have had over a dozen iron infusions and life goes on! Posting drama of your ordeal!! Grow up and move on!
Dear Kim,
You are not helpful to the needs of the people who come here. Why did you come by at all? To be superior and better and to talk down to people who are struggling healthwise? Sorry to be blunt with you, lady, but your rude brand of pull yourself up by the shoelaces isn’t helpful to people who have serious and ongoing health issues that cause anemia. I’m SO GLAD for you that you did so well, but again, why be here if that is the case? I don’t see that you have anything of value to offer to the people asking questions here.
Please check your ego at the door in the future if you insist on coming back and get off your high horse and think of something that might be an encouragement instead of just one more put down for a sick person to handle.
I think you seriously mis-read Kim. She has been there; she has helped people with this blog; she has been unfailingly supportive of everyone who has asked for her support. Telling those people who might be able to get some help from natural aids that it is possible, for some, not for all, is a service to those who could be helped. I’ve had infusions every 6 mts. and felt horrible a month before the infusion and a month after the infusion for, literally, years. I was able to go over a year without an infusion, and without the dreadful fatigue that happens as I get more and more anemic before the infusion can be scheduled, by beginning to use one natural aid which is readily available in health food stores. I’ve mentioned it before on this blog–but, obviously, since I’m not a doctor, my experience is not a recomendation for others. I suspect Kim feels the same way. Experiences another person has had can help others–and it isn’t a matter of “talking down” or ego.
Really Pat? I believe “I” was there to help people and was supportive of you for natural things and then you in turn supported natural things. Are you mistaking Kim with KIMBER? Because Pat, I think it was me who helped you a time or two and I actually don’t remember this Kim being helpful and certainly thought her was rude. To each his own…but how was her comment helpful to someone wanting to go a natural route? Or someone struggling to get infusions and confused about how they work? How was it supportive to someone who has been dragged through years of not getting help who finally gets a diagnosis and can get better? I think it was you who stepped up and helped people when this blogs owner wasn’t able to be on here posting all the time. Please don’t tell me that THIS Kim is the blog owner Kim because I know she doesn’t bash people that way. I’m just amazed you would support what was posted about getting over the drama and just “getting over” the infusions. People come here to be helped and supported, NOT to be told their questions and concerns are DRAMA. That doesn’t sound like Kim who owns the blog at all. OR me… I judged it based on how curt and insenstive it was. IF it was the owner of the blog, then she probably should just shut down the blog because she apparently doesn’t think that people are helped by discussing. I went by to support her in what she deals with for her son…THAT post didn’t sound like her at all. She seemed a lot more compassionate than to tell people to just “get over it.” I mean if that is the attitude, why have this blog at all? Her first post was all about her situation of getting help finally…why would THAT be ok and no one else’s be ok? I think we are talking an entirely different Kim. Common name. kwim?
OPPS—–SO SORRY. I THOUGHT YOUR REPLY WAS SOMEONE CRITICIZING YOU, KIMBER. MY REPLY WAS DIRECTED AT A PERSON I BELIEVED THOUGHT YOU HAD AN EGO AND WEREN’T HELPFUL.
For my next act, I’m going to learn to read.
I apologize.
Hey Pat…I see the owner is Tracey. Ok…I don’t read so well either OR remember! Sorry! But please do keep greeting people here. Did you see the notice that some new people can’t scroll to the bottom of the blog to get information? :sigh: That makes me feel so bad. As for the “KIM” gal who posted…she apparently posted directly under Tracey’s opening post. Wow…and old post if she had cared to look at the date! What a HARSH comment to people who are suffering. Made me hot under the collar!
I agree. When I was having to get injections every 6 mts, sometimes more often, I felt so alone and like such a total weird person–I mean, really, who “leaks” blood internally? When I discovered this blog it made me realize I certainly was not alone; there are a lot of us having to get infusions–even if I don’t personally know anyone who has to. The blog made a difference to me, and I suspect it has to others, and “Kim” was just plain rude, and definitely unhelpful.
Pat…YES! I agree that it was a help. I hope Tracey can get it fixed so all the new folks can scroll all the way down and find the same help. This was the only website I found that offered personal stories and someone might actually WRITE and support and share. VERY valuable help, too. Glad you are doing so much better!
Warmly,
Kimber
hi! i agree that what that person said was mean about belly aching): but anyway i came here b4 my 1st infusion & i had a lot since then!!! other then them being boring they were going ok. i was having them once a week then stopped then once a week. my legs woud get a little sore though i just took Tylenol. well last week my hematologist said im done!!! so im happy but i still gotta get bloodwork & stuff done. if u dot remember me im 11 ill b 12 next month. i have celiac & i have bad news bc i got diagnosed with diabetes type 1 2!! it sux so bad!!!!! well i hope everyone is ok if u have to get iron dont worry, it will b ok, if u feel weird tell them they will help u. u might feel a little weird & sleepy after. b brave!!! things get better & remember ur not alone cus we are all going thru the same stuff ❤
No problem
I think the blog owner is named Kim, too…but yes..Pat….”I” was totally supporting people here. I posted under the “Kim” because I just didn’t think it was a helpful thing to post. There have been several new folks here and you have been SUPER to step up and help them and I even saw the blog owner thank you for that. I think maybe you just flipped the posts in your mind. Totally ok…just wanted to restate my point that it isn’t helpful to tell people who are curious or scared or hurting to “GET OVER IT” the way the Kim did. I am SO sure that isn’t this blog owner. She just never seemed that kind of a gal. She deals with ongoing health issues with her son AND herself and always has been so compassionate. Anyway, Thanks Pat for being watchful of this blog and helping the newcomers out. I think sometimes their posts get lost up in the top of the blog and I hate to think anyone thought they were not being seen and heard. You are always quick to answer and really encouraging…keep it up!
Erica…how great to hear you are done with your iron IV’s! Sorry to hear of the diabetes diagnosis. You will do well though because your attitude is great.Take good care of yourself and be sure to come back with updates.
I have a daughter your age.I can’t imagine how she would do with all theses issues. Thank you for being an encouragement to others. You are very sweet to have concern for others. I wish you the very best!
Kimber
This isn’t my site but I wasn’t aware of articles on here but thought most things were just postings by people using the site telling of their own experiences. I think if you are quoting certain people who have posted, you probably should get their permission, but if that’s not possible, then yes, you should credit their comments because everyone gave what they could to encourage others. I also have a website starting up that is going to cover the material I’ve posted here and would be fine if you use anything I’ve stated on your site but would like to have credit. Unfortunately much of the information I gave was via email and then that person in turn came back here and requoted me…now taking credit for much that I did. It is frustrating in a way. Anyway, I wish you much success with your website. This material in a better format than a scrolling blog would be easier to access. This was the ONLY site I found though at the time I first began looking for information on anemia and I was SO thankful for it. People need this help. It would be great if more people put this information out there. Again…I wish you the best with your endeavor.
I totally agree. It was so helpful to me last year when I had to have my infusion giving me info on what to rxpect, etc. Now I need to find more info about pulmonary hypertension. I found PHAssociation. Org.
It’s helpful, but I’m having trouble with their boards and archives.
Have a good day
Looks like the website has been overtaken by trolls. What a shame.
Hi Kimber,
Thanks for basically overseeing things here recently. I have been away for awhile. 🙂 I did by best to delete the spam stuff but only went about 5 pages in!! Please ignore the trolls and keep up the good work!!
It really is a shame, and I have to wonder what kind of weird people get a charge out of doing that.
Wow! All of this nonsense is exactly why I have moderated commenting on my blog. LOL Anyway, I found this because I was searching trying to see if it was common to have difficulty getting an IV placed when you go in for IV iron. I was supposed to have my first treatment this week, but it didn’t go well. Two different nurses stuck me a total of five times and just could not get the IV placed. I have two blown veins and still need to go back in 2 days to try again. I have never been a “difficult” stick before, but I suspect the severe anemia has something to do with it. Once the second stick was a fail, I knew they weren’t going to get it because of the adrenaline kicking in and shrinking the veins further. At this point I’m just trying to find out anything I can that may improve my odds of getting the IV placed this time so I can begin treatment.
There was a post in the past that gave great ideas for making the IV sticks “better.” I know it is sometimes hard to get through all the postings to find what you want. Some of the suggestions that I remember are to make sure you are very well hydrated and to have them apply a warm compress prior to the stick. I’m sorry your first shot at getting your IV for the treatment went so terribly wrong. Hopefully the next attempt will work and you can get yourself headed in the right direction toward addressing the anemia. Wishing you the best. Hope you will come back and post how it all worked out.
I did go back through and find the post which spoke of things to try and one that I thought might help was…after they put the tourniquet on, lower your arm so that the veins have more pressure and bulge up nicely. The person who posted the suggestions was a medically trained person. I sure wish I could refer you easily to her post, but there just really isn’t any way to do that. I gave a couple of other suggestions in another reply to your post. I do hope this next time will go better for you!
Thank you. 🙂 I go in tomorrow. The whites of my forearms are still black and blue so the only options I’m going to give them are the tops of my hands and sides of my wrists, which are the standard places. I’m going to take hand warmers in case they say they can’t comply with my request for warm compresses. I’ll make sure to hang my arm down for a bit, too. I’ve drank six bottles of water today. I’ll set an alarm to wake and drink more half way through the night. Then I’ll make sure to get at least 2 bottles of water and no caffeine before I go in. I’m dreading it, but my hubby is off duty and so can go with me this time. If they don’t get it this time, I’ll request a transfer to a different treatment facility. I’ll let you know how it goes. 🙂 Thank you for your advice.
I’ll be thinking about you tomorrow. Please come back and post about how it went. Prayers and every good thought for you to have it go well so you can get to feeling better. I had most of mine through the side of the wrist but they did a couple on the top of one hand. I preferred the side of the wrist. You sure have done your part to make this go well tomorrow and I just feel that it will be fine. You can tell me to eat my hat tomorrow if I am wrong and then I’d be glad to! 🙂
doitalldiva , here’s hoping all goes well–bet it does.
When a nurse put a needle into a vein on the back of my hand, what felt like an electric shock shot up my arm. When she tried again, the shock went right through my body, and I became “shocky” with 60/45 blood pressure. A doctor came running, the pillow was taken away, and the foot of the bed was raised. It took a few minutes to get my blood pressure back up, and I still wonder what happened.
I have a question my boyfriend is doing this does it hurt at all he is very scared that its going to hurt
The infusion doesn’t hurt at all. If he has difficult veins, it may take more than one attempt to get the needle in, but putting a needle in doesn’t really qualify as a big hurt: it’s annoying, it causes tension, but it doesn’t actually hurt.
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