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:
And another of the lovely stuff going in:
An hour later it was done. It was 1pm at that point. I was starving and out of there! In a month I will find out if that is it or if I will need another.
95 Comments
June 3, 2009 at 12:19 pm
did you ever think that you have poor veins, dipsh*t? and it is not the medical personnel you should be criticizing.
June 6, 2009 at 7:02 pm
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.
September 8, 2009 at 10:02 am
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…
September 8, 2009 at 8:28 pm
Thanks Anna! That means a lot!
Tracey
June 17, 2009 at 7:57 am
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!
July 3, 2009 at 8:17 pm
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?
July 3, 2009 at 8:18 pm
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”
July 5, 2009 at 7:36 am
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
August 7, 2009 at 2:42 pm
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?
August 9, 2009 at 7:02 pm
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
September 15, 2009 at 7:27 pm
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?
September 15, 2009 at 7:28 pm
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…
September 18, 2009 at 1:50 am
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.
September 18, 2009 at 6:38 am
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
September 27, 2009 at 5:49 pm
Hd my IV iron yesterday. Still can’t
go to wirk because Blood Pressure
is to low.
October 17, 2009 at 12:28 am
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.
November 9, 2009 at 12:59 am
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
November 25, 2009 at 2:39 pm
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.
December 11, 2009 at 3:31 am
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.
October 23, 2009 at 10:51 am
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.
November 9, 2009 at 1:00 am
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
October 26, 2009 at 12:23 am
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!
November 9, 2009 at 1:01 am
Hi Elizabeth,
Hope all went well with your infusion.
Tracey
November 2, 2009 at 8:45 pm
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.
November 9, 2009 at 1:02 am
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
November 9, 2009 at 11:00 am
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
November 25, 2009 at 10:12 pm
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.
November 9, 2009 at 10:52 pm
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!
November 25, 2009 at 9:58 pm
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!
November 19, 2009 at 8:20 am
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
November 25, 2009 at 10:00 pm
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!
December 7, 2009 at 6:33 am
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
December 7, 2009 at 7:24 am
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!
November 20, 2009 at 9:17 am
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.
November 25, 2009 at 10:02 pm
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!
November 22, 2009 at 6:02 pm
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
November 25, 2009 at 10:05 pm
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!!
November 23, 2009 at 11:29 am
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!
November 25, 2009 at 10:08 pm
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!
November 24, 2009 at 5:17 pm
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?
November 24, 2009 at 6:58 pm
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
November 24, 2009 at 7:58 pm
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
November 24, 2009 at 8:11 pm
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
November 24, 2009 at 8:16 pm
Thank you so much. I’ll try to keep my impulsiveness in check and try to do as you suggest: wait.
November 25, 2009 at 10:11 pm
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!!
December 2, 2009 at 1:32 pm
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.
December 5, 2009 at 2:57 am
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!
December 3, 2009 at 11:12 pm
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.
December 4, 2009 at 11:14 am
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
December 5, 2009 at 3:01 am
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!
December 5, 2009 at 4:18 pm
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?
December 5, 2009 at 5:16 pm
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
December 5, 2009 at 11:19 pm
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!!
December 6, 2009 at 12:35 pm
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
December 7, 2009 at 1:06 am
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
December 8, 2009 at 10:35 pm
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
December 10, 2009 at 2:00 pm
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.
December 9, 2009 at 11:07 am
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
December 10, 2009 at 1:58 pm
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.
December 11, 2009 at 1:23 am
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.
December 11, 2009 at 11:01 am
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.
December 14, 2009 at 8:52 pm
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!
December 14, 2009 at 8:51 pm
Wonderful to hear Chantel!!!
December 11, 2009 at 1:28 am
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.
December 11, 2009 at 2:06 am
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.
December 14, 2009 at 8:54 pm
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
December 11, 2009 at 4:57 am
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.
December 11, 2009 at 10:57 am
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
December 11, 2009 at 7:43 pm
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.
December 14, 2009 at 8:56 pm
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.
December 11, 2009 at 5:27 am
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
December 11, 2009 at 10:57 am
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!
December 11, 2009 at 3:57 pm
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!
December 14, 2009 at 8:57 pm
Glad to hear that things went pretty well! Hope you are feeling better in a few weeks!
December 11, 2009 at 6:42 pm
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.
December 14, 2009 at 9:00 pm
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.
December 11, 2009 at 9:18 pm
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.
December 14, 2009 at 9:01 pm
I think it’s a bit of both Robert. Come on men….speak up!!! For Robert’s sake!!!
December 11, 2009 at 9:20 pm
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
December 12, 2009 at 1:51 am
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.
December 13, 2009 at 12:51 am
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
December 13, 2009 at 2:18 am
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.
December 13, 2009 at 3:58 am
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.
December 13, 2009 at 3:18 pm
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
December 14, 2009 at 9:03 pm
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.
December 13, 2009 at 9:28 pm
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.
December 14, 2009 at 9:05 pm
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.
December 13, 2009 at 10:39 pm
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
December 14, 2009 at 9:07 pm
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!
December 15, 2009 at 2:43 pm
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.
December 15, 2009 at 4:37 pm
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.
December 16, 2009 at 11:03 am
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
December 17, 2009 at 12:44 am
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.
December 22, 2009 at 8:26 am
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
December 24, 2009 at 1:13 pm
Merry Christmas to all. May the season and the new year be a time of peace and healing for all who suffer.