IV iron infusion–a long day

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. 

Iron deficiency appointment

FINALLY the long awaiting beginning to an end.  At least that’s what I’m hoping for.  I’m so hoping this is the answer to all my symptoms. 

I saw the hematologist today and we went over my medical history thoroughly.  He agreed that iron deficiency is probably the cause of all my symptoms that I mention here.  We talked about the work up I had done previously and what my primary doctor had said about this being normal since I’m not anemic etc.  He was quite thorough and answered all my questions.  He also agreed that the cause of the deficiency is likely the heavy menses and was quite happy to hear that I was having the uterine cryoablation done. 

Then he basically gave me 2 choices:  1)wait until after the ablation and stay on oral iron and see if it works after more time or 2)have a dose of IV iron for better absorption.  We agreed as a team that choice #2 was better since I had already done the oral iron for 3 months without much difference.  He said I was actually someone who doesn’t absorb iron through my GI tract very well. 

I will go back to his office tomorrow morning to have my iron infusion!  I will be there 4 hours………wow!  Since I have never had it I have to have pre-medications and then a test dose before the full dose.  He said if its going to work I will feel a difference in about 2 weeks.  I go for my follow up blood work in a month along with another office visit with him.  Originally he thought I would need several doses but once I told him about the upcoming ablation he is hopeful that this will be the only dose I will need!  Keep your fingers crossed and say a prayer for me please!!

Iron deficiency–second opinion

Since I have such conflicting opinions on this iron deficiency without anemia nonsense I decided to take matters into my own hands.  Sometimes being a nurse has it’s advantages.  Wink wink!  This morning after work I ran into one of my hospital’s best oncology/hematology specialists and ran my story by him.  He did agree that whether iron deficiency without anemia needs to be treated is still controversial at this point.  But he said if someone has symptoms of it then he would always choose to treat.  Then if their levels become normal and they still have symptoms then they need further work up for the symptoms.

Well, anyone who has read my blog for any amount of time knows I already had the work up! 

He said he would like to see me in the office with all my labwork I have had up to that point and we would go from there.  He also said that a low ferritin is common in a woman my age but that 7 & 12 are quite low and that he would like to see me around 100!!!  I went home and called his office and my appointment is scheduled for 4/28.

Now I’m really confused

All this iron stuff is really confusing me.  I have my endocrinologist who is saying that my iron being so low is not good.  And that makes total sense to me.  You need iron to make blood etc.  So not having much cannot be good, right?  Plus I don’t feel good.  That is why I started this blog in the first place.  Because I had all these crazy symptoms:  fatigue, muscle weakness, shortness of breath with any exertion, difficulty swallowing.  And for those I had this HUGE work up as everyone thought I had myasthenia gravis.  But that was all negative and no one could figure out what was wrong with me.  Then the symptoms got better for a bit but then they have come back.  Not as bad but they are back.  Also back is the double vision.  It’s back with a vengeance along with the eye movement disorder that the eye doc had I think called superior oblique myokyma.  I had always thought the double vision was bad but the movement disorder is so much worse.  And they are here together making it double awful. 

My endocrinologist tells me based on my results that I need more iron but that she isn’t an iron expert and to call my primary doctor.  So I do and the short version of that story is that she tells me that since I’m not anemic and I’m a female who still gets my menses this level of iron deficiency is normal.  WHAT?????   Along with how I feel it’s normal???  Who do I believe?

So I scour the Internet and come across this article.  And it pretty much describes me and how I feel.  And it talks about how unrecognized this problem of latent iron deficiency is.  Latent meaning that you are iron deficient but NOT anemic.  So I call the primary doctor again and basically get the same response.  Take a multivitamin with iron if it will make you feel better but you aren’t anemic so you don’t need to worry.

So, now what do I do?  Ahhhhhhh! 

Endometrial biopsy

I talked in a previous post about having a uterine cryoablation.  Today I had my endometrial biopsy as one of the steps to get ready for it.  This had to be done to make sure there is no cancer in the uterus as if there is and the ablation is done it is bad news.  It was only slightly unpleasant and luckily quite quick.  The next step is a lupron injection once my menses starts. This thins out the lining as much as possible to make the area for ablation the most ideal to respond to the ablation process.  Then 24-30 days later I have the ablation and hopefully if all goes as planned I will have either no more menses or very, very light ones.

My thyroid is doing strange things & iron update

I went a week ago and had my pre-thyroid appointment bloodwork done.  This included my newest iron studies that were done after taking the Rx strength iron for the last 3 months.  Being the impatient patient that I am I was unwilling to wait the week until my appointment so I called my endocrinologist.  She said that my thyroid labs came back kinda funny and she was confused.  My TSH was up to 1.08 (the highest it’s been in a long time) but that my free T4 was off which it’s never been.  She wanted to know if I was willing to have it repeated a few days before today’s appointment.  So I did.  Today the T4 was back to normal but my TSH was 0.26!  She said she had never seen anyone’s TSH change so much in 1 week.  Mine had done this once before too.  She isn’t sure what to make of it.  My last ultrasound a month ago showed that there are no more nodes on it either.  Strange.  But I am full of hyperthyroid symptoms again…………..lovely as they are.  Except that I’m gaining weight this time.  Probably because my appetite is out of control though.  So, the plan for now is to check it again.

On to the iron studies:  my ferritin was 7 three months ago and now it is a whopping 12.  Major greatness after 3 months of oral iron therapy!  Off to call my primary to see what to do about it now.