Treatment Blog – Hereditary Hemochromatosis

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Happy New Year!

I decided that I would start blogging about my new treatment that I am receiving through the National Institutes of Health (NIH). At the end of last year, I was accepted into a clinical study at NIH for people with hereditary hemochromatosis. I wrote a post about the clinical trial that you can read here. Basically, the study is intended to evaluate the effectiveness of a test called MCV in guiding phlebotomy (blood drawing) therapy in patients with hemochromatosis.  I did my preliminary screening last year in August and began receiving phlebotomies at NIH shortly thereafter.

Preliminary Screening

In order to participate in the study I had to go through a large number of blood tests and I had to be screened again for the genetic mutation that is causing my hemochromatosis.  I had already been screened years ago but NIH wanted to retest me.  The test confirmed that I am genotype C282Y/C282Y.  They also got a baseline for my TIBC, ferritin, and saturation.  Overall, the initial screening was very easy.  I met with the two doctors who are running the study as well as several nurses. The only problem I encountered was during the blood draw. I think I must have been dehydrated and it made things somewhat difficult for the nurse but eventually they were able to get what they needed.

First Phlebotomy Session

As usual, I got lost on my second trip to NIH.  My directional sense is pretty poor but after wandering around for about twenty minutes I found someone who could direct me to the right place. In my defense, NIH is HUGE!  There are over 70 buildings and the whole campus covers 300 acres!  Anyway, the first session went really well.  The nurse was very nice and she did a great job.

Results:

Test DateNo.Inter wksPhle gmsIronHem
Ocue
HgbHCTMCVVariation
from 1st
Retic
%
Ferritin% SatTSH
8/31/2017018.353.991.00.0%2.5565611.76
10/12/20171050029118.718.152.289.5-1.6%1.936029
12/1/20172750026816.616.749.989.3-1.9%1.776031

So far my MCV change has been -1.87% from my first session.  The goal is to reduce my MCV by -3 to 5% less than the initial MCV.  I just went for another session today. I had to delay a few days because I was feeling dehydrated again. It’s very important to be well hydrated before any phlebotomy session.

That’s all for now.  I will keep everyone updated on my progress and how the study goes.

Thanks!
Jason


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