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Hemochromatosis treatment issues

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whitney48596
whitney48596

I was recently diagnosed and started treatment in Nov 2015 every two weeks. My doctor expects I will be done with phlebotomy by mid March. The question I have is that the last 2 treatment, I feel terrible. My hemoglobin is 11 and I have trouble with my blood clotting. I actually feel worse since starting treatment. It goes to extremes fatigue and then insomnia. Is this normal? Will I feel better when the ferritin reaches 50?

1 like, 8 replies

8 Replies

  • jmcg2014
    jmcg2014 whitney48596

    Posted

    What were your levels when you started? Maybe you've got to too low a level? The problem is many GPs aren't at all knowledgeable about this issue and go ahead with treatment without fully understanding if they should actually be doing anything at all or what the final aim should be. All too common unfortunately
    • whitney48596
      whitney48596 jmcg2014

      Posted

      It was 800. My last dr visit, the ferritin was 250 and my liver enzymes had dropped dramatically. My doctor is very familiar with treating hemochromatosis. Unfortunately his office is very cold. It is business as usual for them while it is all new for me.
  • GillianA
    GillianA whitney48596

    Posted

    Hi Whitney,

    What kind of hemochromatosis do you have?  If you have ferroportin loss-of-function disease (aka hemochromatosis 4A), which gives high ferritin but not high serum iron and not high transferrin saturation), your hemoglobin drops with phlebotomy.  When your ferritin levels are high, your body can usually make enough hemoglobin to allow phlebotomy every week or two, but the lower your ferritin gets, the longer it takes for your body to make enough hemoglobin for you to have another phlebotomy - up to 6 weeks or so as your ferritin gets closer to 50 ug/L.  So if you have this kind of hemochromatosis, you may need longer in between phlebotomies for your hemoglobin to recover.

    When you say you have trouble with your blood clotting, do you mean that it doesn't clot as fast as usual (i.e., you bleed and/or bruise more?) or that your blood is clotting faster than usual or more than usual, or?

    It might help to write down your questions so you can show them to your doctor; e.g.,

    What kind of hemochromatosis do I have?

    Would going longer between phlebotomies make my hemoglobin higher and make me less tired?

    Why is my blood clotting (less or more or whatever it is doing)?

    I've found most doctors are happy to get a short list of clear questions, although I'm sure that are some who wouldn't be - but putting together a short list of your questions might be worth a try?

    I hope some of this is helpful -

    • whitney48596
      whitney48596 GillianA

      Posted

      My blood doesn't clot as fast.

      Thanks for the questions. I will definitely ask my dr. My relationship with the Dr and the office is not great. I become so frustrated because he is always 2 hrs behind even on the first appointments of the day.

      After I get to 50 on the ferritin, how often will I have to see my dr?

    • GillianA
      GillianA whitney48596

      Posted

      After you reach target ferritin level, how often you have to have maintenance phlebotomy will depend on how fast you build up iron again.  My doctor would like to see me maintain between 20-50 ug/L because in his experience this is the ferritin level at which most people with hemochromotosis feel best.  I have just started maintenance, but going by the rise in my ferritin, I'm *probably* going to end up needing a maintenance phlebotomy every 4-5 months or so.  I think, anyhow - time will tell!

      About doctors who are always late - sometimes the people at the front desk will know how far behind the doctor is and are willing, if you phone, to say whether or not the doctor is running late and when would be a good time for you to show up.  If the staff at your doctor's office aren't able to make predictions like that, then you could try doing what I do - I take something along with me to keep me occupied while I'm waiting.  I find it a great way to catch up on mending, or reading.  Sometimes I just take advantage of the quiet time to think, or update my to-do list, or make notes on ideas.  And sometimes I just lean back and have a nap . . . .

  • Mrs._Z
    Mrs._Z whitney48596

    Posted

    It sounds very familiar.  I too feel worse now than when originally diagnosed.  My hemoglobin has also gotten to be around 11.  I've been going weekly for phlebotomy treatments and can't seem to get to the number the Dr. wants to see me at.  I was diagnosed in Oct. and have had 14 phlemotomoies and my most recent ferratin level is 72.  I feel like I'm going to sleep my life away.  I can't answer what will happen at 50, but hope to hear that all of this will be gone soon.
  • haircrazydaisy
    haircrazydaisy whitney48596

    Posted

    I also felt ill after starting venesections.  I had my first round before Christmas and I ended up at anaemic levels.  Once I stopped having them, it took a couple of weeks to feel "normal" again & I had a definite easing of HH symptoms.  I am now feeling the return of symptoms and I'm coming up to three months since my last venesection.
  • Mrs._Z
    Mrs._Z whitney48596

    Posted

    I'm glad to hear that the symptoms are the same for others.  My Dr. indicated to skip last week, so I will go again this week for my blood test for ferratin and blood chemistry.  I am anxious to find out where I'm at since I was so close (72) prior to my complaints about the anemia.  I do feel better since the first couple days after the phlemotomy so I'm hoping that's a good sign.  Hoping to get to the three month stage soon.  Thanks for your comment.
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