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Hemochromatosis

Posted , 4 users are following.

barry37533
barry37533

anemia and iron overload at the same time.

1 like, 7 replies

7 Replies

  • barry37533
    barry37533

    Posted

    I was diagnosed with Hemochromatoisis 15 years ago and have been treated ever since with phlebotomies.  I now need  to have this done once a year to keep the numbers no higher than 100. I am now 65. Recently my numbers went up to 550( probably because of my diet) I was also found to be border line anemic at the same time. Has anyone heard of such a thing. My Dr. said it was a mystery to him but went on giving me a phlebotomy once every two weeks till my numbers went down. I was to weak to give blood every week. It took 5 visits to get my numbers down but after the last one it was below 25, so my Dr. put me on Iron supplements of 325 mg. a day for 6 weeks to bring the numbers back up, then he will check it again. I am really weak now but the Iron supplements seem to be working which has only been a week since I started them. He also said I could have a steak for dinner after the last test, my numbers for amenia were that low.  In his defense he is a leading Cancer Dr. here in Utah and one of the few my insurance will cover. I say this in case the only answer is I'm seeing a quack and get another Dr. Any real information would be of great help and relief. 
    • sheryl37154
      sheryl37154 barry37533

      Posted

      Were you diagnosed with a genetic test, if so are you homozygous?  What is your TS%?

      Homozygous hemochromatosis people are generally able to replace their Hb quickly.  If you are not homozygous, then you probably don't need that many venesections and your iron overload has another cause, e.g. fatty liver (generally caused by diet, i.e. sugar and starches).

      Other causes of anaemia with HH are loss of blood in gut/colon, coeliac disease, helicobacter pylori.

      Cancer drs are usually haemotologists too.  Mine is, but I am yet to come across a 'hemochromatologist', i.e. someone who knows a lot about hemochromatosis.

      Eat some steak regardless if you like it, it does not have much of an impact on HH, unless you have it every day.  Look for The Hemochromatosis Cookbook in your library for information on why you are allowed to eat red meat.

      Add vit C to your diet with meals (usually avoided as it promotes the uptake of iron) and avoid tea, coffee, dairy products (calcium), red wine with your meals which reduce the uptake of iron, till you 'normalize'.

      While I am homozygous C282Y which is usually more aggressive requiring a maintenance phlebotomy every 3 months after de-ironing, my husband is homozygous H63D which is milder.  After being de-ironed, he was  found to have Hodgkins Lymphoma.  After chemo and radium therapy, his ferritin has never increased since.  Not a pleasant 'cure' though!

       

    • barry37533
      barry37533 sheryl37154

      Posted

      Hi Shery, thanks for your reply. As you can imagine I've had a lot of blood tests, I'll have to check on the homozygous/ TS%.  I had prostate cancer 15 years ago,am now cancer free. I have lupas, RH and some other auto immune diseases that he says are contributing factors. My first cousin also as Hodgkins Lymphoma. I've read about the cook book and was drinking black tea, diary products to keep the iron at bay when he was taking blood. Maybe the combonation of it all worked better than I thought. Now I'm taking a break from all of the above till I get "normal" again so we can solve the "mystery"
  • Katy8103
    Katy8103 barry37533

    Posted

    Hi Barry.

    What a terrible predicament to be in.  I am in a similar situation although my borderline anaemia is caused by the regular venesections I'm having. 

    It it does seem a bit odd to be loading iron and suffering anaemia at the same time when regular venesections is not the cause.  I don't think your doctors a quack. He's probably just trying to manage the balance between your HH and anaemia. Saying that though it's not getting to the root cause of your anaemia. 

    Are you able to see a Haemotologist under your insurance?  

    • barry37533
      barry37533 Katy8103

      Posted

      Hi Katy, thanks for responding. Yes that is his specialty. Once I get my Iron levels back up he's talking about a bone marrow biospy and some other things.
  • Mrs._Z
    Mrs._Z barry37533

    Posted

    I did read something about becoming anemic after about 20 phlebotomies but am not sure that would apply to everyone.

    I just had my 12th phlebotomy and my ferritin reduced to 80, but I am slightly anemic.  My Dr. indicated that it was from the phlebotomies.  I could actually tell when my hemoglobin was reduced to below normal as I was very tired.  She believes that this will take care of itself once the weekly phlebotomies are over.  I had my 13th last week and will know where I'm at with both levels at the end of this week.

    • barry37533
      barry37533 Mrs._Z

      Posted

      Hi Mrs. Z.. I'm sure (or hope) there is an explanation for mine. My numbers were 550 puls I was anemic when I went in, 6 phlebotomies later it was close to 0 and of course now I was really anemic, could hardly hold my head up. I'm feeling better now that I'm on 325 mg of Iron dayly but I dont see the Dr. till mid March to test my blood levels.
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