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Heamochromatsis high iron and TS low ferritin

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louise1313
louise1313

hi can anyone help me? I have haemochromatosis type 1. I feel terrible, my iron is high 38, TS high 80% but normal/low ferritin of 25. specialist doesnt want to know as ferritin normal but im concerned about NTBI and the damaging effects. I know this isnt right but i cant find anything on this? Ive read about iron avidity but ive not had venesection so this cant be true for me. please help!

1 like, 2 replies

2 Replies

  • eric89660
    eric89660 louise1313

    Posted

    Have you tried donating a pint of blood at a donor unit? That's what I do when my TS goes over 50%. They won't do a venesection/phlebotomy at the hospital if my ferritin is below 50 but having spoken to patients on American forums I know it's safe to do so. That normally reduces my TS to normal levels. As long as your haemoglobin is okay you should be able to donate but don't mention haemochromatosis as your registration will take weeks or months and involve a letter from a doctor or specialist. Your blood is safe for any donors to receive and it is checked before anyone receives it.

  • eric89660
    eric89660 louise1313

    Posted

    Hi Louise. Did you find any solutions to the high serum iron and TS plus low ferritin?

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