Recently diagnosed as a carrier but have an elevated farretin level of 286

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I was referred to a hematologist because I'm a haemocromatosois carrier with a ferritin level of 286. Saw the Dr. Today and he said all my liver enzymes are normal my saturation levels are normal amd although my ferritin level is 286 he wants to wait and see me back in 6 months and then go from there . Is this normal? Does this sound OK or should I seek another opinion?

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  • Posted

    A ferratin level of that amount alone isn't indicative of hemochromatosis I don't think. Mine is higher at 370 and isn't a trigger for any treatment other than monitoring
  • Posted

    My father is in the same situation and his doctor said the same. Most carriers do not load iron. Your ferritin can be upper normal and you are fine. I would continue to check every 6 months for life
    • Posted

      Thank you. I'm still new to all this so just seeking advice. My mother and aunt have the HH gene and are having phlebotomys. I'm just a carrier but I know carriers can load as well so with my ferratin being elevated I was just concerned and want to make sure going back in 6 months to recheck is normal. Thanks!
    • Posted

      Your not elevated. It's upper normal range. I agree with your skepticism toward doctors approach. However standard of care for your situation is to wait and recheck
    • Posted

      From what I've been told carriers are rarely if ever in need of standard treatment, but I daresay the opinions differ from doc to doc
    • Posted

      How I wish that were true my son is a carrier as am I we both have multiple joint pain ,ibs racing hearts and much more my son starting blood letting he has massive iron overload I'm currently waiting my iron level results ,have a feeling am next for blood let,ibs think a big problem is that when diagnosed as a carrier there are new genes that are not tested for,much more research is needed it's so overlooked hey .

  • Posted

    Agreed that the level you are showing is not considered high according to what we've seen.  Normal range is 11-307 according to all the tests I've seen.

    I have hemochromatosis and my children are carriers.  When asked the hematologist that I see about this she remarked that carriers will normally have elevated levels and should not be a concern.  It's probably a good idea to continue to be checked to be on the safe side.

     

    • Posted

      Thank you. I'm starting to feel better after all these replies. It's a scary thing and my first doctor didn't know much about it at all. I've just been going off what my mom says because she has it and by what I read online and on different forums. I appreciate all the feedback. ( :
  • Posted

    The telling marker is your transferrin saturation %.  Is it higher than 45?  If it is not, you may have a slightly fatty liver.  Eliminate sugars and starches to bring that back to normal and your ferritin level will normalise too.

     

    • Posted

      40% is not in the classic haemochromatosis range.  Read Prof Pierre Brissot for confirmation.  Fatty liver is the most commonest problem.  I suggest you work on eliminating sugars and starches from your diet unless you are very thin.
  • Posted

    My doctor at ucla in los angeles says anything over 1180 is damaging to your organs.If i were you..i would make a blood donation. In the states it is legal to donate HH blood as it is not contagious. I wouldnt take a chance, we all have to manage our own health care now days
    • Posted

      I mean 180..sorry. because it causes arthritis. I would be afraid of that.. my mom is a carrier and has arthritis really bad
    • Posted

      180 is well within safe,even normal limits. I think your Dr might be mistaken there, there's no evidence I've ever read or heard to support that. He may of course know something noone else knows
    • Posted

      I have done extensive reading of official medical research and have not come across anything indicating problems with a ferritin level of 180.  However, your suggestion to donate is very good.  Donating blood is very good for everyone unless they are anaemic.

       

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