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Carrier with C282Y Gene & High Ferritin

Posted , 8 users are following.

Mrs._Z
Mrs._Z

I have Genetic HH and my children have been tested and don't have both genes.  My daughter who recently had blood tests had a ferritin level of 479 and carries the C282Y gene.  Is it possible that she could have HH.?  She has symptoms that resemble those of HH.     

1 like, 25 replies

25 Replies

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  • Pudding80
    Pudding80 Mrs._Z

    Posted

    Mrs. Z,

    You pose an interesting question and I have read the replies with interest.

    When I have my check-ups with my haematologist I sometimes see the registrar.  I asked the last one I saw what he was researching and he said he was researching people with heterozygous HH who have symptoms of HH.  I live in London and go to clinic at my local hospital.

    • Mrs._Z
      Mrs._Z Pudding80

      Posted

      Thank you for your responses everyone  It is overwhelming with all this information and also shows that no one knows for sure  I do realize that her ferritin is far too high She is 42 years old and lives out of state so I will continue to encourage her to follow up with the haemotologist or get another opinion to rule out other possibilities  I can only continue to impress upon her the importance of finding the answers here  Thanks again 
    • sheryl37154
      sheryl37154 Pudding80

      Posted

      I hope this registrar publishes his findings - or else send his data to a high level researcher who does get his/her papers published.  Otherwise the information does not get out there.

       

  • mary03211
    mary03211 Mrs._Z

    Posted

    I just got my dna test results, am a c282y carrier and I too have high iron results, was why i was flagged for HH testing.

    My health is pretty crap--had a diagnosis of hypothyroidism in 2010, then continued probs, had knee issues, during surgery diagnosed with psoriatic arthritis, then end of 2017 thought HH might be the explanation for all the continued issues--but nope. 

    I am so tired all the time, joint pain and it all feels like a merrygo round that never ends. I stopped taking methotrexate when i was tested for HH in case it had been a misdiagnosed consequence of HH, now I don't know what to do as I didn't feel much better on it.

    I am 30-40 pounds overweight for my height, am thinking weight loss may be the last piece of the puzzle I've yet considered an important factor. 

    Hard to get motivated when you feel so tired all the time, but I am sick of being so sick, ya know?

    I came to the thread as I too wondered if being a carrier with so many symptoms might now be a "thing", but seems it's not, or at least there is no real evidence as yet.

     

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