Does both parents have to have Haemochromatosis

Posted , 5 users are following.

My mum has it and I have it but my dad doesnt . The doctor said thats ok but everything I read says both parents have to have it

1 like, 11 replies

11 Replies

  • Posted

    Someone can either be a carrier, have Haemochromatosis or neither. Both parents need to be carriers or to have have haemochromatosis to pass it on to a child. 

    Someone is unlikely to know they are a carrier because they will have no sympotms and the only way you would know is if your father had the genetic test. 

    • Posted

      Hi Steve , thanks for your reply my dad got mixed up by the doctor saying he was fine he actually is a carrier
  • Posted

    Hi josie77, I'm told I have the 2 mutants, one from each parent. My dad has passed but we're waiting to get results from my mum. Nobody had ever been screened or not that we ever knew until I was diagnosed 2 months ago. My grown up children are being tested as we speak so awaiting their results. As we are my brothers. I understand that they could have it or be carriers but if my husband doesn't have it or is a carrier then they can be any of the above or void!! When I get results back I will try to make more absolutely sense of it

    • Posted

      Your children will at least be carriers, having inherited one of your positive genes.
  • Posted

    You are right Josie, both parents have to be at least carriers for a child to have classic haemochromatosis.  I have found that some drs confuse high ferritin from other causes with haemochromatosis.  You have to have the two genes for a true genetic diagnosis.

    There is ferroportin haemochromatosis which occurs with one gene but it requires a different genetic test.

    Then as you found, some drs tell their patients they are fine when they are carriers (which they are) but that does not tell the genetic story.  That is why it is important to ask for a copy of the genetic results.

     

    • Posted

      Thanks Sheryl, its very confusing our doctors know very little about it . I myself have now been diagnosed and when I asked what does it mean I was told to Google it .Not much help
    • Posted

      It is better advice rather than a dr pretending to know about it and giving wrong advice.  We have to educate ourselves in ensure we get appropriate treatment.  Look for official reports - medical research, and your country's haemocromatosis association.  Although some of them stick to some myths too.

       

  • Posted

    sheryl37154. Its so frustrating. i have just had this conversation with my mothers GP , who neglected to ask for a genetic screening so when he put in another test, the screening?? said they will freeze the blood until such times they need to evaluate!!! what is that all about. I have told them I have HFE , 2 genes , one from each parent and that they need to find out as otherwise where did i get it???? My diagnosis ( long time coming) as written is Genetic Haemochromatosis Homozygous for HFE ( 845G 2A and C282T) Can anybody enlighten me further. Because I was never diagnosed even though I have presented degenerative spodylitus/spondylosis in my lower spine,  in my 20s, put off back surgery , had a hip resurfaced, Iron fist , wrist doesnt like extension exercises. I am an exercise coach and therefore i look the picture of health so what can i say except that my iron overload stored up in my liver and I now have irreversible cirrhosis!! which could have been avoided.

    I still do not have either of my sons results  due to Doctors saying all feritin levels, bloods have come back fine so what do you do except tell the doctors to apologise for their mistake and ask for a genetic screening to be done. I have had , like yourself to do all my own research as they seem to know very little, even the consultants need a rocket up their back side!!

    • Posted

      Our haemochromatosis association in Australia provides a letter not only to pass on to relatives about haemochromatosis but instructions for drs to do a genetic test as first degree relatives are entitled to a rebateable genetic test.

      Check with your country's association to see if they have similar, or even phone them for their advice on this.

      I have no idea why they are "freezing the blood until such times they need to evaluate".  I have never heard of that.

      You have some serious health issues.  Your genetic test results confirm that you have haemochromatosis.  What was your ferritin and TS% results?

      It is criminal when diagnosis is delayed and we end up with serious health issues.  My gp took 9 years to diagnose despite my having serious symptoms (no google back then) as 'I did not look like I had it'.  Not till my hips broke up from oesto-necrosis was it diagnosed.  I ended up with so many problems I had to give up work early.

       

  • Posted

    No both parents do not have to have it.

    There is a difference between heredity hemochrotosis and being a carrier of hemochromatosis. So one could be a carrier,that they just end up with it later on in life men more then women.

    Herederity is in the life line .

  • Posted

    New question to all: has anyone experienced darker or black poop after trying to reduce iron in body by way of inhibitors in food/ supplements eg tumeric whilst having weekly venesection./ blood donation? If so does that mean you are excreting excess iron assuming no internal bleeding?

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