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Should I be tested for Haemochromatosis?

Posted , 3 users are following.

jenny157
jenny157

Hi there,

I am a 34 year old Irish woman living in the UK. I am suffering from joint pain, particularly in my fingers and tiredness. I have also been previously diagnosed with IBS and had spinal fusion surgery last year due to spondylolisthesis and disc degeneration.

I found out in the last few months that my uncle has hemochromatosis and that both of my aunts are carriers. My father died last year from heart failure at a young age and suffered for years with swollen joints, tiredness and diabetes type symptoms.....the family history was unknown so he was never tested. His mother also died at relatively young age from liver cancer and had heart disease....again she was never tested.

I had a routine blood test about six months ago and was told I was anaemic so thought that ruled it out......is it likely that I have haemachromatosis and should I make sure the dr tests me for it?

2 likes, 3 replies

3 Replies

  • gemma152
    gemma152

    Posted

    If I were you I would get tested. Iron stores and blood iron levels can differ. Anaemia doesn't rule out Haemochromatosis. As far as I'm aware your GP can test your Iron stores in particular which could shed more light.
  • Lynda
    Lynda

    Posted

    Hi with your Irish background I would most certainly be tested for Hereditary Hemochromotosis. HH. I have HH and my Fathers background is Irish. Once diagnosed you will know if you have just one marker like I do or possibly two if your Mother is also a carrier. Once you are under the watchful eye of your Doctor they will help you to reduce and keep down your levels for as long as possible culminating in needing to take blood from you to reduce the iron levels. Once detected it is treatable by being kept under control so don't let fear consume you. Take the test, await the results and then you can act on the information. A lot of people have iron overload and take control of it, it is not life threatening if caught early so put your mind at rest at the earliest moment. Good luck x
  • megan36105
    megan36105

    Posted

    I agree with the first two replies. Definitely get tested again.

    When I was younger I suffered from anemia and while this sounds strange, gemma152 is completely right. Anemia is a different kind of form of iron overload and it can sometimes lead to the complete opposite, leaving you with extremely high iron levels. Just because you are/were anemic doesn't mean that you can't develop haemochromatosis.

    I would especially get a second opinion since people in your family have passed away from cancer and heart disease. When haemochromatosis goes untreated it often leaves to dying earlier due to things like organ failure and when the iron sits around your liver it can lead to cirrhosis of the liver or liver cancer.

    But like Lynda said, don't freak out right now as it is treatable. I'm not sure how old you are but there is the potential that some damage has been done, but so long as your iron levels come down to a normal amount, you should pretty much rectify all of that.

    I was a lucky one and was diagnosed at age 21 so I have zero damage done to my body from this. At the time I assumed I was anemic because I had suffered form anemia earlier. It's difficult because anemia and iron overload have extremely similar symptoms so I'm very happy that I went to my doctor instead of just assuming and then trying to "compensate" by taking iron supplements. That would be an extremely unwise decision.

    And again, like it's been said before, haemochromatosis is very common in European backgrounds so there's one more reason to be tested again.

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