1. Community
  2. Blood & Immune System
  3. Haemochromatosis

Carrierss of Hemochromotosis

Posted , 4 users are following.

Mrs._Z
Mrs._Z

Does anyone have hemochromotosis that was diagnosed as a carrier?  This whole genetic thing is very complicated.

1 like, 8 replies

8 Replies

  • sheryl37154
    sheryl37154 Mrs._Z

    Posted

    Technically not supposed to happen.  Although a lot of heterozygous have high ferritin levels for other reasons.

    Hyperferritinaemia can be caused by fatty liver, alcohol abuse, inflammation, malignancy, lifestyle (as in poor diet - too much sugar and starchy foods which can't be metabolised), and probably more reasons.  It has been found that eliminating sugar and starchy foods, will reduce your fatty liver and your ferritin levels.  A venesection now and then wouldn't hurt either.

    There is also another gene which causes ferroportin disease but it is deemed so rare that drs do not want to test for it.  If you live in the UK you might find a haemotologist who is interested enough to do the genetic test.

     

    • Mrs._Z
      Mrs._Z sheryl37154

      Posted

      Thank you.  I guess no one knows enough about hemochromotosis which is part of the problem.  I live in the USA and some Drs. here don't know anything at all about this condition.  My brother was diagnosed 23 years ago and when I was tested in 2007, the Dr. only ran the ferritin test.  My level was high (600's) and led me to think I didn't have it and no treatment for high ferritin.  It was only when I asked about the genetic testing that she ran all the tests indicating I had it.  Maybe you can understand why I'm so confused and reaching

      for answers..  

    • sheryl37154
      sheryl37154 Mrs._Z

      Posted

      Knowledge of the existence of haemochromatosis has been around for decades, however there certainly is a lot of denial about it, so therefore ignorance prevails.

      My dr took 9 years to diagnose and only when one of my hips broke up.  Since had to have both hips replaced.  Lots of ongoing complications because of delayed diag and treatment.

       

  • jmcg2014
    jmcg2014 Mrs._Z

    Posted

    i was recently diagnosed as a carrier, and was still told to avoid high iron diet and i have raised ferratin.  According to the doc ive to be monitored every few months.  As far as i understood being a carrier meant you wouldnt develop symptoms or problems, but the docs still seem to be being cautious which i cant say i understand....
    • Mrs._Z
      Mrs._Z jmcg2014

      Posted

      I have the two genes (both from Mother & Father), but since my kids need to be test as well as my nieces, they have been sharing their results which is very confusing.  My niece recently learned she too is a carrier but will require regular testing.  She did not have elevated ferratin, which leads me to think they are approaching this with great caution.  It may be a good idea to ask if something else is causing your high ferritin levels.
    • sheryl37154
      sheryl37154 Mrs._Z

      Posted

      As Mrs Z says, and as per my earlier response there are a lot of causes of high ferritin, not related to being a carrier.  However, it is good that her dr is monitoring it, but the cause needs to be addressed.  So push for action on this.

      It is best to educate yourself on it to ensure your daughter gets the appropriate treatment.  Contact your country's haemochromatosis association, check out Iron Disorders Institute website - lots of info there.  You might even find a NAFLD assoc for info.  (Non Alcoholic Fatty Liver Disease).

       

    • sheryl37154
      sheryl37154

      Posted

      Hmm, that was meant for jmcg2014, and I think I was responding to another blog - e.g. where does the daughter come into it here????  That's what HH does to you too sad

      But see my response to Mrs Z about reducing iron intake - drs do not get this right.  However, don't have red meat everyday, and the proverbial spinach does not have that much iron in it anyway.  Search for that book I mentioned for answers there.

  • terrihigashi
    terrihigashi Mrs._Z

    Posted

    My mom is a carrier, because I have seen the gene test and my father had it. Oddly enough, I have repeatedly told my mom, some of the symptoms that I have are as if she has it. She does not have high iron, but I think being a carrier, she has bad arthritis and a few other minor things, that I feel are because of this.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.