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Living with Haemochromatosis

Posted , 5 users are following.

michael1960
michael1960

In Febuary 2000 i was finally diagnosised with Haemochromatosis, something that took almost every Dr in the Hospital near on 2 yrs to find.

I am a 55 year old male living on the South Coast (UK). (West Sussex)

With a few of the symptoms/ side effects like Swollen knuckles on both hands that are visible, along with several other joints also giving me some pain now and then. A major issue i find is the tiredness,meaning i have to sleep most afternoons for an hr or so.

My Ferritin level was 4500, which took just over a year and a half to get down to a reasonable level.  It has been a long road for me, with depression also being a big issue too.

If anyone else has been down that road to,then i'd love to hear from you.

2 likes, 6 replies

6 Replies

  • angela28253
    angela28253 michael1960

    Posted

    Hello Michael, you are the only person that has a similar story to my husband. We live in the USA, my husband was diagnosed just about 2 years ago. His ferritin was over 4000 as well. It took weekly phlebotomies for a year and a half to get it down. 5 months ago, they did a liver biopsy and he has severe cirrhosis from the iron build up. He too has a struggle with depression and anxiety. He has a lot of joint pain, especially in his hands and takes a daily prescription to ease it. He is incredibly tired on most days and sleeps for 10-14 hours at a time. He is a bit younger at age 38. His mother and brother got tested after we found out and they both have it as well but no liver damage. It only took about 3 months to get their levels back to normal.
  • terrihigashi
    terrihigashi michael1960

    Posted

    I have swollen knuckles too. Really bad arthritis on the knees. I am feeling less inflammation now that I am at 600. I have odd feeling in the stomach area at times. Not alwaysvthevsame place. I also overheat easily. Anyone do that?
  • mark_24924
    mark_24924 michael1960

    Posted

    Hi, 

    I'm 42 and dxd five years ago.  Depression has been a huge issue for me, though markedly reduced since phlebotomy treatments started.  It is more of a physical depression like chronic fatigue than emotional, though it can get emotional when the fatigue goes on long enough.  I also suffer serious joint pain and that has been getting worse with the years despite the treatment.  I am not looking forward to what it will be like as I get older. 

  • cstar172125
    cstar172125 michael1960

    Posted

    So sorry about your hands!  I have the same promblem and I'm 58 female and the rest of my joints have some pain I take an anengesic for the pain. I can't imagaion some of the ferritin levels I see here I'm at 15.  I too tried and take a nap for about an hour each day. I have been take a Adderall XR 10 mg which really helps with brain flog engery and depression.  You might ask your doc. Hope you feel better! Hugs <>
    • michael1960
      michael1960 cstar172125

      Posted

      Hi there. Thank you for those nice words. Joint pain can be awful at times,and apart from basic pain killers,there's not a lot that one can do really. 

      It also does seem to be that i may just be the only one here, but i get Aching legs as well,every day.  The kind of Ache that makes them feel just like jelly,and not able to hold me up,for fear of just collasping.

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