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haemochromatosis

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chorleyboy
chorleyboy

Haemochromatosis has caused me to be diabetic, the iron stored in the liver and I had to have a liver ablation to destroy a tumour.   Along with arthritis, memory loss and other side effects, I have barretts osophecos with a small hiates hernia on my windpipe.    Today, the doctor has said the tingling and numbness and burning sensation in my fingers and hand, is carpal tunnel syndrome with the suggestion I have a procedure on the palm of my hand to aleviate the pain.    Apparently the carpal tunnel syndrome is another side effec t of haemochromatosis and I'd like to know if anyone has any other side effects that perhaps I do not know about.    My ferritin level is still high, sitting at 3900 and I have fortnightly phebotomy treatment.     Any advice on carpal tunn would be appreciated, Glyn

1 like, 8 replies

8 Replies

  • Mrs._Z
    Mrs._Z chorleyboy

    Posted

    I had carpal tunnel surgery long before I was diagnosed with hemochromatosis.  The procedure was pretty simple having one hand at a time.  Before going for the surgery, I tried everything to stop the tingling and numbness by wearing hand braces at night and sometimes during the day.  I cannot say if this was attributed to the hemochromatosis.If you haven't tried wearing the braces, this may be an alternative.  Since I'm in the US, does fortnightly mean every two weeks?  If that's the case, is it possible to have your phlebotomy treatment once or twice weekly to get it down to a more realistic number?  I was under a 1000 and my Doc wanted to do it twice weekly, but agreed to try once weekly.  
  • marie86421
    marie86421 chorleyboy

    Posted

    Hi Chorleyboy

    My ferritin was 5000 when diagnosed with HH.  By that time I had had 2 carpel tunnel releases, once on left and right hand, and 2 frozen shoulders which were very dibilitating indeed.  I saw a rheumatologist for an unrelated issue and he told me that the carpel tunnel and frozen shoulder was due to HH.

    Nothing to worry about with the carpel tunnel release.  You will have a local anaesthetic in the wrist, a small incision will be made, all you will feel is a slight pressure and then it is done.  I was asked if I wanted to see the nerve and tendons and was fascinated to see the inside of my hand.    The relief you will get from the procedure is instant, although you will be sore for a while until it heals.

    Good luck with the procedure.

    Marie

    • chorleyboy
      chorleyboy marie86421

      Posted

      Hello Marie, thank you for your post.   I am relieved by your comments and agree with you that carpel tunnel has come about by the haemochromatois but didn't actually know about the frozen shoulder.    It would appear that HH causes so many side effects and i wonder what's next.     Tomorrow I give a blood donation and I am hopnng the ferritin level has decreased.   I am waiting or a CT scan on my liver, as iron overload stored itself in my liver and caused a small tumour, which I had a liver ablation procedure six months ago and I am hoping it has gone for good.   Thank you for your comments and advice, Glyn
    • chorleyboy
      chorleyboy marie86421

      Posted

      Hi, looks like I will have to go for treatment for carpel tunnel.  It's getting worse and the doctor did say it may be best to go for treatment sooner rather than later.    My ferritin level is still high, above 4000, and it fluctuates, up and down all the time.   No explanation why this is happening and they are now suggesting I may have to give blood weekly, currently fortnightly, and I am just wondering what affect that will have.   Will I feel more tired than I do at the moment, or what other symptoms I may expect.      Has anyone had trouble with weekly blood donations?     Glyn
    • marie86421
      marie86421 chorleyboy

      Posted

      Hi Chorleyboy

      Good Luck with the carpel tunnel release. 

      I could not be bled weekly as I have Ferroportin disease (type 4 HH) which does not respond well to phlebotomy.  I had 350ml taken every two weeks for nearly three years until I reached maintenance.  There were times when the ferritin would not budge and I wondered if I was ever going to get de-ironed.  Half way through that time period I became anaemic (oddly enough), proof that my type of HH does not respond well to being bled more frequently.  I went to every three weeks until my hb had recovered and then went back to every two weeks.

      I feel tired for two days after venesection and don't do much that requires any effort or stamina.  If I do too much I get dizzy and light headed. 

      Your ferritin will come down, it just takes time.

      Marie

  • barry37533
    barry37533 chorleyboy

    Posted

    I was going to off my advice but it is very similar to Mrs.Z ecept my levels were much higher. Mine was discovered when they found cancer in my prostate and a host of other things. I had RH and Arnnel Tunnel which effects the other three fingers and the operation is done in the elbow.. It didn't cure it, but left a nice 4" scar. I did not have it done on the other arm. I was a mechanic and because of all of the above had to take early retirement. 15 years later it is all much worse, my whole entire back is useless. Can't even stand over the kitchen sink very long. I also have another incureable disease that leaves spurs and growths on all the joints head to toe. I'ts a life of pain pills, patches, gels and braces. The good thing my friend is your not alone. It's nice to know there are other people out there to share these miserable stories with that are going through the same thing and somethimes worse. Hang in there body and vote for medical M.
    • chorleyboy
      chorleyboy barry37533

      Posted

      Good Morning Barry, thank you for your message.   Yesterday I had my ferritin result and it was up again to almost 4600 from 3900   Disappointing because I am very careful with my diet and the medical professionals keep harping on about diet.    If my hand gets worse I shall have to go for the carpel tunnel procedure to reflieve the symptoms...  Dont know anything about amnel tunnel, just hope it is not next on my list of ailments stemming from Haemochromatosis.   Still waiting for an CT scan appointment to check that the tumour on the liver has been successfully destroyed.and to check the rest of my liver.     My liver has been badly affected by iron overload and I cant see that stopping, just like that, given that my iron levels are so erratic so I will just have to keep going like everyone else.    There is a local monthly meeting of Haemochromatosis sufferers but to be honest the medical professionals do not have the answers to most of the questions asked and at the last meeting I felt it was just a waste of time.     I will keep going and thanks again for your comments, Glyn
  • haircrazydaisy
    haircrazydaisy chorleyboy

    Posted

    So sorry to hear of all of your problems :-(  I know several people who've had carpal tunnel ops and have been surprised by how straightforward and successful the surgery was. 

    Good luck :-)

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