Just got diagnosed

Posted , 4 users are following.

I'm 48 years old and just got my second hip replaced 2 weeks ago. My first hip was replaced 5 months ago. My first surgery was delayed a few month due to elevated liver enzymes. They couldnt find the cause but eventually cleared me for surgery. They did more tests prior to my next surgery which was 2 weeks ago. Yesterday I got a letter from the hospital saying I have hemochromatosis and need to contact my doctor for a liver biopsy as soon as I'm off the warfarin from my hip replacement. I haven't talked to any doctors about this yet since I just found out and have to wait until anything can be done.

I was just wondering what I should expect next.

1 like, 4 replies

4 Replies

  • Posted

    Hi Chris

    Welcome to our group, firstly your GP should do further blood tests

    Then depending on what your ferritin levels are,if very high they will

    Refer you to a hematologist, who will study your results, and if they are

    High he will recommend therapeutic phlebotomy, basically you will have

    Pints of blood withdrawn through venesection with a view to bringing

    Your levels down.

    But no good speculating see your GP first and get a proper diagnosis

    Let us know who you progress???

    Cheers philx

  • Posted

    If you have been genetically confirmed that you have haemochromatosis, ask for a referral to a haemotologist to start venesections.  You don't have to wait for a liver biopsy.  The sooner you start treatment, the better.

    No doubt the need for hip replacements was caused by the haemochromatosis - as was mine.  Mine was avascular necrosis - they explained my blood was so thick with iron that it could not get into the finer capilliaries to feed the bone, so the bone died and broke up.  I had had other severe haemochromatosis symptoms before that but they were ignored.

    Contact your country's haemochromatosis association for information, booklets, etc. and take one along to your dr.  You must self educate for your own good.

     

    • Posted

      Has anyone ever sued them for medical negligence when this happens? I suppose there are things they can hide behind to get away with it.
    • Posted

      It is a dream, isn't it?  On top of that, one of my hip replacements by same surgeon, was botched.  It leaves me in constant pain ever since.  A barrister told a lawyer friend of mine, that this particular surgeon was used to verify work injury against the patient, so they (the barristers) could not now claim he was incompetent.  Besides, in general, other medical practitioners will support another no matter what, and you have to get other medical practitioners to support your claim.

       

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