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Diagnosed 4 years ago

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chris46817
chris46817

i was diagnosed four years ago but iv had no other test since 🙄 would anyone recommend me having some now? the last 6 months or so when waking up in a morning im having pretty bad flank pain on both sides (is this connected) iv not really had any advice or anything in the last four years so im pretty puzzled with it all

thanks

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2 Replies

  • sheryl37154
    sheryl37154 chris46817

    Posted

    You don't say what your HFE genes are, and what your Iron Studies levels were. You should go back to your dr and get some advice and he will recommend or refer you to whomever looks after vx in your country, depending on your levels. He will no doubt run another test, which if you do have genetically diagnosed haemochromatosis, you should have been having every 3, 6 or 12 months depending on your HFE and blood levels.

    I am surprised that you have not educated yourself on this disorder if you have been diagnosed with it so that you know more than the drs know (which is not much) so you have to be proactive and know what should be happening.

    With regard to your flank pain, I had that when I was left undiagnosed for 9 years and it resulted in avascular necrosis and required both hips to be replaced. Prior to my diagnosis, google did not exist, but you have a world of information available to you now. Contact your country's haemochromatosis organisation, and only read medical research to get the right information.

    Let us know how you go.

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