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New Haemochromatosis diagnosis, Advice please

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lornacs
lornacs

Hiya,

I've just had my genetic test results and I have one of the genes.

I'm not sure what this means long term, I've to go next week for an iron panel.

My ferratin levels are mid 200s.

Hopefully this explains my stiffness!

Any advice would be appreciated.

Thanks

0 likes, 4 replies

4 Replies

  • sheryl37154
    sheryl37154 lornacs

    Posted

    Regarding stiffness - not really. If you only have one gene (which one?), you don't have haemochromatosis. 200 is not high at all, unless you are still menstruating, then it is a little over the reference range. Increased ferritin can be caused by a number of health issues to do with inflammation (stiffness = arthritis) and infection. It is best to read up on it via medical research and haemochromatosis organisations before you see your dr so that you have questions prepared.

    • lornacs
      lornacs sheryl37154

      Posted

      Hiya, so far, I've just been told my results by the doctors secretary, since I was told that I have it I presumed I have 2 copies of the one gene although I never thought to ask which one.

      I am still menstruating and my ferratin levels are constantly rising starting at 190 a few months ago and now 249.

      I'll certainly do some more research so I can ask the right questions, I really didn't think I would be told I was positive as I'm regularly anaemic!

      Thanks again for your reply

    • sheryl37154
      sheryl37154 lornacs

      Posted

      You can be anaemic and have haemochromatosis. Menstruation can do that in the early stages. Haemoglobin is different to ferritin. And long term anaemia causes the same symptoms as haemochromatosis.

      Unfortunately, even if your haemochromatosis is causing stiffness, generally venesections do not heal arthritis. It has to be treated same as not having haemochromatosis. Physiotherapists say movement - keep on moving to 'oil' up the joints. This would apply to 'stiffness' too. Omega 3 is said to help there. My husband's dr also suggested glucosamine 1500 with chondroitin. A friend swears swimming most days helps her.

      Good luck with your appointment.

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