haemochromatosis and raynauds

This is a message for Sandra who responded to my question about Haemochromatosis I have had to become quite knowledgeable about Haemo as lots of the medical professionals are not so hope you dont mind but I would recommend you ask to see a specialist if your ferratin levels are 200 as the norm is 50 or below. I have 4 children and was sometimes told my iron results were odd then when I was 56 became quite ill and it was found my ferratin levels were in the 1000s . As it is still quite an unknown condition it is often missed but a raised ferratin really should be checked. Hope that does not sound bossy but if it is treated early you hopefully will miss out on the ill health that can go with Haemochromatosis

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  • Thanks I appreciate your concern. My consultant sends me for full blood tests etc every 3/4 months (and this has been the case for the last 10 years) and during these tests they monitor the Ferratin levels, they have noted them on my file as they say they are high but if they get higher they will deal with it. Until I saw your post I had no idea of what the implication of the high Ferratin levels was, so thanks I now know the name and I will check this out with my consultant.

    Have you been able to find a link between the haemochromatosis and raynauds?

    Thanks :)

  • Have found no connection so far but as haemochromatosis affects joints and other major organs I suspect there is some connection. Hope your consultant does not just keep writing it in your notes and actually gets you the proper treatment.

    With best wishes

  • Had raynauds since I can remember. 41 now and been the bane of my life every winter. But interestingly I have recently been diagnosed with haemochromatosis. Had ferritin levels of over 2000. In check now tho with regular venesections.

  • Hi Spot always had cold fingers and toes NOBODY ever sugested Raynauds unti this year I am 59 also always unwell made to feel as if it was in my mind then new GP did a ferratin and hey ho I have haemochromatosis. Incidentally that was only 3 Christmasses ago. At least now I know I am not a basket case and the joint pain exhaustion nausea all had a reason.

    Hope you have a good Christmas thanks for getting in touch and if you find out if there is a connection let me know.

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