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  1. #11
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    Hi. Sorry to hijack but wondering what symptoms you all had for your haemachromatosis? I have sky high iron levels (like 3700 and should be 200) and finally got the doctor to write me up for another blood test today. I have incredibly sore knee and ankle joints and a really odd rash all over my body that isnt itchy? Just wondering if maybe this could be what is making me so ill? Thanks!

  2. #12
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    @coco123 I didn't really get tested because of symptoms, although it's suspected my irregular heartbeat is being caused by it.

    Arthritis is a symptom apparently. Those are very high iron levels, has your GP ordered a gene test for you? Your joint pain could be a symptom as far as I know.

  3. #13
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    Quote Originally Posted by coco123 View Post
    Hi. Sorry to hijack but wondering what symptoms you all had for your haemachromatosis? I have sky high iron levels (like 3700 and should be 200) and finally got the doctor to write me up for another blood test today. I have incredibly sore knee and ankle joints and a really odd rash all over my body that isnt itchy? Just wondering if maybe this could be what is making me so ill? Thanks!
    I had no symptoms at all, I used to donate blood even before I knew I had it and I hadn't for a while as I'd been overseas and had an exclusion period, then when I went to do it I was turned away as my levels were too high and they have a maximum allowable level unless you're a therapeutic 'donor'. So that is when it was investigated and discovered.

    I believe it takes a lot of accumulation to have an effect and outwardly show symptoms, as in middle aged or older people without management.

    Hope you get to the bottom of your issue!

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  5. #14
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    That's right, it usually does take a long time for symptoms to actually start showing, especially in women since we lose blood each month anyway.

    I'm 35 and for almost the entire 20 years I was on the pill I 'skipped' my period for about 6 months at a time, and I still didn't really have any noticeable symptoms. My Mum however (who was diagnosed after me) has liver problems, joint problems and gets the same sort of rash you described.
    @GM01 how high were your ferritin levels when you got diagnosed? Mine are only 330 which I don't think is hugely high? Nothing like poor coco123 with levels over 3000. I'm hoping I can bring mine down to an acceptable level fairly quickly..


 

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