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Recently diagnosed with 2 H63D genes with raised TSH

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elizabeth_91630
elizabeth_91630

Hi,

I have been recently diagnosed with GH with 2 copies of H63D, I have a of ferritin of 450 but after a Ferriscan showing slight loading my consultant wants to retest in Feb next year & if my level is over 500 will do another scan then decide on venesection, I have also had an under active thyroid for around 10 years but with medication this has been stable until recently, my TSH has jumped to over 20 & wondered could this be related to the GH? 

Interested to hear if anyone else has experienced this ?

Thanks, 

0 likes, 3 replies

3 Replies

  • ellen12819
    ellen12819 elizabeth_91630

    Posted

    Hi Elizabeth91630

    Thyroid seems to go along with this condition, not for all but many. I was diagnosed almost a year ago and now my thyroid is slowing am waiting for a second test to confirm. There are many symptoms some get all, some get one that's what makes it tough to diagnose. Of course you could have been one of the many to get the problem anyway nobady can tell that. Ferritin can raise due to inflamation eleswhere so is not a reliable reading on its own. Go to the https://Haemochromatosis.org.uk/ site it has leaflets you can look at of all the latest on GH. You will be advised to join for a tiny yearly fee you get a huge amount of the latest on the condition and the pack they send when you join is stuffed full it is like our bible. Unfortunately not enough doctors know much about it. So we have to be on top of it. Good luck and try not to worry you are lucky to be diagnosed... thats the hard part.

  • ruth51315
    ruth51315 elizabeth_91630

    Posted

    Hi Elizabeth,

    I too am homozygous H63D, being diagnosed 2 years ago.  My ferritin hasn't gone above 300 but my saturation % is usually above the normal range.  My GP couldn't be less interested, nor knowledgeable and I have gleaned much useful information from reading about the condition on-line.

    I was diagnosed with under active thyroid (Hashimoto's) 19 years ago.  My TSH has never risen anywhere near 20 though.

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