Gentic Haemochromatosis diagnosis - British Liver Trust

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Gentic Haemochromatosis diagnosis

Karen4422 profile image
Karen4422
ā€¢4 Replies

Hi šŸ‘‹

I wrote about 3 months back about having a gentic test done for Haemochromatosis. And it came back positive. And I was being referred to hospital. Well just to let everyone know I am still waiting for an appointment šŸ™ƒšŸ™„. So I am no further along with any treatment.

So fed up of waiting now. I have rang the clinic only to be told there is still no appointments available. Just hope it's not much longer .

Karen xx

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Karen4422 profile image
Karen4422
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4 Replies
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Hi Karen,

It is incredibly hard waiting for a much needed appointment. Could you maybe discuss with your GP to see if they can expedite it?

Keep us posted.

Downunda profile image
Downunda in reply to

Hi Karen.

This is really important to understand your ferritin levels.

I was misdiagnosed 3 times by ā€œspecialistā€. Once I was diagnosed with the same, not one of them told me you are never to drink again, until I got diagnosed with cirrhosis. It was my Hepatologist who couldnā€™t believe my other ā€œspecialistā€ doctors did not tell me.

Do you know your ferritin levels and LFT?

All the best. Dan

Karen4422 profile image
Karen4422 in reply to Downunda

Hi DownundaI can't remember what my LFT levels were but my ferritin levels were 850 that was back in January.

Downunda profile image
Downunda

Hi Karen. 850 is high. The level needs to be ideally below 50.

Keeps us posted and all the best.

Cheers. Dan

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