Wilson's Disease

[sloulou]

Hi, i'm new in here but looking for support, Ive had the blood copper level test and ceruloplasm test both of which are low, which through research I know is likely to be Wilson's disease. I'm 20 years old and at university and I am really scared.

[Hidden]

Hi Sloulou,

Have you seen a liver specialist yet? It is very important that you have a proper medical review and not rely on research on the internet.

Here is the link to The Wilson's disease publication we have;

britishlivertrust.org.uk/wp...

but please do seek out a medical specialist review in the first instance and they can diagnose you, if it is appropriate.

If you would like to talk about this please call our helpline on 0800 652 7330

Best wishes,

Rebecca

[sloulou in reply to Hidden]

Hi, no my doctor is procrastinating. It was neurology who first asked for the tests so he is talking to them first, and obviously they will tell him i need referring to hepatology but a referral could take 16 weeks so I want him to do the next test the 24 hour urine copper test in the meantime so diagnosis is quicker when I get to see hepatology but he is refusing. My GP had to do a google search to find out what ceruloplasm was so he doesn't know much, i had to do research including looking at that publication. Im just concerned that in the 16 weeks a referral could take I could become very ill if my liver is in a bad way

[Hidden in reply to sloulou]

Hi Sloulou,

Your GP can refer you to a liver specialist who will be able to review you and make sure you get the tests that you need.

It is important that you let the GP know how concerned you are and ask for a fast referral. Alternatively, you are within your rights to get the GP to refer you privately to the liver specialist, if you don't have private medical insurance you will have to pay but it would ensure you are seen quicker.

Very best wishes,

Rebecca