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[HomerJSimpson]

Hi, I've recently been diagnosed with Gilbert's syndrome/disease. It was picked up via blood tests. I'm waiting to have a liver scan but the GP hasn't come up with any other plan. My main question at the minute is does anyone suffer with itching. Its not put down as one of the main symptoms but it's driving me crazy. Does anyone have any ideas?

Thank you for any assistance

[AyrshireK]

If your bilirubin is currently very high that may account for the itching. They all it pruritis in liver disease and your doctor may be able to prescribe antihistamines to help alleviate it, menthol creams can sometimes help.

Have they ruled out any other issues of the biliary system? Gall stones, PBC (primary biliary cholangitis).

Katie

[HomerJSimpson in reply to AyrshireK]

I got prescribed Loratadine but to be honest, it doesn't seem to do much. I currently wake around 2-3am and then scratch for a couple of hours.The diagnosis is in its early days so they've not looked at anything else yet. I suppose we'll have to see what the scan brings

[MINTVCX]

I think itching does not fit to Gilbert's syndrome. Never heard and personally does not have this symptom (with around 3.5 mg/dl bilirubin level).

"Extremely high levels of bilirubin can cause itching, but this does not occur in Gilbert's syndrome, because the levels of bilirubin are not that high. Factors that may result in a mild rise in bilirubin levels and make symptoms more obvious include: illness. infection."

[Givemecoffee]

Hi. I was told I have Gilbert's about 12 years ago, based on consistently raised bilirubin. I have never been offered any other investigations because of it, and was told it's a benign condition. I personally don't have any itching. I do have disturbed sleep and am being investigated for liver disease, but that is due to new issues arising and not the Gilbert's.

[MINTVCX in reply to Givemecoffee]

May I ask was your Gilbert's confirmed by genetic test? As it was 12 years ago I think it was based on normal LFT and bilirubin level (even today it is diagnosed like that after ruling out more serious liver disease). Anyway good luck, you wrote you had low platelets level somewhere in this forum during couple of years. Strange it was not checked before by your doctors because it could have been the obvious first sign of your liver issue.

[Givemecoffee in reply to MINTVCX]

Thank you - yes, by platelets have been low (but not low enough to warrant investigation apparently) for as long as I've known about my bilirubin being high. Was told that it was "normal for me" and not of concern. Gilbert's wasn't confirmed by genetic test either.

[BritishLiverTrust8 Moderator British Liver Trust]

Dear HomerJSimpson

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Here are the links to information about Gilbert's Syndrome on our website, which you may find useful britishlivertrust.org.uk/in...

Best wishes

British Liver Trust