Itching and Gilbert’s Syndrome

Many people who have Gilbert’s Syndrome experience itching, which doesn’t seem to be related to any obvious cause and has no visible rash.  I myself have been through the obvious checklist many times: washing powder; cosmetics; food; perfume, but nothing had ever changed as, knowing I itch at the drop of a hat, I’m very careful regarding anything I could be allergic to.

BUT…what if it isn’t any kind of allergy?

The idea never occurred to me  until Adina let me know that it was a query that had come up several times with Gilbert’s Syndrome sufferers.  I have had a look at the information available to the general public and here are some of the interesting facts I found on the subject:-

www.nhsdirect.nhs.uk states that “general itching may be a symptom of many conditions, including…some condition affecting your liver…”  The conditions mentioned include more serious liver conditions than GS in terms of prognosis but this doesn’t rule it out as is it not stated that itching is not a GS syptom.

www.netdoctor.co.uk says of primary biliary cirrhosis that the symptoms are identical to any other chronic liver problem – itching, aches and low energy.  Chronic means long term, Gilbert’s Syndrome is a chronic liver problem, so again, this is indicative that the itching we experience is a symptom of our GS.

I also found some information on the British Liver Trust website (www.britishlivertrust.org.uk) that may explain WHY itching occurs in GS, through an explanation of a different liver condition:-

Itching is stated as a symptom of cholestasis, which is a reduction in the flow of bile from the liver.  This causes bile salts to build up in the blood, be deposited in the skin and cause itching.  Bilirubin increases are suggestive of problems with the bile duct.  Gilbert’s Syndrome is diagnosed due to a long term increase in bilirubin, also classified as ‘bile level’ in blood tests of liver function.

In Gilbert’s Syndrome bilirubin is raised due to lack of an enzyme rather than a blockage of the bile duct.  It was not clear to me from the information I had found so far if an increase in bilirubin goes hand in hand with an increase in bile salts or whether the two are mutually exclusive.  So I read further…

I found quite a lot of work which links bilirubin and bile salts, for example www.revision-notes.co.uk/revision/859.html , in describing the process of bile secretion, states of bile “It is an alkaline, mucous fluid containing bile pigments, biliverdine and bilirubin.  Bile also contains bile salts…”

However, I have not been able to find anything that specifically states that bile salt levels are raised in Gilbert’s Syndrome or whether bilirubin can be increased without bile salts being raised.  It is always stated that of all liver function tests only bilirubin is raised in GS which suggests levels of bile salts are normal, although I do not know if this is tested separately.  If this is the case it is possible that bile salts may fluctuate, even if within normal limits at testing, causing itching on occasion but not constantly.  This is pure speculation but I hope gives us something to think about and ask our GPs next time we have a consultation.

By contributor Nicola Southworth

4 thoughts on “Itching and Gilbert’s Syndrome

  1. Frank

    I was diagnosed with GB very recently, but prior to that I visited many dermatologists due to my face itching like crazy. They eventually just suspected it had to be psoriasis because the itching only went away with steroid creams. However there was virtually no rash! It wasn’t fungal as the lab tests revealed. My dermatologist recommended more in depth tests to be made because it seemed to be a symptom of an underlying condition. I didn’t visit any doctors for months until I became very ill and nauseous and my eyes turned yellow. This is when my GP finally put the pieces together: according to blood tests done over the years I had a suspiciously high bilirubin level while everything else was normal. What I’m trying to say here is that as someone diagnosed with GB I too suffer from chronic itching and it becomes worse if I don’t eat or sleep well. These things are definitely related.

    Reply
  2. Deidre Chambers

    I enjoyed this article today. I was diagnosed with GS about 10 years ago it took a hormonal Dr. Graeme Williams to pick it up. I have had extra itchy skin this winter and I guess it could be because of the GS and I am 51 years of ago and I guess hormones will start to be changing and as you explain menopause can increase the levels. I also find that I can have very little alcohol also, ill feeling and hangover after a small scotch and one or two very small glasses of wine.
    Thank you,
    Dee.

    Reply
  3. Andy Murphy

    Hi
    I have just found this brilliant site today

    I was diagnosed with GS many years ago. To be honest my main awareness of it is the yellowness in my eyes which is worse when I am tired and ill. I have never been told much about it and it only ever gets mentioned if I have to discuss my medical history.

    Today I went to the doctors and reported that I had been having very itchy skin for over a month but I couldnt work out what it was,

    I have also been having regular blood tests recently and he reported that on my last two tests the bilirubin level had been 53 and now 82 which is apparently very high. He said this explains my itchiness. Now my issue is to find out whether this is down to GS or something else.

    I have had intermittent itchiness in the past but never thought much about it but this time it has been incessant for 6 weeks.

    Reading through this website I can also say that over the past year or so I have often felt quite tired even though in the past I have had quite high levels of energy and have been able to work late into the night. I would struggle nowadays.

    I have also noticed that I dont cope with alcohol very well. I dont drink much but if I do have more than normal I can feel quite ill and hungover. I hadnt related that to GS before

    Reply
    1. Sophie

      Hi Andy,

      I appreciate that this post is from a long time ago but I was wondering whether you ever got confirmation of the itching being Gilbert’s syndrome related or something else?

      Thank you.

      Reply

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