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:- 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. 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 ( 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 , 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

17 Replies to “Itching and Gilbert’s Syndrome”

  1. I also like to add, has anyone here experience bile in your stool or yellowish stool? That is another symptom that came a month before my new onset of itching. I believe its related to GS. Salts from gallbladder or maybe someone here knows if these occurrences are related.

  2. I too have had GS for over 10yrs. My PCp mentioned it b/c of high ALT/ALK readings, no other issues with CBC Panels readings. Just last week I began to feel spontaneous itching in random places from scalp to feet. Also dull middle back pain. After finding this page I am a believer that GS may have cause it. I was worried it be pancreas or kidneys damage as they also state itching as a symptom, even certain cancers. But I rather think its fatty liver since Ive discovered it over 10yrs ago. I dont drink or smoke.

  3. I was diagnosed with GS some years ago after suffering from intense itchy skin for a few months. Now each winter I have long bouts of itching skin, this can only be GS but there is very little information that is the cause and no information on what can be done to alleviate the effects. The lack of analysis into the condition is really poor.

  4. I have bouts of itching ranging from head to legs (not severe) I also have GS and have been diagnosed now for approx 15 years. I have often wondered if the two are interconnected. My diet is stable, washing detergents haven’t changed brands as i’m quite particular about that. It is very interesting reading other peoples comments on here.

  5. My doctor confirmed today I have GS.
    My main issue right now is itching majorly in arms and legs and face specially at night time.

    Any specific medicine is available to get rid of this.

    My last recent blood report is normal
    Like 1.6 is unconju ated billi recst are fine .

    1. Hi Deepak, your skin is your second largest detox organ after your liver. I find I itch when I’m tired and if I’ve not been looking after my diet. There’s no medication for this. The best thing you can do if the itching is bothering you incudes: ensuring your detergents and other cleaning products are natural and organic so you are not irritating your skin from the outside as well as putting pressure on your liver to detox chemicals; drinking lots of water; eating mainly whole plant foods rather than highly processed foods with preservatives and other chemicals in them. There are skin moisturisers which can help directly with itching and sooth the skin such as Aveeno which I find soothes my skin, available here: . You can also check out some of the supplements such as milk thistle and dandelion on the Resources page I hope you find something which helps.

  6. After many months of itching, and mutiple blood tests, I was told by my doctor that I probably had Gilberts Syndrome. My “Serum Total Bilirubin Level” has been slightly raised at around 24 umol/L, so not excessively high, but high enough to suggest a problem. I was told to take an antihistamine every day, which I have done ever since, and the itching only ever returns if I forget to take one for more than 2 days in a row. The antihistamines I take contain Loratadine and are non-drowsy.

  7. 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.

  8. 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,

  9. Hi Andy,

    I’ve just been diagnosed also with exactly the same symtoms ! It’s a relief to know I’m not going insane and about to be carted away by the men in white coats !! I’ve been advised to take vitamin b12 and iron tablets and to just get on with it ! Which as flippant as it sounds is good news to me , I can deal with all the symtoms and get on with life. Hope your coping too, best wishes.

  10. i have gilberts syndrome i haver always suffered terrible tiredness that just hits me and i instantly i have depression and my concentration levels are affected ie it takes me longer to take things in i got sacked many years ago for falling asleep at my work desk i had not been diagnosed then as i was only 17 . when i look back i have always had many syntoms of gilberts but 10 years ago when they give me blood tests they said oo its nothing serious noting to worry about , i am sorry i beg to differ i suffer everyday !!!! i feel its not taken seriously at all anybody else feel this .

  11. 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

    1. Any updates here?
      I’m GS diagnosed – when I was in my twenties. As it’s typical for a blood work up during a woman’s annual wellness check.
      I’ve not had any issues until now in my mid-50’s. The itching is non-stop and in my upper torso (scalp, face, eyebrows, eyes, hands, chest, breasts, arms) nothing from my waist down which is odd.

    2. 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.

  12. Thank you for your wonderfully informative website. My GP is still advocating that GS has no symptoms other than a raised bilirubin which can lead to jaundice, despite me presenting with upper right abdominal pain, nausea, tiredness and itchy skin. My skin gets tiny red spots which are very itchy. They are mainly on my abdomen. My 80 year old mother has primary biliary chirrosis and has terribly itchy skin resulting in much larger patches of inflamed skin from her scratching. Hers are on her abdomen, back, arms and thighs. I too have read that it could be due to our skin struggling to detoxify as a result of poor liver function.
    Hopefully one day we will find the answer and solution to the itchy problem.
    Thanks again.

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