Gilbert's syndrome explained: a harmless cause of jaundice

What Gilbert's syndrome is

When old red blood cells are broken down, they release a yellow pigment called bilirubin, which the liver normally processes so it can be removed from the body. In Gilbert's syndrome, the liver has slightly less of the enzyme that carries out one step of this process, so bilirubin is handled a little more slowly and its level in the blood can rise mildly from time to time. It is an inherited condition, passed on through genes, and it is very common — affecting a noticeable proportion of the population. Crucially, the liver itself is completely healthy and works normally in every other way; the only difference is this small, harmless quirk in one processing step. That is why Gilbert's syndrome is regarded as a normal variation rather than a disease, and why it does not shorten life or damage the liver.

The symptoms it causes

Most people with Gilbert's syndrome have no symptoms at all and never know they have it. The main sign, when it appears, is mild jaundice — a faint yellow tinge to the whites of the eyes, and occasionally the skin — which comes and goes. This tends to show up at times when the bilirubin level rises a little more than usual, such as during an illness with fever, after fasting or skipping meals, when dehydrated, after strenuous exercise, during stress or tiredness, or around periods. Some people report feeling vaguely tired, off-colour or having mild tummy discomfort during these episodes, though it is not clear how much of this is due to Gilbert's itself rather than the illness or fasting that triggered it. The yellow tinge always settles on its own and is not a sign of anything going wrong.

How it is diagnosed

Gilbert's syndrome is often discovered by chance when a blood test done for another reason shows a mildly raised bilirubin level while all the other liver tests are completely normal. This pattern — a slightly high bilirubin with otherwise normal liver function and a healthy person — is very typical. Doctors will usually confirm that the rest of the liver blood tests, blood count and general health are normal, and that there is no sign of the liver being inflamed or the red blood cells breaking down too fast, which are other causes of a raised bilirubin. Sometimes the level is seen to rise further during fasting or illness and settle again afterwards, which fits the diagnosis. In most cases no special tests are needed; genetic testing is available but rarely necessary, as the clinical picture is usually enough to be confident.

Why no treatment is needed

Gilbert's syndrome needs no treatment because it causes no harm — the liver is healthy, life expectancy is normal, and the mild jaundice, though sometimes noticeable, is not damaging. The most important part of care is reassurance: understanding that the condition is benign spares people unnecessary worry and further tests. It can help to know what tends to trigger episodes, such as fasting, dehydration, illness and stress, so that eating regularly, keeping well hydrated and resting during illness may make the yellow tinge less likely to appear, though this is for comfort rather than because it is medically necessary. There is no diet or medicine that needs to be taken for the condition itself. Occasionally the way the body handles certain medicines can be slightly altered, so it is worth mentioning that you have Gilbert's syndrome to doctors and pharmacists.

Living with Gilbert's syndrome

For almost everyone, living with Gilbert's syndrome means simply carrying on as normal. It is helpful to recognise your own pattern — noticing that a faint yellowing of the eyes tends to appear when you are unwell, run down or have not eaten — so that it does not cause alarm each time. Eating regular meals, staying hydrated and getting enough rest can reduce how often episodes happen. It is sensible to tell healthcare professionals that you have the condition, as it explains a mildly raised bilirubin and can occasionally be relevant to certain medicines. Importantly, Gilbert's syndrome does not explain all yellowing or all liver test changes, so if jaundice becomes marked, is accompanied by dark urine, pale stools, itching, tummy pain or feeling unwell, that should be checked, as it may point to a separate problem needing its own attention.