Gilberts Syndrome

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Key points

Gilbert’s syndrome is a harmless and mild disorder you inherit from your parents
The liver lacks an enzyme and does not process a substance called bilirubin
Bilirubin builds up in the blood and can make you sometimes go slightly yellow
It doesn’t need to be treated
People with Gilbert’s syndrome have a normal life expectancy

What is Gilbert’s syndrome?

Bilirubin is a yellowish substance made from breaking down a chemical (haemoglobin) in red blood cells. The liver removes bilirubin from the blood. An enzyme changes the bilirubin to allow it to be removed from the body in bile.

This process doesn’t work properly if you’re born with Gilbert’s (pronounced zhil-bairs) syndrome. This is because the enzyme that changes bilirubin doesn’t work normally. Bilirubin builds up in the blood. This can give you yellow skin and eyes (jaundice).

The bilirubin levels might go up and down. They are more likely to be high when you’re:

sick, such as with a cold
on a strict diet or fasting
dehydrated
doing strenuous exercise
stressed
having your period (women)

People with Gilbert’s syndrome might not be able to process some medicines properly, including paracetamol or a cancer medicine called irinotecan. So it’s important to tell your doctor if you have Gilbert’s syndrome.

Gilbert’s syndrome affects up to 1 in 20 people in Australia. It’s more common in men than women.

What are the symptoms of Gilbert’s syndrome?

Many people don’t know they have Gilbert’s syndrome until a blood test shows high levels of bilirubin. Some people might notice they have slightly yellow skin or eyes.

If you also have belly pain, itching, dark urine or pale poos, it’s probably another liver condition and not Gilbert’s syndrome that is causing the jaundice.

How is Gilbert’s syndrome diagnosed?

You or your child may be checked for Gilbert’s syndrome if there is jaundice. Jaundice can be caused by many other things too and it’s important to rule out a more serious liver disease.

Gilbert’s syndrome is diagnosed with a blood test to look for high levels of a particular type of bilirubin called unconjugated bilirubin. If it’s Gilbert’s syndrome, liver function tests will be normal apart from the high level of unconjugated bilirubin.

Why did I get Gilbert’s syndrome?

Gilbert’s syndrome is caused by changes in a gene you inherit from your parents. You usually need 2 copies of the changed gene to get Gilbert’s syndrome, 1 from each parent.

The gene controls the enzyme that breaks down bilirubin in the liver. If the gene isn’t working properly, there’s not enough enzyme and so your liver can’t process bilirubin.

People are born with Gilbert’s syndrome, but symptoms don’t normally happen until puberty or later.

How is Gilbert’s syndrome treated?

No treatment is needed for Gilbert’s syndrome. You may have jaundice now and then, but it will normally clear up by itself.

If the jaundice is worse than normal, it’s worth checking in with your doctor. They may want to make sure there are no other liver conditions causing the jaundice.

Living with Gilbert’s syndrome

The best thing you can do to manage Gilbert’s syndrome is avoid situations that affect your bilirubin levels. For example:

avoid stress, such as with exercise or meditation
eat a healthy diet
always tell your doctor you have Gilbert’s syndrome before you start on a new medication.

What next?

References

Royal Children’s Hospital Melbourne. Gilbert’s syndrome

Mayo Clinic. Gilbert syndrome

NORD. Rare disease database. Gilbert syndrome

American Liver Foundation. Gilbert syndrome

Reviewed November 2022