Quick Summary

Gilbert’s syndrome:

• Gilbert’s syndrome is a liver condition that can run in families.
• It is caused by a build-up of bilirubin in the blood.
• It is a long-term condition that is usually diagnosed in teenagers and young adults.
• Many people have no symptoms.
• The most common symptom is jaundice (a yellow colour to the eyes or skin) that comes and goes by itself.
• Gilbert’s syndrome is usually considered harmless, it does not cause cirrhosis or serious liver damage.
• Most people will not need any treatment.
• It can affect how some medicines work.
• It might increase the risk of getting gallstones.
• If someone with Gilbert’s syndrome has more serious symptoms, it is important to have more tests. It is possible to have another condition at the same time as Gilbert’s syndrome.

What causes Gilbert’s syndrome?

Gilbert’s syndrome is caused by a higher than normal amount of bilirubin in the blood.

What is bilirubin?

Bilirubin is a yellow chemical. It is made when the liver breaks down old red blood cells. Normally the bilirubin is then removed from the body in poo.  Some special proteins called enzymes help this process along.

What happens in Gilbert’s syndrome?

If someone has Gilbert’s syndrome, there is a difference in one or more of these enzymes. This means that the process for removing bilirubin does not work normally. Less bilirubin comes out in poo, and more stays in the blood.

Genes and Gilbert’s syndrome

Genes are instructions for making proteins. We inherit our genes from our parents and pass them on to our children.

But sometimes there can be a small mistake when a gene is copied. This is called a “mutation”. A gene with a mutation is also called a “variant gene”. We all have lots of variant genes. Most of them are harmless.

Several different variants are known to cause Gilbert’s Syndrome. In the UK the most common variants are in a gene called UGT1A1. These variants mean you make less of an enzyme also called UGT1A1.

The variant genes that cause Gilbert’s syndrome can be passed on from parent to child. This is why Gilbert’s syndrome often runs in families.

But the variant genes on their own do not always cause symptoms. Many people who inherit the variant gene will not have any symptoms of Gilbert’s syndrome. So even if someone has the condition, other members of the family might not

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