Living with Gilbert’s syndrome

Jaundice triggers

Some people find that physical or emotional stress can increase the chance of them getting jaundice. For example:

• Going on a very low calorie diet
• Fasting, for example during Ramadan
• Not drinking enough water (dehydration)
• Pregnancy
• Having a period (menstruation)
• Having surgery
• Infectious diseases like flu
• Not getting enough sleep
• Heavy exercise or other physical exertion

Jaundice caused by Gilbert’s syndrome is short lived and should go away by itself in a few days. It might be possible to work out what triggers your jaundice and avoid it.

If the jaundice is worse than usual, or does not go away after a few days, this could be a sign of a different problem. If this happens talk to your GP or call NHS 111.

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Medicines

There are no medicines that have been proved to help with Gilbert’s syndrome. But the condition can sometimes change the way some medicines work.

Always tell the doctor about  Gilbert’s syndrome if they prescribe a new medicine for any reason. If the medicine is known to interact with Gilbert’s syndrome it might still be possible to take it. But more monitoring would be needed to look for side effects.

Check with the pharmacist if you buy over the counter medicines.

It is important to be careful with herbal, alternative, or natural medicines. There is evidence that some, including milk thistle (silymarin), can affect the enzymes involved in Gilbert’s syndrome and increase bilirubin in the blood

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Gallstones

Gallstones are a common condition. They are treatable but can be very painful and unfortunately there is often a long waiting list for treatment.

There is some evidence that people with Gilbert’s syndrome may have a higher risk of developing gallstones. So it is a good idea to be aware of the symptoms so you can seek help early.

Find out more about Gallstones

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Is Gilbert’s syndrome always a harmless condition?

The medical guidelines for Gilbert’s all state that it is a harmless condition. Most people with the condition will have no symptoms, or they will be very mild. This is backed up by scientific research.

However, this is not the experience of some people who have been diagnosed with Gilbert’s syndrome. We have heard from people who have experienced a wide range of symptoms. Sometimes these can be severe and make life very difficult.

No one with severe symptoms you should not be expected to just put up with them because they have been diagnosed with Gilbert’s syndrome.

Doctors, including GPs, follow NICE guidelines. These set out the clinical information about a condition and how it should be treated. For Gilbert’s syndrome the NICE guidelines say that the only symptom is mild jaundice that comes and goes. They also state that if someone has any other symptoms, they should be tested for other possible conditions. And if the doctor is not certain about the diagnosis they should make a referral to a specialist.

It is very important to make sure that there are no other conditions that are causing the symptoms or making them worse.  It is possible to have other medical problems, including other liver conditions, at the same time as Gilbert’s syndrome. More  tests should be done to make sure that other serious medical conditions can be ruled out.

If a doctor is not willing to look into the problem, ask to speak to someone else. It may help to show them this information page.

You can find out more about what to do if you are not happy with your care here. 

You can read the NICE guidelines here.

People with Gilbert’s syndrome should also have help to treat or manage symptoms. This could mean medicines. Or a referal to a specialist service such as an occupational therapist or dietician.

Ask the doctor:

• How sure are you that these symptoms are caused by Gilbert’s syndrome?
• Have you done tests for other conditions?
• The symptoms do not fit with the official descriptions of Gilbert’s syndrome. Can you do more tests or make a referral to a specialist to find out what is going on?
• What can be done to help with the symptoms? Are there any services in my area that could help?

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Support for you

The British Liver Trust offers support and information to anyone living with a liver condition. We can also support family, friends and carers.

You can find out more about our support groups and online forum here.

We also offer a helpline run by specialist liver nurses. You can find out more about this here.

You can also find advice and links to help support your mental health here.

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Special thanks

We would like to thank all the patients and healthcare professionals who helped us to create and review this information. Including Louise Palmer, a member of our patient information volunteer group and Dr Kushala Abeysekera, Consultant Senior Lecturer in Hepatology Epidemiology and Public Health, Bristol Medical School.

Published: September 2024