Gilbert's syndrome

Gilbert’s syndrome is a common and harmless condition, where high levels of a substance called bilirubin build up in the blood.

Bilirubin is a yellow pigment found naturally in the blood, which forms when red blood cells are broken down.

Symptoms of Gilbert's syndrome

Most people with Gilbert's syndrome will experience occasional and short-lived episodes of jaundice. This is when the skin and whites of the eyes turn slightly yellow.

Some people also report other problems during episodes of jaundice, including:

• abdominal (tummy) pain
• feeling very tired (fatigue)
• loss of appetite
• feeling sick
• dizziness
• irritable bowel syndrome (IBS) – a common condition that causes stomach cramps, bloating, diarrhoea and constipation
• problems concentrating and thinking clearly (brain fog)
• a general sense of feeling unwell

However, these problems are not thought to be directly related to increased bilirubin levels, and could mean you have another condition other than Gilbert’s syndrome.

Around one in three people with Gilbert’s syndrome experience no noticeable symptoms, and you may not realise you have it until tests for an unrelated condition are carried out.

When to see your GP

Although Gilbert's syndrome is harmless, jaundice can sometimes be a symptom of a more serious liver problem.

Therefore, you should seek immediate medical advice from your GP if you experience an episode of jaundice for the first time. If this is not possible, contact NHS 111 or your local out-of-hours service for advice.

If you have been diagnosed with Gilbert’s syndrome, you don't usually need to seek any medical advice during an episode of jaundice, unless you have any additional or unusual symptoms.

What causes Gilbert’s syndrome?

It is a genetic condition. People with Gilbert’s syndrome have a faulty gene that means their liver has problems removing a substance in the blood called bilirubin.

Normally, when red blood cells reach the end of their life (after about 120 days), haemoglobin, the red pigment that carries oxygen in the blood, breaks down into bilirubin.

The liver converts bilirubin into a water-soluble form, which then passes into bile and is eventually removed from the body in urine or stools. Bilirubin gives urine its light yellow colour and stools their dark brown colour.

In Gilbert’s syndrome, the faulty gene means that bilirubin is not passed into bile at the normal rate. Instead, it builds up in the bloodstream and can cause the skin and eyes to take on a yellowish tinge.

Other than inheriting the faulty gene, there are no known risk factors for developing Gilbert's syndrome. It is not related to any lifestyle habits, environmental factors or serious underlying liver problems (such as cirrhosis or hepatitis C).

What triggers the symptoms?

People with Gilbert’s syndrome often find there are certain triggers that can bring on an episode of jaundice.

Some of the possible triggers linked with the condition include:

• being dehydrated
• going without food for long periods of time (fasting)
• being ill with an infection
• being stressed
• physical exertion
• not getting enough sleep
• having surgery
• in women, having their monthly period

If possible, avoiding known triggers can help reduce your chance of experiencing episodes of jaundice.

Who is affected

Gilbert’s syndrome is a common condition, although it's not known how many people are affected because it doesn't always cause obvious symptoms. Some estimates suggest that up to 1 in every 10 people in the UK may have the condition.

Gilbert's syndrome is more common in men than women and the symptoms usually first become apparent around puberty, possibly as a result of hormonal changes.

Diagnosing Gilbert's syndrome

Gilbert’s syndrome can be diagnosed using a blood test to measure the levels of bilirubin in your blood and another type of blood test, called a liver function test.

When the liver is damaged, it releases enzymes into the blood. At the same time, levels of proteins that the liver produces to keep the body healthy begin to drop. By measuring the levels of these enzymes and proteins, it is possible to build up a reasonably accurate picture of how well the liver is functioning.

If the tests show that you have high levels of bilirubin in your blood, but your liver is otherwise working normally, a diagnosis of Gilbert’s syndrome can usually be made with confidence.

In certain cases, it may be necessary to have a genetic test to confirm a diagnosis.

Living with Gilbert's syndrome

Although it is a long-term condition, Gilbert’s syndrome does not require any treatment, because it does not pose a threat to health and is not associated with any complications or an increased risk of liver disease.

Episodes of jaundice and any associated symptoms are only short-lived and will eventually pass.

There is no reason to modify your diet if you have Gilbert’s syndrome and the standard recommendations on diet and exercise still apply.

However, you may find it useful to avoid known triggers for the condition, such as dehydration and stress.

If you have Gilbert's syndrome, the problem with your liver may also mean you are at risk of developing jaundice or other side effects after taking certain medications. Therefore, you should seek medical advice before taking any new medication, and you should mention to any doctors treating you for the first time that you have the condition.

Medications that should be used with caution if you have Gilbert's syndrome include some types of HIV medication, some forms of medication for high cholesterol and some chemotherapy medications.