Gilbert syndrome

August, 10th, 2023

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Gilbert (zheel-BAYR) syndrome is a common, harmless liver condition in which the liver doesn’t properly process bilirubin. Bilirubin is produced by the breakdown of red blood cells.

Gilbert syndrome is an inherited genetic condition. You might not know you have Gilbert syndrome until it’s discovered by accident, such as when a blood test shows raised bilirubin levels.

Gilbert syndrome requires no treatment.

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The most frequent sign of Gilbert syndrome is an occasional yellowish tinge of the skin and the whites of the eyes as a result of slightly higher levels of bilirubin in the blood. In people with Gilbert syndrome, bilirubin levels may increase due to:

• Illness, such as a cold or the flu
• Fasting or eating a very low-calorie diet
• Dehydration
• Menstruation
• Strenuous exercise
• Stress

When to see a doctor

Make an appointment with your health care provider if you have jaundice, which has many possible causes.

Causes

Gilbert syndrome is caused by a modified gene you inherit from your parents. This gene usually controls an enzyme that helps break down bilirubin in your liver. When you have an ineffective gene, your blood contains excess amounts of bilirubin because your body doesn’t produce enough of the enzyme.

How the body processes bilirubin

Bilirubin is a yellowish pigment made when your body breaks down old red blood cells. Bilirubin travels through your bloodstream to the liver, where the enzyme breaks down the pigment and removes it from the bloodstream.

The bilirubin passes from the liver into the intestines with bile. It’s then excreted in stool. A small amount of bilirubin remains in the blood.

How the modified gene is passed through families

The modified gene that causes Gilbert syndrome is common. Many people carry one copy of this gene. In most cases, two modified copies are needed to cause Gilbert syndrome.

Risk factors

Although it’s present from birth, Gilbert syndrome usually isn’t noticed until puberty or later, since bilirubin production increases during puberty. You have an increased risk of Gilbert syndrome if:

• Both your parents carry the modified gene that causes the disorder
• You’re male

Complications

The low level of the bilirubin-processing enzyme that causes Gilbert syndrome may also increase the side effects of certain medications, since this enzyme plays a role in helping clear these medications from your body.

These medications include:

• Irinotecan (Camptosar), a cancer chemotherapy drug
• Some protease inhibitors used to treat HIV

If you have Gilbert syndrome, talk to your health care provider before taking new medications. Also, having any other condition that impairs the destruction of red blood cells may increase your risk of developing gallstones.

Diagnosis

Your health care provider may suspect Gilbert syndrome if you have unexplained jaundice or if the level of bilirubin is elevated in your blood. Other symptoms that suggest Gilbert syndrome as well as a number of other liver conditions include dark urine and abdominal pain.

To rule out more-common liver conditions, your health care provider may order a complete blood count and liver function tests.

The combination of standard blood counts and liver enzymes with an elevated bilirubin level is an indicator of Gilbert syndrome. No other testing usually is needed, although genetic testing can confirm the diagnosis.

Treatment

Gilbert syndrome doesn’t require treatment. The bilirubin levels in your blood may fluctuate over time. You may occasionally have jaundice, which usually resolves on its on with no ill effects.

Self care

Certain life events, such as stress, can trigger episodes of higher bilirubin levels in Gilbert syndrome, leading to jaundice. Taking steps to manage those situations can help keep bilirubin levels under control.

These steps include:

• Make sure your health care providers know you have Gilbert syndrome. Because Gilbert syndrome affects the way your body processes certain medications, every provider you visit needs to know that you have the condition.
• Eat a healthy diet. Avoid extremely low-calorie diets. Stick to a routine eating schedule, and avoid fasting or skipping meals.
• Manage stress. Find ways to deal with the stresses in your life. Exercise, meditation and listening to music may be helpful.

Preparing for your appointment

Before your appointment, you might want to jot down questions to ask your health care provider, including:

• Is my bilirubin level significantly elevated?
• Should I have my bilirubin level tested again?
• Could Gilbert syndrome cause my signs and symptoms?
• Could the medications I’m taking for other conditions worsen Gilbert syndrome?
• Can Gilbert syndrome cause complications or lead to liver damage?
• Do I have a higher risk of gallstones?
• Is there anything I can do to maintain a low bilirubin level?
• Is jaundice harmful?
• How likely is it that my children will inherit Gilbert syndrome?