Has anyone ever been told they have Gilbert's Syndrome? I got this on the subject from the Mayo Clinic: http://www.mayoclinic.com/print/gilberts-syndrome/DS00743/DSECTION=all&METHOD=print Gilbert syndrome By Mayo Clinic staff -------------------------------------------------------------------------------- Definition Gilbert (zheel-BAYR) syndrome is a common, mild liver disorder in which the liver doesn't properly process a substance called bilirubin. Bilirubin is produced by the breakdown of red blood cells. Also known as constitutional hepatic dysfunction, unconjugated benign bilirubinemia and familial nonhemolytic jaundice, Gilbert syndrome typically doesn't require treatment or pose serious complications. In fact, Gilbert syndrome is usually not considered a disease because of its benign nature. You most often find out you have the disorder by accident, when you have a blood test that shows elevated bilirubin levels. Gilbert syndrome affects 3 percent to 7 percent of the U.S. population. Worldwide estimations vary, and no good measure exists. More males than females have the condition. Symptoms Usually no symptoms, sometimes jaundice As an inherited condition, Gilbert syndrome is present from birth. Although it rarely causes symptoms, it may raise bilirubin enough to produce mild jaundice. While the bilirubin does not reach a dangerous level, the appearance of jaundice may be unsettling. Typically, excess bilirubin turns the whites of your eyes yellow before affecting the color of your skin. If the bilirubin level keeps rising, your skin may develop a yellowish tinge. Possible symptoms You may experience episodes of: ■Fatigue ■Weakness ■Abdominal pain However, it's not known if Gilbert syndrome actually causes such symptoms, or if they're related to stress or other conditions. Factors that may increase symptoms A number of factors may increase bilirubin if you have Gilbert syndrome. These may include: ■Illness, including infections, such as a cold or the flu ■Menstruation ■Fasting or skipping meals ■Dehydration ■Overexertion Causes If you have Gilbert syndrome, you have inherited an abnormal gene that controls the enzyme that helps break down bilirubin. Bilirubin is a yellowish pigment and is a normal waste product from the breakdown of old red blood cells. Bilirubin travels through your bloodstream to the liver. Normally an enzyme in liver cells breaks down the bilirubin 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. When you have Gilbert syndrome, you have a lower level of the enzyme that breaks down bilirubin. Consequently, excessive amounts of a form of bilirubin called unconjugated bilirubin can build up in your blood. Risk factors Other than the chance of inheriting abnormal genes, there are no known risk factors that increase the likelihood that you'll get Gilbert syndrome. When to seek medical advice If you notice a yellowish tinge to your skin or the normally white portions of your eyes, let your doctor know as soon as possible. A variety of conditions other than Gilbert syndrome can cause jaundice, and medical tests and exams can rule out serious illnesses. Check with your doctor before taking new medications and take care not to consume higher than recommended doses of acetaminophen (Tylenol, others). You may be at greater risk of liver side effects for these or other drugs. Tests and diagnosis Often found by accident or if you have jaundice If you have jaundice, your doctor may suspect that you have Gilbert syndrome or perhaps another condition. Often, though, Gilbert is found purely by accident when you have blood tests for other health reasons. Although it's present from birth, Gilbert syndrome usually isn't diagnosed until puberty or later, when bilirubin production increases. Blood tests Your doctor may do a physical exam and order additional blood tests. With Gilbert syndrome, unless you have an episode of jaundice, there are no physical signs or symptoms. Common blood tests include: ■Complete blood count (CBC) ■Liver function tests A diagnosis of Gilbert syndrome can usually be made from blood tests. With Gilbert syndrome, all of the results will typically be normal except for the mildly increased level of unconjugated bilirubin. When you have Gilbert syndrome, the level of bilirubin in your blood may fluctuate. It's not always higher than the normal range. If your initial blood test shows a normal level of bilirubin, your doctor may suggest repeating the tests a couple of times. Tests that help rule out other conditions Rarely, your doctor may suggest other tests, including: ■An ultrasound of your liver ■Fasting for a 24-hour period to see if that increases bilirubin levels ■Genetic testing, which is not widely available, to check for the abnormal gene that causes Gilbert syndrome When you have jaundice or a high bilirubin level, it's important to ensure that you don't have a more serious liver condition such as hepatitis or an obstructed bile duct. Your doctor may recommend other tests to check for such conditions. Complications Jaundice Gilbert syndrome can cause episodes of jaundice. However, the jaundice is usually mild and goes away on its own. There are no other known complications of the condition, and it won't damage your liver. More side effects with certain medications The low level of the bilirubin-processing enzyme may cause increased side effects with certain medications because this enzyme helps eliminate these medications. In particular, irinotecan (Camptosar), a medication used to treat colon cancer, can reach toxic levels if you have Gilbert syndrome, causing severe diarrhea. Because of this potential effect with certain medications, talk to your doctor before taking any new medications if you have Gilbert syndrome. Treatments and drugs Because Gilbert syndrome is essentially a mild, harmless condition, it doesn't require treatment. The level of jaundice associated with Gilbert syndrome is typically harmless as well, and goes away on its own. If you have Gilbert syndrome, you don't typically need long-term monitoring of your condition or repeat blood tests. But consult your doctor if you notice worsening jaundice or other symptoms. If you're concerned about jaundice, the barbiturate medication phenobarbital may reduce bilirubin levels but can have side effects such as sedation and lightheadedness. Prevention Gilbert syndrome is an inherited genetic disorder. Getting the disorder isn't related to lifestyle habits or environment. The only way to theoretically prevent the condition is to keep parents from passing the abnormal gene that causes it on to their children. But more than half the people in the general population carry one copy of this abnormal gene, making it very common. If two people with this abnormal gene have a child, they may pass along the genetic defect that causes Gilbert syndrome — but not always. Not everyone who has two copies of this abnormal gene gets Gilbert syndrome. This means you may have the condition without a family history of it. In contrast, everyone with Gilbert syndrome does have two copies of this abnormal gene. Lifestyle and home remedies Certain events in your life can trigger episodes of higher bilirubin levels in Gilbert syndrome, leading to jaundice. Doing what you can to manage those situations can help keep bilirubin under control and perhaps prevent bouts of jaundice. These steps include: ■Avoiding infectious illnesses, such as colds and the flu ■Managing stress ■Eating a nutritious diet, and avoiding fasting and skipping meals Symptoms See AlsoHand Scheduled Section Focus Related Links Related Guides Children Parent Liver problems DS00743 April 18, 2008 I was told I had 'it' when I was at Oldchurch Hospital (2001?), a CFS in patient ward in London, by Professor Lindley. He said it had been noted as more prevalent in PWCFS (2 patients in the six bed ward had it). I looked it up on Wikipedia. http://en.wikipedia.org/wiki/Gilbert's_syndrome It seems only a few studies have been done on this minor 'syndrome'. Peter White and Anthony Cleare looked at in relation to CFS in 1993. Any thoughts anyone?