Living With Gilbert’s Syndrome

This past year I was diagnosed with Gilbert’s Syndrome (pronounced ‘zheel-BAYR’) thorugh an enhanced blood test.  Gilbert’s syndrome is a common, mild liver disorder in which the liver doesn’t properly process a substance called bilirubin (pronounced ‘billy-roo-ben’). Bilirubin is produced by the breakdown of red blood cells. If you have Gilbert syndrome, you have inherited an abnormal gene that controls the enzyme that helps break down bilirubin. Getting the disorder isn’t related to lifestyle habits or environment.

Also known as constitutional hepatic dysfunction, unconjugated benign bilirubinemia and familial nonhemolytic jaundice, Gilbert’s syndrome typically doesn’t require treatment or pose serious complications. Gilbert’s syndrome was first described by French gastroenterologist Augustin Nicolas Gilbert (1958-1927) and colleagues in 1901.

In fact, Gilbert’s 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.  That is how I found out I had it.  Earlier this year I had an extensive blood test and my doctor noticed my elevated bilirubin levels.  I even took another blood test the following week to confirm.  Levels of bilirubin in Gilbert’s syndrome patients is reported to be from 1.2 to 5.3 mg/dL.  My bilirubin level was 3.5.

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.

From #:

Most people who are affected don’t know it. They have no signs whatsoever.  Levels of bilirubin usually stay within normal levels, and occasionally rise slightly.

Jaundice – there may be a yellow tinge to the whites of the eyes and the skin when bilirubin levels go up too high. Symptoms may become more obvious as a result of:

  • Illness
  • Infection
  • Dehydration
  • Stress
  • Menstruation
  • Fasting and skipping meals
  • Overdoing things (overexertion)

Although bilirubin levels hardly ever reach dangerous levels, the resulting jaundice can be disturbing. Jaundice symptoms usually appear in the eyes first, and then the skin if bilirubin levels rise further.

The following symptoms may also be possible, but less common:

  • Loss of appetite
  • Nausea
  • Fatigue
  • Weakness
  • Abdominal pain

Notable people with Gilbert’s syndrome:

Napoleon Bonaparte – was a military and political leader of France whose actions shaped European politics in the early 19th century.

Arthur Kornberg – Nobel laureate in Physiology or Medicine in 1959

Nicky Wire – ‘Manic Street Preachers’ bassist

Sándor Pet?fi – Hungarian poet

Noel Fielding – ‘The Mighty Boosh’ co-creator and comedian

Me – jolly creator of the blog you are currently reading

Luckily for me, as of now my bilirubin level is not high enough to see signs of it. My doctor says that the syndrome is genetic and not to fear because my other blood test numbers (liver, kidneys and gal bladder) are fine, so not to worry. Just to live life as I was doing so and just to let other medical professionals know when needed.

I was not too happy when I found out that I had Gilbert’s syndrome. I mean I’m just now 40 and I am already taking medication for high blood pressure, for crying out loud!  However, after learning more about Gilbert’s syndrome, I calmed down. Gilbert syndrome can cause episodes of jaundice, but 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. I’m glad I don’t have to take yet another pill each day. I’m taking enough as it is.