How To Understand Gilbert's Syndrome

If you've recently been diagnosed with Gilbert's syndrome, you might be wondering how secondary bilirubin is different from the main kind, how it might affect your life, and how to properly pronounce "Gilbert." Here's what you need to know about living with Gilbert's disease.

  1. Who is affected? A single-digit percentage of Americans have the hereditary liver disorder known as Gilbert's syndrome. The syndrome is more common in men than women. If you have been diagnosed with Gilbert's syndrome, it means that you have an elevated amount of secondary (or unconjugated) bilirubin in your bloodstream due to reduced performance of glucoronyl transferase, an enzyme that would otherwise turn it to conjugated bilirubin. Conjugated bilirubin passes out of our body through the kidneys.
  2. Diagnosis. Sometimes a mild bout of jaundice prompts blood work to determine the cause, but a diagnosis of Gilbert's disease often occurs unplanned after a routine blood test. When doctors detect elevated levels of bilirubin (bile) in blood work results, they conduct a second blood test focusing specifically on liver function in order to reach a positive diagnosis. If unconjugated bilirubin is slightly elevated while the rest of liver results are normal, then the doctor can diagnose you with Gilbert's syndrome.

    Commonly Gilbert's syndrome is not diagnosed until teenage years or even adulthood, because bilirubin production is not as high in childhood.

  3. Symptoms and impact on the patient.
    • Liver damage? The big question of newly diagnosed patients is whether the syndrome is indicative of liver damage or will cause liver damage in the future (that was certainly my first concern when I was diagnosed). The answer to both prongs of that question is "no." Gilbert's syndrome does not harm your liver and isn't related to liver damage in any way. However, the patient should be aware of a few potential symptoms and consequences of the disorder, so as to avoid panic and prevent potential damage.
    • Jaundice. A patient with Gilbert's syndrome might experience mild and inconsequential jaundice as a result of the elevated secondary bilirubin. The likelihood of this jaundice increases when a person is battling an infection or illness, or experiencing elevated stress or hunger. Sometimes menstruation can also cause a spike in a patient's bilirubin.
    • Discomfort or lethargy during episodes. Along with jaundice, patients sometimes describe nausea or discomfort in the abdomen, as well as lack of energy. However, the connection between these symptoms and the syndrome itself remains unclear at this point. Possibly the symptoms are interrelated, yet not direct results of Gilbert's syndrome.
    • Sensitivity to certain medications. Though the disorder is relatively inconsequential (to the point that it isn't considered a "disease"), there are certain drugs that the liver can't detoxify due to Gilbert's syndrome, which means that the patient may experience more of the negative side effects of the drug.

      The reason? Detoxification of some medications requires the full function of the enzyme glucoronyl transferase, whose deficiency is the root cause of the Gilbert's syndrome. Acetaminophen is also hard for some patients' livers to tolerate; some with Gilbert's syndrome also lack the full force of a different enzyme that would process the acetaminophen. Talk to your doctor before taking any medications to ensure that you avoid any drug that might lead to problems because of your disorder.

  4. The name. Lastly, you should be able to pronounce your condition with confidence. It's not pronounced like the English name, "Gilbert." That would be far too dull! To pronounce it correctly, think French; the syndrome was named for French doctor Augustin Nicolas Gilbert (Zheel-BEAR). When you tell people you have Gilbert's (Zheel-BEARS) syndrome, the correct pronunciation evokes a sense of intrigue, maybe even romance! Certainly beats its other names (constitutional hepatic dysfunction, GS, familial nonhemolytic jaundice, unconjugated benign bilirubinemia).

Gilbert's syndrome is a condition whose impact on your life is minimal and impact on your health negligible. Compared to other hereditary conditions, this one is a walk in the park. And you get to tell your friends you have a benign syndrome named after a French gastroenterologist.


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