Patient Comments: Gilbert Syndrome - Symptoms

What symptoms did you experience with your Gilbert syndrome?

Comment from: mae, 25-34 Female (Patient) Published: July 15

For my entire life I have been dealing Gilbert syndrome. My white eyes became yellowish since I was a baby. I was disappointed when the doctors said that there is no treatment for this. Most of the people are always asking me what happened to my eyes. I don't have confidence at all because of this syndrome.

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Comment from: Jojo, 45-54 Female (Patient) Published: May 19

My family doctor told me this a few years back. My Gilbert syndrome was detected in blood tests. He told me not to worry, there is no cure and to keep living a healthy lifestyle. I do feel tired and lose concentration at times. I guess I found coping techniques like napping on weekends, getting to bed earlier at night, writing notes at work and eating less starch.

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Comment from: Beatrix, 55-64 Female (Patient) Published: January 17

It can be frustrating to be told by doctors that Gilbert Syndrome is harmless or benign. It is true that it doesn't get worse or harm or kill you, but it can have quite an effect on your quality of life and understanding and managing it have been essential for me. It seems clear that when there is a strain on the liver, the bilirubin is worse. For example at times when there are more hormones going through the system as at puberty and possibly pre-menstrually for women. I've found it has lessened since menopause. I could never take the contraceptive pill, because it gave me morning sickness. These things are never mentioned in the literature, although doctors have agreed with me that they are so. Similarly, a lot of fatty food, such as a lot of meat in the diet can leave one feeling very unwell and fatigued. Alcohol can do the same thing. Poor concentration is occasionally mentioned as a symptom. This is certainly true for me, as is poor memory. These things have had a huge impact on my life.

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Comment from: rich, 13-18 Male (Caregiver) Published: April 15

My son has had jaundice in his eyes for six months. He also had jaundice of the skin. He had fatigue for about three months before I finally took him to the doctor. He had just started to wear contacts and I thought the change in eye color was from the contacts. He has had elevated bilirubin levels. We went to a specialist who did lots of blood tests and said that if we didn't hear from her, it is probably Gilbert Syndrome. He also has had dizzy spells after getting up and fatigue. I would just feel better if his eyes looked normal again.

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