Patient Comments: Gilbert Syndrome - Symptoms

What symptoms did you experience with your Gilbert syndrome?

Comment from: Pzzlme, 35-44 Female (Patient) Published: May 30

I have had Gilbert"s syndrome for at least 20 years. I have been to the doctor for unexplained dizziness. I was never told Gilbert"s might be a cause. I get motion sick very easily. I had morning sickness that lasted all 9 months in all 3 of my pregnancies. I have also had rashes and itchiness, especially on my legs and arms. One doctor told me Gilbert"s can cause that, another said it doesn"t. I also suffer with poor concentration often and poor memory. It was interesting to see others have the same symptoms as I, especially since I"ve never had a doctor attribute these symptoms I have to Gilbert"s.

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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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