Patient Comments: Gilbert Syndrome - Symptoms

What symptoms did you experience with your Gilbert syndrome?

Comment from: Rwk959, 19-24 Male (Patient) Published: June 06

I was diagnosed with Gilbert syndrome a few months ago. They found out I had it from doing blood tests. My usual symptoms are stomach pain, fever, nausea, difficulty swallowing, anxiety, loss of appetite, weight loss, and difficulty maintaining concentration. Whenever I get these symptoms it is usually when I am stressed and it is awful.

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Comment from: Alaska90, 65-74 Female (Patient) Published: April 04

I have been found to have slightly raised bilirubin levels following a blood test at my general physician's (GP) office. I originally visited GP because of noticing paler and softer bowel movements and slight lack of concentration. I was told it was Gilbert's syndrome. This is hereditary and my 36 year old son also has problems. His however became a condition known as hemolytic anemia and needed a lot of treatment. Younger people with this condition should be monitored I would have thought, in order to make sure it does not change into more serious condition.

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Comment from: Jean, 45-54 Female (Patient) Published: July 10

I was diagnosed with Gilbert syndrome after tests and elimination at 19 years of age. I had a severe dose of glandular fever which left me jaundiced. I often got sick if I had not eaten within 6 hours. I suffer from headaches, right side abdominal pain, itchy arms, legs and back. I feel the cold, have poor sleep and concentration. Surgery is bad as well as any stomach bugs, leaving me throwing up violently and eventually bile more often than not. I suffer headaches and tiredness often. When I got diagnosed, once appendicitis and fat intolerance were ruled out, I was found to be protein intolerant. I manage my diet by eating regularly and controlling how much protein I eat, to reduce nausea, headaches and abdominal pain. I am still learning about the condition and found out when I recently had surgery, Gilbert syndrome sufferers need a warm theater when having surgery as we feel the cold. First time I never froze going in to surgery thanks to the anesthetist who knew about Gilbert syndrome.

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Comment from: Connie, 55-64 Female (Patient) Published: March 26

I went to my dermatologist with cuts on my dried hands and fingers. I told her that another dermatologist said it was psoriasis. I told her that an 80 year old lady who sat by me had hands nicer than I did at age 41. She looked at the lump on my first finger's knuckle and asked if she could put 3 small needle holes in it to show me what it was. After she made 3 quick pricks she squeezed out yellowish brown Vaseline type goop. She said to keep hydrated with water, and tell my doctors that I have Gilbert syndrome and I will always have high bilirubin reading levels, and jaundice sometimes. She told me that both parents must have had the abnormal gene. I am now 62 and have three more finger bumps, plus fatigue and extreme dryness and cuts on feet and hands. I will now take Lipitor as I was given a prescription for it. Eat healthy.

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