Patient Comments: Gilbert Syndrome - Symptoms

What symptoms did you experience with your Gilbert syndrome?

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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Comment from: kay, 35-44 Female (Patient) Published: September 23

With Gilbert syndrome I am fatigued a lot. Dizziness occurs quite frequently. Some days I appear yellowish. Concentration is poor. I feel like I am listening but not getting it.

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Comment from: KStevesnon, (Patient) Published: August 26

I was diagnosed with Gilbert's syndrome when I was 18. I went to the hospital for dehydration after a really bad flu bug and they found the spots on my liver that cause the syndrome. I also, get light headed real fast when I stand, I would say too fast, but that doesn't really matter, sometime it happens for no reason. I am fatigued a lot, especially after work, though I do have an office job, but when I get home most times I don't want to do anything. I have the memory issue as well. I have a hard time remembering anything, I have to write it down. I am so happy there are other people like me with the same symptoms, because my doctor thinks I'm crazy, and so does everybody else I talk to. I keep being told it has nothing to do with the syndrome which just drives me crazy and make me want to cry.

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