Patient Comments: Gilbert Syndrome - Symptoms

What symptoms did you experience with your Gilbert syndrome?

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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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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