Patient Comments: Gilbert Syndrome - Symptoms

Question:

What symptoms did you experience with your Gilbert syndrome? Submit Your Comment

Comment from: angmarie28, 25-34 Female (Patient) Published: January 18

I have always known something was wrong, but never looked into it until 4 years of blood work showed I always have elevated bilirubin, so finally I saw a doctor and was diagnosed with Gilbert syndrome. I have been always really tired even with plenty of sleep. My legs itch often, and sometimes I scratch them so bad, I bruise my entire thigh. I have bad brain fog, IBS (irritable bowel syndrome), and horrible left side aches. I can never drink enough, yellow tinted skin, the works.

Comment from: Dizzy, 65-74 Female (Patient) Published: January 07

I was recently diagnosed with Gilbert syndrome. I am 71, and after reading all the comments, I know I have been affected by it since my teen years. My friends used to ask about the yellowness of my eyes back then. Also I passed out several times. I have always had dizziness and itching legs. Stomach issues have been a big problem too. I have to be so careful about what I eat.

Comment from: Kat, 19-24 Female (Patient) Published: December 16

I'm 19 and I've been diagnosed with Gilbert syndrome (GS) after I almost collapsed this summer. I was yellow, including the whites of my eyes, skin and tongue, had terrible abdominal pain, fatigue, literally no appetite and gagged at any irritable smell. These symptoms reappear every time I'm sick or under a lot of stress. My bilirubin levels went up to 5.6 after I broke up with a guy. Also I've had itchy legs regardless of how much moisturizer I put on, now I understand it's because of GS.

Comment from: Fi, 45-54 Female (Patient) Published: October 04

I was diagnosed with Gilbert syndrome (GS) in my late 40s, although I had a scan and blood tests 10 years earlier, because when I drink alcohol regularly i.e., during holidays, I would always have abdomen pain. The results were clear, and I now know it was having GS which was causing it. My knuckle on the middle finger of my right hand is becoming swollen. I'm wondering if the GS is causing this to happen.

Comment from: Anonymous , 19-24 Female (Patient) Published: August 13

I got diagnosed with Gilbert syndrome at the age of 17. After a few years of sharp abdomen pain coming and going, I went to the doctor about it. I went through a series of blood tests before the doctor figured out I had Gilbert syndrome. I still get the sharp abdominal pains quite often and they're unbearable. It's sad that there's no way to fix this. I have tried painkillers but they don't work.

Comment from: Kayla, 19-24 Female (Patient) Published: June 26

For a while I have had so many symptoms such as jaundice of the eyes and skin, nausea, vomiting, constipation, stomach pain, confusion, and extreme fatigue even though I get plenty of sleep. I have been hospitalized because of these symptoms and I have been in and out of the emergency room. I have seen a specialist and I have gone through many tests. After everything my gastroenterologist has ruled that my tests are only compatible with Gilbert's syndrome. My bilirubin levels have been as high as 5.3.

Comment from: BlueDoug, 35-44 Male (Patient) Published: June 07

I was diagnosed with Gilbert syndrome at 18 (20 years ago) through a routine blood screen. I've had to avoid anything heavy in gelatin and cream along with alcohol as the resulting effects were horrendous. While jaundice was never a major issue, the nausea really took it out of me. I did find that taking milk thistle tablets did alleviate the effects but not fully.

Comment from: Darlene, 75 or over Female (Patient) Published: February 06

I am now 79 and my Gilbert syndrome diagnosis came in at age 53. Initial blood test with elevated bilirubin and tannish yellow skin spots (rather large) showing up on my arms and torso. No real symptoms that I would attribute to this. Bilirubin continues to be modestly elevated. Two of our three children have a like diagnosis. My husband had very mild symptoms that usually only surfaced when he had a flu or cold. Mainly some mild jaundice that would resolve when the cold left.

Comment from: Rach, 25-34 Female (Patient) Published: February 01

I have just been told I have had Gilbert syndrome and it's nothing to worry about. After reading all these comments I feel like a weight has been lifted as I have most symptoms and have had for years, so it's not just in my head. The abdomen pain and gallstones, extreme brain fog, itchy bottom legs, fatigue, memory loss and poor concentration, feeling sick, etc., have been some of my symptoms. It's a shame there are really no studies for a tablet we can take to relieve us of symptoms.

Comment from: Sage, 19-24 Male (Patient) Published: January 29

I was diagnosed with Gilbert's syndrome 7 years ago. I usually feel light headed when I stand up, and not being able to focus in a conversation for too long. Sometimes I suffer from itchy skin. I usually feel nauseous when I don't eat for several hours. When I mentioned these symptoms to doctors they say that it's not related to Gilbert's syndrome, but after reading comments I know that was right. Thank you for sharing your experiences.

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Comment from: Machine 46, 45-54 Male (Patient) Published: November 06

Fatigue and difficulty focusing are symptoms of my Gilbert syndrome. I feel weak and fuzzy headed if not eaten lately, and can be short tempered if I can't get to food when in this phase. I have yellow whites of eyes and I suffered with jaundice as a baby.

Comment from: Gilbert's syndrome, 19-24 Male (Patient) Published: October 02

I experience sharp pains on both sides of my abdomen due to Gilbert syndrome. And I always have had yellowish eyes. At first before diagnosing I thought maybe I had torn my muscles from lifting weights as I've had two hernia surgeries that felt similar. Finally I found out after a blood test that it had to do with the syndrome.

Comment from: Fran, 45-54 Female (Patient) Published: June 12

My symptoms of Gilbert syndrome are fatigue (seems to be very common) and low blood sugar if I don't eat regular small meals, intolerance of greasy or heavy starch foods, jaundiced skin and eyes, and horribly itchy lower legs - I have scars from scratching the top layers of skin off. I'm very grateful this isn't a life threatening illness but it's frustrating that the symptoms aren't recognized by many doctors because you can make quite a big change to how you feel by managing the symptoms well.

Comment from: Zelner, 35-44 Male (Patient) Published: May 22

My symptoms of Gilbert syndrome are extreme fatigue all the time, light headedness, and trouble concentrating.

Comment from: Spire, 55-64 Male (Patient) Published: May 17

I was diagnosed with Gilbert syndrome (GS) sixteen years ago although I believe I was first affected by it when I was a teenager. I am currently sixty. I have suffered from fatigue for forty plus years. I have trouble concentrating and my short term memory is and has been terrible. I recently got my general physician to prescribe Paxil for my tinnitus and anxiety and that seems to alleviate the fatigue and concentration issues. I don't understand the lack of research for GS and its potential symptoms.

Comment from: John , 45-54 Male (Patient) Published: May 10

I got diagnosed with Gilbert's syndrome 2 years ago, and the doctor said no need to do anything. I think there should be some help and advice on this as I constantly have kidney and lower back pain. I often feel tired and fatigued, and the doctor didn't tell me what to eat, or avoid eating/drinking. After reading these posts I'll avoid fatty foods, etc., and omit alcohol too. I just wish there was some help.

Comment from: AlexisG, 45-54 Female (Patient) Published: April 16

I've known that I have Gilbert syndrome for approximately ten years, after having blood tests for my type 1 diabetes! I haven't given it a second thought till this month when I got so fed up with feeling constantly fatigued and my brain fog couldn't be ignored or recovered from after sitting quietly for a half hour. My experience is that anything which helps support the liver will support the body to deal more effectively with this syndrome. Milk thistle, B vitamins, lots of lemon water throughout the day, cut back on fats and processed foods and eat lots of fruits and vegetables. The symptoms which I find hardest to deal with are the fatigue, nausea and brain fog. Hope that the episodes of jaundice really are temporary, and short lived.

Comment from: ResearchDinosaur, 25-34 Female (Patient) Published: March 29

I went and saw my doctor as I have high stress and anxiety. My cortisol levels were elevated at one stage. Due to anxiety and stress I have heart palpitations and during a routine blood test it was detected that I have Gilbert's Syndrome and that it will get worse during times of stress. There are no medically acclaimed symptoms for Gilbert's Syndrome however I have had the following. Yellow tinge to eyes and skin during times of high stress, fatigue (I sleep well), dizziness (I also have low blood pressure), thirst and therefore frequent urination (no diabetes), and memory Loss or poor concentration (I put this down to stress). I also have weight gain (probably the stress). My doctor has suggested that 4 units per night of red wine may help with the stress and anxiety and also the low blood pressure, supporting the heart and therefore alleviating some of the symptoms. I drink a lot, a lot of water during the day. I do Pilates and Yoga for stress management. This will no doubt be a lifelong thing I will have to regularly monitor. My doctor said that this can come and go and depending on the make-up of my genetics will determine just how long it takes.

Comment from: CK, 35-44 Male (Patient) Published: January 12

My Gilbert syndrome symptoms are fatigue, extreme sweats, then chills and itchy skin.

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Comment from: NorthDakotaDave, 35-44 Male (Patient) Published: January 12

About 11 years ago I was diagnosed with Gilbert syndrome through about 4 blood tests. The doctor couldn't figure out what I had. It was no fun. Anyway, I still have symptoms today, but not as bad as before. I have some yellowing of the eyes (slightly); it's worse when I am way overtired or dehydrated. I also get fatigued fairly easy if I don't take the supplements I use to fight the symptoms, or if I get way over stressed. I also used to get foggy brain a little. I searched all around for information and found a bunch of helpful supplements. I still take about 4 supplements from there and am able to combat the fatigue. My eyes are also less yellow my wife tells me.

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.

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.

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.

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.

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.

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.

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.

Comment from: Yash , 25-34 Male (Patient) Published: July 24

Twelve years back I was diagnosed with hepatitis, and my level is continually maintained near about two. Then my doctor told me I was suffering from Gilbert syndrome. He told me I am fine and I can do any physical work. No treatment required. But sometimes I feel I cannot be comfortable for a long time on empty stomach. I cannot work for more than 8 hours. I require sleep, food, and water on time. It is difficult to concentrate otherwise. But I am fit.

Comment from: RP, 35-44 Female (Patient) Published: June 19

Ever since I was little I have always been quite a sluggish person. I remember that even though exercise was difficult I used to feel better after it. The typical 1980s childhood processed food diet did little for my Gilbert syndrome and when I ate refined sugar or anything lacking in nutrients I would feel ill for ages after. It was only when I went to medical school and became more health aware that I began to feel better. These days as a doctor and mum of 3 I get up for a 3 mile run or high impact training session at 6, and eat mainly fresh/unprocessed food. If I have a day where the only option is for a freezer beige tea or I'm very stressed/have no sleep I feel as if I have been drinking all night. I can't prove any of these links, but I do wonder if we were cave people eating no processed food and having to move to get water/survive, anyone would notice that they had this. Perhaps Gilbert syndrome is another modern type 2 diabetes which is usually greatly assisted with changes in lifestyle.

Comment from: Jamie, 55-64 Male (Caregiver) Published: April 12

I was diagnosed with Gilbert Syndrome through routine blood work. My GP asked about my alcohol consumption and if I ever experienced black-outs from excessive drinking. At that time in my life I was indeed a heavy drinker which became a severe addiction and black-outs became the norm for me. As I got older my tolerance for alcohol lessened and I would became completely intoxicated with the smallest amount which increased over time until I finally quit no 30 years later. I have a relative that has serious issues with alcohol and was wondering if there is a correlation between GS and booze.

Comment from: Manchestercmac, 45-54 Male (Patient) Published: September 19

Alcohol is a problem; it's like I become toxic. I have irritable bowel syndrome and abdomen related problems. I feel fatigued everyday where sometimes it becomes quite serious. Eating healthy foods and drinking water help. Wish I knew of something else I could add to this but no one seems to know very much about Gilbert syndrome except what happens in the body. It definitely has an effect on me and I really need help dealing with it.

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.

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.

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.

Comment from: woody, 25-34 Male (Patient) Published: August 24

I have had gilbert since I was about 12 years old. I have all the symptoms. I am very interested as to what everyone's bilirubin is at on a normal basis, mine is at a 15 direct.

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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