gilber syndrome

[roulla24]

hi my son was just diagnosed with gilber syndrome even though most of the doctors in my country told me that can not be due to the fact that is mostly asymptomatic . my son has very strong upper stomach pains one or twice a year and jaundice and high liver enzymes. Did this happened to someone else?

[AyrshireK]

There is information about Gilbert's Syndrome on the British Liver Trust website. britishlivertrust.org.uk/in... Tests should confirm that this is the diagnosis. The stomach pains might be nothing at all to do with this condition if they occur so infrequently.

However, if he becomes more symptomatic then push to get further tests in case it is more than just GS.

All the best.

Katie

[roulla24 in reply to AyrshireK]

thank you

[Hidden]

Gilbert's syndrome is reasonably common & benign i.e. not dangerous to health. Your son should be able to live a normal healthy lifespan with no treatment necessary for the condition.

Dr. Melissa Palmer's Guide To Hepatitis and Liver Disease:

'Gilbert's syndrome is a very common, albeit benign, inherited disorder of bilirubin breakdown (metabolism). It occurs in approximately 4 to 9 percent of the population, it is characterized by intermittently elevated bilirubin levels. The presence of Gilbert's syndrome is usually discovered when blood tests are routinely performed, when they are performed for the evaluation of an unrelated problem, or for pre-employment or pre-insurance screening. Bilirubin levels usually rise to about 3 mg/dl, but rarely do they go any higher than 5 mg/dl. Levels typically increase during periods of fasting, stress, menstruation, or during the course of an unrelated illness or infection. Jaundice is the only abnormality found on physical exam. Some people complain of nonspecific symptoms such as abdominal discomfort, nausea, or fatigue; however, some experts feel that these symptoms are due to anxiety. All other LFTs are normal. Imaging studies, such as a liver sonogram and liver biopsy, are not indicated, but should be normal if performed. No long-term complications arise from this harmless syndrome and no therapy is required.'

[roulla24 in reply to Hidden]

thank you for reply this is my problem all other LFTs are not normal but the doctor said is gilber syndrome that’s why i want to see if any person with gilber has high liver enzymes .

[Hidden in reply to roulla24]

If other LFTs aren't normal then your son may have some other issue along with the Gilbert's syndrome. If the abnormal LFTs are only slightly raised a retest in a month or two will hopefully see them back to normal. If they remain raised and the doctor attributes this to the Gilbert's syndrome then consider getting a second opinion.

[roulla24 in reply to Hidden]

they do go down after some days

[Hidden in reply to roulla24]

Your son's Gilbert syndrome might flare when he's stressed or has an unrelated illness resulting in a temporary minor rise in liver enzymes & then everything settles down when his stress levels drop, his cold resolves itself etc. My ALT level two blood tests ago was 64 the highest it's ever been but the next test to my pleasant surprise it was down to 27. A blood test say every 6 months would be good insurance to make sure your son's liver stays healthy. My own rule of thumb is that if my LFT results are abnormal I get a blood test every two months until the result is normal or at least to make sure that the results aren't getting worse.

[roulla24 in reply to Hidden]

ok then i will have it followed and see how it goes thank you

[Hidden in reply to Hidden]

Good morning Hidden ,

Thanks you for all your informative replies but may I just point out our recently updated community rules, in particular Number 6 , which refers to citing information from other sources which are not British Liver Trust or NHS.

healthunlocked.com/britishl...

Best wishes,

Trust9

[roulla24 in reply to Hidden]

is there a telephone that i can call to ask some question?

[Hidden in reply to roulla24]

Good afternoon roulla24,

Of course ! our helpline number is 0800 652 7330 and is available Mon-Fri 10am-14.45pm.

Best wishes

Trust9

[roulla24 in reply to Hidden]

thank you

[sophiaS1980 in reply to Hidden]

Who is Dr, Palmer? i see you always use her name when responding to others.

[Hidden in reply to sophiaS1980]

USA Liver Specialist & Book written by said individual. But don't mention it. 😜

[ThreeSmiles in reply to Hidden]

I don’t think we need to - I think we’ve read the whole book in instalments by now 😀

[RyanWills]

Morning,

I would request further testing depending on how high his enzymes are. I have Gilbert’s Syndrome and my bilirubin levels are around 25 u/mol. Gilbert’s syndrome shouldn’t cause much/any discomfort really. The only time it can have an effect is when you’re ill and your immune system is low, you may find he’s a little jaundice. Was it the genetic test he did? What are his liver enzymes like?

Ryan

[roulla24 in reply to RyanWills]

my son has an abnormal god bladder as well that can cause the enzymes to go up but the doctor didn’t confirm that’s why so i dont know what to do i need another option as well .

[cccd]

Hi roulla,

Yes, consultants believe I have this. The key however is to ensure everything else has been ruled out via blood tests. In my circumstance I had a fatty liver with Gilbert’s. My bilirubin has always been around 29 - 30 on blood tests, normal is up to 20 I think. I have lost 14 kg and all my liver enzymes are now ‘very good’ and my consultant could Not believe how much they’d improved. The only enzyme that remained high was bilirubin which was at the same level it has been for the last 4 years so they were confident that it Gilbert’s.

All other blood tests need to be done to check for autoimmune disorders etc. These need to be requested by a consultant as they do not form a part of the normal liver panel blood tests.

Gilbert’s is completely benign condition, as I have been told by both consultants (one of these consultants is probably the best hepatologist in the country UK). Rest assured but get everything else ruled out.

Hope it helps.

[unique4]

Hi, I was diagnosed with Gilbert’s syndrome when I had my first child at the age of 21. I found out through bilirubin blood tests. They are always raised. Through pregnancy I had itching and felt pretty unwell. However after giving birth itching settled down. Bilirubin went down a little. I haven’t had any major symptoms o until my second child 4 years later.

Since 2015 I have had raised ALT AFT liver function test with high bilirubin levels and GGT.

I have suffered with excruciating attacks in my right upper abdomen. And became very unwell with it. My specialist don’t think the Gilbert’s syndrome is the cause.... as He believes there are no apparent symptoms. I’m Still undiagnosed with this illness 4 years on.

Reading up on Gilbert’s and experiencing my bouts of ill health....I do wonder if the blood levels in the bilirubin cause the other liver enzymes to function differently?? I’m no doctor so take that with a pinch of salt!

Let me know if they find any new medical developments and I hope your son Is feeling better.

[roulla24 in reply to unique4]

i an sorry to hear did you check gadblader?

[roulla24 in reply to roulla24]

my son have same symptoms i will try to see a god leader specialist since he’s godblader if follded and see if that what makes liver enzymes high

[unique4]

I forgot to mention I had my gallbladder removed in 2004. As I became poorly with blocked stones.

Let’s me know how he goes. I’ts not nice for him to go through it but I have managed it with Plenty of rest, keeping calm and managing the pain through medication.... when the attacks become unbearable.

[roulla24 in reply to unique4]

thank you