Gilbert's syndrome

[paradisecityx]

Hey, has anyones child got this?
My little girl is 7, has ulcerative colitis and recently diagnosed with Gilbert's syndrome on top.
I haven't had a phone call with the consultant yet to run through questions and concerns so wanted to ask here incase anyone's got it or little one has it.
If so, what symptoms/problems does it cause?

Thanks. 😞

No personal experience but here's a link to NHS info:

https://www.nhs.uk/conditions/gilberts-syndrome/

I am 50 years old and found out that I probably have Gilbert’s syndrome last year when a routine test (and then 2 follow-ups) found that my bilirubin levels are abnormally high. So, it hasn’t impacted me in my life at all!

But it’s really common - around 1 in 20 people in the UK have it, apparently. I have the impression that it’s relatively harmless, but many people with it suffer from episodes of jaundice.

I don’t know whether there are likely to be more problems with Gilbert’s syndrome in someone who has ulcerative colitis as well, but your doctor will be able to tell you.

My 26 year old son has it .diagnosed about 10 years ago when he was suddenly jaundiced , very tired and generally unwell. His paediatrician diagnosed him due to sky high bilirubin levels . It hasn't really impacted his life and he hasn't really had an occurrence although I was looking at him the last few days thinking he does look a little yellow.He is very sallow skinned so its difficult to tell but all in all it is something to watch or be aware of but do not worry about it.

I'm sure OP is capable of googling it! 🙄

My relative has this. He’s generally got no symptoms occasionally is a little bit yellow ish (you wouldn’t notice if you didn’t know he had it) but yeah doesn’t affect him in anyway.

My daughter, now 26, has it. For years the doctors told us it was post viral fatigue. ( she had a few extended periods of it in childhood). Then a couple of years ago a gp told her it was on her medical record!
she is mostly fine, but can get very run down at times.

Have a family member with it. The only thing it means for him is that his eyes go a bit yellow when he's ill with anything.

Diagnosed as a kid, nearly 30 now. Never any issues, eyes can go a little yellow sometimes when I’m unwell etc but otherwise nothing. Bilirubin levels always high on blood tests.

I’d be grateful if people could give examples of what is considered a high level of bilirubin? My son has just had a measure of 27. I know it is out of range but not sure if it is considered particularly high.

My results came back between 30 and 39 on the three tests I had done last year.

I have it (I'm 60) as does my father ( aged 86) We are both completely asymptomatic . Picked up in routine blood tests and described as a variation of normal.

My husband has it. Diagnosed in his 40s routine blood test. No really obvious symptoms. He’s meant to avoid alcohol and certain foods (ahem)
Seems to be recognised more in America re tiredness etc.

Our daughter’s friend had it and every so often had to be admitted to hospital. High Bilirubin levels often leads to looking dark under the eyes.
Hope you are OK and your daughter and that you get some answers.

The OP actually asked what symptoms/problems it causes so had not apparently googled it.

Sometimes people come on here feeling panicked after an unexpected diagnosis and aren't thinking clearly enough to research it or are worried about getting misinformation from "Dr Google".

So I thought I would post a reliable source of information rather than leave her post with no replies. I think my post was far more useful and kind than your contribution to the thread.

I have a relative with this. It has never caused any issues for them apart from that their eyes look a little yellow.

I have it but wasn’t diagnosed until I was about 19 when I was extremely stressed and run down resulting in a blood test and overnight stay due to raised bilirubin levels. I’ve never had any issues, GP did request an ultrasound abdomen to get a baseline of my liver and all was fine but that was only about 2 years ago after a particularly bad sickness bug left me a little yellow!
my understanding is that it can be genetic and has no impact on your health. I always receive a phone call from the Gp after a blood test because the bilirubin is always raised but never any follow up needed.

As others have mentioned, I also just get yellow eyes when I’m run down/ unwell/ on certain medications.

Normal levels are 5.0 - 21.0. My last liver function test in December 2024 showed bilirubin was 29 and in Feb 2024 it was 33. In October 2023 it was 46.
All my other liver function bloods are normal.

I've got it. Diagnosed about age 15 I think.

My eyes get a little yellow when I'm unwell, but can't say it affects me.

Every now and then I'm reminded of it when I get a blood test and the doctor wonders why my bilirubin is up

My mum has it, but doesn't have many symptoms at all and she is 74.

<21 is within normal range. Mine is 31 and I have Gilbert’s.

Oh BTW OP, apparently it reduces your risk of certain heart diseases, so that's nice

I've got it and so has my son and my mum, and my best friend...I think it's common and of no consequence. Ours was only picked up through blood tests for other things.