Gilbert syndrome or something else?

[Tim2001]

Hello! I have both direct and indirect bilirubin elevated, and I’ve had my eyes yellowish for 5 months. My doctor told me it is Gilbert, but honestly I am scared that it could be something worse. I am 16 btw. I know I sound selfish but I am really anxious and I don’t feel good about my eyes, I feel like nobody will like them. It’s stupid but I don’t know what to do anymore. I would like to know if anyone here knows how to make my eyes whiter. I know I disn’t have any problems with my liver, but I would like to know if anyone thinks there could be a problem with my pancreas, I am really scared of that cause I’ve read a lot of things about pancreatic cancer. I will upload some photos. Thanks!

[AyrshireK]

Hi Tim, there is nothing wrong with your eyes. When you have got Gilbert's syndrome it can cause raised bilirubin which can cause jaundice, however, you don't generally have to lift your eyelids to see jaundice. The BLT have a page about Gilbert's Syndrome which might help you understand the condition better.

Don't go convincing yourself you have other issues.

britishlivertrust.org.uk/in...

BTW it's actually against forum rules to post photos.

Katie

[Tim2001 in reply to AyrshireK]

Oh I didn’t know that, cause I saw people posting. Thanks for the advice

[Hidden]

Good morning Tim2001,

As you are under 18, we are legally unable to comment on any of your queries.

I have included a link to the Childrens Liver Disease Foundation. (CLDF) for further support.

childliverdisease.org/

Take care,

Trust9

[Uplight99]

Nothing wrong with your eyes, I have the exact same and I think it’s actually quite common. Jaundice is where the whole white of the eye is yellow, as already stated you wouldn’t need to pull down your eye lid.

[Tim2001 in reply to Uplight99]

Thanks for the answer! Do you know anything that could help it?

[Uplight99 in reply to Tim2001]

Nope, go to your GP to get a expert opinion if you’re worried

[Tim2001 in reply to Uplight99]

I went to my gp and to the hospital too and I was told that it is Gilbert. But I wanna do something about my eyyyyyes

[Tim2001 in reply to Uplight99]

Also, did you get a genetic test for the diagnosis ?

[Dane1987]

Firstly this isn’t medical advice as some Doctors don’t agree or have never really went into depth.

They say it’s harmless but I have researched it for 2 years some variants of allele are proven to have a higher predisposed elevated Bilirubin.

Example would be Homozygous *28/28 Or also knows as 7/7 due to the repeaters. Identical mutated chromosomes. This is know to be predisposition of elevated bilirubin and a greater deficiency in enzyme UGT1A1

Then there’s added toxicity from toxins which are literally everywhere and any medication which use the same Deficient pathway enzyme UGT1A1 to detox.

This in a nutshell leads to toxicity and liver dysfunction, etrhepatic circulation takes the toxic compounds round and round causing more harm than good. Care must be taken when we get meds as this can become a trigger due to a lack of detox enzyme.

Misdiagnosis is common so a genetic test is the only Fairy certain way 99%.

Some don’t get any symptoms and some severe.

So many more factors and so many variables. Hugely complex and not fully understood. As it’s genetic we can’t cure it, so we have to learn to live with it.

Nutrition is our medicine, I personally get most benefit from sunshine.

[Kev4887]

Hii the eyes or the yellow you have in your eyes...I have the same problem. My liver bloodwork was completely normal, and ultrasound was normal to. NO not cancer before you start yapping because you are searching up in google. Every symptom leads to google assuming its cancer. I am scared that it is something worse but I would love to share some photos with you to get your opinion or anybody.

[AyrshireK in reply to Kev4887]

If your eyes are like the person's in the original post then they are normal - no problem at all. You don't need to pull back your eye lids to reveal the yellowing that is jaundice (it is totally obvious) - this creamy colour at the outer limits of the sclera of the eye is normal. If you have normal bloods then you don't have jaundice since it occurs due to an elevation of bilirubin in your blood.

Katie