Gilbert’s Syndrome!

[Hhhhhggggg]

Well after months of worry I’ve had confirmation that I carry the Gilbert’s syndrome gene. My US and MRCP was clear of any cirrhosis. They do want me to still have a fibroscan as some of my other levels were elevated, but at least I can hopefully put cirrhosis to bed now.

Feel like I’ve been given a second chance at life!

I have been drinking heavily on and off, so maybe it’s a sign to slow down!

[Hhhhhggggg]

Still very fatigued 🤔 I thought it was caused by my anxiety, but I’m still wiped out most days.

[Amethyst91]

I was wondering if you could explain your symptoms that led to this if you don’t mind? I’ve been getting tested for issues for a year and the only thing they want to label is Gilbert’s syndrome because o was positive on the genetic test but every time I bring up my symptoms they say that not Gilbert’s bit won’t give any suggestions either. My symptoms are :Fatigue, all over body itching, very light pale skin with a very mild almost unnoticeable tinge of yellow , also very mild in corners of eyes, IBS C, pale stools, URQ pains 24/7, some mild gastritis issues, pains in the upper back around shoulder blades with meals.

I’ve had biopsy showing bile pigment but normal liver which they said was the Gilbert’s, MRI & Ct showing enlarged liver but with Riedel’s lobe , so not clear if it’s normal or not. Ultrasound showing nothing, fibroscan 3.6kpa. Fibrosure blood tests showing nothing and autoimmune blood tests showing nothing.

Idk what’s going on but there’s definitely something and idk i can say Gilbert’s or not.

[Hhhhhggggg in reply to Amethyst91]

I was jaundice and also getting confused about stuff all the time. Still am! Got a fibroscan on Thursday so that will give me a better idea hopefully!

[Kyushu]

Hi did you find any useful ways to help support your symptoms? I just heard from my doctor yesterday that I have had mildly elevated bilirubin levels since 2015 so thinking I probably have Gilbert’s…I have also been consistently fatigued since that time but only recently had many of the other symptoms I’ve read which can be connected to Gilbert’s (which I suspect have been set off this year due to my liver really struggling to process the Pfizer vaccines!) … Lots of nausea, fatigue, confusion, abdo pains etc… can’t find any advice about things you can do or take to help…did you try liver supports like milk thistle at all?