Liver biopsy results/ Gilbert’s Syndrome?

[Amethyst91]

Just an update for anyone following my posts. I went in for my biopsy on January 25th and it went well. I’m still a little sore but no complications and back at working doing well. I have not actually seen my dr yet to go over my results but he did send me an email stating the results came back normal. He said no , no inflammation, no scar tissue only positive for Gilbert’s Syndrome. I’m obviously relieved to hear this but I still have so many questions. I want this to be the end of my crazy journey but I still don’t understand how I have so much pain and how much liver is still measuring 20.5 cm. I know enlarged liver is a symptom of disease so I’m still worried as to what’s going on. I still get rapid heart rate and now the same UPQ pains are on the left side. I have seen a post about how some ppl with Gilbert’s syndrome have many symptoms of liver disease without having an actual liver disease. If anyone has any experience with any of this some input would be nice but I will still be asking a lot when I see my dr later this month.

[Yarkis]

That's good news! I'm glad you're doing well :). As a bonus, I read that people with gilbert's disease have a drastically lower chance of coronary artery disease. Hopefully the liver size is just an anatomical variation. Tho 20cm does sounds well out of the normal range, plenty of people are just born with big body parts. Take Jay Leno's chin for instance. Thing could serve as a half pipe for the summer Olympics 😜.

[gnillo]

Hi Amethyst91 , I was diagnosed with Gilbert’s in December of 2020 and gene test confirmed it a few weeks later. I can relate to RUQ pain and was also diagnosed with fatty liver disease. After I quit drinking, started eating healthier and taking a light stroll daily my pain has gone away. It was almost like I started getting symptoms over night. I used to eat steak a few times a week and now I can’t tolerate it. I should mention that a few weeks prior to the ER I was prescribed a medication for UTI but was later told by my hepatologist to never take the med again as it was shown to cause acute liver failure. Since then my body and symptoms have changed a lot. Not saying it was caused by the medication but some research will show that it has shown to jump start autoimmune hepatitis. 🤷🏾‍♂️ Every doc that I have been to say it’s a benign condition but I feel differently. Especially as I’ve joined a group on FB for people who also have GS and share a lot of the same symptoms. For one I will tell u that I am sensitive to certain foods like gluten and high fats, red meat and it takes me a while to metabolize certain medications. If I am under a lot of stress, sick or not well rested my unconjugated bilirubin will increase (LFT’s) confirmed this and I become jaundice. In November my total bilirubin was 5.8 but unconjugated was 4.8 and I was definitely yellow. That’s why I went to the ER thinking my liver was failing. It’s all new to me still and I’m figuring things out. I try and stay hydrated as well all throughout the day. Good luck and feel free to reach out anytime. 😊

[Amethyst91 in reply to gnillo]

Thank you. This time they found no fat or anything so I’m a bit surprised, I read some GS conditions can cause an enlarged liver but it doesn’t say if it’s damaging or not. Hopefully I’ll get answers when I get to talk with my dr soon.

[gnillo in reply to Amethyst91]

Looks like ur moving in the right direction. I have a followup in a few weeks so I’m hoping to have lost the fat as well. Keep me posted, curious as to what they say about ur enlarged liver.

[Laura009 in reply to Amethyst91]

If you go onto the Gilbert's Syndrome NHS website l am sure you will find all the correct info you will ever need.Pleased all your tests were normal. Very reassuring !