Gilbert's syndrome

[Chroniclymphs]

Hello again all you lovely people....I posted here a few weeks ago re: my hubby Baz who has CLL and is on acalabrutinib for 2 years and feeling well. I joined to ask a question regarding his raised bilirubin levels which were at 66.......it was mentioned about Gilbert's syndrome which we had never heard of before. I did ask more indepth questions after info from 70s overlander and Aussie neil and a lovely lady from USA that did mention GS.....it is now suggested that Baz could have Gilbert's syndrome after more bloods his liver enzymes are all within range apart from his bilirubin which has dropped to 38....obvs they still monitoring him but GS looks the likely culprit his consultant has said. Thankyou for all your kind comments this is truly a lovely and helpful forum...Ju

[Indie1234]

Hi ChronicLymphs, thank you for your kind words. Just wanted you to know that my son was diagnosed with Gilbert’s Syndrome when he was a teenager.

Apart from really raised Bilirubin counts, it has not given him any problems.

If he’s having blood tests for anything, he just reminds the Drs that his Bilirubin will be elevated.

He is quite well, but until reading your post, I hadn’t met or heard of anyone with Gilbert’s.

Wishing your husband all the best with his treatment. 😊

[Kwenda]

There are a few people, who probably for genetic reasons, are unable to process spicy foods. This results in a high bilirubin level, and my case was inherited.

By completely removing spices and herbs from my diet I was able to bring my bilirubin level down to the low 20's.

That said, a higher than normal bilirubin level does provide some protection against cardiovascular and metabolic diseases.

Bilirubin levels can be regulated by diet, aerobic activity, natural compounds, and some medications.

Below is a link to a long technical article on this subject:-

pmc.ncbi.nlm.nih.gov/articl...

Dick

[BigfootT]

I have it. My bilirubin has been high for as long as I can remember. At least 40 years. Multiple doctors have attributed it to GS and said they do nothing about it. A doctor I saw recently at NIH for the CLL natural history study commented upon seeing my high number, "when there's no other reason for high bilirubin we say Gilbert's syndrome". Then she chuckled.It's never been an issue for me just a out of range number on a blood test.

Bigfoot

[Bobby9toes]

I am 77 with SLL. My blood tests have also shown high bilirubin. My doctors diagnosed me with Gilbert’s Syndrome as well. They have told me that my liver is fine and not to worry about. It has not caused me any problems.

[IRN83]

I was diagnosed with Gilberts Syndrome in 1975 and it isn't a big deal. I was granted a waver to fly in the USAF for 20 years. Yes my bilirubin is higher but it only varies slightly. I do get jaundice occasionally but no big deal. I have been on 5 different chemo drugs for CLL, in 6 different seasons starting in 2008 and the GS hasn't been an issue for me. I hope this helps

[Chroniclymphs]

Thankyou for all your responses and thankyou Indie1234 for highlighting it. GS was something new to us. As I said before this forum is so so helpful and informative. Best wishes to you all.....Ju