Hi all- I'm new to this forum.
I have had health issues since I was 21 (13 years now).
(I have been diagnosed many times with \"chronic fatigue syndrome\"
All my liver function test have shown elevated bilirubin and it has been confirmed I have Gilbert's.
My main symptoms (amongst a whole host) are exhaustion, gastrointestinal trouble (bloating and very slow digestion), temperature dysregulation, and neurological symptoms like brain fog, forgetfulness, inability to concentrate and disturbed mood.
Anyway, I've noticed a lot of people in posts are focussed on the elevated bilirubin.
Having done a lot of reading and research over the past few months, it seems the bilirubin is probably not the issue- it's just the marker by which the condition is identified.
The literature explains that GS sufferers are deficient in the enzyme UGT 1A1, which processes bilirubin. The lack of this enzyme leads to the elevated levels of bilirubin, as it's not being processe dfast enough.
However, the most recent literature points out that most (maybe 85-90%) of GS sufferers are also deficient in a closely related enzyme, UGT 1A6, which processes a range of endogenous (eg hormones/neurotransmitters) and exogenous (eg drugs) substances. It is this which, in all likelihood, causes the symptoms, rather than the birubin, which might just be responsible for the jaundice.
IE- the elevated bilirubin is the marker, but there's a whole lot more going on for a lot of GS sufferers.
This is also why doctors strill don't take it seriously. Their understanding of GS is that it is just \"elevated bilirubin\".
Also- not all sufferers are symptomatic- it seems there is a spectrum of severity, depending on genetic variables.
So- the only way to get doctors to listen is to collect the recent scholarly literature on this subject and present it to them.
All the symptoms on the websites and forums are useful as secondary information, but it is only peer-reviewed articles that will actually get you anywhere with doctors......assuming you mcan find one who can supress his/her ego for long enough to actually listen to what you are saying.