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Bilirubin not the problem for symptomatic GS sufferers

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Guest

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\"wink

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.

5 likes, 10 replies

10 Replies

  • andrew_speed
    andrew_speed

    Posted

    hi hope things are going ok . i would like to say that,chronic fatigue ,jaundice are also some of the symptoms, of Haemochromatosis (iron overload) HFE Gene, and as like you say doctors do not understand it fully.
  • dazzammm
    dazzammm

    Posted

    I fully agree. I think the diagnosis of GS is lazy. The doctors are saying high bilirubin, therefore, GS, therefore, its benign.

    if you have a cold you can have a headache but does that mean if you have a headache then you MUST have a cold.

    High bilirubin is masking something else. there are too many of us with fatigue sysmtoms to say its benign.

  • Matthew
    Matthew

    Posted

    I was diagnosed with GS when i was 16 now i'm 23 and for me the main if only symptom has been a very raised bilirubin causing me to be noticably jaundiced nearly all the time so for me GS has caused me great psychological problems having to deal with looking yellow all the time to the point i've suffered depression and havent been able to face situations where it could be noticed or questioned. i guess i wish there was more emphasis on how the noticable jaundice might make a person feel rather than just getting fobbed off with "its just Gs" with no further help or advice.
  • Gill_Bird
    Gill_Bird

    Posted

    A raw vegan diet has really helped me. I am 41 and only found out I had Gilbert's last week. I've been raw vegan for ten years and my body just thrives on it. I started on the diet cause I felt slightly low energy. I've been vegetarian since age 16, so I never had any negative physical effects from Gilberts- because I'm really good at avoiding triggers. Totally avoid all drugs, alcohol & smoke. The only thing is, I can't really hold a full time job (not that I wanted one :P) because I have to eat small meals throughout the day and it takes a long time to make all this raw vegan food I eat. I was working from home but it's really boring me. I used to have three part time jobs with breaks in between, that worked, but some other stuff happened (accidental head injury) and I lost two of my jobs; now I'm having trouble finding the right jobs to keep me solvent again. It is tricky finding a balance with this syndrome.
  • Caketin96
    Caketin96

    Posted

    Hiya, I was considered to have gilberts syndrome at 11, but was not properly diagnose until I was 15, and spent numerous months in hospital. I was having terrible issues with tummy pains. The doctors did numerous blood tests and found I had GS, but kinda said it wouldnt cause any symptoms.....erm wrong! I always feel nauseas and suffer with eating problems because of this, I am very underweight and believe it is all to do with my digestion :L I find it difficult when I get jaundice, which is very often, and has caused me to have depression. Im always tired, can't concentrate, get headaches all the time, my body doesn't deal with medical drugs very well too. So pain is a big issue for me. I feel like the doctors just say, you have this, theres nothing to do and don't care about us. When in actual fact GS sufferers have prove its not NOTHING!
  • crel57
    crel57

    Posted

    Hello all. I was diagnosed with Gilbert's almost 20 years ago...So many of the above symptoms are so familiar sad

    However, I was diagnosed with a non-functioning gallbladder last year after a HIDA scan after numerous ultra sound scans showing no gallstones. Just wondered if non-functioning gallbladder could be real cause of illness for some people with high GS?

    Best wishes,

    Dave

  • jem23054
    jem23054

    Posted

    Most helpful! Interested particularly in your comment on neurotransmitters - this explained why my son had anxiety, insomnia, fogginess in his mind, and depression. This has happened three times now. We got in touch with a GP who has also become a herbalist and without sharing your comments, wanted to treat his liver. I then shared your information which she was very much in agreement with. I am interested in the research that has been done as I would like to present that to our doctor too - any links would be appreciated. My son had an accident just a couple of months ago and had 3 weeks of heavy pain killers - I think this has added to his problems now.
  • Rondelle7
    Rondelle7 Guest

    Posted

    Thanks for your input!

    Do GS sufferers also have thyroid or pituitary issues?

  • phenomaman
    phenomaman Guest

    Posted

    Hi have you made anymore developements on this?

    You main symptoms are almost identical to mine except I also get raging nights sweats and hot flashes during the day (I'm male) with extreme sweating.

    I just found out I have Gilberts after 10 years of experiencing these symptoms.

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