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Gilberts Sydrome and increased bilirubin. Do you have it?

Discussion in 'Gastrointestinal and Urinary' started by SaveMe, Apr 6, 2011.

  1. SaveMe

    SaveMe *****

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    Today I discovered a site http://www.gilbertssyndrome.com that states "People with GS are four times more likely to have Chronic Fatigue Syndrome than others."

    Whenever your doc does a CBC, is your bilirubin always a little elevated?


    Mine sure is. :)
  2. Countrygirl

    Countrygirl Senior Member

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    Gilbert's syndrome is, according to Dr Charles Shepherd, associated with ME. Some years ago, he wrote that 16% of people with ME have Gilbert's................I have been diagnosed with it. It is usually considered to be benign, but can cause chronic fatigue, chronic low grade jaundice and an impaired immune response. Someone with Gilbert's takes longer than normal to recover from infections.

    C.G.
  3. rwac

    rwac Senior Member

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    Yeah, I have the genetic markers for it. The thing about Gilbert's is that it's a problem with the detox pathway.
    I wonder if other symptoms can show up without increased bilirubin. I have a old test with normal bilirubin but it was from before I was ill.
  4. faith.hope.love

    faith.hope.love Senior Member

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    Yes, I have that too. Very few people know what I'm talking about, so I never even mention it to my doctors!
  5. SaveMe

    SaveMe *****

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    So whenever they run a liver panel on you, those bilirubin markers come back elevated? How long have you noticed this?

    My doctor knew this after taking more than one blood test.
  6. faith.hope.love

    faith.hope.love Senior Member

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    Yes, they're always high. My doctor first mentioned Gilbert's in 2004. It's never been an issue since it's a benign condition. It definitely has not caused an impaired immune response in me. My immune system is very overactive, it's TOO strong. Sometimes I have to take steroids to suppress it. I can't remember the last time I had a cold or flu, and I work as an RN with sick people coughing in my face nearly every day. :)
  7. Snow Leopard

    Snow Leopard Senior Member

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    Yes, my Bilirubin levels are consistently high too. In general, it suggests decreased liver functioning.
  8. Patrick*

    Patrick* Formerly PWCalvin

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    Me too. I've always had Gilbert's Syndrome. My bilirubin levels are typically at about 1.8mg/dL, whereas the normal range is 0.2-1.2. But my doctors always told me this was an insignificant finding, and that Gilbert's Syndrome doesn't cause any problems. Really? I thought, "then why is there a "normal" range for bilirubin, and why are people who exceed that range deemed to have a Syndrome?"
  9. taniaaust1

    taniaaust1 Senior Member

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    I personally think that many so called "insignificant findings" may be quite significant for us. I myself have a abnormality which is normally a insignificant one (hyperinsulinemia), but for me its quite a major thing as in my case it does cause me symptoms, sometimes quite severe ones.

    I suggest everyone who finds something abnormal in their test results to research it, to MAKE SURE it isnt giving you any symptoms or making the ones you have worst. Experiement with correcting any abnormalities you have if possible, to see if that improves things at all. There is much the medical profession in general doesnt know.
  10. sianrecovery

    sianrecovery Senior Member

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    interesting, mine is elavated too, especially after I've 'fought something off'.
  11. richvank

    richvank Senior Member

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    Hi, all.

    I have a mild case of Gilbert's syndrome, too. There are quite a few variants that are not very serious, but some homozygous mutations in the enzyme UGT1A1 can produce jaundice, as well as sensitivity to certain drugs, which are also normally detoxed by the glucuronidation pathway. But the cool thing about Gilbert's syndrome is that it has been found to provide protection against coronary artery disease. It is thought that this is due to bilirubin acting as an antioxidant.

    Best regards,

    Rich
  12. rlc

    rlc Senior Member

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    Hi all with elevated bilirubin, doctors tend to get into the habit of telling everyone with elevated bilrubin that they have gilberts syndrome, because it is very common, but it is not always the cause, increased bilirubin is listed as being caused by 221 different illnesses, see http://en.diagnosispro.com/differen...irubin-serum-lab-increased/11957-154-170.html

    Of these, 38 of the illnesses that cause increased bilirubin also cause chronic fatigue, see http://en.diagnosispro.com/differen...ased-chronic-fatigue/11957_25271-154_154.html

    This list includes a lot of illnesses that are frequently misdiagnosed as CFS such as Hemochromatosis, hep C, Hypothyroidism, Shistosomiasis (Tropical disease that causes similar symptoms to ME) Pernicious anaemia (B12 Deficiency)

    So its important to make sure that your doctor has ruled out all the other conditions and isnt just handing out an easy diagnosis, for some people the increased bilirubin may turn out to be the clue that is needed to find the missed diagnosis.

    All the best
    Snow Leopard likes this.
  13. Snow Leopard

    Snow Leopard Senior Member

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    Thank you rlc. It is disappointing that most GPs don't investigate the Bilirubin aspect further.
  14. rlc

    rlc Senior Member

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    Hi Snow leopard, yeah its very disappointing when high bilirubin is known to be caused by so many illnesses, some of them potentially fatal, it just seems to be the way of the world at the moment, GPs seem to be only interested in rushing all their patients through really quickly and giving them any diagnosis that seems remotely plausible, and saving money by not testing people.

    Its not just happening to ME patients, I know of so many people who have had the correct diagnosis missed due to this kind of sloppy doctoring, it really is very scary!!!

    All the best
  15. fablepd

    fablepd

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    Hello to everybody from Italy. Just to know if anyone of you have high bilirubin (both direct and indirect, while the Gilbert only should have a slight indirect increase) with all enzymes (as ALT, GGT, etc.) within normal range.
    I suffer from chronic fatigue (after a strong mononucleosis in 1998) and need for a restorative nap at midday (but cannot do that due to work time) and the only values out of range are bilirubin and CD4, CD8, CD19 ... CD4/CD8 ratio is 1 , while it should be in the range 1.5-2.5 . Any idea ?
    All the best.

    Fabio
  16. Valentijn

    Valentijn Activity Level: 3

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    Needing to lie down in the middle of the day might indicate that you have orthostatic intolerance. It usually involves blood pressure and/or pulse pressure getting low, which can be checked with a blood pressure monitor. If that is the problem, then sitting with your feet up all day can help, or other techniques and medications. Doctors can diagnose and treat it.
  17. fablepd

    fablepd

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    Usually my pulse pressure is OK, when checked it was in the medium of the range. Do you mean i should do a all-day pressure measurement ? Thank you for your suggestion, i'll talk with the doctor about it. The fact is that i need to sleep, even if for less than an hour, not only to lie down....

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