Has anybody pushed for a second opinion?

Posted , 3 users are following.

Hi folks,

Just got some blood tests back that show the usual picture consistent with "Gilbert's Syndrome" (high unconjugated bilirubin, normal LFTs). I have a couple of other blood abnormalities too (slightly high rheumatoid factor, Creatine Kinase , and uric acid) but they don't seem to add up to anything.

I haven't felt quite right for about four years. Admittedly, it started with something that resembled a panic attack (after a viral infection), but has persisted since.

I have:

  • Very low tolerance to alcohol (if I have more than two or three pints in a night, which I sometimes do, I will get panicky and shaky the next day)
  • Poor tolerance to heat; sweating when I wouldn't have before
  • Chronic tiredness. Not of the kind that "knocks me out", but I never feel 100% rested.

Preexisting conditions are asthma and GERD, both of which I take medication for and which are well-managed (as far as I know).

I've had normal neurological tests and a normal abdominal ultrasound. I've seen a rheumatologist, gastroenterologist (although I don't think a good one), endocrinologist, and a neurologist.

No "unifying diagnosis" has ever been found beyond, although the endocrinologist did say she thought it possible that I had an Inborn Error of Metabolism (IEM) but couldn't pin it down to any one she was familiar with and said that genetic testing would not be financially feasible — or likely to yield any information that would help with diagnosis and treatment.

Does anybody else share a frustrating feeling that the doctors are missing out on something? I haven't done any real "investigating" beyond these blood tests in a couple of years, but the symptoms never seem to just "vanish" as I had always hoped they would.

Thank you in advance to anybody with information to share!

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  • Posted

    Hi,

    I have had most of the symptoms you have mentioned.

    Afew years ago i was told it was likely i had gilberts syndrome, after going to the doctors with hot flushes (at 28yrs old at the time) After a couple of blood tests my billirubin levels showed as high.

    Since then i have had blood tests for thyroid, and vitimin deficiency. I'm sick of having them to be honest , to be told everything is fine and be sent away.

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    • Posted

      Yup! I feel the exact same way. I only went in for these because I had a "new symptom" (nausea most mornings) that seemed to go away by itself — I reckon it was related to a bug. Unless there's something they're missing for us, my theory is that maybe there's more to Gilbert's Syndrome than doctors quite understand yet.

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  • Posted

    Sorry for you! Gilberts is v boring/dull-your symptoms sound typical. I have said here before, find a good liver book! Thats a really good place to start.

    Sadly things like alcohol may have to go, if only to see how you feel without it. For me, things like cinnamon, spices etc set me off so now its lots of fresh fruit/veg, filtered water, etc etc.

    GOOD LUCK!

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    • Posted

      Thanks. Even the stuff like tremors/shakiness? That's always seemed weirdly neurological to me. Yeah, I've been thinking about ditching the alcohol for ages. I work a lot of hours a the moment, drink a ton of coffee, and find it nice to have a beer after work every few days just to bring myself back down to earth, but I reckon that if I could find more balance/stability in my life, that I wouldn't miss it one bit. Have you found any supplements helpful or just the stuff that you mentioned? And any recommendations on "liver books"? I really know nothing on the subject.

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    We delete content if it doesn’t meet the requirements in our Terms & Conditions.

  • Posted

    eek. my comment was deleted prob because I said I read a book by xx on treating your own liver ...oops! shame they couldnt just bleep out the name!

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