Just been told I have GS

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hi all

i have just been told I have gs, I had full blood works done all was normal apart from billruin, it was 34, what I don't understand is, I have had full bloods done in the past and all readings were normal, can it just elevate like this, I am 47

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  • Posted

    Hi Sue

    Gilbert Syndrome can be diagnosed at any age.

    I was diagnosed at age 30 (over 25 years ago).

    It's a good idea to have Full Liver Function tests every six months if you can.  Doctors don't very often do a 'Full Liver Function' test on patients, and it is only this test which will show your bilirubin levels.  That's why in the past your Doctor probably wasn't aware you had Gilberts Sydrome before. You can have blood tests at different times, and, unless your bilirubin levels are high in your body, it won't show as an elevated level in your system.  You might recall that you have felt extremely tired at times and felt like you had a virus with no other symptoms but extreme exhaustion; this would have been your bilirubin levels being high with your Gilberts Syndrome.

    You will likely find that after you have a virus, it may take a little longer than normal to fully recover from it; you will often suffer further exhaustion; don't be alarmed; just rest until you feel better and don't push yourself.  If you need to have any surgery, it's a good idea to tell the doctor and anaesthesist that you have Gilberts Syndrome as it puts a bit of a strain on your liver.  Most Doctors think that people with Gilbert Sydnrome are not affected at all; but they are quite wrong.

    As I said, after you recover from a virus, it will likely take you a little longer to recover.  You may notice just before you fully recover that the whites of your eyes have gone a tinge yellow; don't be alarmed as this is normal - it just means your excess bilirubin in your body has affected your liver and system, but it will recover. 

    Try not get too exhausted as this will affect your biliribun - likely increase your bilirubin level. 

    There isn't anything you can do and it's not life threatening; it's just a pain feeling exhausted at times for no aparent reason.

     

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    • Posted

      Thank you for your reply andree, I have not been feeling tired but I get quite light headed, I do alot of walking and I'm fine with that, I've never noticed any jaundice, just put this strange feeling down to peri menopause, I also take omesprazole and have read that this can increase your billruin levels, I'm seeing the nurse on Wednesday so I'm going to ask if I'm fine still taking the omesprazole, this as freaked me out quite a it, I've never heard of it and was panicking in case I had some sort of liver diease, all my other readings on the liver and blood cells were all normal and that's why she said I had gs.
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  • Posted

    A bilirubin level at 34 is really not very much.  For jaundice the figure is normally about plus 80..  For myself jaundice was not noticed until over 100.

    Also you have it appears only this one figure.?

    Thus it could be a laboratory error or just something you have eaten or a simple slight cold or flu.  

    What they really need to see for a Gilberts Syndrome is REPEATED testing and levels of over about 50..

    Also as you correctly point out many many other drugs, even headache pills, can cause a rise in the bilirubin level..

    I think that you need a longer time between tests and a lot more tests to be sure of Gilberts Syndrome..

    For myself I found that if I eat a spicy meal that my bilirubin level will go up and this is just due to the fact that the liver has to process all these spices.

    So I stopped the spicy foods and my bilirubin level dropped back to 25..

    We are all different, so drugs affect us differently and also foods affect us differently.  

    So ask about any drugs you are taking and perhaps play around with different diets.

    Dick

    PS  The good news about Gilberts Syndrome is that it has a beneficial effect on the heart.!!  Heart attacks for any one GS being extremely rare..( New Research )

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    • Posted

      Haha yes I read that about the heart, so there is a bright side 😄😄, I was just completely confused that all my liver function tests have had have always been normal readings, but I do have health anxiety so I worry that everything is bad...lol, I will explain all this to the nurse, so glad to hear that a billruin reading of 34 isn't high, thank you
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