Conjugated bilirubin in GS

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My bilirubin has been up for six months and the doctor claims I have GS. The unconjugated bilirubin has been around 40-50umol/l ja conjugated 12-17umol/l. The amount of conjugated has been constantly 20-23% out of total bilirubin.

I've spent hours and hours trying find GS cases with a ratio >20% but haven't found any. So please, you who have the diagnosis, is it possible to have a ratio over 20% conjugated and still have GS?

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3 Replies

  • Posted

    Hi Mansson, I've conjugated bilirubin around 40%. My doctor (GP) thinks when the total bilirubin is high the measurement method they use isn't precise enough to measure conjugated bilirubin. I argued for a while so he referred me to liver specialist who confirmed that I have GS.

    I am still not sure about this. When I can afford I like to do a genetic testing some day. Good luck with GS diagnosis! And please post when you make a progress.

  • Posted

    Hi Mansson

    It is possible - i have permanent 22 to 25% conjugated bilirubin levels, and total always almost twice above average, I've done all the blood tests every week for months and even SWE elastography and MRI with contrast to be sure, that there's nothing more serious going on. I've found one clinical case some time ago of an iranian boy who have the same problem smile Do you have some other symptoms besides high bilirubin? My GS showed up quite late, at the age of 32. I have burning pains under my right rib, radiating to the back, depression periods, exscessive sweatings, tiredness that lasts for week or even longer.

    • Posted

      Thanks for the excellent answer! I'm 39 and the symptoms started just this year and as far as I know, the GS should show up already at young age. In my understanding GS is kind of a generic labeling since many people have high bilirubin without the GS gene.

      > I have burning pains under my right rib, radiating to the back, depression periods, exscessive sweatings, tiredness that lasts for week or even longer.

      Those are pretty much exactly the symptoms I have. Though I didn't/don't link the tiredness or melancholy physically to the disease but rather see it as a psychological side effect (e.g. my EEG based sleep monitor shows the deep sleep being shorter than normally which is caused by the stress hormones). Also, after reading hundreds of posts about liver problems, I've come to the conclusion that all of the symptoms are linked to 'a problem originated from the liver' but don't necessary relate to the severity of the disease.

      In any case, it's a huge relief that someone else has something similar because my doctor refuses to any further tests. Thanks!

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