Diagnosed with Gilbert's Syndrome and a Fatty Liver

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Hi All,

Just looking to see if anyone has the same diagnosis as me. Beginning of this year I started having right upper quadrant discomfort under my right rib cage. My bloods showed mildly elevated bilirubin and an ultrasound that was consistent with fatty liver (I am overweight but have lost 13 kg since January and all of my liver enzymes are back in normal range except bilirubin)

Fast forward to today all are normal except bilirubin whcih is always between 29 - 31 umol. My consultant then did a further test to breakdown my total bilirubin to under the indirect (unconjugated) amount. Because this was greater than 70% (it was around 77% of the total bilirubin) he stated confidently that he believes I have Gilberts Sysndrome.

What tests have others had to diagnose this?

Has anyone also got a fatty liver aswell?

I still have this discomfort on my right hand side by ribs, does anyone else get this?



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3 Replies

  • Posted

    • breakdown my total bilirubin to understand
  • Posted

    Callum, I have gone through similar episodes as you have experienced: Upper right side abdomen discomfort and slightly higher bilirubin test results. My primary care provider (PCP) indicated It probably was that I was somewhat overweight and needed to be on a healthier diet after I was finally diagnosed with a fatty liver. However, if not monitored properly, a fatty liver can lead to cirroshosis of the liver. I lost some weight and reduced my intake of sugars, sodium and especially fats. My bilirubin stabilized, but at times would still be elevated. My PCP would examine my abdomen and said I would be ok. My PCP left and another one took over. The new PCP was the one who mentioned to me for the first time the medical term Gilbert's Syndrome: That some people apparently due to their heredity background have this syndrome, which is primarily some fat in their liver and not fibrous tissue which can lead to cirroshosis. Lucky for me a clinical trials fatty liver test opened up and I qualified to be screened. I was given a liver fibrous scan and it was negative. It meant my liver had some fats and thanks to GOD Almighty, no fibrous tissue. In fact, the doctor who reviewed the scan results said I probably had what is Gilbert's Syndrome. He said only a biopsy could determine if there was any fibrous tissue, but the doctor said in my case a biopsy was not needed! Needless to say, I did not qualify for the clinical trials test program. But most important, it seems I do not have fibrous tissue in my liver. Although my bilirubin results today go up and down, my staying away from lots of sugars, sodium and especially fats coupled with daily walks, weight loss and drinking lots of water. I am not a doctor, but I would say to anyone with diagnosed fatty liver to check with their medical provider to see whether their fatty liver is just fats, i.e., Gilbert's Syndrome, or if it has fibrous tissue, which is something to monitor very carefully. Hope my story helps you, Your health is in your hands. Best of success .,.....,

  • Posted

    Yes, I've had GS forever (it's a genetic condition after all), and a few years ago I was diagnosed with fatty liver disease. I also had my gallbladder removed because gallstones had become painful. These kinds of liver problems are both higher probabilities for GSers than for the "average" population.

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