Misdiagnosed with gilberts syndrome? Possible hep c!

Posted , 4 users are following.

Hello everyone! I wanted to share my experience to see if anyone here has been misdiagnosed with Gilbert's syndrome.

 I was diagnosed with gilberts syndrome when I was about 13. This was because our family doctor had discovered my mom had hepatitis C, and wanted to test the rest of the family for it. After he ran all the blood tests, the dr told me I didn't have hep c, but that I had Gilbert's syndrome, which was nothing to worry about. So I didn't think much of it till I got older. 

As a teenager I struggled with fatigue, brain fog, moodyness and depression. There were so many stresses in my life at the time, I didn't think much of Gilbert's syndrome. After reading up on it online I realized how many people diagnosed with Gilbert's syndrome have quite a few varied and miserable symptoms, so I did wonder why gilberts syndrome always gets dismissed. 

As the years passed, I saw several drs for many physical and mental ailments and basically everyone dismissed me or wrote me a prescription.  I lost faith in drs to make a long story short. It made me angry I had to deal with so many issues like fatigue, stomach problems, depression, my legs always swelling up with water, insomnia, not being able to think straight and everything else. I started taking Ritalin to pay attention, lithium or antidepressants for my moods and seroquel to sleep. That's how I've learned to deal with things. 

Anyway,  about a month ago I donated blood. I received a letter three weeks later stating that they could not use my blood donation because I tested positive for a hepatitis c antibody. Also I tested positive on the NAT test for hep C (Nucleicacid Amplication test). I am a little surprised at this. I saw my nurse practioner and she asked me many questions, ran many tests and wanted to know when and by whom I was diagnosed with gilberts syndrome and she wants to reevaluate my diagnosis! I am seeing a gastroenterologist next week and they'll tell me for sure if I have hep c or not. 

I don't know what to think. I feel saddened and confused by all this. Could my Gilbert's syndrome really be hep c?? Ive only read about this happening to one other person. That's a pretty serious mistake and I wonder if people frequently get written off as having Gilbert's syndrome without careful consideration. 

Has anyone else experienced anything similar?? Please share your experience. Thank you. 

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  • Posted

    I'm pretty sure there is now specific test to diagnose Gilberts (aside from just the high bilirubin level).  It might be possible that if you have Hep C that you also have Gilberts.  The symptoms you list seem consistent with Gilberts, although they may be similar in Hep C also if it relates to the liver not functioning well.  From what I hear I would avoid medications if possible as this is something that the liver has to work harder to process and then not perform so well, though it may be the lesser of 2 evils?  Many GP's seem to dismiss the effects of Gilberts which can create more anguish for the sufferers.

    Good luck with your testing.

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  • Posted

    I also have Gilbert’s disease formerly called Rotor Syndrome. I was also diagnosed when I was 12. I am now 68. I just got tested positive for Hep C.  I have never done drugs, got tattoos and my only sexual encounter has been with my husband. I have also been referred to a gastroenterologist and couldn’t get an appointment until Nov. 17. I am very interested in what the outcome of your diagnosis was. Please get back to me on this ASAP. Thank you. Hope you are doing well.

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    • Posted

      Hi Cinj, sorry I haven't signed in for a while. I've been pretty busy. What's new is that I definitely have hepatitis C and I contracted it at birth frrom my mother. So the drs misdiagnosed me with gilbert's syndrome - at least I'm supposing they did. I'm guessing my billirubin level was high and the rest of my bloodwork looked good, so they just figured I had gilbert's syndrome. I think someone mentioned there is a genetic test for gilberts now but I don't think there was back then.

      Anyway, when I saw a gastroenterologist about a month ago, they gave me a test to see which genotype I have (1a) and another test to determine my viral load (about 5 million). After that I had to do more bloodwork to make sure I had a hep b antibody and things. Then my gastro dr filed a request with my insurance company to get me Harvoni. It took maybe 2-3 weeks and 2 rejections from my insurance company (Bluecross Blueshield of Louisiana) but my dr dealt with all that, thank goodness. A specialty pharmacy contacted me that works with my health insurance company and they send me the Harvoni via UPS. Today I am taking my second pill. I feel so grateful to have received this lifesaving medicine with few side effects.

      I'm still surprised and a little annoyed I had hep c and was even specifically tested for it as a child and was misdiagnosed with gilberts syndrome. But testing and research has grown by leaps and bounds the past few decades so I'm grateful to have good medicine now.

      Cinj - did you ever receive a blood transfusion? I think that's how my mom got hep c. I hope you get Harvoni or a similar good medicine. My insurance covered $2,000 of the cost of the Harvoni and I just signed up and printed out a Harvoni coupon from the manufacturer of it Gilead Sciences. So I only pay $5 a month for it.

      It's hard to be patient through this process and everything seems to take forever but I hope you will have patience and faith till you get the Harvoni/get cured.

      The best of luck to you! Please tell me how everything goes.

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    • Posted

      Thanks so much for your reply. I’m glad you got help. I have not had a blood transfusion. I taught school in inner city Chicago for 20 years and in other places pryer to that. I handled a lot of kids’ blood without gloves but that just seems rather bizarre. I am not feeling sick at all. My sisters and brother have all been diagnosed with Rotor Syndrome which I realize now, although similar, is not the same as Gilberts. I won’t know anything until November 17.  I totally know what you’re going through. I’m so upset about this. I’m pretty certain my mother did not have hep C.  I really am at a loss as to how I contracted this. I’m 68 years old and I have dealt with a high bilirubin levels for 56 years. My little sister has had levels as high as 11 when she was pregnant. She is a PA in Indy and is more jaundiced than me. She obviously was tested for Hep C because of her career and is ok. I just find this whole thing mysterious. It just doesn’t make sense. I so appreciate you contacting me and am grateful you have received help. 
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    • Posted


      Those circumstances do sound mysterious. I'm not sure what the difference is between Rotor syndrome and Gilberts. It sounds like the coagulated bilirubin in Rotors is double that of the uncoagulated bilirubin and both are elevated? In gilberts there isn't a relationship between the amount of coagulated and uncoagulated bilirubin, billirubin is just elevated, I think.

      That is a mystery about you could have aquired the hep C. A blood spatter with one of your students that got in your eye or something? Many folks with hep c don't know how they got it.

      November 17th seems like a long time to wait. I hope the time will pass quickly! At least you don't feel ill. It's comforting to know I'm not alone in this odd situation. One day we'll probably read about folks like us in medical journals who had hep c but were misdiagnosed as having more benign conditions. Hopefully this won't happen to as many people in the future.

      Please keep me updated on how everything goes and thank you for replying. smile

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