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Misdiagnosed with gilberts syndrome? Possible hep c!

Posted , 7 users are following.

Cupiddelocke
Cupiddelocke

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. 

0 likes, 8 replies

8 Replies

  • jasond
    jasond Cupiddelocke

    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.

    • Cinj
      Cinj jasond

      Posted

      Could Gilbert’s syndrome affect the outcome of the hep c test?
  • Cinj
    Cinj Cupiddelocke

    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.

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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    • Cupiddelocke
      Cupiddelocke Cinj

      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.

    • Cinj
      Cinj Cupiddelocke

      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. 
    • Cupiddelocke
      Cupiddelocke Cinj

      Posted

      Cinj,

      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

  • NOTBENIGN
    NOTBENIGN Cupiddelocke

    Posted

    Hello cuppidelo...

    My friend, you may have tested positive for Hep C antibodies but let me tell you right now, you have every classic symptoms of GILBERT SYNDROME!

    And no....its definately NOT Benign.

    And there are now identified 113 variations and rising.

    I wish I could tell you that the latest genetic research on Gilbert Syndrome is complete and a cure is HERE. But sadly...this disease is the most ignored most neglected and the most profitable for the Industrial Medical Complex. I am sixty years old and have suffered since childhood. Doctors made it worse by taking out Gall Bladder. Dont EVER let them take out your Gall Bladder!

    If you have Gilbert Syndrome...you simply CANNOT EVER TRUST Doctors. I have seen a lifetime of doctors...been to ERS 253 times! Doctors screwed up BOTH parents with drugs....Gilbert Syndrome people have catastrophic reactions to certain drugs...and depending on your variants...you wont know what those are WITHOUT genetic assay. Good Luck finding a genetics practice that will do it since medical profession insists its benign. High billirubin levels old diagnosis. New genetic testing can confirm Gilbert Syndrome...THIS test my be done but must find compliant doctor first...to order it. Rare. You will have better luck if once you understand. YOU ARE ON YOUR OWN. Doctors will only F you up more and DO NOTHING to help you with Gilbert Syndrome. Interestingly enough, Gilbert Syndrome is found on Chromosone 2....and all mutations and cohorts...remember there are currently 113 variations so not every single Gilbert Syndrome patient will have EXACTLY same symptoms but some will have the basic ones you describe more than others. Some may have none. There are also variations based on your genotype/ your gender...women can have it worse because of Estrogen. Chromosone 2 is a fused Chromosone. Apes have 24 Chromosones. We have 23 because Chromosone 2 is the one that was fused together with another one. Fusion of Chromosomes does not happen by accident. This may be due to Neanderthal Genes or also Dennisovan genes....and your genetic halotype. Diet can play a role. Lifestyle. Stress. Alcohol. Drugs...recreational as well as prescription. There is a nutritionist in Australia....I just discovered this evening who has written the best MEDICAL explanation of GILBERT Syndrome I have ever read. I will try to send link in next message.... But likeky I wont get back in here. Her name is Maria and its a Nutritional Practice in Austrailia. Perhaps your young enough that one day you'll see a cure. It will cone via genetics. Read everything you can on genetic research on Gilbert Syndrome and one call Crigler NajjarSyndrome 1 (not 2 There seems to be a possibility both are related in genetic studies. Doctors are totally ignorant of fast expanding genetic research. NEVER EVER TRUST ANY DOCTOR if YOU HAVE GILBERT SYNDROME. Trust me. Save yourself a lifetime of frustration and pain. You must be your own doctor...otherwise they'll send you on a merrygoround of specialists and try to stick scopes up your ass ...down your throat...put you on countless meds that do nothing but add to your liver load and make it worse...and they'll make a fortune doing it. So please, understand ...if you have this disorder...its permanent...but you can find ways to deal with it through diet and lifestyle choices. The one drug that is my miracle drug is 7.5 milligrams of Prednisone. Not all GILBERT Patients respond in same way to drugs....and doctors won't prescrib Prednisone for Gilbert Syndrome even though there is clinical evidence it DOES impact billirubin transport via the liver.

    Anyhow...look up GILBERT Syndrome online....use various keywords...genetics....nutrition ....and there's a U.K. website page that has tons of info...if you can find it.....I cant always find it....which is odd...here in U.S., one might almost think there is some conspiracy afoot to keep people from knowing about the truth of this disease considering the abundant clinical genetic and antecdotal information which includes the SAME basic symptoms...a good majority of them you have described. Lastly, when you describe your symptoms and they tell you its " all in your head"....or its "benign"....run do not walk out of that doctors office. RUN for your life...and your health.

    Good Luck to you, Cuppidelo!

  • Copper-enjoyer
    Copper-enjoyer Cupiddelocke

    Posted

    Lithium and antidepressants is a 100% way to lose control over your sanity in long term. What you should do is to take blood analysis on vitamins and metals. If you have deficiency just correct them. Focus on copper (i suspect that is the main cause of your mental problems). Vitamin D will give you good mood, but you should take it only after blood analysis. And you have to take a lot of Magnesium if you drink a lot of water. If something of what i wrote here will help you - dont ever come back to doctors (only in case you will need physical surgery) and just take supplements

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