Gilbert's syndrome?

Posted , 4 users are following.

Hello  everyone, 

Im new to all this so i am not sure if I'm in the right place but anyway here goes...

So I have been ill for about a year now, going back and forth to the hospital/ doctors trying to see what problem i have. I have been suffering from jaundice, severe fatigue, nausea, dizziness, brain/memory fog, cold hands and feet, ringing ears, and just feeling ill all the time. Ive been having blood tests every so often and showed that my bilirubin levels were high. The doctors didn't do much about it and put that down that i had ebv which is from glandular fever and it would soon pass. Well guess what it didn't. i had to miss around six months of school as i was so bad. i was constantly in bed sleeping, i hardly ate, i felt weak and just didn't want to do anything. My teachers probably thought i was lazy to come into school as they kept ringing me even though i explained the situation so i had to get my doctors to write a letter explaining everything. 

Cut long story short, this has been going on and off, and lately has been getting worse to the point it's affecting my everyday life again. I started a new college course hoping it would help  but my attendance is poor and im worried they will kick me out. Couple weeks ago i had another blood test. I finally found out i had this thing called gilbert's syndrome. Me being me I started searching what it is and how to treat it. I read that it usually has no symptoms or very mild ones which shouldn't affect your daily routine.  

so now I'm worried if it's not gilbert's syndrome (even though i had a blood test to confirm it) and could be something else, as some of the symptoms lead to other liver diseases. I'm also being currently referred to a gastroenterologist.

I just want to know if anyone else has experienced these symptoms and if so how to reduce them or how to deal with this. i feel very sad and lost and I'm worried about my futurecry

I appreciate all the advice and support.

Thanks

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  • Posted

    I am working through a diagnosis of Gilberts syndrome myself. From what I have read the symptoms vary so far and wide from patient to patient. Have you had a colonoscopy and endoscopy? I just had mine today actually to confirm or refute the diagnosis of GS. Fortunately, everything looked great and he took biopsies that we will go over when the results come back in a few weeks but he said he does suspect that it is Gilberts syndrome. This disease is not widely understood and there's no definitive test to really say that that's what it is it's basically diagnosed upon ruling out everything else. If you get a metabolic panel ran and your kidney, liver, and pancreatic functions are all normal and bilirubin is the only thing elevated, then it is safe to say that GS will be your diagnosis

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    • Posted

      Elizabeth, you don't need a colonoscopy or endoscopy to determine if you have Gilbert's syndrome. Both are not related to determining if you have Gilbert's syndrome.

      Yes, your right, we all seem to have very different symptoms with GS. The common ground is that the medical profession do not understand GS. They will tell you to have blood tests 6-12 mths. But really it's not necessary as you yourself know when your bilirubin is raised; even having a blood tests won't always show that your bilirubin is raised when you are suffering from elevated bilirubin; you & your body will know when it's elevated; a dr can't do anything for you during that time anyway

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  • Posted

    Hi LouLou,

    Sorry to hear of your struggle.

    Don't worry that you will be seeing a gastroenterologist; however, you will probably find they won't help you much. Even gastroenterologist s tend to think that Gilbert's Syndrome has little affect on your life. Most drs & specialists don't understand the condition.

    To me, it sounds like you have glandular fever or mono as they call it in some countries. My daughter was extremely ill in her final year of college & it took many visits to Drs before she was diagnosed with

    glandular fever. Then they said her blood tests showed she had ebv the previous year, which we hadn't known. Her symptoms were very similar to yours; complete exhaustion, cold hands & feet, extreme sensitivity to different scents & smells, brain fog, 24/7 nausea. Drs wrote letters to her College, but the College didn't understand the implications of glandular fever & kept telling us she had to sit for 3 hour exams & that, get this, that it wouldn't be fair to other students if she was to be given extra time in her exams; yet, a boy who had broken his collarbone early in the year & had been able to play football after that was given an extra hour in his exams.

    Try and rest as much as you can. Have more blood tests & ask them to look for glandular fever/mono.

    As for Gilbert's Syndrome, I've had it for years & have never met any dr or specialist who understands it; they all say it has no affect on your life. When you overdo things or after a virus, your bilirubin levels will increase, the whites of your eyes will go a tinge yellow after a few days. I know it's not always easy, but listen to your body & try & rest as much as u can whilst exhaustion sets in. Make sure you eat well & try to avoid too much alcohol.

    All the best.

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    • Posted

      You don't need the colonoscopy stuff but it eliminates the possibility of gallstones etc. GS is not harmful, but I have seen a lot of people have some pretty bad symptoms such as fatigue, brain fog etc. Hope you get some answers soon

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  • Posted

    Some of what you describe sounds like Gilberts disease, but your symptoms appear much more severe than usual.  You do not quote the figures for your bilirubin levels.??

    Like others have noted you clearly need to see a specialist and I would push the doctors a little to properly diagnose this..

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