Doctor being very unhelpful, what do I do?

I posted this as a reply just before but thought I'd make a new post.

I went to the doctor with no idea what was wrong having cramps in my abdomen that stopped me standing, feverish feelings, retching, bloating, dizziness, and exhaustion, not eating and when I do not eating much, and very frequently feeling ill. Had had the problems for five years but my mum told me they were just hormonal and not to worry so I ignored it for ages. I go see the doctor and she's talking about bowel conditions and asks me to get a blood test to see if I have anything other than IBS. She said she would message when she had the results but five weeks later after three episodes I got sick of waiting and called in. A nurse tells me on the phone that I have gilbert's syndrome and that is is minor and non-harmful and that my bilirubin count is only 21 so they are not worried, and that is the end of it. No follow up, no real explanation, no solution. So I find out on here that all of these issues have been commonly reported by people with gilbert's syndrome, but have no idea how to deal with them as they are affecting my schooling and trail running I recently took up and being quiet a nuisance in general. If I go back to see my doctor because I live in New Zealand it will cost me $45nzd just to see her, and there is a very real chance she will not be able to help me. I'm really at a bit of a loose end.

7 Replies

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  • Hi Charlie, I'm sorry your doctor hasn't been much help.

    My knowledge is small with Gilbert's. But I do think it's genetic so does anyone in your family have it??

    I don't think that there is much they can do with Gilbert's. But according to our NHS website there is a trigger that causes these episodes of sickness etc. So you need to try and work out what the trigger is.

    I hope you get more help

    Carla x

  • Hi Charlie,sorry to read you're suffering so much. My sister has Gilbert syndrome. She has to avoid anything too fatty and rest when she feels ill. I have cousins with it too. She has been living a full and happy life, she's Sixty soon. Maybe someone on the site can give you more up to date information. Sam xx

  • Hi Charlie,

    You may find The British Liver Trust publication on Gilberts disease useful to look at;

    britishlivertrust.org.uk/wp...

    Can your doctor refer you to a liver specialist for more guidance, explanation and investigations?

    Best wishes,

    Rebecca

  • Hi Charlie, so sorry to hear how much you are suffering; I have a friend who was diagnosed with Gilbert's syndrome 5 years ago , she is still the same; regarding her sleepiness but is on meds, unfortunately this has now gone to cirrhosis.. What I'm am aware of it's to do with copper and toxicity. As Rebecca said I would see your Dr and ask for regular follow ups with a liver consultant 😊 don't worry though you will be ok

  • Hi Millie09,

    I think your friend may have been diagnosed with Wilson's disease? Wilson’s disease is a disorder in which you have a higher than normal amount of copper in your body.

    Gilbert’s syndrome (GS) is a condition in which you have higher than normal amounts of bilirubin in your blood.

    Best wishes,

    Rebecca

  • Oh yeah! Sorry about the mix up Rebecca. My apologies if I caused any confusion. Regards Linda

  • Hi my partner was diagnosed with GS 18 years ago, he has never had treatment and when I saw my hepatologist's and asked him about it he said its just an idiosyncrasie of some people, on further investigation I personally didn't find any trustworthy info that shows it to be life endangering or that it could turn to cirosis without other outside factor to send it that way, they are not one or the same illnesses.

    He does watch his fat and spice intake though as this can cause bowel and stomach problems

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