1. Community
  2. Liver and gallbladder
  3. Gilberts Syndrome

What did you say to your doctor when asking more about Gilbert's? (I'm already diagnosed)

Posted , 3 users are following.

Bee87
Bee87

I was diagnosed around 7 years ago, Gilbert's syndrome showed up in a random blood test after I was having problems with constant mouth ulcers, feeling run down and always having thrush/cystitis. They basically said heres a leaflet it's nothing to worry about. (Didn't ever get to the bottom of the ulcers etc but I reckon I was probably just run down..)

I've never spoken to my doctor about or mentioned Gilbert's although when I've been for any reason like stomach problems, feeling run down, odd aches and pains etc I've had blood tests for thyroid and other things, and scans, all show nothing. 

I get the typical symptoms fatigue, tiredness, nausea, loss of appetite, brain fog, stomach aches and more. 

I guess I can try a different doctor if I'm not happy with their response - but is there anything you've said to your doctor that's made them less like to fob you off and take what your saying more seriously? 

I'm planning to say something along the lines of I do still feel run down often and I was told I had Gilbert's syndrome a few years ago, and there are symptoms which I do have. But it's confusing because being told originally that it's benign with nothing to worry about then feeling this way for so long with nothing else ever showing up in tests, it must just be the Gilbert's? 

Its weird because no doctor has ever ever mentioned it to me again, makes me think is it even on my record! Or do they think it's nothing to worry about so they don't bother bringing it up. Because the amount of times I've been for things and then nothing shows up in the tests they do! 

i haven't been for a couple of years and have put up with it cos nothing was ever wrong, supposedly.

 I did go last year (probably not related to Gilbert's) because I had the same reaction to certain foods 3-4 separate times, she looked at me and said it was probably food poisoning, if it wasn't then maybe just don't eat those foods again, buuut yeah you could keep a food diary, if you want to. 

Just made me think "why aren't you taking this seriously! try being ill and horrific stomach cramps for 2-3 days see how you like it." It was her body language too that made her seem not bothered. But I'm too nice and just said yeah ok thanks bye. 

Think I'm just paranoid they won't take me seriously again. 

 

0 likes, 3 replies

3 Replies

  • Kate53CornUK
    Kate53CornUK Bee87

    Posted

    Hi Bee,

    I got diagnosed in 1978 and no one ever takes it that seriously until you go into hospital and then there is some interest!

    I think this is the trouble with a so-called benign condition, it isn't going to kill you but can affect other conditions. GS does account for an awful lot of irritating health issues and because not a lot is known about it I just had to make it up as i went along. I also didn't find much support and to research on my own.

    Gilberts makes your liver work harder so diet is the thing that makes a difference to me and goes without saying that a healthy diet is imperative. I eat very little red meat and natural sugars and avoid any food with a long digesting time (meat mostly and processed foods). This might make a difference to fatigue.

    I kindly passed GS onto my son and he struggled during his teens. I have found as i have got older (50) that I make less demands on my body so my symptoms are lessened.

    Sorry for long winded message but I guess I am trying to say that you have to educate your GP as to how GS affects you. If this is your diagnosis and nothing else is to blame them you have to get tough. Having said that, there is no cure. I spent years going to homeopaths, Dr's etc and just explain to anyone else how it affects me and what i do about it.

    Good luck 

    Kate x

    • Bee87
      Bee87 Kate53CornUK

      Posted

      In general I have a healthy diet, but I could definitely cut back on sugar. I always struggle with sleep and never get enough, which is a work in progress. I got an amazing full 8 hours a few days ago. First time in ages and was great!

      It's the lots of little things I do or don't do that contribute to making fatigue worse.

      Yes I guess you're right, if there is nothing else coming back on the tests then it is Gilbert's for sure. And I need to start taking my diet more seriously and look after my liver. 

      Ah no don't worry the long winded message is appreciated I'd like to hear as much as you have to say on it all, Thanks for your reply Kate 

  • rita24073
    rita24073 Bee87

    Posted

    I have had a lot of symptoms and have learned to live with it thinking I was being a hypochondriac. You mention mouth ulcers. about 15 years ago had itchy spots on legs, arms, hands and legs. biopsy taken was lichen planus then about 3-4 years ago started with the ulcer in mouth. went to oral surgeon and biopsy taken this time oral lichen planus,  Mouth so sensitive to spicy foods. Since little is known of this . Like what is mentioned I too need to take my diet more seriously.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.