Gilbert’s syndrome

Posted , 6 users are following.

Was feeling really ill and down for about 2 weeks had a blood test done and it’s came back as b12 deficiency which I already had an idea I had as looking at the symptoms. Also came back I had Gilbert’s syndrome having read up on it I’m not sure what it actually is just looking for someone else who has this who understands it better and would like to talk ? 

2 likes, 9 replies

9 Replies

  • Posted

    Hi Abby, the best way to inform yourself about Gilbert's Syndrome is to go to: http://www.gilbertssyndrome.com

    Because docters say it's a harmless condition but in all the forum's you see different stories.

    I myself have GS and B12 deficiency since 30 years and learned a lot about dealing with those issues.

    Very important is to inform yourself well.

    Both diseases are still very unknown by the medical world.

    Especially with B12 deficiency you need good guidance and mostly if your level is too low you need injections. It depends on the cause of your problems.

    So good luck and inform yourself well.

  • Posted

    Hi Abby, I was diagnosed about 3 years ago. I went in about something else and had blood tests. They did another one afew weeks later, and said it was most likely I had Gilbert’s syndrome, due to high levels of Billirubin. The only symptoms I have had are intolerance to Caffeine, and fatigue. I too have wondered if I had a difficiency of some kind, and my iron levels are low. -Beth. 
    • Posted

      Hi Beth, I went the doctors because I was tired all the time and had literally no energy my whole body would ache and he thought it could be b12 deficiency which it did come back as well as Gilbert’s syndrome I don’t understand what it is do you have to take anything for it? Can it be dangerous? 
    • Posted

      No, I have been told by doctors it isn’t anything to worry about. 
  • Posted

    Sorry to hear about your diagnosis..  And NO it is not dangerous in any way at all.

     

    THE GOOD NEWS…   People with a high bilirubin level have an inbuilt protection against heart disease.  Nobody seems to quite know why, but the statistics are simple and obvious to see.

     

    However Gilberts does come with digestive issues and fatigue for many people.

    The fatigue is sometimes due to vitamin deficiencies. In particular you should check for B12, B6 and vitamin D.  All of these can cause fatigue problems.

     

    There is also the known proven situation regarding the liver.  Bilirubin comes from the liver, and IF the liver is stressed, then the bilirubin levels can increase.

    What stresses the liver..??  Of course alcohol, but also many herbs and spices.

    Some people, including myself, have managed to reduce their bilirubin level by careful diet.

    In my case I removed COMPLETELY all herbs and spices, and my alcohol intake is just a single beer every now and then.  My liver has clearly appreciated this, in that my bilirubin level which was over 100 at the jaundice level, is now down to 25 or close to normal.

     

    It took over a month for the results of the diet change to occur, so do NOT expect instant results.

     

    In my view, what have you got to loose, by trying a different diet.?  A lot easier and cheaper than pills.!  Of course all the other usual things apply, like taking regular exercise, eating fresh vegetables and making sure you get sufficient rest and sleep.

     

    A few things for you to try..  Good luck.

     

    Dick

    • Posted

      I have b12 defienecy as well so most the symptoms are from that. I don’t understand is it there all the time or does it come and go? 
  • Posted

    I was diagnosed with GS when I was in puberty, about 15yrs old.

    When I was 23 I was diagnosed with anxiety.

    Are those 2 things related?

    I also feel fatigue and very strange when I drink coffee.

    Any diet suggestions? Thanks.

  • Posted

    HI ABBY,

    GS symptoms are as people have said. Fatigue etc. But for me it was the brain fogginess, lack of concentration etc. really dull! Things which irritated me definitely included spices.

    A really good thing to do is get a good book on livers and how to protect it. eg milk thistle, filtered water etc.

    Good luck!

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.