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Anyone know if there is a link between Gilberts syndrome and vitamin D deficiency?

Posted , 9 users are following.

chaderella
chaderella

Hi, I found out I had Gilberts Syndrome 14 years ago and it answered a lot of the tiredness and other symptoms I have had for many years. Recently have been having a lot of problems with my knees and hip joints as well as my back and neck. I'm being sent for a Vit D deficiency blood test and it got me wondering if there is a link with Gilberts syndrome? Has any one esle found they have this deficiency too? 

I'm also so pleased I have found this forum as Doctors really don't give enough time and research to understanding Gilberts Syndrome. It's been helpful to see I am not alone in the symptoms I feel on a daily basis.

 

0 likes, 16 replies

16 Replies

  • traudley
    traudley chaderella

    Posted

    Hi Chaderella

    Ask you GP about Vitamin B12 as well!  The vitamin D deficiency will make you feel ropey and affect your daily ability to cope in general.  You will get plenty of help here also further insight to this condition.

  • cara38227
    cara38227 chaderella

    Posted

    Hi.

    Ive had blood tests where i was so deficient in vitamin d my muscles were hurting! And ive just recently had tests where the levels were fine. Yet my gilberts symptoms were at their worst.

    I personally dont have a correlation between the gilberts and low vitamin d but who knows.. you Google search gilberts syndrome and it apparently has no symptoms! As all of us who suffer on this site know this is not true 😊 good luck

  • traudley
    traudley chaderella

    Posted

    Hi Cara

    Have a look through Emily and Billys comments. If you can go back to the GP and ask for further blood screening especially liver function and ask to see a gastroenterologist to put your mind at risk. I feel that we are far being a hypochondriac and if you check on the british liver trust the symptoms are well documented. best of Luck and do not be disheartened.  Take Care

    • cara38227
      cara38227 traudley

      Posted

      Hi traudley.

      It was a massive bout of irritable bowel years ago that alerted doctors to elevated bilirubin levels. After a colonoscopy and everything was clear they put it down to irritable bowel. Which definitely seems to be affected by hormones.

      I get regular blood tests done. Full liver and kidney function. Blood count etc etc. Everything is always perfect (haha) apart from the bilirubin levels. I have had the 2 blood tests that confirm Gilberts and yes i have it. Other than that i am the picture of health according to medical specialists! As soon as i looked through this forum i started to feel better. My symptoms are real and there are other people who experience the same struggles with these symptoms as i do. I guess unless someone finds a miracle cure its something we just have to live with.

      Thank you for your suggestions 😊

  • traudley
    traudley chaderella

    Posted

    Hi Cara

    I feel the same as you, look through Emily and Billy and others and you will see that there are associated symptoms with this condition. keep yourself hydrated as I find that this helps and be mindful of what you eat and drink. Note any changes in your well being.  x

    • Sackla
      Sackla traudley

      Posted

      same here .. drinking a lot (i mean LOTS) of water helps reduces the symptoms but I end up urinating every 30 mins or so. something else which might sound stupid but warm showers and massaging my gut helps me feel much much better (I'm having symptoms since i was 19 and I am now 36)... maybe its only in my mind but maybe worth the try. Cheers
  • Kwenda
    Kwenda chaderella

    Posted

    I changed my diet and removed ALL spices from my foods.

    Now my bilirubin is at 27, it was over 100, and I feel so much better.

  • chaderella
    chaderella

    Posted

    Hi thanks for all the comments. Will look into B12 to. I do try and eat healthily and hardely ever drink alcohol becasue this really does make me feel ill for a few days afterwards. When I do drink lots of water I do feel a lot better. 

    Thanks

  • andrea44446
    andrea44446 chaderella

    Posted

    I was diagnosed with Gilberts in 1987 and have lived quite well with it since ( becoming used to 'always being tired') but in the last few years, roughly tying in with the menopause, I've begun to feel so tired and neck and back pain has been having a significant impact on my life. Finally I went to the doctors and I was Vit D deficient - I was put on a dose of 800 (can't recall the suffix) which others on here have said is a very low dose. 3 months later I was retested and my count is back up to 55 (was 22) so my GP is happy! I'm not so sure as it was summer time anyway and ive been outdoors alot. We'll see i suppose. However I've never linked it with Gilberts and would be interested to know if there is a connection?
    • Kwenda
      Kwenda andrea44446

      Posted

      I have studied Gilberts for many years and never seen any reliable research that would link these two.

      However having read of many with Gilberts and then looked at their lifestyle it was immediatly obvious that they did not spend much time outside in the sunshine to obtain their vitamin D.

      Many of the Gilberts sufferers had other problems, such as bad back or mobility issues and thus spent 99% of their time indoors.

      I thus became a believer that we should be out in the sun and fresh air and doing at least some exercise, even if this is just walking.

      Following this plan myself together with a change in diet has reduced my bilirubin levels and increased my vitamin D levels and I feel VERY much better for this.

    • Kwenda
      Kwenda

      Posted

      An update that I thought of..

      New born babies sometimes have jaundice or a high bilirubin level.

      One treatment is phototherapy where the newborn is placed under strong halogen lights, or special flourescent lighting.  These light rays will decompose the bilirubin so that the breakdown products can be excreeted via the urine pathway.

      There is no research that I know of whereby jaundice can be reduced this way in adults.  However one suspects that it could only help..??

      Thus being out in the sunshine COULD reduce the bilirubin, but would certainly increase the vitamin D level..

    • andrea44446
      andrea44446 Kwenda

      Posted

      Hi Kwenda. Thanks for the feedback. I never thought to raise the issue with my GP but believe my Bili' count was checked back in March when the original blood test took place. I'm presuming it was ok as was everything else such as calcium, thyroid, coeliac etc.

      Is it likely that Gilberts can get worse in its effects as one gets older? I certainly feel less tolerance for alcohol and have had a couple of occasions where I've been ill the day after a (literal) couple of drinks.....in a way I've never been before!

    • Kwenda
      Kwenda andrea44446

      Posted

      I can only suggest you get tested for bilirubin again and also the B12. I have had Gilberts for ten years and age does not seem to make a difference. Now in my 70's..

      I know of no links between alcohol and Gilberts, certainly no problems for myself. The liver processes alcohol and also works to produce bilirubin. Perhaps a liver function test might be useful..???

      BUT we are all different and many with Gilberts do experiment with foods and drinks to find what is best for them.

    • traudley
      traudley andrea44446

      Posted

      Hi Andrea  I have Haemochromatosis as well as Gilberts. This is when your liver makes too much iron from everything that you consume. Haemo will give you low or no tolerance to alcohol. Look this up and get your iron levels checked.
    • andrea44446
      andrea44446 Kwenda

      Posted

      I was told Gilberts means any toxins are slow to be dealt with and alcohol particularly??

      My GP did a full range of tests in March and said everything else was fine? I need to check the figures with the Surgery.

      Thanks again Kwenda

    • andrea44446
      andrea44446 traudley

      Posted

      Hiya....my sister-in-law has haemochromatosis and shes had a torrid time with it so you have my sympathy and understanding but I'm assuming my iron was checked in the tests in March as she did the full range. She did say I wasn't anaemic either.

      Thanks for taking the trouble and I will keep it in mind but we've a good heart history in the family - my s-in-law has encouraged all her (Celtic roots) family to be checked and she found her father was a carrier as are 2 sisters and another has it. They now think her Mum, who died suddenly at 59, had it! Look after yourself!

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