Bilirubin levels

Posted , 7 users are following.

Hi all. I've been reading posts about Gilbert's Syndrome with interest. A few months ago my GP said I may have GS after a blood test revealed my bilirubin level was 48, more than twice the level considered abnormal of 21. The reason I had the blood test was because I'd been feeling very tired despite a good nights sleep every night, heavy eyes and dizziness. I took Serc8 for a few weeks to deal with the dizziness and then it passed.

I had another round of blood tests five weeks later and my bilirubin was still 48. I'm now waiting for an ultrasound appointment to me made. I'd been feeling fine since then until two weeks ago when I was getting localized headache pain above my left or right eye, pressure and pain in my eyes, jaw, teeth and cheek bones as well as neck ache. No tiredness and dizziness this time or any nausea - just face ache is the best way to describe it.

I'd be interested to know what other Gilbert's Syndrome sufferers bilirubin levels are, to know whether 48 is unusually high for GS. My GP doesn't seem too concerned about the level and neither does a friend who is a also doctor (both haven't specifically said it is GS).

I don't know how long I may have had GS for, that's the problem. I could have had it for years and years and some other condition caused the earlier symptoms which then found the GS. Or is GS responsible for me symptoms? Or is my age (38) now making the GS more pronounced? I've had a pale complexion for many years and sometimes my skin appears slightly yellow but you could hardly say it was jaundice yellow.

0 likes, 7 replies

Report / Delete

7 Replies

  • Posted

    Hi Daniel! 

    From what I have read, Gilberts starts to show up during puberty, The nausa, headaches and tiredness all sound like normal symptoms but you are the first I have heard of who has experienced face pains. I was born with Jaundice but that has been the only time my skin has turned yellow from gilberts which means people experience their Gilberts differently. Good luck with everything! My bilirubin levels havnt been high enough for me to have treatment.

    Report / Delete Reply
  • Posted

    Hello Daniel,

    What you describe as face ache, sounds to me like migraine. One of my main GS symptoms is an ache behind one eye which can progress down my face and into my teeth. It can be very severe, a full-blown migraine, or a vague ache and anything in between. I used to get it every couple of weeks, lasting up to four days at a time. A neurologist diagnosed it as migraine several years ago and I've suffered until 6 weeks ago when my GS was diagnosed and I installed a water filter. I have not had a full blown migraine since, although I have had headaches, as if a migraine was on its way. GS symptoms are not just related to bilirubin levels, I don't think. Other toxins in the body also have an effect. When I found out I had GS, I immediately started drinking a glass of water every hour to help flush out excess toxins. The fewer toxins the liver has to deal with the easier it can process the bilirubin. The problem was, I think the tap water I was drinking was full of contaminants and my headaches increased along with fatigue etc. The water filter has really helped! All my drinking and cooking water is filtered. I have changed my diet to avoid additives, colourings etc. and the improvement is enormous. Alcohol is a real problem. I can get away with one small glass of wine on a Sunday, that's it. If you drink, you might want to cut it right down to see if there is any improvement.You won't get much support from GP's. They don't recognise GS to be as serious in terms of dibilitating symptoms as it is.

    You would have been born with GS, but symptoms only show with hormone surges, stress, illness etc. There is a lot of useful info out there and a whole host of symptoms listed. You might be surprised how many you recognise.

    Report / Delete Reply
    • Posted

      Thanks for your replies. I've cut down on alcohol. I used to have a can or bottle of beer/lager or stout a day but now I just one every three days. I'm also drinking a lot more water now. I was drinking often but probably not enough. I also now have a larger bottle for work and I don't drink tea or coffee. All my water is filtered.
      Report / Delete Reply
  • Posted

    Hello Daniel,

    Yes, it is quite hard to monitor exactly how much you are drinking in a day, which is why I make sure I gulp down a glass every hour. If I just sipped from a bottle all day, as my husband does, I would never drink enough. I keep a 2litre bottle in the fridge and make sure I drink it all in the day. A very helpful website I have found is as follows. The forums are now closed but all the info is excellent. There are lots of links which take you all over the place and I am still looking! It's fascinating stuff and I urge you to have a good read. I hope you find it helpful. gilbertssyndrome dot com

    Report / Delete Reply
  • Posted

    Hi Daniel,

    I'm suspected of having GS (still needs confirming). The normal Bilirubin count is 2-21umol/L i believe. Mine is typically 55-60, with my max reading being 85. All my other liver functions are normal and an ultrasound shows no anomalies to the liver, bile duct, etc.

    I currently get occasional bouts of tiredness, shortness of breathe (after minimal excercise), IBS and itching - all suggested as symptoms of GS. Interestingly i'm never jaudiced. I don't have any cure for these issues other than just patience and waiting for them to pass.

    I hope this information helps you in some way.

    Report / Delete Reply
    • Posted

      Hi Lee.

      My US scan was clear too and I had additional blood tests for Hepatitis which were also clear. My last Bilirubin went up from 48 to 50 - I don't know what level it's at now.

      I get all those symptoms you mentioned too, as well as jaw ache and very rare sometimes a dizzy feeling and unbalance for which my Doctor prescribed Serc. I don't have jaundiced skin either - but have always had a relatively pale complexion which has lead to some people assuming I had Aneamia, but my FBC's showed the amount of iron in my blood is fine.

      Report / Delete Reply
  • Posted

    my son is 14 i had his redults back today his Bilirubin is 50, hes jaundice, tired sluggish, no concentration
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums 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 forums 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.

newnav-down newnav-up