worrying news

whilst trying to get an emergency appointment at my dr's surgery (i had been ill for 24 hours, slept for the following 20 hour's and awoke in pain with very yellow eyes and skin beginning to tinge yellow) i was told i need to speak to a nurse to see if i needed an appointment that day - the nurse rang me back a few mins later and i explained everything including the yellow eyes and less yellow skin and ruq pain - she concluded i could wait for an appointment untill the following day and take paracetomal for the pain as it was most likely the pain was caused by vomiting for 24 hours - stated it was the equivelent of doing lots of sit ups when not used to it (clearly she had not listened to a word i said!!!) - luckily i knew better - many less informed patients may have followed her advice!!!! i hung up and phoned the surgery again and insisted on talking to the parctice manager - who put me on hold until the next dr was available to speak to in between patients. i was told to go strait in and would be seen next.. i had loads of bloods taken and was admitted to hospital the following day - when my bloodwork came back! by then i looked like homer simpson (i was that yellow) i was not writen up for paracetomal - but the nurses kept offering me (as they are able to without prescription) amazing as every other drug i was prescribed was after consaultation with a liver unit in another area (obviously i refused it) !!even nursingl proffesionals dont seem to realise the contraindications of paracetomal - as you can get it in the supermarket for next to nothing and everyone has it in their cupboards!!

by the time i was admitted i was very ill with severe jaundice and a significant abnormality in liver function - i hate to think what could have happened if i had taken the advice of the nurse in the surgery!!!

sorry ant - i should have said i was unable to view your link - my diagnosis was obstructive jaundice due to gall stones and was resolved with gallbladder removal - 2 years later i had surgery to repair an incisional hernia (no paracetomal was written on the sign above my bed) following my op i noticed in the bathroom mirror that my eyes were very yellow - i got a bit freaked and mentioned to the nursing sister - who said what do you expect you've had an anaesetic with your gilberts syndrome!! no one had mentioned it me before!! I have always has a slight yellow tinge to my eyes with colds, flu and other illness (on the unlucky occasion i have had to be ill) - but no one told me i have gilberts - my gp was not aware when i asked following the surgery, and when i asked the dr in my outpatients appointment he just suggested discussing it with my GP (already did!!) i can only assume i am Gilberts -nothing is mentioned in 2 hospital discharge notes but the nurse in hospital was clearly under the impression i knew!!

The detoxification of most drugs seems to be a major problem for me i ended up heavily jaundiced after taking doxycycline. I do find the constant fluctuating jaundice causes quite a psychological stress for me to the point i often haven't been able to face some situations looking so yellow i don't know if anyone else with GS struggles with this .

Matthew,

You're not alone but in my 18+ years experience with GS, my doctors have done a great job of endlessly reminding me GS isnt harmful or has any symptoms. And +1 on the drugs. I'm currently having problems with kidney stones and they gave me diclofenac for the pain. I took 1 pill and have been very nauseous ever since and stopped immediately. Before this kidney problem though, my GS changed me from a healthy athlete to feeling like a sick flat battery. I suffer from tummy problems, nausea, panic attacks as well as feeling generally toxic. None of which I'd had any problems with until I turned 16 or so. The doctors sent me to psychatrists for the panic attacks who I happily talked into silence in the hope it would simply fix the way I felt. I was amazed when online seeing how many people with GS also suffer from the same problems but again have also found many websites echo'ing the doctors " It's completely harmless " views so am tired of chasing my tail too. Like anyone else out there, whatever the reason I just want to feel better again. Would love to see a more definitive stance on GS as I've seen far too many people talking about feeling physically sick and tired with it for it to just be a co-incidence.

Take care and wishing you and everyone else who has problems with this condition a good week !

DavidN,

Sorry to hear about your kidney stones, i luckily haven't had any major medical problems with my GS although i really do suffer a constant state of fluctuating jaundice and have done for some years. A good day for me will be a bilirubin of "only" about 3 times a normal level but some days i can be quite noticeably yellow and it has been noticed and questioned frequently in the past that seems to be my main upset with having it but i try my best to look after myself and iv never drank and try not to give my liver any additional work. Im also with you on the tiredness whatever maybe read i regularly feel lethargic and suffer headaches which im certain are related to GS.

Matthew,

It's fine - plenty of people suffer from kidney stones, just luck of the draw !

The thing that kills me with the GS is the nausea. I didnt go to my doctors for GS as I didnt have any idea what it was, just wanted to find out why I was suddenly feeling sick all the time as this was very new to me.Had lots of questions / tests but everything checked out okay. Over the next 5 years I too became fed up and depressed simply because I was tired of feeling nauseous for such a long time while being told I was " fine ". Eventually I was tested for GS and finally something I hoped would explain the nausea and lack of energy but the doctors assured me GS has no symptoms so until I looked online many years later and found so many people with GS listing nausea as a common effect of it, I just had to make do. Am 34 years old now and still annoy my doctors just to be told it's all in my head, but I'm still not ready to accept that - especially with the amount of people on www.gilbertssyndrome.com/symptoms.php listing nausea as one of their main problems so again wish the doctors would re-think their stance as the last 18 years of my life could have been so different with a symptomless problem.

I replied with a link to a website with lots of info on GS on it written by people who have problems with it. This site said it needs to appove all links before posting it, but I cant imagine why they'd reject it. Will check back tomorrow.

Essentially it just lists a lot of people who have nausea as a main symptom of GS and tiredness aside, it really has been the nausea that has caused the most problems for me ( despite my doctors telling me GS will not cause nausea !! )

I initially went to see a doctor when i was 16 and the only reason i went was my constant (very noticeable) jaundice some days i feel like a jar of mustard but i too have always had a low tolerance to fatty or strongly flavored foods and felt sick a lot. I also had a slightly raised bilirubin as a child but only developed jaundice into puberty and its took until now (24 years old) for any doctors to take me seriously with how being constantly jaundice has affected me mentally and i'm having to try counselling to try and make me less fearful of it getting noticed or questioned. It seems it cant be anything else other than GS since all my other liver functions are normal and my scans reviled no problems but i'm with you on the fact while it may not be "a disease" as such its never taken seriously enough, there's far too many of us all complaining of the same symptoms that seem very real to me.

Matthew - we cant all be crazy The above website linked shows a lot of people in the same boat.

I was 16 too, had to drop out of school, give up everything for 1 resaon only - I felt sick to the point of staggering, something to this day ( 34 years old now ) I've never deemed fine, normal or acceptable.

A while back doctors wouldnt admit that ME existed either so hoping it's just a matter of time.

Today was a rough day - I was prescribed a strong painkiller for kidney stones and have been as yellow as a banana since, feeling very nauseous and shaking and it didnt even make the pain stop !

As soon as I get rid of my pet rock I'm going to lock horns with my doctor again complete with the GS website I linked as on paper the problems that stop me from enjoying a normal life are relatively straight-forward ( Anti nausea meds for the constant sick feeling for the GS, and painkillers that do just that - kill the pain ).

You wouldnt think it was rocket science in 2012.

Anyway, once again you're not alone.

I looked online and saw some people in Sydney, Australia are currently looking for people specifically to do GS studies on so I'll be keeping an eye on that ( and my fingers crossed too ! )

Take care and have a good week !