Gilbert's Syndrome and other liver worries

[constantworrier]

Hi all,

Following mildly elevated liver function tests several months ago, i cut down on alcohol consumption and after retesting, found that the results reduced to almost normal levels. Initially a liver ultrasound was mentioned, (which i am sure i would have been to scared to go for...not because of the procedure...but because of the results)...but my GP told me that i needed no further testing or investigation after the results responded to alcohol intake reduction. I have since been advised to limit alcohol to 14 units a week (21 units a week being the safe level for men). This, i have rigorously stuck to but i still can't shake my concerns, the trouble is, can i really go back again after i have been told to relax?
One particular concern was bilirubin which was elevated on the last few occasions (though reducing). I mentioned Gilbert's syndrome, (a deficiency in a certain liver enzyme which causes elevated blood bilirubin levels). This which would account for this, but this wasn't specifically tested for...though both genetic and other tests exist for it. My GP didn't really pass comment on this concern, probably because Gilbert's is a benign condition...but i can't let it go. One risk of Gilbert's is temporary jaundice, which whilst not harmful, is worrying and can suggest more serious conditions unless Gilbert's has been diagnosed already. I don't want this to suddenly happen to me and find i turn yellow and have to have a battery of invasive tests or even hospitalisation unnecessarily. I am paranoid about this to the extent that i constantly check my eyes for telltale yellowing and have now even puchased urine test kits for bilirubin!
I don't want my GP to see me as a nuisance or to feel that i am doubting her previous diagnosis, but i need to check that my liver function tests have remained relatively normal. I have been getting pain in my right shoulder and below my right ribs recently which is to scare me. Is this just tension....or something to do with my liver...??? What if it is gallstones...? I have cut down on fats just in case and have lost a stone and a half since christmas...i wasn't really overweight to start with though. Now i wonder if i have lost weight because i have some progressive illness?
Sorry to ramble...any advice guys?

Thanks,

CW

[spuds]

It sounds as though you are having trouble accepting that you are okay after a period of great worry about your health - this is what many of us on here are struggling to accept. Even though I have been told my ectopic heartbeat is nothing to worry about, it is still at the back of my mind. I would say go back to your doctor - even if it is just for reassurance. My doctor understands that a big health scare can leave you feeling anxious and worried, more sensitive that normal to standard aches and pains. I am sure your doctor won't mind - that is what they are there for. Tell them about the pains, see if they think more tests are appropriate, let them put your mind at rest. Health worries can take over your life if your'e nor careful. Best wishes.

[lass]

Hi CW,

I understand how you feel - I remember getting the "ok" after some bowel screening tests and this initally reassured me for a short amount of time. Then all the doubts crept in - what if they had missed something, I hadn't asked this question or that question, I hadn't told them about another symptom .... I think this is the nature of anxiety.

Where has your information come from re Gilberts syndrome? I work for a private hospital and I type up health screening reports. Gilberts comes up an awful lot and the doctors here are not in the least bit concerned about it. This is the standard wording used in our reports when a high bilirubin is found:

The blood results were normal apart from an isolated elevation of a substance called bilirubin, which is a product of the normal recycling of red blood cells. This is known as `Gilbert's syndrome'; it affects up to 5% of the healthy population and is of no consequence whatsoever. Your liver uses a slightly different pathway to do this, resulting in blood levels fractionally higher than the rest of the population. It has no effect on your current or future health.


I am just wondering if you have been googling and whether someone out there has scared the wits out of you about what "could" happen.


When did you last go back to your GP? Does he want to review you or was he happy to leave you to get on with it?


Personally, if it was causing me a lot of stress, I would go back and see my doctor. Ask for an explanation of Gilberts syndrome, ask whether your liver profile needs repeating in the future, and whether your other symptoms are anything to be concerned about.

Is your GP aware of your anxiety? Have you been offered any therapy or anything to help you deal with it?

Don't be scared to go back - it's what your doctor is there for. Even if it seems to you that you've been going a lot, chances are your doctor won't remember! They see so many patients, and apparently lots of them are like us (anxious).

[constantworrier]

Hi,

Thankyou for the support.

Spuds, you are right. I have been quite scared by this and the fear is not resolving. The only way to tackle this is to get more reassurement i guess.

Lass, thankyou for the information. It reassures me that Gilbert's is a completly benign condition and more common than i realised.
I confess...i DID google...i know i shouln't...but i was only thing i felt i could do to reassure myself and take away some of the fear. The GP i was seeing did scare the hell out of me by threatening a liver ultrasound if the results didn't improve. I have since found out he is well known for being "test-happy" and have since changed to another GP who was happy to leave further testing following improving test results.
It is nearly 3 months since i had liver function tests done. I have improved my diet, lost weight and decreased my alcohol consumption. I have been on a waiting list for CBT for over twelve months and the only support i get is from my GP (and you guys of course).

I am seeing my GP this morning and asking for repeat tests. Like you say, GPs are there to treat both the physical and emotional aspects of illness.

Time to get tough and face the fear...wish me luck!

CW

[constantworrier]

Well i got my test results back and everything was now normal (hooray!)...except the bilirubin which was still high. My GP has finally diagnosed me with Gilbert's syndrome. At least this is something benign rather than the multitude of other more dangerous liver conditions it can mimic. I can relax now and try and forget about it. I am so glad i pursued this and faced the fear!Whilst the all clear would have been the ideal, Gilberts is nothing to worry about.

Thanks for the advice guys!

CW

[spuds]

So pleased to hear that it was not something serious. I hope you can put this behind you now and get back to normal. Best wishes.

[nomorepanic]

Glad all is ok! fab news

[dazzammm]

check out the internet for gilbert's syndrome sites. I was diagnoised too but still wondered why i felt like crap - and there are plenty of other people who have had the same experience.
Some people do not accept that GS is as benign as the GPs say and feel its a lazy diagnosise.