Gilbert syndrome, but !!!: Hi everyone... - British Liver Trust

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Gilbert syndrome, but !!!

MnM007 profile image
12 Replies

Hi everyone,

I'm 25 yo. I've been diagnosed by Gilbert syndrome

I figured out after I got heavy alcohols drinking and my bilirubin getting high more for indirect than direct one and all LFT within normal range. Dr's said that I've to stop drinking spirits cuz it make bilirubin getting high after a month of diagnosis I back to have LFT my bilirubin back to normal range.

But my problem now is I feel like pokes or pinches feeling in liver side (flushing) it made me feel annoyed and think that I've something wrong in my liver. I had ultrasound to check on liver but Drs said it's normal..

Can anyone had this experience tell me what's wrong with me ?!!

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MnM007
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12 Replies

All the problems and symptoms you are experiencing are down to your drink problem. You must stop before you reach the point of no return. If you are already addicted and can not give up workout professional help, see your GP about councelling.

Good luck

MnM007 profile image
MnM007 in reply to

Thank you I'm not drunker, even been 3 months since I've been diagnosed by Gilbert not drinking anything. And I just started to drink 5 months ago

But that annoying feels in liver irritated me

Radnor profile image
Radnor

You should be elated! A good number of people on this site are in dire need, many of us have liver disease that is not alcohol related. I had no idea how serious my condition was until I tried to get holiday insurance. I appreciate that you were frightened the hell out of, You now seem to need reassurance and perhaps a second opinion to convince you? I know people who are allergic to alcohol. I know people who were told they had cancer too. After further tests it was not the case. I would swop places with you and so would many others on the site. Explain your concerns to your GP. Ensure you stay T total and be thankful you don't have liver disease. Many conditions cause discomfort in tendons and muscles. If it continues ask about seeing a rheumatologist. Be happy and thank God you don't have Liver disease.

MnM007 profile image
MnM007 in reply to Radnor

You are such a great person ❤

Radnor profile image
Radnor in reply to MnM007

We can't give medical advice on here, we share our experiences. You must ask your GP to refer you to a liver specialist so you can be reassured totally. Its understandable that you are worried. A GP is not a specialist . One of the people who was told she may have ovarian cancer is my daughter, only a few years older than you and it is most often incurable as its a silent killer. It terrified her and all of us. She still had to have major surgery but everything was sent to histology,All negative so then we were totally reassured. Stress and anxiety is not good. This too could be causing you symptoms. In fairness your Dr has done far more than some, take someone with you if you need support. Maybe then you will fully understand my reply.

Tho Gilbert Syndrome is characterized by spiking in billirubin levels it typically doesnt cause any serious consequences. In fact tho Gilbert Syndrome is a life long disorder it pretty much causes no complications and the spikes in unconjugated billirubin usually pass on their own and are not linked to the manifestation of liver disease. Your pins and pokes are real as myself and many members feel them. The pins and pokes may not be your liver tho. The general consensus is that the liver itself does not cause any pain. The pain you are feeling could be radiant pain from another organ or from a process going on near your liver. I'm not a Doctor and we must always throw in the disclaimer that we cannot give medical advice. That being said I would personnaly think that your issues do not have to do with drinking if your are stating that you have never been a big drinker and that you only recently have started drinking. Some forget that even in lifelong heavy drinkers only about 10 to 20 percent will ever develop liver disease related to alcohol and even that can take a couple decades of heavy drinking to manifest. So again I'm not a doctor but I seriously doubt your problems are alcohol related. But for experimental reasons stop drinking for a couple months and see if your pins and pokes dissipate. I dont believe you need to be a Teetoetaler and I doubt a doctor would think so either but that would be for them to decide and of course yourself as well. But if having a couple of drinks is causing you stress and anxiety than maybe youd want to stop just to alleviate those feelings. The pokes and pins can sometimes be mentally manifested as well especially when we are convinced our liver is being hurt. Not always the case but it does happen.

Good luck my friend

Megbird profile image
Megbird

Hello MnM007 thank you for sharing. You know your body better than anyone else. Perhaps the twitching is normal as you have cut down drinking. Trust your instinct. My take on this I would advise for you to come off Alcohol completely with help from community based support. Your GP or consultants can refer you to this. Also follow the health eating regimes on here. I am on LCHF eating and i follow its forum on here it is amazing. My worse craving for food and other habits are no longer there. All the bestxx

in reply to Megbird

Good advice but, hes not a drinker. Hes stated that in this post and the last one that his entire stint of drinking in his life was only for a brief few months. Hes worried as to why hes getting liver pain when he has been diagnosed with Gilberts Syndrome which does not cause liver disease or complications. It's basically an idiopathic diagnosis for temporary rises in billirubin that are harmless to the person. The worry here is he feels hes been misdiagnosed.

Megbird profile image
Megbird in reply to

Hello phoenixPallazzo Thank you for correcting me and I apologise.

in reply to Megbird

No worries at all. Our friend MnM007's accent translates a bit into his writing. I had to read it over a couple of times to make sure I had everything right myself 🙂

Megbird profile image
Megbird in reply to

Thank you

Megbird profile image
Megbird

Hello MnM007 discard my opinions earlier

I should have read your article properly. I am sorry. My apologies

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