Sorry for long post but I'm Worried sick any advice welcome raised billyrubin scared of liver damage

Hello everyone ,

I am completely new to this so I am worried more than I ever could be that something is wrong somewhere and its self inflicted!

I have had the wrong diet fizzy and energy drinks for approx 10-12 years , and have taken co-codamol and paracetamol most days for approx 8 years I regularly taken double what I should have both over the counter and prescription at worst 16/20 per day. I had a long hard look at myself and realised I was hooked so have cut right down but I'm scared the damage is done .

Last week I had a bug (still do upset tummy etc ) I went to a&e as I was doubled up in agony , I fessed up everything but the dr didn't really take much notice was told that it was probly just bug maybe gallstones and my bloods where ok and sent me home with buscopan and to visit gp. Today I did and told him everything he suspected gallstones and sent me straight to surgical assessment at the hospital , I expressed all of my concerns and was told I have an elevated level of billyrubin jaundice eyes , no gallstones and my liver looks fine and everything ok other than billyrubin but couldn't really answer if i have done damage to my liver just that it looks ok. Since I've read about billyrubin I'm worried it could be linked please someone help me I'm scared stiff xx

14 Replies

  • There is a really good YouTube video I watched the other day that explains how bilirubin travels through the body, it is basically a product of broken down red blood cells, then it goes through various stages where it eventually becomes a product that will mix with water/attach to water, the liver does the bulk of this work. My bilirubin level is going bonkers but that is due to other medical factors, you need to push your doctor for a referral to a liver specialist, too many people on here get brushed off/lack of info. I sometimes feel bad almost telling my gp to do things but it's my health I'm never rude but it's important. I'm afraid randomly looking on Google isn't going to provide the answers, you need more tests to properly diagnose it.

    My advice is to stop putting all that muck in your body, start doing something about it now, if you can't come off them plan a reduction, energy drinks and painkillers will not be helping, I'm no doctor but that's a given.

    I hope you get an accurate diagnoses soon, you will then be able to deal with it.

  • I hope that works, it certainly will if you get any blood test results as it really helps show what alt/ast levels are at least, well it helped me anyway.

  • Thank you so much the video was very good I am pleased I have watched it as at least I know have an understanding of what it is as all doctors I have asked just avoid explaining it , it's just the billyrubin levels that are elevated with me they where 31 on Saturday and 48 on Monday all other levels are normal so I have been told.

    How do those levels sound to you as you said yours went bonkers many thanks in advance .

  • where is your pain. can you explain more about that please. does it come on at certain times or get worse at certain times for example after you eat. or is it the same all the time. have you been sick. as gallstones have a certain type of pain and its not really an upset tummy. and did they do a scan to see if you had gallstones, not that they always show up in a scan as sometimes it takes an mri scan to find them. i dont want to frighten you so im asking questions without jumping to any conclusion, as you seem very worried. love grace xoxoxo

  • Thank you so I have had a sickness/ tummy bug but I also had pain just below my right rib towards the centre , it wasn't there all the time , but when it came it came very hard , I don't think the two where connected all of the doctors thought gallstones in addition to a big but the ultrasound was completely clear , due to the history I had told them and my eyes being jaundice they checked my liver both with ultrasound and blood tests the only raises level was billyrubin and the radiographer and doctors said my liver looked fine with no obvious damage one did say that some mild damage wouldn't show on the ultrasound though which kind of made me think at which point does it show up , and how bad could it be damaged tbh I felt like as it wasn't failing at that moment they weren't really worried x

  • i was told my liver looked good and found out later that 1/4 of it had shriveld up and it was grossly fibrotic. i was annoyed as to what they had previously said and was told that it was just a picture. the reason im asking about the pain is with gallstones there is pain under and around the right rib and in of the right shoulder blade. some people get pains after eating. some people even get pains on the left hand side but when i first got diagnosed what took me to the doctor was terrible pain in my stomach at first and my right rib and shoulder she sent me for a blood test which showed i had an infection and a scan which showed one large gallstone, my pain kept on and on and they sent me for an mri scan which showed that the stone was in the bile duct. that usually makes people yellow and the whites of the eyes yellow. how i did not go yellow i do not know, although i do think i had a yellowish tint to my skin i asked people but they said no im not yellow i even asked my doctor and pharmacist and they said no. but i was right all along i did have that yellow tint as its gone now that the stone has gone, but one of factors for the stone in the bile duct is yellow eyes and yellow skin and also high reading of bilirubin. thats not to say that is what you have. but i will aslo point out that scans do not always show up gallstones, and pain and sickenss. however my pain and sickeness was unbearable and i was loosing consciousness as was getting blood poisoning and had to phone an ambulance. so how are you feeling today. how is your pain and your colour . how do you feel within yourself. hope your feeling always here for you. love grace xoxoxo

  • Thank you so much for taking time to try and help me , so I rang to make an appointment at my doctors for a follow up blood test to monitor billyrubin and also get my doctor to call me he did I explained everything and that I was concerned that the doctors could not confirm if my liver had been damaged only that there where no signs of swelling or anything to suggest on ultrasound, my doctor didn't seem bothered either he is normally really good but they are all making me feel like a paranoid mad woman it's almost like the don't do anything until failing. He did however say my Billirubin level was 31 on Saturday and 48 yesterday , they all seem sure it isn't harmful and there's no treatment and it's not connected to liver problems xx

  • yes i know when i was in pain i thought that they didnt beleive me when i kept going to the hospital. however after i got the stent put in my biliruben was 13 and they said that was great so im not sure about counts for it. and im not sure what it was before i had the stent in.i dont think 48 could be that bad if the docor is not concerned, they will definately know if the readings are high i would are you feeling within yourself, apart from the worry. how are you tummy pains have the got any better are you eating well. how is your bowel movements if all this is normal then things should be fine. how are you getting on without those co -codamol. i hope your managing to stay of them as they could be upsetting your system after all those years taking them, and the could constipate you as codeine does that. keep in touch we are always here for you. and try not to worry to much as they doctors must know what they'r doing and understand those readings. let me know about the things i'v asked if you dont mind. love grace xoxoxo

  • I feel a bit weak as I had not eaten anything from Thursday until today due to Being ill and then it's just been a mouthful today .my stools have been so loose and still are just water/ slimey bile like , I can't give a definite answer what my stole was like before because like you said the co codamol constipated me , may I ask how you found out your liver was damaged ? And will it ever get better is there anything I can do myself ? Thank you so much for your time replying it's so much appreciated xx

  • yes you could well have the runs because you have stopped taking the co-codamol. and you may also feel weak and if you have no pains in your legs then your lucky as taking to many of those co-codamol over a long period of time can cause withdrawels. and also stomach pains as well so this could well be what your suffering from. i think you will slowly get better as the days go in but im here if you ever need anyone to talk to or ask any questions, and many other people are here also. even when your taking a lot it can cause a stomach pain thats very bad, you were taking a lot of them and those fizzy drinks as well although the co-codamol are serious so i hope that your going to stay of them now as look at all the things that can happen and the worry it causes you. so you dont want that. what you can do yourself is stop taking those pills by the handfull and keep to a good diet of plenty fruit and vegetables fish nuts seeds and lentils chick peas rice and meat. and dairy food if your healthy which i think you are when you get over those withdrawals you can eat whatever you want really but keep in in a good sensible potions, a good diet is very important and the liver likes good healthy food. and this can make it recover as they say that the liver is a very forgiving organ. and can regenerate its self if you look after your diet and dont drink to much alcohol or take drugs. unfortunately i took drugs and thats how my liver got sick. but believe me many people who dont take drugs get sick livers because of the drinking and also because of a fatty diet. its called fatty liver. and alcohol can cause chirosis of the liver. im not a doctor and dont want to give you any wrong information i was more worried as you had the pain in your right side near your ribs and had the yellow eyes and skin. however youv had all the tests and its really probably after takling all those co codamol and then stopping them. your liver will get better dear if you stay of those tablets im always here for you anytime. take care and try not to worry. all my love to you. grace xoxoxo❤️🖐

  • Really thank you so much for helping me ❤️ , I know your not a doctor but I feel like advice from someone who has been through something or on the other end of it can often help or relate to you more than doctors I'm so pleased I wrote my comment and found you one last question before I set you free lol is milk thistle any good Or just a myth ? Xx

  • I have not taken it myself but I have heard that it is really good and I am thinking of getting something myself. A site I often go to and read a lot about the liver and good recipes and loads of other things is I don't know if this will come out as a link if not just type liver doctor into Google and you will find it or doctor Sandra Cabot liver doctor she talks about milk thistle and you will find many interesting articles. I am always here for you and so are others and I'm sure ther are many who know about milk could always type milk thistle in this sites search box and see what posts come up.its been lovely talking to you,a real pleasure.god bless you love grace xoxoxo❤️🙏

  • If you can finally admit the truth and have done something about it just keep moving forward. That takes nerve to be that honest. Clearly you want to heal and no doubt you will to some degree because you are not injesting those drugs any longer. Recovering to any degree happens one day at a time. Start your life now, heal it. Its all foot work, great people here, all very informed and generous.

  • I tried Milk Thistle for a week, due to the nature of it increasing Bile flow it made me feel worst as I have an obstruction of the bile duct, I didn't do my homework!

    But I wish it had of been good for me as it appears to be great for the liver.

    In my opinion try it, but only change one thing at a time, if you are trying to feel better you need to be able to clearly identify what has made you feel better, this will help you understand your condition. Its like with diet, there has been trial and error, but sticking to some simple rules helps me.

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