Liver symptoms: I wonder if anyone can... - British Liver Trust

British Liver Trust

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Liver symptoms

CHRISR999
CHRISR999

I wonder if anyone can shed any light on my problems. I had a very poorly liver Feb 2019 . Was told to stop drinking or face progression for sure. Looking back the nurse who performed the fibro scan told me I must not drink n to keep toxins out. I had some dreadful symptoms until end of July that year. So 5 and half months. Then suddenly I felt back to normal.. Stupidly I was having some cigarettes. Not loads but a few now and then. But on the newyears eve that year I had alot of cigarettes at a party. I was struggling with everyone drunk around me. Had some fags instead of booze. Then a week or so later the pain in my right quarter came back. And the dreadful symptoms. I feel stupid for do what I did but I can't reverse that now. Since then I've had symptoms even to today. Weakness, tiredness. Generally unwell feeling which is the worse to cope with.. I'm scared I'm going to be like this for rest of my life. Its awful. My question is will I get back to how I felt in July 2019 when suddenly I felt well again.. I've not put anything toxic or harmful in my body for 15 mths now. Yet symptoms are still having a hugh inpact on my day to day life. I can't even work as the symptoms can just come on all of a sudden then fade away. It's like a nightmare roller coaster. It there anything to help me to get rest from symptoms. Thanks

50 Replies

What we’re your symptoms Chris?

I was feeling gravely ill mid Feb 2019. Felt so poorly. Then I had extreme fatigue, right quad pain, nausea, terrible weakness in my legs. My appetite completely went I had to force feed myself for a month. Then everything baited after a few months. I felt brand new at end of July 2019... Best I'd felt in year. Stupidly I craved for a fag so started having a few now n then. I couple of time I felt abit strange after having a fag. Almost like my liver was saying no no.. But newyears eve I had about 15 fags as was with a few ppl they were drinking n smoking I never had 1 drink but kept accepting fags. Then boom a week later my right quad pain returned. I felt so poorly again. I rang liver nurse to say I felt dreadful and the quad pain had returned, she said you been drinking haven't you, I said no... But I never told her about the fags. I was ashamed., I wanted to end my life a few times rather than thinking I'm going to be ill with symptoms the rest of my life. I was told I could have a normal life again at beginning. But now I'm not sure if that's possible the second time round

Have you had bloods and scans? Those fags won’t have done you any harm, I hate smoking but have not exactly been a saint booze wise. Could be a vitamin deficiency, they can make you really low and sickly. Only way is to go to doctor. I’m scared too that I’m not going to be the same again, going for scan next week. I have to rely on Lactulose after being healthy all my life, can’t sleep and have appetite when I can relax. I’m sure if you’re not drinking, it will be something you can get sorted.

Yeah I had a fibro scan showing alot of fat n some scarring. But I've reversed that. But I can't shake these symptoms off. Have a few goods days then bad day come back. Its been like this for 15 mths now. All my bloods are fine. Scans are fine. I don't understand what's going off tbh. All I know I'm struggling to cope with it. My quality of life is horrid. When I speak with docs they run bloods n they come back normal.. They don't do anything after that. I had the weakness in my legs right at beginning now it's in my arms. But with that I have fatigue alot n the unwell feeling that I can't describe... No one seems to be able to help

Go back and tell them how desperate you are. It could be anxiety it’s surprising what that does. Only Doctor can find out for you though, good luck.

I've been to doctors over a dozen times. They just run blood tests. Nothing comes back. Them cigarettes did something.. I remember liver nurse saying to keep all toxins out as it gets in the scars. She even mentioned 3 pints can do it. What she ment by do it is a guess. But my guess is she ment 3 pints can set everything off again like at beginning. Just wasn't clear enough with what she meant. It was alot to talk in at beginning. But I'm guessing the toxins got in my liver from fags. All the emphasis was on stopping drinking from which I understood

laura53923
laura53923 in reply to CHRISR999

Absolutely cigarette smoking can cause further damage to the liver. Your body is screaming out to be cared for.... no alcohol, no smoking. To help your liver heal you need to eat healthily.... low fat, low sugar, low salt. Fresh fruit and vegetables daily and lean meat eggs for protein. Regular daily exercise, drink 8 glasses of water each day to get rid of the toxins in your body. Its not a short term fix, it has to be a complete change of lifestyle. Your liver, mind and body will thank you for it. Good luck

Laura

CHRISR999
CHRISR999 in reply to laura53923

My liver has repaired Laura so I'm told. All bloods are spot on. Latest fibroscan was 4.6kpa. And cap was 168. . The mistake I made was after the first 6 month after going through the 6 to 7 month thing. I felt back to normal and was having odd fags as I was never told about smoking. Just to stop drinking. Then after a bjg binge on fags all the symptoms came back again. This time it's took me 15 month. All the symptoms are fading again. There won't be a third time. The most frustrating thing is the professionals expecting you to know things. Why they don't give you a leaflet on self care once you livers damaged is beyond me. My mother had a stent fitted in her heart they send her away with a booklet on what to do and what not to do. I'm sure if they did give you literature it would stop lots of suffering. It's about time things changed.

laura53923
laura53923 in reply to CHRISR999

Great news Chris. Yep continue with the healthy lifestyle and you will jave no more need to worry. Well done. There does seem to be a lack of info in some areas. Take care.Best wishes

Laura

CHRISR999
CHRISR999 in reply to laura53923

Thanks Laura. Your right about info. The liver nurse has been replaced with a young liver nurse. I told he about the symptoms I had she disregard them. I told her about the cigarettes. Still disregard it. Sent me back to my gp. So they sent me to a neurologist which then sent me for a mri scan and a nerve conduction study. What a waste of money and resources. Like I knew all along was a symptom of liver illness. I had weakness in my arms. Had it first time around. Then second time. So I knew what it was. I tried telling them on numerous occasions. Not its faded along with other symptoms. The wasted money it's cost could have bought ink and paper to run some guidence leaflets off. Ridiculous tbh

laura53923
laura53923 in reply to CHRISR999

Well at least all the info is on the livertrust website and here on the forum where people do know how to cure a fatty liver, how to stop a liver from becoming cirrhotic and how to live and cope with it if it does.

CHRISR999
CHRISR999 in reply to laura53923

I've only recently been directed to this site. I was told to keep off Internet by liver nurse. Said speak to the professionals. So with that in mind I went to my so called care providers. Then to be passed from pillar to post. Having to try work out what's going off.

laura53923
laura53923 in reply to CHRISR999

She is right not to google. Just stick to the NHS site and uk liver sites for the best info

Actually if you have liver issues cigarette smoking can cause further problems

What we’re your symptoms? I feel weak and tired as well as other things going on.

Sorry for jumping on this I’m obsessed with other people’s symptoms as that’s how I feel plus the pale finger nails, disrupted sleep and awful upper right back pain that just won’t go

My anxiety is in tatters but my doctors won’t do an enhanced liver test as my bloods have came back to normal even tho they have been bad over the years 😔

CHRISR999
CHRISR999 in reply to Hayleigh79

What's your story, did u drink or still drink. I've not touched a drop since 12th Feb 2019. Only the fags. But not touched no toxins for 15 month now

Hayleigh79
Hayleigh79 in reply to CHRISR999

I’ve drank on and off mainly on for 15 years, which I regret massively but like a lot thought I was invisible, after starting to feel poorly this last year I’ve currently not touched a drop for 3 mth but feel I’m getting no better, I’ve had a clear ultrasound and bloods are all back within normal range but I read all the time on here that both those things can still hide chirosis I’m really struggling

CHRISR999
CHRISR999 in reply to Hayleigh79

What's you symptoms? Honestly I feel I've been to hell n back. Not once but twice.. Tell me all your symptoms

Hayleigh79
Hayleigh79 in reply to CHRISR999

I feel like I have myself it’s just awful so I understand

My symptoms are a general unwell feeling, I have an appetite although not as great as normal, right upper back pain occasionally going into shoulder (no pain at all in the abdomen it’s all in my back but constantly even when resting) occasional itchiness & very pale looking fingernails (no half moon shape at the bottom)

CHRISR999
CHRISR999 in reply to Hayleigh79

Let me give some advise. If it only been 3 month since u stopped booze. Then u need to give it more time. I was told 6 to 7 months.. I felt great after 5 n half month. All the symptoms faded n went. The liver not repaired but symptoms gone. My liver nurse gave me a example of a guy who felt better after 6 mth. He thought his liver had repaired n went drinking. She didn't say what happened to him. But said that was it. Not really a explanation I know. But she told me that story to warm me I suppose.. But foolishly I started smoking again. Not I'm badly again. So please don't put anything toxic in your body. You should start to feel better soon. Don't make the mistake I did. I'm suffering again as a result. Alot longer up to now. 15 month's and counting. Keep it touch. Chris

CHRISR999
CHRISR999 in reply to Hayleigh79

The back pain normally goes after 3 or 4 months. The liver needs to calm down.. It's prob screaming at moment.. You will improve. Try get a fibroscan. That's a good way to see if there's damage

Read where not everyone has lunar on finger nails.

Hi ChrisI am no expert but I think it is unlikely that smoking a few cigarettes at new year would undo all the good you had previously done for your liver. All your tests show there is has been no long term damage done and your liver was all healed. I think that your symptoms must be from something else .

CHRISR999
CHRISR999 in reply to Angel46

Hi, I'd been having cigarettes from end of July 2019 up to newyears eve 2019. After been told in Feb 2019 I'd got a very sick liver. In July I felt like I'd repaired I felt completely well again. At the time the liver nurse told me a story about a guy who thought his liver had repair and started drinking again after he'd come through the 6 to 7 thing. Of been ill. She went onto to say that was it after that. Not sure what she ment by that was it. She didn't explain it. She did say he went out binge drinking for 3 weekends on trot n that was it! She then said 3 pints can do it. Yet again what she ment by do it I still don't know. But smoking cigarettes are as bad as drinking as far as toxins getting in the scarring. After doing some research.. So I'm guessing I've done it. Meaning what ever that do it ment by liver nurse. Something deffo happened as the right quad pain had completely gone in July. But it came back after new years eve. Pain shooting into my right shoulder blade.. All that gone again now but these symptoms are still present 15 months later

I am not aware that cigarette’s can cause as much damage to the liver as alcohol but I have never researched it. I do think that you had a great result in mid December and your bloods are all okay , (I may have dates wrong, sorry if I do). If you had damaged it so badly but smoking those cigarettes would it not show in bloods that have been done since?? What has the doctors been saying? I get that you have differed bring really unwell before ,I can sympathise as I have had times when I could curl up, shut my eyes and not wake up because I am so sick of being sick. It is horrible,physically and mentally draining

CHRISR999
CHRISR999 in reply to Angel46

Round about April 2019 after I'd been scanned earlier in Feb 2019 and been told my liver was a mess. She gave me a prep talk. Mostly to my partner but she wasn't supportive to be honest. She said I'd be ill for 6 to 7 months. But everyone different may take longer. Took me 5 n half month n I was through the other side. I felt great. So I started smoking on n off. It's wasn't until December new years eve I started been poorly again after a big binge on fags. Then I've not recovered since.. I agree with you it's a awful way to live. My partner left as she didn't understand the illness. Been a horrible 2 n half year. N symptoms are still touchering me. My biggest regret now is smoking after I'd started feeling great. Not even sure if I will or can recover. Liver nurse used the term that will do it.. No explanation so I'm guessing I'm doomed after not thinking about it properly and keeping the toxins out. Was one mention about cigarettes playing havoc with the fibrosis by a doctor. What ever that meant I still don't know

laura53923
laura53923 in reply to Angel46

Hi Angel. As l have said above, smoking will cauuse further problems to a struggling liver. It's another toxin attacking organs.Laura x

Angel46
Angel46 in reply to laura53923

I wasn’t aware of that Laura , I gave them up 17 years ago. 😊 You say it can affect a struggling liver, can it cause damage to one that has repaired itself? And do quickly? Hopefully Chris will find out what is causing all his issues sooner rather than later . Xx

laura53923
laura53923 in reply to Angel46

That l don't know but l certainly wouldn't advise risking it. Having given up 1 toxic addictive substance, replacing it or continuing with another equally dangerous, seems counter productive ? Yes certainly hope so too.

Hope you are keeping well.

Xxx

CHRISR999
CHRISR999 in reply to laura53923

Hi Laura I'm coming through otherside. Symptoms been fading for 2 weeks now.. This is my second time suffering. Won't be a third that's for sure. First time took me 5 month. Second time 15 month.. I don't know how I've done it. My tip to anyone is enjoy the days you feel good. Not many but you get them. You go through stages. It's hurrendous and it a very lonely illness. But as long as you keep all toxins out. And mean all. Certain medications. Smoking a deffo no go.. All the emphasis is on drinking but once you liver scarred any toxins get in if your not careful. It's a shame hepotologist can't give you a leaflet for guidance on self care for a people with a damaged liver. I'm sure it would stop some ppl suffering twice or more.

laura53923
laura53923 in reply to CHRISR999

You're doing all the right things so yep just keep it up. All the best

You are assuming there is damage done though without having it confirmed. I think you need to speak to doctor again because I think you are suffering from anxiety as well . If they are not willing to sort a scan again so soon after your other then I would assume that they don’t have the same concern as you do but can maybe find another way to put your mind at ease. Chronic illness is hard on husbands/wives/significant other, they watch the change, they see the pain and can feel helpless. I’m not the same person I was .

CHRISR999
CHRISR999 in reply to Angel46

With respect. I've don't what I was warned not to do. Put toxins in my liver. Via the cigarettes instead of alcohol. I was warned not to put anything in my body harmful. She said if I stopped drinking and started again 3 pints could take me back to square one.. I'm not suffering anxiety I'm on medication for that for years before.. I'm experiencing the symptoms I've already say. I'm trying to find out if I will suffer the symptoms forever now or is it a time thing. I was told 6 to 7 months before. I'm wonder if its going to take longer this time as I abused my liver a second time with the toxins in the scars. Your right it hard to live with. Especially when you can't get answers. I'm just guessing all the time.

Like anything the liver is never so black and white, the nurse told you the possibilities not definates. Go back to doctor , have bloods/scans to see if there is any damage then ask how to move forward from that. Without confirmation you don’t know if there is damage there , only guessing.

That's the thing what baffeling. Al my scans have shown reverse in scars and fat. But symptoms still persist. But on paper looks like I've fully repair. I've told doctor but they just do bloods and there normal. So Ive hit a brick wall with it.

Angel46
Angel46 in reply to CHRISR999

What are your symptoms? Does doctor give other possible reasons for them as it sounds like your liver is good ?

CHRISR999
CHRISR999 in reply to Angel46

Generally feeling unwell. Weakness in my arms, was my legs at first after cigarettes. Tired constantly. It's all the same symptoms as at beginning. They all went in July 2019. So I started smoking again.. Then they all came bk after newyears eve. I felt great up to that.. Must have been the smoking that's done something.. I was warned about toxins. I've made a stupid mistake as I can't work again now as I have good days then bad. Can't hold a job down like this. I'm not employable.. And I'm only 48... I had a business I had to close it. I was hoping to restart it but I can't how I am. Never know if I'm going to be ok tomorrow or day after. Just can't plan anything. I've had my kids coming for tea and had to cancel on them so many times. Now they never ask to come. It's impossible for someone to understand what's going off. I look fine to look at. Even I don't know what's going off. Apparently my livers repaired but I'm still poorly. The unwell feeling the hardest symptom. I just go to bed. I've been like this 15 month. Docs don't know what to do either. That's why I came on here to try get answers

Angel46
Angel46 in reply to CHRISR999

The thing is , we can’t give you answers when everything points to liver being repaired. Only your doctors can help by looking at other causes .

CHRISR999
CHRISR999 in reply to Angel46

Like I said the symptoms reappeared after smoking. Right at the time they started I had a scarred and fatty liver.. The scars and fat sorted themselfs out. But symptoms are the same ones but still pesistant.. I might have to hang my head in shame and tell me liver nurse about the smoking. I told her about the newyears eve incident. She said It shouldn't have done much 1 pack of fag. But she did ask if I was smoking on the run up to newyears eve. I lied n said no. So she doesn't know the full picture. That maybe why she asked if I'd smoked up to run up. I just feel stupid but it the only way I'm going to get answers by looks.

Angel46
Angel46 in reply to CHRISR999

I think that’s best , contact them and see what they say .

CHRISR999
CHRISR999 in reply to Angel46

I will do tomorrow. I just feel silly. I don't like lieing. But maybe they can understand what's going off if I do

laura53923
laura53923 in reply to CHRISR999

Keep it up Chris you will get there x

We all have to be honest with our doctors or they don’t have the full picture .

I know that now. I just thought the symptoms would pass again. Now I'm wondering if they will. I've got a family holiday to Las Vegas for my 50th. Its all booked and if I felt like I do some days here I'm going to be dreading it. I thought I'd be better by now tbh. 15 month of doing everything right. It's a good chunk of time. And I've supposed to have healed according to scans.

Dogmadpam
Dogmadpam in reply to CHRISR999

Have to say Chris I used to be a heavy smoker. IToward the end I was getting PVCS all day and I mean my heart was palpitating all day every day and flip flopping and missing beats every second. I have to give up work for a few months.

I was only 42 and had to have a heart monitor fitted under the skin on my chest for 3 years. Thankfully the PVCS were benign. I stopped smoking and they have eventually gone down to just a few a day. Point is smoking is a massive toxin and sometimes when I used to smoke I used to feel so shaky and sick it was scary. I guess my body was saying to me you are not doing this to me anymore.

I’d never dream of smoking now, it would knock me sick.... some of us are not meant to be smokers..

You can’t keep thinking negatively, your scan December was not just good but extremely good, your bloods are all good. You have some symptoms that could be associated to something else. Hope for the best,plan for the worst .......

Hi, I was diagnosed with NASH Cirrhosis a few years ago plus a host of other things and it’s just impossible for me to isolate certain aches and pains but I identify with what you’ve written. My Cirrhosis nurse has told me to not smoke or drink. As I gave up smoking in 2007 that wasn’t a problem but every so often when the family gets together I’ll have a drink of Prosecco because I was told by a famous nurse that the process in these sparkling wines make it more digestible and less harm but only in 1-2 drinks tops. She also told me I had to move my bowels 3 times per DAY!! I was put on Lactulose 50mls 3x daily. Well, it just didn’t work, so alongside the Lactulose I was prescribed a daily Phosphate Enema which I reacted very badly too and it resulted in a nasty red hot crusty rash in my down belows. (Sorry if I’m giving you too much info.) Nothing so far has helped me. I decided, with my husband and 4 grown up children that I wanted to live a life which I enjoyed even if it was a shorter life. I drink coffee once a day with a shot of Irish Cream Liqueur in it and a very occasional glass of Prosecco. I chose quality over quantity of life. I’m not a panicker and figure we all die one day and that dat day could be today? A car crash, heart attack etc We all know my life may be shorter but we’re all ok with it now. Once the stress of it all was done with I’m now LIVING the best life I can given my many disabilities. If you have a close friend or family I’d urge you to talk it out with them? Or ask for a referral to a counsellor or even get different opinions from the very helpful people on here. I hope this helps? I think I’m well on my way for a prize in the most long winded answers group! Take care especially in these terrible times of COVID-19... and the rest.

I’ve heard a few people say that they have a liver nurse Is this normal procedure?

Not my consultant or doctor has told me to stop smoking?

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