My doc won’t refer me for scans because my LFTS are perfect. I still can’t open bowels without Lactulose and my eyesight has gone funny this week. Optician says I have healthy eyes yesterday. Also my stools are very pale. Keep thinking I’m really at the end but can walk briskly for half an hour and housework etc. Going mad with worry. What do you think?
Yes you can and it's because the liver function tests only come from bits of the liver that are still working or struggling if they are off. The cirrhotic bits of your liver are in effect dead tissue so they don't emit any of substances detected in blood tests. Obviously you have haemochromatosis related cirrhosis which is enough for your liver to cope with without then giving it the very difficult job of dealing with the toxins involved in alcohol intake.
To keep your liver going as long as possible and to stave off deterioration or development of cancer which is a risk with both haemochromatosis and alcohol related liver disease then absolutely you should be remaining totally abstinent. I am guessing the Australian transplant system also demands abstinence where alcohol has played any role in the liver damage.
Oh I thought you told a man earlier that normal LFTS not possible if you were showing symptoms. My apologies if it wasn’t you. I get my hopes up and then come crashing down again.
This gent has a proven diagnosis of cirrhosis due to haemochromatosis. He had maintained sobriety, eaten well and his LFT's are now normal. He isn't describing any current symptoms being experienced.
Different then to habitual drinker. My eyes are playing up now, my family blames it on me always on here! Still feeling terrified I’m at the end of my life. Impossible not to use Lactulose. Went back for blood tests and stool sample which were all normal except for borderline folate. Thanks for replying, what do you think Katie?
You arn't at end of life, if your liver was that bad it would be shown in bloods and you'd be symptomatic of liver disease which from what you keep describing you arn't. I don't know why you would be so compacted in your bowel or have sore eyes. You really need to get this assessed by your doctor.
No problems with eyes, pre-diagnosis he did have an irregular bowel habit but he tended to go between diarrhoea & constipation. He never had LFT's done at that time so can't tell if there is any comparison and he never needed any laxative to help go.
I think your family are right, too much googling and staring at screens convincing yourself you are going to die, is causing you eye problems. I suggest you see an optician and eat more fibrous food instead of guzzling lactulose. Oh and change your name to worrieswaytoomuch.
I’ve seen an optician, eyes ok but still have floaters. I’m not guzzling Lactulose and have always been a lover of healthy food. I haven’t touched alcohol for 3 months. I have started to have a brisk walk everyday but you have said on one post that your husband was walking until hospital admission. I have been fast asleep but will be awake stomach in knots and looking for answers until I can sleep again. I find your response a little flippant and although I liked a drink, I still deserve to be treated with respect.
Are you yellow from head to toe? Is your hair looking and feeling like a brillo pad? Have you been hospitalised with 2 bouts of pancreatitis? Have you been mentally assessed? Have you been hospitalised twice for detoxification? Have you been told to give up drinking or you will die? Do you look 30 years older than you are? Do you struggle to breath when you walk? Do you struggle to grip things? Do you suffer from confusion and halucinations? If you answered yes to ALL of these questions then yes you do have something to worry about.
You have literary described me a year ago. But on the upside I haven't drank since and I am doing pretty well. Obviously I have had to change my lifestyle and look after myself but its all good still not as I was before but getting stronger everyday. Ive read things on hear but never posted before myself but was just interesting reading what you said. Definitely not the most pleasant of situations. Shame I didn't know what I know now I would never have let it go that far, I hope people who read what you said who think they need help take that into account and realize they can prevent it before things get worse. Im one of the lucky ones was not good seeing a do not resuscitate order with my name on. That could have been it.
Hi CarlCharlie. Thank you for the words of encouragement. I was diagnosed last June / July timeframe. I have hemachromotosis. My doc for years never told me I’m not supposed to drink. Then back in September something happened to my son and he almost went blind...well he was diagnosed legally blind. We got it in time and he is doing well. I started drinking again for 3 months straight. I quit beginning of January. Ate really well had complete LFT done. Saw the doc in February and he was blown away on how well all my bloods and liver function was. Everything was in the normal range. Cheers. Dan
Laura, although none of these things are happening does this measure if you are battling liver dis-ease. Id love your insight on my story i posted. Thank you so very much
I agree with everything Katie has said and explained. Your symptoms sound more hormonal than liver related. However seeing as you are obviously concerned about your liver health, to quell your fears and anxiety, from now on eat healthily, exercise daily and regularly and avoid alcohol.
Just wanted to say, after 13 years of living with cirrhosis I didn't know that LFT bloods only showed the working part of the liver, I assumed it was all of it lol.
Katie is fantastic, she’s so helpful and both she and her husband are inspiring but I still feel confused regarding all this. It’s situational I suppose. I have spoken to 4 different GPS who are convinced I have no cirrhosis because of perfect LFTS but why have I got symptoms, mainly needing Lactulose and yellow stools, dark urine. It’s nigh on impossible to even get a telephone call off GP. I feel so scared and lonely. Hope you are keeping well I follow your posts.
No, not kidneys, I don’t think so anyway. It’s worrying because the stools are pale not white but not normal. This week my eyes are strange, floaters etc. I’m just scared it’s too late but then I’ve had brisk walk this morning as I do every day. I have no nausea, appetite ok, just the bowel, eyes and can feel bit trembly but it’s possibly nerves. Appreciate you getting in touch. Oh yes and dry mouth with nasty taste.
I can get blurred vision , dry mouth etc but I don't class that as liver related, but I would definitely chase up further investigation, end if the say your gp has a duty of care regardless of this covid Hope you get some answers x
Hi Millie, can you share more about your experience with combating cirrhosis for 13 years?! Were you decompensated end stage liver disease (alcohol related). Thank you
Hi jowheeler,.yes of course. Was alcohol related, diagnosed June 2008 after I complained of tummy pain , bleeding , ascites, fatigue, breathless, first diagnosis was end stage liver disease,
Decompensated , in hospital 6 weeks, was very poorly at the time yet I was actually unaware how bad I was.
Given 6 months left to live if I did not stop drinking, but I had managed to come down from 7 cans of cider a day to 3 cans over reducing down gradually as I knew deep down this was not good and besides I was living with my dad then as I was going through a divorce and sold the house, so my dad god rest his soul ,once he found out my " secret drinking " put his foot down, even when I was discharged, it was down to his tough love and the gastroenterology team at the time that saved my life.
Thank you Downunda I'm taking no supplements at all other than lactulose
I used to be on thiamine and vitamin b12 , also nutrient drinks in the early diagnosis years due to malnutrition
When I was discharged from hospital in 2008 I weighed 47kg , very thin , bag of bones I was
On high protein diet for many years, veg , low or no salt diet of which I'm still on even now ,but im not so strict these days
I eat chocolate 🍫lol , occasionally white bread, I have unsalted butter no spreads, salads, fish no alcohol but I love Pepsi max cherry coke lol , all.in modetaton but im suffering with my bones now , I'm on calcium and vit D tablets, pregabalin, amyltriptiline as I have chronic pain, osteoarthritis, this was caused through long term drinking so my GP told me ,also I lost a lot of my teeth.
despite of everything you are dealing with, your energy seems so uplifted and positive. I am having trouble processing anything , difficult to interact with anyone without getting upset or sad. I just want my life back to some since of normalcy. Grateful you are still here with us, do you find that you will ever have a normal life again? Enjoying, etc?
Oh trust me , its hard , I have to fight my inner thoughts on a daily basis I live on my own , have done now for 13 years , apart from 5 crazy cats ..yeah I'm labelled as the cat lady lol in my family.
When you ask if I'm worried about leading a normal life , .Well I do lead a very normal day to day life with the enhancement of fatigue or insomnia, heartburn, chronic pain.. but I have to get on with life as I know it now , I have been to Cyprus and Egypt twice since my diagnosis, concerts with my sister etc so I class that as normal..I do get down, more so this last 12 months, I have this fear of death.. I am anxious about not being able to go on day trips or holiday weather in UK or abroad as I have no one now to go with, my best friend is not in good health and my sister is restricted as her son has diabetes and mental health problems that can be very Tiring for her at times, so i have a fear of being stuck at home and losing out on what time I have left on this earth you see .. I feel time passing me by and doing very little these days sadly, so you see I may seem positive at times but still struggle. X
Wow! I would assume you would be getting better after all of this time? Was there a time where you were feeling better and more like yourself? Did something happen in between your healing process? What have your drs said about your health recently?
Cirrhosis is a roller coaster ride .. I was back at work in the October 2008 !! After discharge in the August. I was feeling great , no fatigue other than normal , sleeping good.. topsy turvy regards drink as I cared for my dad for 16 months in 2011 , he had cancer and secondary cancer to the brain.. hard work, very hard emotionally and physically but I would not have changed it for the world as I knew I had given him everything that I could have done.. obviously I turned back to alcohol, losing him hit me very hard, even to this day 8 years on I miss him bad .So I drank solid for 2 years,
I could write a book on my cirrhosis journey,
I am where I am today, under hematology at the QeHB , 6 month check ups , steady and normal LFt
Thank you for that Millie! I am so sorry for your loss . I lost my mother in 2008 which triggered me big time! In 2008 for you, were you diagnosed with decompensated cirrhosis (with symptoms)? Then recovered?
Wish I lived near you wherever you are. Is Jowheeler a man or a woman? Be careful, Millie. Where will I find e mail they sent me so I can reply back to you? I’m hopeless with technology!!!!!!
Hi worriesalot, There will be no email notification, of you look at the top of your health unlocked portal , where is says chat, alerts, search etc. You should see a notification on the chat section, click on that and it will take you to messages 😉. Aww .thank you for your kind words .
I am very much a woman , why the confusion? My username is short for my real name which we dont have to disclose. I am here looking for support much like anyone else. Please don't make me feel anything other than supported. Remember women can play basketball too my dear friend.
How long had you been drinking Millie if you don’t mind me asking? I have drunk bottle of wine most evenings for 30 years. I feel horrified now after 3 months without and have easily left it alone too. I have had odd week or two off over the years.
Was a social drinker all my life really since the age of 17 , but things took a wrong turn in my marriage from a early start off.. I had long term anxiety agoraphobia, and my husband was not ever the sympathetic type or the type to sit and listen to you, I lost my mum at the age of 51 ( I was 28 ) and that affected me really badly , I hit the drink back then. Eventually I came out of it and we moved home ..
Long story short, abusive wife beating husband whom I left as soon as my youngest child hit 17 and I knew was stable in a job , eldest son was in the navy and my daughter had a baby living with her fiance .. so my drinking was really bad on and off for years , I don't think I ever stopped only when I was pregnant.
I hardly drank Any spirits, mainly strong cider occasional wine , I never ate ,I could go a week easily without food , that's another part of my life story , self esteem non existent due to mental abuse .
I stopped drinking in 2008 , but I have had several blips along the way.
I could go on forever..
Don't try to compare your drinking habits with another, as we are all very different
The girls who I think about who turned to drink were nervous and suffered panic attacks. I myself have had terrible anxiety from being 18. Panic attacks and no confidence. Up until this last few months I was eating really well and happy but developed tinnitus and was told to take Paracetamol, I’m sure un be known to me my liver must have been damaged and the toxic Paracetamol has made things much worse. I didn’t drink on the nights I took it. Thanks for the chat. Xxxxxx
I think anxiety and panic attacks can cause drink problems, im sure there's a link to it .Tinnitus must be so annoying for you , I'm sorry to hear this,
I take paracetamol buy only when really necessary, I used to take it every day at one stage before cirrhosis diagnosis.
Plese try not to worry if you can .you can always PM me anytime you want to
The usual liver tests basically pick up when there is active injury or inflammation. As a result, if whatever is causing injury to your liver has been removed or is currently 'having a rest' then those enzymes won't be released and therefore will appear as normal on liver tests.
There is another situation where blood tests results may also show near normal results. Thats when the liver is very cirrhosed and not many healthy cells remain to be damaged, as Katie has already explained in her response to you. In this scenario, even though injury may still be occurring relatively low values of the standard liver tests may still return. However, in this case the tests that indicate actual synthetic liver function (albumin, sodium, bilirubin, INR etc) would still show as deranged. You'd also probably feel like crud too, lol.
As we all know, the liver is a pretty resilient little beastie and can work quite well even with a fair bit of damage. So, if tests come back as normal it doesn't necessarily mean the scarring has gone away. However, it can be an indication that there isn't much additionally damage occurring at that particular moment in time.
When I explain my fears to the GPS they always say I had a very specific test because of my concerns about having Cirrhosis. I walk briskly for half an hour, have appetite but bowel problems and this week eye floaters. I have easily given up alcohol for this last 3 months, I enjoyed having a drink to relax with in the evenings but wish I had visited this website before now, it’s so very scary.
Hi Kristian. My complete LFT were all normal. AST, ALT, Bilirubin, INR, Sodium, GGT, Creatin, etc. But yet, my doctors said I still have cirrhosis. Nonetheless, what I’m doing seems to be exactly what my liver requires. Thanks. Dan
Yes, thats about right. You still have the scarring but, there's no, or very little, current additional damage occurring. And, despite the scarring, your liver is still working pretty well, which is also not too unexpected. I understand it can work pretty well even with significant amounts of scarring in place.
What are your platelet and albumin levels? These tests are watched closely by hepatologists to determine how well a cirrhotic liver is really doing. Only about 16% (if memory serves) of patients with cirrhosis have both normal albumin and platelets. In cirrhosis, platelets are low (under 35) and typically decline by 0.15 per each year of cirrhosis. As for liver tests, the ALT is really a poor measure of liver function but is an excellent measure of liver inflammation. The ALT predicts liver cirrhosis only about 23% of the time and the AST only correlates with cirrhosis about 62%. But, as I said, albumin and platelet levels, and especially trends of each, will be a rough marker of whether the cirrhosis is getting better or worse.
Biopsy will give you a much better idea of where you stand with cirrhosis, as will acoustic radio forced impulse (ARFI) and the ELF (enhanced liver fibrosis) tests. The Fibroscan (elastography) tests, on the other hand, have iffy reliability depending on a lot of factors (amount of inflammation in the liver at the time of testing, amount of fat in the liver and generally on the person, experience of the tester, etc).
As Katie, Laura, Kristian and others have said, please stop worrying and just stick to healthy habits. That's all any of us can do really. Best to you.
Hemachromatosis is quite in a segment of its own regarding liver disease. Many people have it for years before it is diagnosed, usually when they start feeling a bit lethargic etc... and go for a check up. The main thing is the iron levels. I have a friend just going through this. His iron levels were massively high which is bad for the liver. He has now had quite a few rounds of blood letting and they are nearly back to normal as are his normal liver functions due to the fact he hasn’t got cirrhosis. He has been told to stop drinking, eat healthy etc...
Hi No idea, all my consultant says is my liver is compensated, what he seem to ignore are the side defects worst of which is drastic insomnia for which I can find no other culprit
The short answer is yes, you can have concurrent liver damage and healthy liver function, as measured by LFTs. Healthy LFTs show that your liver is coping biochemically at the moment.
My experience; in May 2019 I was yellow, malnourished, my liver was swollen, and my LFTs were all over the place, on admission to hospital. Haven’t drunk since, eat healthily, exercise, my BMI is within the suggested limits, and my LFTs are now well within the healthy range. However, ultrasound scans and fibroscopy show liver ‘scarring’, likely top end F2 - bottom end F3 fibrosis, and stable.
Re booze, and putting liver damage to one side, I find that life is better without it. This isn’t delusion, wishful thinking, the zealousness of a convert, or anything of that nature, on my part. I feel healthier than I have done since my early 20s, exercise regularly (and enjoy it!), and I have so much more time, and energy, mental as well as physical, for the things that I like doing. I don’t want to try and tell you your business, this my just experience, but I’m so glad that I stopped. Feels like I’ve been given a second chance
I just want to thank you for being so open and honest about your experience. It is 'a novel' well worth reading.
Hi carlcharlie. Such a very honest and open post ,.can relate to a good few parts of your journey myself.. oh how I hated the drains , one going out and one going in .. I was happy to have the relief afterwards but did not last long , usually a month and I was having another one ..
I'm so so pleased that your doing well !! . Keep up the amazing work and positivity
All these brave people. Been reading book by George Best’s wife he had the same symptoms described by Carlcharlie. Awake here and terrified. Been referred for scan. Will try and send you PM tomorrow. Hope you have good day, at least it will be daylight soon! I have a lot of friends in your neck of the woods and love Shropshire.
Sounds like a good book ! . I have tarn up reading again but I like true crime books 📚.. I don't have my next scan until July this year, will have been a year since my last one due to covid etc..
Hello, please don't take my story as a given. Everyone is different and whatever your results are you can move forwards with whatever happens. I know its easily to say it but pondering on things, checking Google and looking for the best and worst, may not help your mental health and things can spiral out of control in your mind. Im not saying be ignorant of any problems but try to keep things in perspective if you can. If you know that reading up on the what ifs and whys will result in you being worried sick then don't trigger that in yourself and don't do it, as you will know the end result will lead to you being terrified. Its all about trying to know your own mind and seeing that pattern of behaviour and how it will make you feel if you go down that way of thinking , this way you can take control and stop it before it starts.
I know its hard but if you want to then give it a try. you've got nothing to loose.
Hi Linda, yup it wasnt the best I would be concerned if you had a particular issue I had lol, think its ok to have a little dark sense of humour, rather laughf than cry.
Awake like you, one of the strangest symptoms this not being able to stay asleep. Full of anxiety and not even diagnosed yet. Glad you are doing so well like Linda.
Ive always had a strange body clock if im honest, even when I was working half the time I just slept on my days off lol. like I said we are a different my diognosis was quick as it was touch and go. The fact in your case you don't yet have a diagnoses yet id say it is likely to be less to worry than my situation was so at least you can know that. If the likes of me can pull through it. You will be OK. For me I just did what I was told to do and I got better not recovered but stable my last scan was no change in a year so thats a good thing, my bloods had a slight vitimin imbalance so now take another supplement but thats fine. I know that im stuck with it but it is what it is, I have cirrhosis I cant change that but i can control it the best I can with the help of my doctors so I have that choice as you do too and only if it comes to that and it still may not. So stop your worrying, you can always have a plan and in the end things don't have to be as bad as you may think. Keep Smiling till you feel it and you will get there 🙂.
I am yes, im doing quite well in general, muscle mass and weight has almost returned and rather quickly, I found that a bit strange to be honest around end October November I started to notice my muscles on my arms had got bigger when I felt strong enough to give having a bath a go, couldnt get out before and just showered sitting on a seat prior to that then without the seat eventually, but this time i thought why not. So watched a bit of netflix on my tablet in the bath lol then I decided to try and see if I could get out without help (I got told off for that) I realised my muscle was bigger on my arms and I got out myself, was a little difficult but i could actualy do it. Strange really, think it was because I avoided looking at my armes and legs so never noticed it in shower. I do keep pushing myself and some days and probably do a bit too much(I get told off a lot for that too) ive always been inpatient and stubborn like that lol. But in general a few days taking it easy im OK again, thats just my way.
Hi carlcharlie, oh I can relate to all that trust me ! .Well.. maybe not all of it lol .Buy yes , being light hearted is a good way of dealing with things, I know I have had to do the same ,
Not so good these days but im doing my best 😌. Aww your cat is Charlie
Well good Job I don't use my cats after my name or it would be ...
Lol, yes true. Sory to hear that Millie but trying your best is all that you can do.
Say hi to the Cats from me 😅 always had cats, well always end up with cats just because im soft like that and everone has a daft name, Charlie is actually Charles Xavier Bent Tail The 3rd Walker Bissell. "The 3rd" was added as I thought it made him sound more Regal 😂.
Hi Carl, yes indeed, I live day to day , or should I say minute by minute..Oh what a wonderful name Charlie has !! Is he a pedigree at all by any chance..
I love cats my ex husband never allowed me to have pets, other than what he wanted that was a pond and tropical fish 🐠..
So I think having 5 I have made up for lost time lol !
Bless ya. No he had a hussy of a mother, another cat my friend and I adopted but she hadent had her little op so she wouldn't get into any bother with the boy cats lol. When we took her to the vets she was pregnant and I fell in love with Charlie one of her 6 kittens. Indecently after she finnished weaning them we took her in again, and you couldn't make this up but she was pregnant again lol. All got nice homes though.
Oh my days ! Cuteness overload Carl. He is adorable!! I'm a sucker for cats and kittens, hence the 5 I have, mind you 2 are siblings from the same mum , the other 3 I just got along the way, izzy is my youngest at 2 yrs old and lottie is 11 yrs .yes ! They can get get pregnant extremely fast, soon as they leave the kittens to fend on their own and off out again its easily done, happened to one of my cats ,she got an cancer and had to be put to sleep 5 years ago, broke my heart ❤. Thank you for sharing with me Carl.
Thank you worriesalot,.I never know what sort if day i will have, hence why I find it difficult to make plans, other than my seeing my sister , whom is coming over today actually, she was due yesterday but changed over Hope your day is as good as can be x
No , no shopping, I can't walk too much due to chronic pain, I have osteoarthritis in my left hip and knee and bone degeneration of the lower spine, I do a lot of shopping on line so I very rarely go out x
Oh what a shame. You must get really fed up. Forcing myself out and pretending everything’s normal but so down inside. I know the scan will be bad news and I'm dreading it. How can doctors not know that blood tests are not reliable. Anyway you’ve done very well, wish I lived near to you, we could go out for coffee and give you a change of scene. X
Yes indeed I do get fed up, I do what I can each day but this knockdown has prevented me from meeting my best friend and seeing my daughter and grandchildren.. my sister is my bubble so we both see each other week on week. Once things go back to some normality then I can start going bingo again with my best friend.
When is your scan appointment? .try not to worry, your doing a great job keeping focused !!
Yes it would be great to meet for coffee etc .. we could have a good natter x
Couple of weeks to scan. Trying to live normally, how I will be after diagnosis, I don’t know. Very scary stories on here. Hopefully, you can get out more soon. My daily walk and doing the normal everyday things are all I really need. Lunches and shopping trips with friends would be difficult at mo cos I’m so tired in the afternoons. If a miracle happens and it’s something else, I will sleep better and get back to normal but my symptoms tell me otherwise. Hope you’ve had good day and have plenty chocolate to keep you going! Xxxxx
Not top far then to wait, Thing is even if you are diagnosed with cirrhosis there's lots can be done ,look at me ,6 months left to live yet still here,
People are very different in diagnosis so don't read too much in to what other people post on this forum as we all are different but so very much the same if you understand..
Well I hope your day has been good so far, mine has been busy. In a nice way so I'm settling down now with my mini chedders lol and continue to read My Dennis nilson book
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