Tl;dr- caught off guard by what I should have known was possible, looking for pointers on dealing with the inevitable end stage.
Sorry about the long post--I don't have my official diagnosis yet, but see where it's headed and thought I would share my story. Been drinking heavily for 15 years (more this past year-- if only I had quit for the pandemic). For some naive reason, I didn't think it could affect me so soon. I wish there were more specific warnings of the threat of liver disease in 10-15 years of alcohol abuse, I always thought this could only hit much later (37M).
The past few months have been feeling tired more quickly than usual, fingertips got wrinkled spontaneously (or slightly swollen during exercise), sweat started to smell odd, so had bloods done in Nov. '20. Everything was in normal range except for GGT and calcium (AST to ALT ratio was inverted 29/20, though GP said nothing about it). I stopped drinking in Feb. Ultrasound came back fine across the board, more bloods with similar results-calcium and GGT normalized, AST/ALT lowered but still with a bad ratio (21/14), though albumin dropped somewhat and bilirubin increased-both still in normal range.
Abdominal pains have continued, gastro said maybe pancreatitis. Fibroscan shows 6.1 (so likely F1, could be F2 or worse--lets not forget the cutoffs are general guidelines). Waiting on Fibrotest /Fibrosure, but I know where this is headed. Found a tiny spider nevis, have lost a good bit of weight in a month, etc.
Alcoholic fibrosis unfortunately does not regress, and can rapidly deteriorate. I doubt a transplant is an option on account of the pancreas.
Considering some sort of end-of-life care at the moment. I don't want my loved ones to remember me as sick, and am terrified of exposing my fiancee to the darker sides of end stage liver disease (yes, they're all rough, but some are tougher).
Posting this as a warning to younger alcoholics who don't think they are at risk, or think they can drink into old age. Also, curious to hear coping strategies and dignified end of life options people have considered.
This is a great community- thank you for any insights, and best of luck to you all.
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Str8jacket
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My goodness, without a confirmed diagnosis and current tests not indicating advanced liver disease you are writing yourself off way too early.
Fibroscan is usually very accurate in fact when it is inaccurate it is usually because it can't tell the difference between actual fibrosis and ongoing liver inflammation so it tends to give false high readings rather than false lows. The chart for fibroscan when alcohol is the causal factor of liver ill health has a cut off at 23 kPa for cirrhosis. So your 6.1 is no where near.
You have normal bloods and a normal ultrasound too - the De Ritis Ratio only comes into play when your AST and ALT are elevated about the upper limit of normal also it only reflects cause for concern when the AST : ALT are on a ratio of 2:1 (Yours are no where near).
As regards alcohol related fibrosis not reversing this is also incorrect, up to cirrhosis level there is always the chance of the liver healing it just needs to be protected from the 'assault' which is causing the damage. If alcohol is that 'assault' and alcohol is ceased then there is every chance that the liver can heal - even in cirrhosis a liver can significantly improve by removing the alcohol.
Don't go writing yourself off yet. Start tackling your intake now and you'll give your liver the best chance. Even if you did have cirrhosis that doesn't mean a one way ticket out of here. We've got members on here who have been in a really bad place with all the symptoms of a decompensated liver and yet alcohol cessation has brought them back from the brink and they are doing relatively ok. The liver is a wonderful organ and provided you take this current situation as a warning and start looking after yourself from now on there is no reason your liver can't keep on going for many, many years to come.
You are no where near even thinking about transplant with the next to no symptoms you are describing.
Wait and see what your diagnosis actually turns up before sending yourself into a path of doom. Don't go searching your body for every tiny potential symptom and use them to convince yourself of a diagnosis you don't yet even know you have - when you start stressing and sending yourself into this health anxiety spiral it's easy to convince yourself everything points to liver and actually it is entirely possible the anxiety itself leads you to developing physical symptoms.
My hubby has cirrhosis, diagnosed in April 2012 at decompensated stage - vomiting blood and yellow/green. His is due to auto immune liver disease and there is hee haw he can do to stop his condition, it's done it's damage and burned out but left him with a shrivelled, shrunken and coarse liver which has never been missed on ultrasound. When he gets stressed with things in life (bereavement etc) he ends up bend double with abdominal pain and it's just the stress that caused that. When he relaxes this 'pain' goes away.
The BLT has excellent pages on alcohol related liver disease and others generally about looking after your liver. Only use reputable pages for your research because Dr Google and a lot of the American sites will convince you that the end is nigh when you don't even have a diagnosis yet.
You are correct about Fibroscan showing higher scores with inflammation--my low AST/ALT rules that out. As far as cutoffs for cirrhosis go, I've seen 12.5kPa as well, but the larger point is that decompensation can happen quickly, and it is true that the cutoffs are just rough guides.
Regarding the ratio, in alcoholic liver disease the absolute values of AST/ALT are not that relevant--the ratio is much more important, and 1.5 is perfectly consistent with advanced liver disease. academic.oup.com/alcalc/art...
I get the inclination to recommend that everyone fight, but this is not a winnable battle and my goal is to avoid putting my loved ones through what is sure to come given a little time if the disease runs its course. I want to avoid that option.
This post may seem dark, but it's really about seeking the best possible course, and causing the least grief--given that some is inevitable--to loved ones. I wasn't really looking for encouragement, but thank you for your kind instincts.
I am just going to say await your actual diagnosis.
As a member of the forum for nigh on 9 years i've seen the posters who have significantly turned their lives and livers around from decompensated to compensated and significantly reduced fibroscan scores and more with alcohol cessation. As your kPa was only 6.1 it's still no where near the 12.5 you quote.
Attached is the fibroscan score chart from the actual developer of fibroscan.
Anyway it sounds like I can't advise you any more, best wishes and hopefully you get a brighter diagnosis than you are envisaging.
Those cutoffs are rough guides. Studies looking at Fibroscan accuracy in Alcoholic Liver Disease show that a cutoff of 7.15kPa for stage F4 can be specific enough in ~30% of cases, one of the reasons that other observations such as clinical presentation have ro be considered. I'm not hoping for the worst, but can't ignore the signs.
Hi I am confused on readings of fibroscans, mine have scores against LSM kPa, IQR kPa and CAP dB/m are you able to explain what these readings mean ? Thanks .
Your CAP score is a measurement of fatty change in your liver. Your healthcare provider will use your CAP score to find out your steatosis grade.
The CAP score is measured in decibels per meter (dB/m). It ranges from 100 to 400 dB/m. The table below shows ranges of CAP scores and the matching steatosis grade and amount of fatty change.
CAP Score Steatosis Grade Amount of Liver with Fatty Change
238 to 260 dB/m S1 11% to 33%
260 to 290 dB/m S2 34% to 66%
Higher than 290 dB/m S3 67% or more
LSM stands for liver stiffness measurement with the kPa figure given being the average of all the (normally) 10 readings taken - this then calculates the liver stiffness and can determine what stage of fibrosis is present i.e. F0-F4.
IQR is the inter quartile range i.e. difference between lowest reading and highest reading the closer this gap is together the more accurate the reading. (This is part of the mathematics of working out the fibroscan score so isn't the reading you'll be given.
Normally you'll just be given a kPa score (LSM) and your CAP dB/m - you can read more about understanding your fibroscan score at:- mskcc.org/cancer-care/patie...
I would love some more positive insight! I havent been diagnosed either but symptoms are very real and hepatic. Can you please contact me @ newchaptertime@gmail.com to discuss more. Still hopeful
If that comment was to me then sadly no, I don't enter into personal correspondence off forum. You'll find lots of support on here if you choose to post.
Wow Katie! I dare not publish my scores. Good luck everyone in our condition xxx.I will say this though....... I shouldn't be even chatting about this now and definitely not a year ago. It's never too late?
Dear Str8jacket, welcome to this friendly forum. It looks like you have received a positive reply already from a forum member and I would echo what she has said. You do not have a diagnosis yet and I would urge you to discuss your concerns and anxieties with your GP or liver specialist, if you have one. The nurse led helpline is open Monday to Friday, 10am to 3pm 0800 652 7330 if you would like to discuss your concerns in greater detail.
Good morning. Im sure there are many that will be willing to offer advice. Are these symptoms sonce you have stopped drinking? Can i ask how long you have abstained? Sam
I also terribly with those in the.forst few months too. The muscle wastage is still quite apparent but the others seemed to subside when my.body got used to its "new natural" rythm. Id speak to your gp asap re muscle loss and diet. The site also have some really good advice. Do you follow a healthy diet? I wasnt offered any help diet wise just told to stay away from salt and alcohol and sent on my merry way. However my appetite increased dramatically and ive put on (and kept on) nearly a stone. So it is doable ☺
My diagnosis was after being admitted for ascites following a bout of illness (suspected covid and skin infection) and 2 months bed rest seen me blow up like a water balloon.
Have you thought of an action plan as to putting your concerns to a doctor and getting a diagnosis? I truely understand how daunting and utterly terrifying it is.
It may be worth.mentioning to your doc how it affecting you mentally too. I am going to do that, wish i had sooner.
I have, and am getting therapy. I have also cut out all salt and sugar, because despite the lack of an official diagnosis, I know my history and symptoms. I do have to work on eating more, possible pancreatitis to go along with everything makes getting enough calories difficult however.
Well thats a great start. If you feel something is wrong and you have taken action to rectify this or at least help progression or even start reversing the damage - thats great. The age old "we know our bodies" is so true. However. In some circumstance we dont give our bodies enough credit. I was litterally told i wouldnt see a year. I believed whole heartedly that i would not be here writing this today. I bought christmas presents birthday cards months in advance, got my affairs in order, then stopped and regrouped. And as quick as i was to doubt my recovery, i noticed my body was trying its damn harest to right its self. With a lot of hard work and shoves in the right direction. I can safely say im astonished. Im no where near out of the woods yet. Not by a long shot. But i feel healthy. My body is functioning as it should!!
Again. I know first hand how hard it is. That struggle is ten times harder when you loose faith. The liver is a remarkable organ, diagnosis or not. I would seriously advise just giving it a real good crack at the best chance you possibly can. Which you already have - which show you do still have some hope. So do your liver a favour, keep up the good work, look in to getting some answers and be happy. That the ultimate goal on this earth isnt it? And you have been.bless with the opportunity, so sieze it.
I will also echo Katie's comment. She made a lot of good points. She has been helpful to me as well, and I've found her to be very knowledgeable.
Looks like your bloods are normal, ultrasound normal, and fibroscan just about normal too. 6.1 is at worst just the early stages of fibrosis, which from what I'm aware of, is reversible. Albumin and bilirubin are also in normal range, and your GGT normalized. This is all great! On top of all that, your GP doesn't seem concerned either.
You mention being a heavy drinker for 15 years. How heavy is "heavy"?
Heavy means almost daily, 1-2 liters of beer average.
Fibrotest just came back as .05 for fibrosis- F0. So I have some hope. However, looking through people's posting history here, there are so many examples of people with normal bloods, US, etc., and over months to years it turns out they had serious liver issues that were dismissed or minimized by docs until end stage symptoms made things obvious.
You don’t just have normal bloods. You had a normal ultrasound, normal fibroscan and fibrotest too. I don’t think a lot of people have all of those normal and have serious liver problems. I’d go with what your GP says, but it won’t hurt to cut back on drinking.
Thanks for the comment -- I would say bloods aren't entirely normal, the AST/ALT ratio is off. The Fibrotest is based on blood work--it's a better test than a standard enzyme review for alcoholic liver disease but is still limited, and the Fibroscan suggests possible fibrosis.
Will hope for the best and prepare for the worst I suppose.
De ritis ratio is not used to diagnose pretty much any liver disease except for alcoholic hepatitis. A 3:1 ratio is pretty much always alcoholic hepatitis. That being said no doctor will even acknowledge it if both ast and alt are in normal range.
As Katie mentioned, the AST/ALT ratio isn’t relevant if both are normal. Your fibroscan is borderline F0-F1 at worst, and your fibrotest suggests F0. I can see why your GP isn’t concerned.
As for weight loss, that may be explained by cutting back on alcohol. 1-2 liters per day is probably a good 300-600 calories...each day. And that’s just from the alcohol. If you’ve adopted any other healthy habits like eating vegetables or exercise, that would add to the caloric deficit.
I appreciate your comment, but it absolutely is the case that one can have cirrhosis with normal AST/ALT, etc. levels. That's mentioned in pretty much every diagnostic guide/research article on diagnosing cirrhosis.
You’re right. But do a lot of people have cirrhosis with normal bloods, normal ultrasound, normal fibroscan and fibrotest? I doubt it. I’d go with what your doctor says.
From the literature, ultrasound can miss about 40% of cirrhosis cases (especially in the absence of fatty liver, which according to my Fibroscan I don't have--CAP 200), and Fibrotest can miss 20%--comparable to biopsy. Fibroscan is also not perfect, and the cutoff ranges are just that--estimates. Given my history and symptoms, I am not very confident that my test results are an all-clear, but of course I gotta keep pushing to get to the bottom of it all.
Here's one of many articles on the topic. Basically, US can confirm if someone has cirrhosis if it shows up, but US is not good at excluding it--cirrhosis/fibrosis can easily be missed if there are no other factors like fatty deposits or lesions..
Wow, that’s insane. That scares me too. I’ve had elevated enzymes for a while now, and ultrasound was normal.....
Keep in mind though, this study was done in 2003. I don’t know to what extent technology has changed. It’s just insane to me that an ultrasound can miss cirrhosis.
There are plenty of newer studies confirming the fact re US. If your ratio of AST/ALT is close to or less than 1, you should be fine and there is no reason to fear the worst if you don't have several of the symptoms. Elevated enzymes could mean some inflammation or fattiness ongoing, but that can resolve. Drinking history for alcoholic liver disease matters too--a few years is unlikely to have caused serious damage, but the longer one keeps it up...
Damn I wished I had done the reaserch earlier. 5 years ago I had a test done where my AST/ALT ratio was inverted, and yet no mention of it from my doc. I am responsible for harming my health, but GPs should be more versed in interpreting liver panels.
My AST/ALT ratio was 0.7 in my last test, and ALT has been just under double the upper limit of normal. My drinking history is similar to yours. I’ve been drinking about 18 years, and an average of 7 liters of beer per week (less during the past 4 years, and MUCH less in 2020). Thanks for the info!
1 - 2 Litres of beer a day ! Thats not even 4 pints at the Max, unless you are drinking super strength beer you are hardly at the top the end of drinkers ! My dad has drunk 2/3 pints of Bitter a day for over 50 years and his Liver is fine. I personally don't recommend drinking everyday, but my whole village used to and they didn't die on those amounts. I have known 3 people to die of Cirrhosis, one got up to 4-5litres of vodka a day and died at 42 years old, 2nd used to work in a pub and drink all day and then go home and drink 4 litres of 7.5% cider and died at 50 years old , 3rd not sure about his amounts but he was a daily vodka drinker and died 51 years old.
The main issue is your mental state, you have got it in your head that you are ill and stuck in bias thinking. There are 1000s of people that would have an arm or leg chopped off in return for your test results !
Sensitivity to alcohol varies from person to person. The regularity of its use is more important than the dose. It makes no sense to talk about a safe dose of alcohol with regular drinking.
You are making quite a leap from what your results have indicated to cirrhosis and from there to end of life care. Have you stopped drinking? That is probably the number one most impactful thing you could do to save your fiancée and family from any or further pain. From the way you are responding to people it almost sounds as if you want something to be inevitable that most certainly is not. You have a chance here to heal your body if it is in fact injured and live a long and full life with your fiancée. This is a chance many would give anything for and I hope you make the most of it. Cheers and best to you.
Definitely stopped drinking. And I didn't mean to minimize the struggles of those on here in a serious state-- there are many inspiring tales of committed fighters, and I admire their toughness.
From what I understand, fibrosis caused by alcoholic liver disease tends to progress, unlike that coming from other causes. Wait and see looks like the name of the diagnostic game from the many commenters in this community, which is difficult to go through. I don't want anything to be inevitable, but neither do I want to wait until things are unbearable to know what's going on and how to act. Kind regards.
Hi Str8jacket, have you been referred to a liver specialist? To reassure you and the other members of this thread - the diagnosis of liver cirrhosis is made by not one test but a broad spectrum of bloods, scans and an individual assessment of a patient. No test is fool proof but taken together with a comprehensive patient history and assessment you should be able to be reassured by the validity of your results. If there are concerns about how your individual results have been interpreted then could I suggest discussing them with your GP or liver specialist? I'm sorry that this is a difficult time for you and hopefully if you have further appointments with a medic, they will be able to provide some clarity and reassurance. Hope that your next appointments go well - take care,Trust10.
Hello. I really don't want to minimise your anxiety, as I am in the same place (I can't get access to fibro testing but normal bloods, ultrasound and MRI). However it seems everything really is clear for you. You have done lots of research, but the tests are what they are - no or very little fibrosis. 15-20% of people develop angiomas just as part of getting older. It's no wonder you've lost weight when you've cut out the alcohol. I wonder if now is the time to look at some mental health support for Health Anxiety? CBT is the treatment recommended by NICE guidelines. I hope you don't take that the wrong way, it is meant with the best of intentions.
I had similar symptoms to yours starting Feb/March last year. I’m 31 and drank once or twice a week and excessively the past year or two (I was also dabbling in another substance traditionally seen at parties and a moderate cannabis user) Never daily. Not even weekly prior to that. Wrinkled fingers, odd smell, extreme (like 100x worse than before) health anxiety. My SWE (Fibroscan) came back on average well below what I read is the cut for F1, but my GI put me down at F1 anyway. All of my other tests were normal. I’m actually a little ticked my doctor graded me higher just on symptoms and a slightly enlarged spleen—I don’t think he actually saw fibrosis. Anyway, he sent me on my way and sort of just said cut out alcohol. Which is what he says to anyone he suspects could have even little fibrosis. I think he said I could have a beer but not regularly. Haven’t had one going on a year. And based on what you said, I’d see where abstinence gets you. I’m really not entirely sure I can or should have alcohol in the future. I didn’t see me as having a real problem at all.
ANA’s came back clinically positive slightly at first and clinically significant after 6 months. Isolated Anti-SSB which is extremely rare and ill defined as to what disease it indicates.
Maybe you have gotten autoantibodies tested? If so anything?
Actually I have, IgG elevated, others not. Consistent with cirrhosis/chronic liver disease. Stools have become quite pale since my original post. Also had a CT scan with contrast, nothing found. I'm thinking the diffuse nature of alcohol damage may just be very difficult to pick up on imaging. Got a referral to a hepatologist who may give me an official diagnosis as the gastro is not interested in considering liver matters--seeing him in a week.
Also, if you're concerned about alcohol, better to cut it out. I wish I had ten or even five years ago-decline has been fast now. Hard to believe I brought this on myself.
I was watching two YouTube videos. One was from Mayo Clinic and another American Liver Foundation. Specifically regarding ALD. They specifically said alcoholic fatty liver, fibrosis and alcoholic hepatitis are reversible. Cirrhosis is not but that’s an F4 on the fibroscan. I’d assume F3 would be more unlikely to fully regenerate unless one is in really good health otherwise. If I had to guess, we may have had milder form of hepatitis. There may be some fibrosis but an F1-F2 will simply require abstinence and overall just a healthier lifestyle. I know from my personal experience, everything pretty much goes back to normal around 6m-1yr. The health panic is completely understandable. But it does make healing harder. The liver takes a beating under extreme stress too. I use peloton—a workout bike. It helped tremendously. I’ll check in if you have any updates later. I find it helpful that we both had very similar symptoms—especially the pruned fingers and digestive issues. Beware of high triglycerides and cholesterol—I took a statin for a few months to intervene.
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