I was diagnosed with 'probable cirrhosis' 6 years ago, based on a US and LFTs. I was drinking heavily at the time, so it was a shock rather than a surprise, and I took it at face value. I've been seeing a gastro team ever since, but have never been given a prognosis or any indication of whether the condition has been getting better or worse. I have had several ultrasounds and the only thing I've been told is that there are no signs of ascites or cancer, and that my liver is 'consistent with cirrhosis'.
I gave up drinking, and feel so much better for doing so. My LFTs are now normal, and have been for some time. Today I had a fibroscan (my first) and was told that I have a score of a low 3, where 4 is cirrhosis, and that with changes in diet and exercise I could get it down to a 2. The radiogropher was very clear that I don't have cirrhosis, but TBH that's all that went in, as I wasn't expecting to hear that, and didn't know I was getting a fibroscan, so hadn't given it any thought. I think I saw figures of 268 and 14 on the screen, but they weren't mentioned when we talked about the results, and until I got home and started googling I didn't know their relevance.
I realise that people here can't know for sure, but does that sound right, and if so, what does it mean? I had already spoken to the liver nurse and got the fibroscan as I was leaving the hospital (she still didn't think it was necessary, but agreed to it as I said I needed a baseline), so I didn't have a chance to ask her any questions. I assume that I will get a follow-up letter which might give me more to work from, but I asked if I would still have to declare cirrhosis when applying for insurance, and was told that no, I didn't have it, so I know I haven't misremembered that.
Is it likely that I didn't have cirrhosis in the first place, or that it has improved? Is a score of low 3 fatty liver or fibrosis? I am very relieved, but more than a bit confused.
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SueDenim100
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There is a lot of ambiguity regarding liver disease and what stages, types and aspects of liver disease mean exactly, not even the experts seem to fully know and I know from personal experience it’s highly frustrating.
The good news is your liver seems to have been in a period of healing itself for your kpa score to fall. The other score is your cap score and measures the fatty ness of your liver, yours is quite high, but your liver stiffness is in a range that definitely means fibrosis, but depending on the cause there seems to be different explanations.
I was hospitalised last Match with jaundice and ascites and after a fibro scan my cap score was over 360 (it goes to 400) and my liver stiffness was 22.2kpa. It’s a 144 and a 9 currently so I’ve went from likely decompensated cirrhosis to what they are saying is now moderate fibrosis.
What that means is my liver is still scarred, yet my MELD is a 6, Child Pugh an A and my Fib4 is 1 point something. All my doctor says is my liver has remodelled itself and that my prognosis is excellent, but I still have to have bi annual scans and bloods taken for now and that my liver is still scarred and damaged and will unlikely go back to normal or 100%. I’ve been told if I can get it down to a 7 it’s as good as it’s likely to get, but if I drink again and eat crap every day it can quickly lead to cirrhosis.
I was never diagnosed exactly, but it did take 9-10 months almost my bloods and LFTs to get back to normal ish levels. You need to get some clarification I you can as to exactly what type of liver disease you have and what stage. Good luck, carry on what you’re doing, try and that fatty liver level down as that will help lower the stiffness levels too and help any scarring heal, it won’t disappear, but it can heal. Cirrhosis is where the scarring can’t heal, but tries, only to scar over again and again until it basically stops functioning. Take care.
Thank you so much for your reply. I don't know what any of the figures mean - is the 14 likely to be referring to liver stiffness, and the 268 a KPA score (I can google what that means if so)? I don't know if it has fallen, as I was never given a baseline in the first place - the diagnosis was based on blood tests and an ultrasound. I asked then how bad it was, but was told that the only way to be sure was in a post mortem. TBH at that point I was still reeling from the diagnosis, and concentrating on giving up drinking, which was definitely the cause of the disease, so I wasn't too concerned about being told, in case it made me think there was no point in getting sober.
My liver has never been decompensated, but I definitely feel a lot healthier than I did when I was diagnosed. I would very much like to know whether I have cirrhosis or not, partly for my own peace of mind, but also so that I don't have to declare it on insurance applications etc.
Now that I have figures (although I need to see the numbers I remember from the screen in a letter, as I'm not certain that I've remembered them correctly) I can work on lowering them, which is so much better than relying on a vague 'nothing new seen' in response to an ultrasound.
I do know that the radiographer was very happy with the result, and congratulated me on turning things round. If the figures were ambiguous that wouldn't have happened, or am I kidding myself? The way she explained it was that fibroscan results went from 1-4, and showed me a bar on her screen with coloured markings showing the different bands. Mine was in the lower part of 3, much nearer 2 than 4, which she said was good, and that I could get it down further by losing some weight and taking more exercise. I've been quite (happily) tearful all afternoon, but google isn't really helping me to understand how happy I should be.
The 14 will be the kPa - stiffness score and 268 is the CAP score which is the amount of fatty change in the liver.
What degree of fibrosity (F0-F4) the 14 kPa represents can vary dependent on what the underlying cause is deemed to be and each different type of liver disease has it's own bar on the fibroscan score chart which is the coloured bar thing you describe.
Don’t Google as it will leave you in tears, it did me and I feel your frustration. The 268 is the cap score and you can get that way down as I did just by staying alcohol free, eating a healthy diet and regular exercise, I had what they stated as an extreme fatty liver.
With alcohol related liver disease, the bar (no pun intended) seems to be higher in terms of liver stiffness correlating with cirrhosis for some reason (I’m told it’s because a damaged liver through alcohol is more likely to heal and recover and certainly function better once the cause of the damage has been removed and stay that way).
I’m no doctor but I was told anything over a 15/16 if it’s alcohol related is cirrhosis, but it’s lower for none alcohol related liver disease, but even a 15 could be early cirrhosis or pre cirrhosis, again it’s all confusing and different doctors and hospitals and even countries seem to have their own way of staging and categorising liver disease.
They also go off symptoms, I was showing signs of decompensated cirrhosis as I had jaundice, acites where I had to be drained of 5.5ltrs, massive muscle loss, malnutrition, but some important vitals were normal like my platelets and INR which are also key factors in determining cirrhosis. Usually those with cirrhosis have really low platelets and a higher INR.
You can definitely get that Kpa score down as well, as I did. Mine went from 22.2, to 19 and all the way down to 9. You really need your current results checked over by a liver specialists like a hep doctor, however, not a nurse or the person doing the scan.
That said, my own hep doctor said while it’s now unlikely I don’t have cirrhosis based off the totality of results like my bloods, LFts, US and Fibroscan, he wouldn’t be able to say for 100% certain and no-one would unless they removed it and placed it under a microscope.
All I know about my own liver is that it’s remodelled itself after a spell of healing through abstinence, a healthy diet and regular exercise, it and my spleen are normal size now after both were enlarged or inflamed as my doctor put my liver as following my alcoholism. My bloods and LFTs are now all pretty much out of the red zone if you like too.
I have a few symptoms like spider nevi, a droopy larger right breast and aches and pains around my joints and muscle issues, but my doctor said that’s likely just as much a condition of the damage my alcoholism did and any liver damage, I also have alcohol neuropathy which is 100% alcohol damage.
Again it seems your liver health is trending in positive way now so the aim is to get that cap score lower and with it the liver stiffness score which I’m sure you will achieve and wish you nothing but the best as I know how scary it all is, but the liver is an amazing organ and last March I likely had decompensated cirrhosis or the onset of cirrhosis. My liver was failing with alcohol hepatitis.
I was stick thin at under 11 stone rather than my proper weight of 13.5, yellow with a swollen extended stomach, a raging alcoholic, malnourished, and dying unable to walk and barely lift a mug of tea and fearing, after reading Google, that I had a year or two years to live and would need a transplant. I calculated my Meld score from my bloods back then recently and it was 17 which would have made me eligible for a transplant in some states in America that’s how bad I was.
I still have to have scans and bloods taken, mine are due in June I think, but my doctors are hopeful they can discharge me as an outpatient, the bigger struggle going forward is staying sober otherwise I know my liver won’t be able to recover a second time round and that should I hit the booze again, I’ll end up getting cirrhosis 100%. I’ll never touch a drip again though, I don’t need it and my life is 100% better now sober even if my liver isn’t 100% nor maybe ever will be.
Good luck and take care, keep doing what you’re doing and try and seek more answers from a hep doctor.
Please don’t be offended, but when you class yourself as a raging alcoholic does that mean you were drinking from the moment you got up? How much did you drink? I have been diagnosed with cirrhosis caused by Hep C but the doctors tell me alcohol was a contributing factor. I only drank at weekend, and then it was wine & a few G& Ts.
No offence taking, I was drinking 3 bottles of 70cl whiskey a week towards the end and yes sometimes I’d wake up and pour myself a whiskey and I’d also carry those little bottles you get on planes with me so I could sip on them when out and about. I hid bottles around the house too. My wife actually found a small bottle underneath a guest bed a few months back when redecorating the room, she knew I was a heavy drinker, but not to that extent and it’s quite shameful really.
I knew I had it bad when I would get extreme shakes if I hadn’t had a drink, that become apparent about 6 months prior to my hospitalisation and hadn’t happened to me before that in all my decade plus of heavy drinking.
I basically become dependent on alcohol. Luckily for 2 weeks prior to my hospitalisation I was weening myself off it and had no choice really as every time I sunk a whiskey, I’d vomit it back up, same with food.
So my detox was relatively straight forward while in hospital and I was taken off of detox after 2 days while in there. I’m now a year and a month in sober and it’s been easier for me because my drink of choice was always whiskey, I could always take a or leave larger or beer or wine, in fact I rarely drank anything other than whiskey.
If you were only drinking a small amount at the weekends, it’s very unlikely that was a major contributing factor to your own cirrhosis, although alcohol to any compromised liver is a deadly toxin, it’s poison full stop.
I think with some doctors it’s easier for them to pin the likely cause of cirrhosis or liver disease on alcohol and I also think we as individuals are pre conditioned to think anyone who gets cirrhosis has to be an alcoholic, when in reality that’s just not the case,
I imagine it’s frustrating for those who have to say to their doctors look I don’t drink time and time again or have to deal with almost accusatory glances… I also feel deeply sorry for those who have cirrhosis through no fault of their own and it sucks that some people drink like crazy like me and can come away without seemingly getting cirrhosis. I know I feel personally bad myself about that, but conversely feel I have been given a second chance and an almost iron will now not to give in as a result of that.
That’s said, no-one deserves cirrhosis, alcoholic or not, I wish you well and take care,
I think you are lucky in getting detailed results. I have not seen my Gastro Consultant in 3 years! I have 2 x 6-monthly ultrasounds per year and the result letter says 'no change compared to last US', so I never know specific readings. I was also having an annual Endoscooy but not had one in 3 years! I was in touch with British Liver Trust recently and the nurse said to contact the Consultant but knowing they are busy, I haven't done so yet.
I have had a similar experience until yesterday. I think it was pre-Covid when I last saw a consultant. The appointments have been on the phone, and consisted largely of 'your US results showed no ascites or cancer. I'll book you in for another one in 6 months'. I can see my results online if tests are arranged by the GP, but hospital ones don't show up, so I was no wiser either.
There has often been a year between scans and consultations, but I've felt too guilty (for causing the problem with alcohol) to chase them up. This time was a face to face meeting with a liver nurse, and I think they work far better than telephone conversations. Apart from being able to strike a rapport, I was on the premises and able to go for an immediate fibroscan. I'm hoping that there will be a follow-up letter with numbers on it - I assume so, as they will need to update my GP and I'll get a copy. When that comes, I'll have more to work on, but in the meantime I'm holding onto the words 'not cirrhosis' and 'reversible/improvable'.
Don’t feel guilty for ‘bothering’ them, this is your health not theirs and it’s important you keep on top of your health at all times. I know after I come out of hospital most of my appointments were brief and I did get the impression they didn’t really want to know as I was just another alcoholic who they have seen come and go many a time, but once I demonstrated I was serious about my health and going sober and staying sober and the more clued up I become about my own liver disease, the more they responded back and become more engaged.
I do find it scary at times I know more about liver disease than my own GP. They go to uni and study medicine, but a good number of them are textbook doctors, and have no real understanding or experience of complex health conditions such as liver disease and couldn’t tell you anything you couldn’t easily find out yourself via a bit of layman’s research.
My own GP just looked at my charts from hospital once and said when I was seeking help with my sore knees and joints, well we can’t give you anything to help with the pain as you have cirrhosis.
Not even the hep doctors would diagnose me with cirrhosis and I wasn’t looking for medication I was looking for answers as to what could be causing my aches and pains and how best to manage that and maybe finding a way to stop it going forward.
It’s not their fault really, they are underfunded, understaffed and under qualified and it doesn’t help when the health industry is centred around getting as many of the patented money making pharma into society as possible for the big bucks to keep rolling in.
What seem to be the problem today sir?
My knees, they are killing me.
I see, could be bone disease, here is some amitriptyline, if things don’t improve in a month, make another appointment.
That’s awful, from what I understand the guidelines (U.K.) state people with cirrhosis at least have to be seen to every 6 months for scans and bloods either by or by both a GI and Hep doctor. I’ve found not even with my own liver issues, but with my health in general, you have to be your own advocate and push on at your GP and doctors, I pushed and pushed for more bloods and scans as all I got from the start was “you’re bloods are improving, you’re getting better, you’re a well man, no changes etc.” Now I know the ins and outs of my records, my bloods, what they mean or don’t, what I can do myself to improve my health and so on. I’d go back to your GP and ask to see a GI or hep doctor and for further scans, good luck and take care.
I believe it's worth looking into medical facilities that do clinical trials, as I found sometimes you can find there to try. Nutrition's is another option to look into with a health nutritionist. Not always they work buts its worth trying. Bakers IDI in Australia (a department of The Alfred Hospital mainly research for Heart & diabetes including other things that gets linked other health & Medical) had an online article that they find more & more 40% of the FATTY LIVER patients is not related to diet & behavior. So, they are looking in Genetic how much that can be the cause. So, if you find you are getting better than you are very lucky. I'm not so lucky. We do need to remember there is deferent what the cause is its still extremely important healthy lifestyle - to get better- or to avoid as much possible not get worse.
They right in that article it used to be called Alcoholic Fatty Liver. Now there is Alcoholic Fatty Liver(AFLD) & Non Alcoholic Fatty Liver (NAFLD), because they used have that it comes from Alcoholic. Then they saw avoiding being Alcoholic is not always the help. now they pick up it helps for many people but for all. for many people it's needed to find more research.
We need to remember that there is a lot we are not being told & a lot that's not known. The liver is the biggest organ & glands of our body that does hundreds of functions, so it's very complex.
Always worth searching again & again to more how you can help your liver. It should give lots of confidents the fact that you're getting better.
Your explanation makes sense. I was constantly told to stop drinking for about 10 years due to abnormal LFTs. It was only my insistence that I didn’t drink that much that made them do further investigations. That’s when the y discovered I had Hep C.
Congratulations on the two plus years sobriety, amazing, well done. Alcoholism is ambiguous as well, on the one hand the drinks industry wants you to drink 24-7, yet the health industry will consider you an alcoholic if you drink more than the recommended weekly units even by a few units. Alcoholism is also more than just about drinking 24/7, it’s a mental health issue for many and can be just one symptom of underlying issues, mentally, physically and emotionally.
We all know it’s poison and extremely toxic to our bodies, yet its packaged and sold so well to us and it does taste nice and takes the edge off like nothing else.
It’s a vicious circle. Today I personally refuse to call myself an alcoholic or a recovering one despite knowing that’s what others and the medical world see me as. I was one and I was in recovery, but it’s been over a year now.
This is just my own personal take on my own problem with alcohol by the way.
I don’t see it as a disease either, it’s certainly an illness, but it’s a temporary one that can be cured and fixed by oneself and often without medication or the need for hospitalisation like real diseases.
What I’ve learned and again this is just me, the real issues with my own alcoholism wasn't with alcohol per se as I don’t like alcohol, it was with whiskey. I have an addictive personality so it stands to reason if I like something like whiskey, I’ll like it more and more and at some point because i was drinking it daily, I will become dependent on it and I did. I do miss it, but I miss only what it gave me which was a temporary form of relaxation, some temporary form self medication and of course, the taste of it. Now I know I do t need it for anything really and can say no to it.
It does help mind, when your drinking almost killed you and doing so again will mean an early grave, it’s a great motivation when it’s that or living and as a dad and husband I have a whole lot to live for and don’t want to die, and certainly not over whiskey…
Couldn’t agree more especially regarding the wanton sale and advertising of alcohol, but I’ve long accepted it’s my problem not anyone else’s and if I can’t drink in moderation then it’s not for me. Again I refuse to condemn myself as having some kind of malignant condition when the reality now is I don’t. But people have their own views on alcoholism and alcoholics and some think it’s something that someone will always be and that it’s also a disease and that’s up to them. But I’m not having anyone call me an alcoholic or a recovering alcoholic as I’ve recovered. Maybe that’s just me being me and refusing things and me trying to control everything and take command of it all…
Yes, I believe it is possible to recover too! It doesn't have to become your whole life identity. Happily more therapies/ coaching programmes are adopting this non " diseased forever" approach. Good luck to you x
I understand your perspective as the daughter of an alcoholic, plus your point about addictive personality because I believe that I like my father, I have an addictive personality.
My fatty liver disease is probably due to excess sugar, my seat tooth which my father had too.
It is easy to forgive him now that he’s gone. However, his alcoholism destroyed our lives. As children we were embarrassed by him. We made excuses for him, we hid our feelings from our friends and didn’t invite people back to our home if my father was around.
He lived to the ripe old age of 80 years and although I nursed him to the end. I was angry that he never admitted that he was an alcoholic and he never said sorry.
I'm sorry to hear about your journey with liver disease and it's all too familiar. My story is a bit similar and I have to agree with Grassroots on there being a few unknowns with those in the early stages of Cirrhosis or late Fibrosis.
The fact that you never had a fibroscan, MRI, or Biopsy prior makes your story more complicated. If you had a fibroscan from the start it would give a baseline and then a repeat after you removed the cause of the liver damage which would be alcohol. Congratulations on that btw. The 2nd reading from what I understand is going to be the more accurate state of the damage combined with your blood work. A MELD of 6 is considered normal but I found out that's just a measure of clinical outlook over different periods of time. So you could have a 6 and still have Cirrhosis, which is what my first MELD was. A MRI would give a much more accurate picture of the state of your liver. That is what I would request if I were in your shoes.
I actually came on here to quickly get some info I posted so I can email another hepatologist to try and get their opinion on just outlook. My MELD was 6 like yours but has gone up and back down a few points over 2.5-3 years. My last visit I was told I could go from MRI's every 6 months to Ultrasounds but that's only after I said I'm moving back home to be with my family after my divorce. My gastro doctor is curious why I haven't been released to her because she seems more optimistic on my outlook. It's confusing, terrifying, and of course life changing. What I have gathered is some specialists are just far more conservative than others in communicating the severity of the disease. They have a valid reason for doing that with people who damaged their liver from alcohol like I did. They say that 99% of people who drink heavily always go back to drinking after being diagnosed. I didn't believe that at the time but I 100% believe that now seeing and hearing people do just that. So I think the more conservative approach is to deter drinkers not to drink which you absolutely can never do again even if they say your liver miraculously went back to normal. You and I are fortunate in regards to being able to remain sober because countless others cannot maintain sobriety.
Thank you, you appear to be fully aware of the hurt and damage you have caused to your loved ones.
My father was also suffering from mental health issues due to the death of my mother aged 38 years old.
More needs to be done for people going through a reactive depression which is a normal life process.
Without help, many people cannot come out the other side.
My friend’s mother and my sister-in-law were drawn to alcohol during the menopause. Both severely depressed and reaching the stage of being in the gutter.
Both have supporting families which after many years of abuse, saw them through to the other side.
For women, there seems to be virtually no help in Scotland.
I am not one to judge anyone. I have witnessed alcoholism in my own family and friends and you are 100% correct. Rather than the medical model, we should focus on the social model which in my opinion makes sense.
A support network should be in place to help people when they need it.
Yesterday, I read about a 14 year old boy committing suicide due to bullying.
More needs to be done to stop these things from happening.
Life is an undulating cycle. At some point, we will all need to lean on the shoulders of others. Social media has its place but human contact in a crisis is a life saver.
You should be proud of yourself. You have faced your problems head on and have taken ownership.
I wish you well to face the future with insight and wisdom to recognise when the journey gets tough and you need a helping hand.
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Fibroscan results
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