First post and have to say, read a lot of posts and can only thank everyone who contributes and helps educate others about their own personal way forward.
So here is my question. How long does it realistically take ( with doing everything possible ) to regress from F3 severe fibrosis to F2?
I am not a heavy drinker and was always very active but unfortunately took little responsibility for my diet and my love for sweets and sugar. Never heard of NAFLD or as my liver specialist calls MASLD. It was all very confusing and then you read about the scary spin off called Nash or is it now MASH? So lost 4 stone, 6 ft 2 so makes a difference. And was carrying a lot of it around my abdomen. All bloods were normal base the ALT:AST which was about 0.9 but not elevated. My ultrasound showed moderate fatty liver and my fibroscan was F3. This was the news that made me do my research and this radical intervention since Jan 24. My Drs advice was to go on a low sodium and low sugar diet and not a drop of alchohol. I have a fibroscan in another 4-5 months and hoping to see some regression with all the weight loss, plus gym 4x a week plus loads of walking everyday. Am I being unrealistic to expect regression to F2 in this time?
My specialist seems to think it’s possible also anything else that that other F3 er’s have done to bring their fibroscan scores down?
Sorry for the long post and really good to be part of this helpful community.
Smiffy
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Smif56
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Hi there, I can only go off my own experience, but March last year I was hospitalised with as ascites and jaundice and a fibro scan had my liver at a cap of over 340 and a Kpa of over 22. 12 months on its down to 140 and a 9 respectively which puts me at moderate fibrosis.
I’m hoping to get it down a few more if I can when my next scan is due in June, but I’m told it’s unlikely as it took a year almost to get it to where it is now through giving up the booze, healthy eating and regular exercise. I’m sure if the damage isn’t down to medicine, alcohol or an illness it can be reversed all the way back to zero. I could be wrong, however.
I think you should not focus too much on fibroscan results. It is not so accurate. It is always some estimation especially when having middle stage F2, F3 (the lowest result is F0/F1).
I’m told fibro scans are pretty accurate, but like any scan can be skewered based on whoever is operating the scan to start with and that even the results can be interpreted differently by whoever is in charge of interpreting them on your behalf. A GP may interpret them differently from a hep doctor for example.
That and other factors can skewer results like having a scan on a full stomach, having scar tissue or ascites can make getting an accurate scan difficult too, and of course inflammation can lead to a higher score.
When my fibro scan went down to 9kpa, the nurse bleated out it looks like you don’t have cirrhosis, my hep doctor, however, said well, we can’t really tell, only removing my liver and putting it under a microscope would he be able to tell fully, but the signs were all good and that my liver is likely in a fibrosis state now which is still scarring, but moderate. His words were ‘it’s remodelled itself remarkably, but that’s what a remarkable organ can do’, he was surprised, but he’s seen it all before thankfully.
That’s why they like to go off a totality of results from scans, bloods etc. not even a liver biopsy is now considered fail safe or the golden standard.
Back to a fibro scan, it’s pretty accurate at measuring the stiffness of the liver which is a good indicator of how fatty or cirrhotic a liver is. Obviously the cap and kpa score which aligned with bloods and maybe an MRI and an US scan all together would give a very very detailed picture of one’s liver health, but even then such things may not paint a full picture. I’ve learned your platelets, INR and kidney function for example are all good indicators too as well as sodium levels, total protien etc.
Thankfully my own is looking way better today than it was a year back where I’ve taken my bloods and LFTs from when I was hospitalised in March 23 and used various online calculators and back then my meld was a staggering and scary 17 which would have made me eligible for a liver transplant in some states in America, although had I needed one I wouldn’t have been given one as that would have required me to be 6 months sober, I’m coming up 13 months sober soon. It’s a 6 today.
I guess the key to liver disease of any kind is cutting out the source of the damage, allowing for time to heal to get that inflammation down and working on other things to get bloods and LFTs back to a normal level or normal ish. Mine are almost normal now and positively brilliant for me really given my later history whose bloods and LFTs for the past few years where I become a fully blown raging alcoholic were shocking, in their hundreds and some in their thousands at times.
The liver really is a remarkable organ as my doctor says, and although the odds are stacked against me, I’m determined to get my cap score even lower and my kpa lower, that and my bloods and LFTs at the ‘better’ range of normal as there is good normal and not the worst normal.
I made the mistake of thinking when my bilirubin was say at 20 that it was good for example, my doctor said it needs to really be 6 or lower, it’s currently a 6. It was over 80 at one point so I looked yellower than Homer Simpson himself.
Well false positive or false negative results happen sometimes without obvious reason. Anyway biopsy is considered to be a golden standard. But of course this is so true "however, said well, we can’t really tell, only removing my liver and putting it under a microscope would he be able to tell fully".
"When my fibro scan went down to 9kpa, the nurse bleated out it looks like you don’t have cirrhosis" I think it is not so easy. That's why you cannot rule out/confirmed cirrhosis only by Fibroscan result.
They do, from what I’ve been told, however, that usually happens due to inflamation. In hospital they tied and failed to get a fibro scan reading due to ascites, a month after that I had another and it come back inconclusive whatever that means and then I had one in June which give me the 22.2 and a month later it went down to 19. That’s when I started getting letters and phone calls from the cirrhosis support team, but I had it fixed in my head if I can get it to 15 with alcohol liver disease that would mean no cirrhosis. I was amazed in December when it come back as a 9.
I had an MRI in January last year that said my spleen was enlarged, I had extreme fatty liver but no signs of “definite cirrhosis”, then I started turning yellow and got ascites. I had hoped that surely the MRI scan was right and I couldn’t go from no cirrhosis to cirrhosis in a month or so.
I believe for at least 2 years prior to my hospitalisation my liver was pre cirrhotic as all the signs were there, my bloods, my LFTs and towards the end the alcohol hepatitis took me to the point of no return unless I stopped drinking which has given me a fighting chance of reversing my ARLD.
I’ve also had Covid 3 times and 2 jabs and since all of that, my general health got worse and I’ve never been the same, so I’d love to know what effect all of that has had not just on my liver, but other things too.
Hi, we need to toil and be optimistic. Btw do you feel weakness and fatigue as I am experiencing such, lost around 10 kg since January 29 th. I have another issue with moderate itching which I presume due to steatosis or NASH component. My fibrosis probably F2-F3.
Hi Roy2503. I have had sone itching but seem to be able to battle through the fatigue and walking about 20000 steps a day to try and kick this. I thought that I would due to my love of sugar. Not going to be easy and have the support of my family which is mega important.
Yeah...it's a physical as well as mental battle, family support is of utmost important. I got prescription of semaglutide oral and trying to kick 10000 steps as well some weight and aerobics, let's see how it helps. another drug just approved Resmetirom but availability and pricing to Asia region may be uncertain.
Not sure what your diagnosis is but anyone with portal hypertension and varices has to be very careful with exercise and high level cardiovascular / aerobics is not recommended. Such exercise can increase portal blood pressure and worsen varices which in the worst case can rupture. Everyone needs to check with their hepatologist what level of exercise is advised.
The carb before bed guidance is for folks with cirrhosis where the long night time fast can end up with muscle wastage so it's not bad guidance just not appropriate to your own situation.
True but many folk like me are diagnosed with cirrhosis when it is cirrhotic in parts.A jelly with pebbles, there is still time to rectify this the liver still has the capacity to store energy.
I took the view that cirrhosis would kill me anyway so I did the opposite ate no carbs after mid say fasted for 36 hours a week and lost weight.
I felt I could exercise had more energy so lost more weight.
I had a body composition monitor and kept an eye on my lean body mass.
In all the weight loss this has only gone down from 85 kg to 82kg so I knew my liver was working sufficiently well.
I felt tremendous energy previously I slept a lot in the day now never ever.
I restarted my digital nomad business went to Spain made money and exercised swam in the sea, surfed my inflatable matt played tennis.
Lost more weight.
The liver services are broken in this country the diagnosis of cirrhosis is too broad.
True some are down the road its a case of living with it sone like me are cirrhotic in parts.
I will die with pebbles in my jelly just as I will die with scars on my skin but it will not be the cause of my death.
I am 60 heart rate 52 bpm a blood pressure of 110 over 72. My ferritin is down to 80 it was over 500.
I lost the qt blip on my ecg that I had from anti depressants.
I play football my heart rate goes up to 177 which is too high apparently.
I chose life, I took a risk and it worked.
I monitored my lean body to ensure there was only fat being burmt
Saying follow the clinicians advice is meaningless, the UK is the third world. Sufferers of cirrhosis are considered to be the authors of their own demise.
Is there a risk that it might have gone wrong?
Of course but better to die fighting to live than accepting death based upon the harmful consumption of carrbs late in the day because you have been diagnosed cirrhotic.
This post will be censored soon so copy and paste and message me direct
Very inspiring post. It’s really quite simple when it comes to our health and the journey our health takes us. Aside from inherited ‘bad’ genes, wear and tear and old age or common illnesses, it’s what we put into our bodies or don’t and what we do with them or don’t that is the cause of our good or bad health. The liver can remodel itself, mine will always be scarred, but I like your analogy of pebbles in the jelly and you can die with cirrhosis or a damaged liver and not from it, like we will with scars on our bodies, or grey hair, or no hair if you’re bald.
My own hospital and doctors are liver experts and several of them have told me that where the liver is concerned and especially cirrhosis, they don’t know everything and even more so when it comes to alcohol liver damage. It’s a disease, liver disease in all forms and stages, that affects every single individual differently in lots of ways. Yes there is the common symptoms like jaundice, ascites and HE, but you can get jaundice and ascites from alcohol poisoning, alcohol hepatitis, it doesn’t mean cirrhosis all the time.
My own doctors seems to think there is a a stage of advanced liver disease that some call pre cirrhosis, basically where your liver can go into a cirrhosis state and stay there for a period which can go one or two ways, reversing to fibrosis or full on irrhosis.
I’m a firm believer in how we deal with our health is all down to our diet. Of course medicine helps and is very much needed for some people, but the doctors don’t have all the answers, I was told look, it’s really up to me and it was and always will be.
To get better I had to stop drinking, I had to start eating healthy and I had to get in some regular exercise, your mind is also key, I had to start thinking positive and not negative, thinking right and when you’re right of mind and thinking you’ll look at something like alcohol and say to yourself, why on earth would I pay to poison myself like that.
You wouldn’t go up to a car exhaust and start sucking in the fumes or drinking petrol would you? But here we are consumed by our choices which are unnatural, unhealthy and often deadly.
I’m just learning how deadly processed sugars are for example. Processed food full stop.
It seems the answer to a nation’s poor health is through medicine, when the reality is we wouldn’t need it in the first place if we looked after ourselves and once we do need it, we slowly become dependent on meds which mostly end up fixing one issue only to cause another.
Cirrhosis can’t be reversed, but your liver can remodel itself where it can work pretty damn well even if it’s battle scarred. You have to cut out what caused the damage and then delve deep and very deep into what makes a bad liver tick, makes it better, what your body needs more off and less of and everything can be found here on Mother Earth via natural sources in our foods and plants.
I’ve spent a small fortune on ginger and turmeric shots only to quickly learn they don’t hold much real turmeric or ginger and certainly not the core extract ingredients that are healthy such as curcumin and gingerol so I now source my own fresh roots and juice them myself with skin on. I add fresh lemon juice, fresh black pepper from the corns themselves to aid digestion as I’ve learned black peppercorns can do that, I add pure shilijat, pure apple cider vinegar with mother, all of which I keep fresh which I drink several times a day. By doing so I’ve cut out all the added unnatural elements from store bought crap and now my body gets what it needs and I do that with all my dietary needs.
Lots of things we suffer from can be reversed or managed without the need to pop lords of meds or have to go to the GP who sadly a lot of them may be able to explain certain things like your blood results, take your blood, understand anatomy and stuff, but don’t really understand or know everything about the human body and especially YOUR body. Understand your own body and it’s needs better and you can be your own doctor.
Great postNow I understand why the consultant said 'on the cusp of cirrhosis'
Unfortunately when I was sectioned the physical doctor (every MH hospital has one to deal with physical rather than mental issues) for whom English was not even his second language told me you have cirrhosis.
Logically he was quite right when he said depression is a symptom of cirrhosis so we are going to stop them!
Not that that happened of course.
Too many pebbles in the jelly then it is over the tipping point.
I have the greatest respect for BLT and clinicians but I have a deep and personal relationship with liver disease.
A lived experience, I only had symptoms of extreme exhaustion, pee the colour of newcastle brown ale and pale pooh.
I did get very ill with sweats and fever and pain in my abdomen.
Having been told that I had cirrhosis I believed it was just the disease progressing.
In the end I collapsed at the GPs and was rushed to hospital.
It was a serious gall bladder infection.
This had spread to an abscess on my liver. They put in drains, about a pint of puss came off my gall bladder half a pint off my liver.
The many scans I had led me to question the disgnosis.
I got the US scan screen turned towards me.
Those of you who have seen a fatty liver will know what it looks like. A big white shiny blob.
I asked if it was smooth 'as a baby's bottom', I asked him to measure the diameter of the portal, normal.
Steatosis came back and the surgeon spoke to me and when I said I have cirrhosis he said there was no evidence of that just steatosis.
A ct scan with dye, again screen turned towards me the dye went straight through the portal, no sign of blockage.
I began to hope, I went back to Hepatology. Bizarrely although they had diagnosed me with cirrhosis no monitoring with 6 mos scans had been put in place.
I phoned the secretary 'Mr W... says you have cirrhosis and you just have to come to terms with it'
I call this 'self fulfilment' hypothesis, if a doctor makes a diagnosis they seek to justify it before questioning it.
Any way to cut a long story short I was by chance able to contact a specialist liver nurse, someone who had day to day experience of fibroscans. She sorted me out within a week.
8.8 kpa no cirrhosis and she said I do not think you ever had full cirrhosis.
Then I knew I had a chance.
It is Good Friday and I nake no excuse for drawing a parallel that my resurrection started there.
(Zone out if you are not a Christian but plenty of good behaviour can follow from things that strictly speaking might not be entirely true!)
How many folk get diagnosed with 'cirrhosis' when it is 'cusp of cirrhosis'?
How many give up?
Do the survival rates for cirrhosis reflect the true morbidiity of cirrhosis or do they reflect the psychological effect of a diagnosis of cirrhosis on behaviour?
After all if you are going to die why not pig out on that bowl of profiteroles?
Or have a vodka?
The NHS is a great institution personally I would prefer it if it spent more money on actual treatment than diversity officers but that just me.
But the UK is poor, if you think that the NHS has the resources to cure you it probably does not.
Turn that US screen towards you, in a BLT
group it was stated that 80% of cirrhosis is diagnised in hospital after actual big time symptoms. Varices, portal hypertension, ascites, HE but mine and presumably some others was diagmosed on tiredness (a good sign my current duracell bunny state of constant stream of energy in my professional work, my sport, my cultural life, my love life! Suggest it is just fine.
As well as fibroscan ELF ( apart from the gall bladder episode my LFTs have always been abnormally normal.
How many like me get sucked into the vortex of even worse behaviour unnecessarily?
Carbs before bed etc
I have asked if BLT could have a zoom meeting for folk like me.
I feel like a pariah on the drop in and NAFLD.
Folk are very ill, transplant needed or just got one.
I was even personally attacked by saying to me 'its easy for you" they are of course correct.
My cardio cascular system is like a purring V12 that runs at 48 bpm but has lots of torque when needed. That has helped a lot in sustaining my levels of activity.
But you might also have a good heart ( perhaps a V6 lol) so use it!
Another fascinating post thanks and as a car lover, I love your V12/V6 analogies ha ha. I personally prefer a normally aspirated V8. I get a lot of your grievances regarding the NHS and indeed a lot of the issues we face regarding the whole liver disease diagnosis, treatment, understanding and the plethora of symptoms that may or may not mean anything.
I was admitted last March with what they described to me as alcohol hepatitis and was told to my face several times I didn’t have cirrhosis, mainly from nurses. However one day after they couldn’t get a fibro scan result due to my ascites, I overheard a doctor say to his colleagues while stood a bit away from me “what’s the point, he has cirrhosis” which I of course went mad over and had my own say.
I just got robbed off with (by another doctor) about how I’ve damaged my liver, it’s scarred, but they don’t know how badly and at what stage etc. which I was fine with because as much as I’m no doctor, I understand the experts don’t know everything and it’s a very complicated disease with many layers, factors and conditions that effect everyone differently it seems.
After my release I was told don’t drink, cut the salt and sugar down and good luck with 28 days worth of meds. I felt is that it, what next, and well that’s me screwed, especially after going down the Google rabbit hole. So I have 2 years to live then, oh well…
Then I did my own research on liver disease, alcoholism, the lot and come to the conclusion that whatever I’ve got, I need to start working on my health and that my doctors can only really guide, advise and check my bloods and such, the hard work needed to get better was all on me.
From March last year until December last year I pushed for a diagnosis, but all I ever got was in line with advanced fibrosis/cirrhosis after my first real fibro scan come back at 22.2kpa, which as soon as that happened, out of the blue, with no explanation I get letters and calls from the cirrhosis support nurse team. That’s great, but again no-one would diagnose me.
I’ve since learned it’s because really, and this is where I must commend my doctors and hospital for their knowledge, understanding and experience, they wanted to see how my liver would react after a length of time of abstinence and healthy eating, to see if it would heal, recover etc. which it did.
It was actually my GP who is the only person during that time who told me face to face I have cirrhosis and that’s after I saw him regarding my pain in my feet, he basically said there was nothing he could do medicine wise because of my cirrhosis and how bad medication can be for the liver.
He didn’t know I had cirrhosis or not, he didn’t have the expertise to determine that, he just went off my previous symptoms of jaundice, ascites etc. and my bloods and LFTs which is a fair conclusion because I certainly thought the same. But when it comes to your health you need more than a conclusion.
That said, and this isn’t me criticising our GPs here, he didn’t even know what my feet pain were, which turns out to be alcohol neuropathy, he put it down to old age, maybe arthritis etc, so how many people get fobbed off with just medication and go home thinking whatever they’ve got is nothing or something and end up on a boat load of medication for it.
That’s why more needs done regarding liver disease, research and funding. Doctors and GPS better trained etc. because it’s a huge global health issue. However, if we all started to look after ourselves a little bit more, a little bit better, then we wouldn’t need to see our doctors and need such treatment…
Doctors and hospitals need to be up front with patients too. It’s only because I obtained my historical full medical records did I see that while I was in hospital and the nurses were saying no I don’t have cirrhosis, that the doctors thought I had decompensated cirrhosis and that’s OK with me, because they gave me care and treatment based on that which I believe helped me to stay alive and give me that bounce to be on the road to recovery. But again. We need more than a conclusion, an estimate, a maybe, a maybe not.
Back to today, I have to chase up things with my doctors like bloods, scan results and even then nothing is fully explained to me. I give up on my local GP practice, they are useless.
My recent US for example all I got back was nothing’s changed? Nothing’s changed? That’s good to know as I didn’t get any information about the scan I had prior to that. But what nothing has changed? A lesion, a tumour, what? They need to tell us more from the start and cut down the medical jargon.
You have to become your own health advocate, to your GPs, doctors and most importantly to yourself so you can better take care of yourself.
My sis in law has diabetes and suffers with it, she is so clueless bless her and I’ve told her she needs to learn as much about it and try and do everything she can, not the doctors, to help herself and I’m going to help her myself as best as I can, because it can be reversed or at least better managed than just popping a tonne of tablets several times a day which may well work to a degree, but it can’t be good on other things like your kidneys and may even weaken her liver.
Regarding the diet stuff like carbs late at night, I get that mind, people with full blown cirrhosis need to pack in carbs and protein for muscle wasting, but as you said, not every person with liver disease will need to do that nor should be advised that, but that’s what we are getting to really, it’s not a one size fits all type disease like other diseases or illnesses and because little is known or understood, especially alcohol related liver disease, it’s going to be a problem for doctors and experts to help people suffering with these issues and if they struggle, then it stands to reason the person themselves will too. Hey don’t drink… is that it? Hey, take those meds? Is that it? Hey we don’t know why x y and a, but here, take this, do this, don’t do this. Our doctors can’t win mind, poorly funded, overworked and dealing with an entitled uneducated, all consuming car crash of a society when it comes to one’s own health, health choices and thinking.
Me, I try and help myself first and I’d like to think since I left hospital last March, through remaining sober, eating well, getting just normal regular exercise and thinking positively, I’ve managed to do that and stay away from any complications that would require more hospitalisation, meds and medical procedures.
We are all different though… anyway, I’m not religious, but happy Good Friday and Easter, have a great day and take care,
Read On the Beach, the good folk of Melbourne react to imminent death by radiation by organising a no rules car race around the city streets.
Just had a pop up
'we are excited about your posts.... blah blah ....remind you of our guidelines...be kind'
I always find that when others flag up they are going to be kind or expect others are to be kind they themselves are about to be very, very very unkind.
You’ve been kind, encouraging, good humoured and stories like your own, real life experiences, are essential as are others, good or bad, positive or not, because again I’ve learned most of what I know from here reading real life testimonies like your own, experiences that are lived not collated as some form of skewered, plain wrong, out of date or at times dangerous rubbish passed off as info, research etc. on Google or from a 5 minute GP face to face .
When I left hospital I didn’t know anything of nutrition, diet, portal hypertension, varices, HE or anything of all the other symptoms and issues that seem associated with not just cirrhosis, but liver disease in general.
Regarding cars, I’m hoping to get to some classic car shows here in the U.K. this year as I missed out on a few last year while recovering. If I could liken my own health right now to an engine, it would be a fine low mileage V6 with a few advisories on the old MOT after last year’s MOT failure had me on SORN with lots of mechanical issues. I’m hoping to upgrade to a nice V8 soon ha ha, but I’d settle with a V6 if that’s not possible.
I do like a V6, I’m currently driving a flat straight 6 which is smooth as silk, you can’t beat the grunt, growl and sense of occasion a V8 musters, however. I’ve never owned a V12, but imagine the right one is the daddy of all engines,
Hi Smiffy - my response concurs with grassroots and I will give you my own experience. 2021 KPA max of 75 (don’t know cap), 2023 KPA of 57.9, cap 282. March 2024, KPA 23.8, cap 232. I have considerably improved my lifestyle during this period and my latest letter from hepatologist noted the regression and clearly stated he has patients that after years of doing all the right things - abstinence, diet and exercise that show no clinical signs/evidence of cirrhosis. This was said with caution that it didn’t mean you had a liver of a baby, but meant if you continue with right behaviours the effect of past liver cirrhosis can essentially become insignificant.
Concur also with fibroscans only being one marker. During the relevant period above, I had multiple MRIs, US, OGDs and bloods.
Each persons journey will be different of course, but these are my facts and my notes from my hepatologist. Tells me that if we can keep doing the right things then a lot of things are possible.
Hi X100 - amazing work and this shows what can be done. Read some studies about this only a small sample but the main ingredient to success was compliance I.e how you respond to this life challenge over time. Good luck with your journey
Everyone is going to be different. All we can do is try. I had progression to NASH over many many years, with no acute signs. I have noticed that those of us who used sugar, HFCS, processed foods, Soda, Fruit juice seem to have a tougher time with regression. Alcohol use not always, but many times I see people regress with total abstinence. I cut off the junk food 7 years ago and lost 210 pounds, liver fat is gone, stiffness score time will tell. Still compensated and doing well. Best of luck, don’t cheat, do the right things.
Sugar is so bad for us, luckily I’ve never been one for sugar, but when I quit the booze boy did I crave sugar for some reason. Well done on the huge weight loss by the way, that’s amazing.
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