Bit of a long tale I'll try and condense. About a year ago I had two episodes of excruciating pain in my lower abdomen. Sent for camera at each end which found diverticulitis and Barratts osegephous. Told to lose weight and avoid certain foods. That was it. No further flare ups. No problems. Go back every three years to monitor Barratts.I was also booked for an ultrasound on my tummy and nothing to do with my liver. I didn't think much of it because the appointment was a few months after the camera. I presumed I'd been given all the information I needed from those results. After the ultrasound I was asked to go to the GP to take bloods. Then I was asked to go for a Fibroscan.
Now this is where I'm totally confused....
Had a telephone call appointment with Gastro consultant a few days ago. He asked if I'd received a letter (which I hadn't due to postal strikes) he told me I have liver fibrosis then mentioned cirrhosis. As I'm not a doctor I had absolutely no idea what to ask or if it was serious. We chatted about Christmas and family then said goodbye.
The letter arrived a couple of days later and says -
Steatosis: S0 Fibrous score: F4
That's it. There's no mention of blood results or scores or anything else.
I'm booked for an MRI in a couple of weeks.
A quick bit of googling and now I'm really worried. "Survival one year 42%" "F4 is the most severe form of cirrhosis" etc etc ...
But if it was so serious would I be told this over the phone in such a chatty and convivial manner while we spent a few minutes talking about Christmas and families?
My wife is so worried she's not stopped crying. I'm thinking about selling my business and getting affairs in order. We've got an eleven year old daughter I can't look at without feeling dread.
I have zero symptoms apart from maybe being a bit tired.
What have I got? Can I reverse it? How long have I got? I feel like I'm in a very dark tunnel right now.
Written by
Build111
To view profiles and participate in discussions please or .
Hello fella.Take a deep breath....I understand it all sounds very scary. I was in a similar situation myself 4 years ago.... cirrhosis diagnosis. Fella,you really need some clarification from your gastro consultant.....when I was first diagnosed, the letters from my gastro consultant where one sentence letters......I was not happy with that at all.....hardly any information. I phoned and asked her secretary if at all possible if she could enlighten me with a bit more information!!!!. The next letters than came through were far more detailed......
You need things explaining alot more,to give yourself some reassurance. I personally had quite a few serious symptoms. You could always phone the blt nurses, there great at explaining things in a more straightforward manner.
I fully understand its alot to take on board at once....but I would be on the phone on Tuesday morning to consultant's secretary....there are usually very helpful..
Try and stay calm fella,although I know easier said than done.
Right, slow down and keep calm, even if this diagnosis is accurate it IS NOT all doom and gloom.
Fibroscan takes 10 different readings across the liver and the median score is given as a kPa figure (0-75kPa). This kPa figure reflects the amount of fibrosity in the liver and depending on what the underlying cause of the fibrosity determines what this reflects on the metavir fibrosis scale (F0-F4). Different underlying causes have different bars on the fibroscan score chart ( you can look this up on line) so what may be F4 for one condition might only be F2 or F3 in another.
Also, fibroscan needs to be looked at along with your bloods and other scans - since fibroscan can't tell the difference between inflamed liver tissue & actual fibrous tissue and can sometimes give a false high reading (doctor will know if there is ongoing inflammation from blood test results especially if any inflammation markers are raised).
IF you do have cirrhosis then it isn't the end, whilst it is called end stage liver disease this is only because F4 is the last stage of fibrosis - it doesn't mean end of life.
F0 Normal Healthy Liver, F1 Mild Fibrosis, F2 Moderate Fibrosis, F3 Severe Fibrosis sometimes with bridging a.k.a. incomplete cirrhosis and F4 cirrhosis.
People can live long and fairly normal lives even with cirrhosis especially if like you they are symptom free. Forget completely anything you read about supposed life expectancies, this is in folks who do hee haw to help themselves recover.
My hubby was diagnosed with decompensated cirrhosis back in 2012 and almost died from a variceal bleed, he's been stable for 7 years having been taken off the transplant list in 2015 because he improved so much. This year he has cycled over 1400 miles on his bike and ok whilst not symptom free is also no where near deaths door. His consultant has frequently told us of patients who have had the condition for 20+ years and are still doing well.
What needs to happen next is doctor needs to 100% confirm this diagnosis of cirrhosis AND they need to identify why you might have got it. This will mean more tests, blood tests, scans and potentially a liver biopsy if there is no obvious reason for you having it. My hubbies diagnosis came completely out of the blue and it turns out he has had Auto Immune Hepatitis which has damaged his liver without giving off any symptoms right up to him developing full on cirrhosis.
Once they've identified why you might have cirrhosis (if indeed you do) then they will either give out lifestyle advice or start to treat the underlying cause - there are a multitude of reasons why a liver can become damaged. Lifestyle, virus's, auto immune conditions, genetic and hereditory conditions and more so once they identify what is going on with you they should be able to instigate some sort of treatment.
Stopping whatever is attacking the liver is key to stopping any further progression and possibly even reversing some of the damage. As you are symptom free you are in a good position to stop progression and today they say that even early cirrhosis is often reversible.
Your Steatosis of score of 0 would hint that fatty liver is not the issue.
Hopefully you have a follow up appointment scheduled very soon so that you can discuss doctors findings and where you go from here. This is not the end of the world, don't catastrophise it and even if it is cirrhosis you can still do loads to live a normal and long healthy life. If you haven't heard from doctor soon about this then chase it up as you need to get the cause identified before you can go forward.
Hope that's lightened the mood a bit and offered some reassurance.
As far as I know I'm not scheduled for an appointment with anyone apart from the MRI scan in a couple of weeks. I presume that's the next step and then I get to see someone and ask questions? Do I contact my GP or the Gastro consultant in the meantime or just wait for the MRI and go from there?
Everything just feels so relaxed like I've got a very mild problem that doesn't need lots of work to start ASAP. It's so strange.
I know exactly what caused it. Alcohol (surprise surprise) I work in construction which is notorious for heavy drinkers so when I compare my drinking to some other guys mine seemed positively light. In hindsight 6-8 cans of Stella most days after work isn't what you'd call normal. Luckily I was probably a 'functioning alcoholic' never drank in the morning or daytime (which a lot of guys did) never had the shakes or an overwhelming 'need' to drink, it was just a nice way to relax at the end of the day and self medicate those aching muscles. I haven't drank since the phone call and no have no intention of drinking for the rest of my life. I feel so foolish I've put my wife and children in this position.
Maybe wait for the MRI then the gastro doctor will have the full picture and hopefully they will take it from there. Having no fatty liver would be unusual in alcohol related cirrhosis unless it's almost gone beyond that stage. Stopping the booze is the ideal step though - it's the only way you can stop further damage and potentially reverse things. It's one condition where removing the assault on the liver is fairly simple providing the patient does as you have and stops.
If your bloods are elevated just now that fibroscan result may be falsly high - I take it you didn't get the actual kPa figure. It would have to be above 23 kPa to be reflecting cirrhosis in alcohol related liver disease and that's if there is no ongoing inflammation. Doctor will hopefully know more after the MRI.
Don't keep Doctor Googling or you'll have yourself deid and buried before you even know you genuinely know you have an issue. A lot of the sites on line fill you with dread. Stick to BLT and NHS rather than googling more. Talk of life short life expectancies and all that don't apply if you stick with sobriety and really look after yourself and fully comply with all doctors orders.
Sorry - just to add,No. I've not been given kpa scores or billirium or the other things I've read about. It was literally a one line letter with those two results. SO and F4
No explanation. No information. Not even a leaflet explaining what fibrosis or cirrhosis means. That's why I started googling which I know doctors absolutely hate!
Fella ,don't feel foolish,we all make mistakes....not one of us is perfect....just knock the alcohol on the head... thats the really important part. Its no good living with regret, as we can't go back....but we can shape our future.....I would probably wait for the mri scan, so the consultant's have all information to hand,to fully explain to yourself the full situation, and moving forward. Once you have the information required, I would still call the blt nurses....just so helpful and informative. I was never offered a fibroscan,as they already knew I had cirrhosis, from very obvious symptoms. Its not all bad news....I'm still here!!!. Infact I've got 2 appointments on Tuesday one being a ct scan.....I've done exactly what my medical team have asked of me...you can only do your best fella. Remember fella,none of us are qualified medics. Utmost, listen to your doctors. I wish you well.
With regards the Fibroscan I know it was a nurse who did it and not the gastro consultant himself or a specialist. Only reason I mention this is because I've read some things about the level of training to get the best results. Not for a second saying she wasn't qualified.
When you say fatty liver and "gone beyond that stage" is this a cause for concern? Does it possibly mean it's quite badly damaged?
Strange thing is the gastro consultant actually mentioned my drinking towards the end of the call but only as an after thought "are you still drinking the same amount?" Told him I'd cut right down to help me lose weight and he said "oh that's good, what diet are you using? How's it going?"
It felt like he was more concerned with my weight loss than alcohol consumption. It only got mentioned as a great way to cut calories to lose weight.
I would have thought he would have told me to abstain immediately. Again, it feels very odd.
I'm around 5 stone overweight. I've lost just over a stone so far but now I'm concerned about eating enough to protect my liver and lose weight. There's so much whirling around in my head right now.
I'm also not sure why they even started down the liver route after the diverticulitis results. Obviously I'm glad they did, but the NHS isn't normally known for doing random tests for no reason.
Diagram shows progression pathway of alcohol related liver disease - one way is fatty liver builds up Hepatic Steatosis which from your fibroscan you don't seem to have any fatty build up hence S0 score. So either you've gone beyond that stage and there is no fatty build up obvious or you've had the alcohol related hepatitis. Sometimes you get both.
If it's cirrhosis now anyway the earlier stages are no longer relevant.
Katie
Progression diagram for alcohol related liver disease.
Hey Katie, your information are always like a hope for us. My 32 year old wife has been diagnosed with early cirrhosis with S3 since she is not having any serious complication except fatigue and weight loss.
Doc suggested only life style modification and bilypsa 4gm 1 tablet a day.
Is there any chance to reverse the cirrhosis from this stage. Ye her BMI is more that 30. And she is following a very strict diet and brisk walking of atleast 5 km per day. But having history low weight loss due to thyroid.
Please tell me even with all these conditions the damage can be reversed or not. Please reply soon, we have one 3 year old baby and living in trauma in last one month. It is feeling like end of our small world.
Unfortunately, no one on the forum is able to answer this question but it sounds like your wife is making the suggested lifestyle changes.
Questions about her liver disease are best put to your wife's own doctor or health care professional. Only they have access to her full medical history and so are best placed to answer them.
We suggest talking this through with them again, including asking what support may be available for you.
Hey build, I was freaking out too man. I was diagnosed at 39 years old with cirrhosis. Thought I was a goner. Almost 2 years later still here and feel better now than I did. It’s def scary for sure. It’s not a death sentence. I thought it was but it’s not.
hi please don’t panic. I was diagnosed with nafld (fatty liver) at 38, I’m now 54. I was slim then. Mine is due to metabolic syndrome. All my readings like cholesterol, triglycerides, gamma gt and the alt in liver were all double/treble what they should be. I was put on Bp meds, statins and a fenofibrate to help protect me from a stroke. No reason for it as I wasn’t overweight, I rarely drank (literally I could count on one hand the number of drinks a year I had), so even the consultant couldn’t work it out. Anyway, now at 54 I do need to lose weight (size 16-18) so still not what people would say is huge. This year my blood tests were higher again indicating advanced fibrosis. So had a scan in October and saw consultant and yes it is F4 and cap 334 and kpa 12.7 which is teetering of cirrhosis for fatty liver which isn’t alcohol related. I also have joint hypermobility which makes exercising difficult as I walk with a stick. But the consultant keeps telling me to lose weight so now Xmas is over I’m back on it. I have other conditions which conflict with each other - a bowel condition which means a carb based diet is more easy for me to digest but now developed type 2 diabetes. So I really need to sort all that out. But mostly the medical profession will tell you it is all down to lifestyle so well done on stopping the drinking, that’s amazing, so big kudos to you. Now I need to sort diet and exercise out!
Just to confirm what others are already saying. Talk to the BLT nurses for some reassurance. You’ve already stopped drinking so well done and keep that up. You’ll know more once all the results come back and then you’ll know what you’re dealing with. Lots of good people on here with different conditions who are still going strong. My Mum lived 20 years to 75 with an autoimmune liver disease. Doctors back then gave her 2 years. Don’t Google! Wait until you know what the problem is then go to the BLT website. Google is full of info that is out of date and inaccurate. Waiting and not knowing is hard so do nice things with your wife and daughter to distract yourselves. Best wishes
Dont panic, dont google (as others have said) give up the drink, eat healthy and exercise. Use the BLT web site and chat to their very helpful nurses when you know what's wrong. It can be turned around. My husband broke my heart when we found out 19 months ago that he had 18 months at the most to live. UKELD 58. Hardly any symptoms. He didnt drink every day, he also had autoimmune hepatitis but it was the alcohol that had done the damage over the 30 years plus. Here we are with him nolonger needing transplant and healthier than hes been for 10 years! Life expectancy almost normal.... it's not easy to change your life style but it can make such a difference. Good luck
Hi I was diagnosed in early october with cirrhosis as I had been a drinker , with pains in belly still. I am trying really hard to give up alcohol Its really scary as I had an ultra sound saying I did have a fatty liver but my bloods said no liver disease very confusing . My fibroscan was 28.1 kpa but am having another one done for a second opinion
Hi, I know pretty much what you're going through. In a few months it'll be 10 years since I was diagnosed with cirrhosis out of the blue. My liver and spleen were swollen, my bloodwork had been out of whack for a year, and I was exhausted and had brain fog by then. I had a CT scan then an MRI (because the CT scan mistakenly found cancer...but that's another story that has to do with the crappy hospital I went to). I was eventually diagnosed with primary biliary cholangitis. Meanwhile I realized that some Chinese herbal stuff (called Jin Bu Huan) I'd been taking for insomnia for about 10 years had been banned in Canada because it likely caused liver damage, brain, and nerve damage. So of course I stopped taking it immediately and started taking Ursodiol.
I feel pretty much normal these days and have for years. My bloodwork has been normal for many years. I eat well and get good exercise.
Good on you for quitting drinking. By removing the onslaught against your liver, you've helped your chances of living a normal life to a huge degree.
You'll get much better information on this site than by Googling. I wish I'd discovered this site when I was first diagnosed. Google = Mr. Scary!
Thanks I am trying hard but been on the sick for months now just feeling unwell doctor is no help I really want to go back but I do a physical job and am in pain everyday
I was diagnosed as Stage 4 eight years ago.. A few bumps in the road but I feel fine now for the most part..
My one and only Fibroscan had a KPA of 27. Which is fairly high.
Don't panic. My Fibro scan was 39.2 I also have two US scans per year continuous blood test. You need protein for energy, regular bowel movements to keep ammonia levels down in brain. Cut down salts and fats. No MRI for me. You could go 30 years as long as no complications. You should have a consultant, specialist Liver Nurse, and at least regular contact. F4 means F4 regardless of anything else.
I've had my MRI appointment which turned out to be an ultrasound scan although I was definitely told it was an MRI. Very confusing.
Anyway, had the ultrasound and had a good chat with doctor performing the scan. Told him it was going to be 8 weeks before my telephone appointment with the consultant so if he could tell me now where I am on the scale so I could start making changes to my diet etc etc...
And the result......
No sign of fibrosis. No sign of cirrhosis. A slightly fatty liver. Lose weight. Stop drinking. He thinks the Fibroscan didn't read correctly because of my weight (fat can affect the results). I literally burst into tears I was so relieved. I must have looked like a right fool. Now I've just got to wait for the telephone appointment with the consultant in 8 weeks to confirm everything.
I feel like I've been given a second chance. It's been the most stressful few weeks of our lives. I'll never touch alcohol again and will be sticking to a sensible low carb diet from now on.
Thanks so much for all the support over the last few weeks. I'll be thinking of you all and wish you all well for the future.
Dave.
The ability to reply to this post has been turned off.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Cirrhosis / not cirrhosis
F4 fibrosis 
Liver Fibrosis
Some Good News
