Hello, just received a letter from the gastroenterologist from UK about Fibroscan results, and I was so anxious that I had to phone 111, phoned hospital, went to GP and pharmacist, went to A&E, and couldn't eat anything until 6pm, some strawberries and apples, then at about 11pm ate low fat cottage pie, cucumbers and lof fat chicken breast slices... I am afraid to eat anything... Now it is 3.15am at night, and I can't sleep, so worries. Also, I have yellow feet, a bit of yellow colour inside the bottom eye lid, fatigue, tiredness, weakness, a bit of mild pain, on and off under ribs, eczema, maybe RLS.
Is it curable? How many years am I going to live? What is the life expectancy for my diagnosis?
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CryoArthur
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I have to wait until 28.8.24 Sunday 15:45 for the appointment with the gastroenterologist to discuss the results and what next, but I am too anxious and I don't know how to manage my anxiety, sleep, tiredness... The A&E said if it was an emergency, they wouldn't send a letter... Asked to speak with the Doctor, they said he is not abandoning until next week, and they can only email him, and I have to wait for 48 hours for reception to contact me... I thought I can call and ask to speak with another gastroenterologist who replaces Dr who checked my results... Or a gastroenterologist can contact me via phone quicker, and the I would have peace of mind... I want also to contact Liver Disease Trust to see what the nurse can say... The results attached are 8 months old, blood test, I am not sure of it is relevant, because I had more blood tests, but O can't see my recent medical records for blood...
You shouldn't be panicking about this result - concerned yes but a long way from talking life expectancy etc. It is imperative to start work on lifestyle changes - a healthy balanced diet, no booze and exercise is key.
Anything below F4 (full on cirrhosis) is considered reversible so with a bit of hard work and clean living you could/can turn this around.
The British Liver Trust website has loads of information on NAFLD/MASLD snd dietary advice etc.
You can turn this around, NAFLD isn't any sort of 'death sentence' .... it is a reversible condition but you must tackle it to prevent a worsening of the fibrosis.
It’s always scary when you receive results which you weren’t expecting after tests have been done. As Katie says - don’t panic. You can do something about them and reverse the fibrosis by avoiding alcohol, eating a well balanced diet and doing some exercise. Even with cirrhosis the liver can improve if the thing causing the damage is taken away. At F3 there is the potential to fully reverse the damage. If you can speak to your doctor then it will reassure you but they are not treating your result as the need for an urgent appointment. It’s obviously not an ideal result but there’s time for you to do something about it. So see it more as a warning than a catastrophe.
It's time not to give up and get to work. It's not good news to have F3, but right now you have two enemies to face. You can fight one with a healthy diet, exercise, and medical help to determine if there are any other underlying conditions to address. The other enemy is your thoughts. There is room for improvement in your results.
Every person is unique and not like any other. In my family, we have a genetic condition called hemochromatosis that damages the liver, in addition to a tendency to develop fatty liver. I don't know how long I'll live, but for example, my grandmother, diagnosed with cirrhosis in her mid-50s, lived until she was 85. You are young with room for improvement, and on this forum, you will find people who have been living with similar liver conditions for many years. Many of us know that feeling of loss of control and fear very well.
You still need to talk to your doctor and interpret your results ; The liver is complex to diagnose. We are at a point where treatments for your condition are starting to be marketed, treatments that didn't even exist five years ago.
Why is it not urgent? Why do I have to wait until 28.7.24?Because of that, I slept this night about 4 hours only... And I can't stop worrying... How can I exercise if I don't sleep well? I don't have energy to do it? Do you just do it even without the energy?
And also, I had FibroScan on 25.6.24. I am afraid that f3 might have progressed to f4, which you can't reverse. How can I know that it is not too late? How can I know that withing this month I'd didn't progress to f4?
It's not urgent because it's not going to develop that quickly. If you only had a fibroscan in June you wouldn't anticipate much changes in only one month - you most likely will get a repeat fibroscan in a years time. There is no treatment for fatty liver other than what you can do for yourself. There is a pathway in place for the diagnosis and monitoring of fatty liver disease and these are outlined in the NICE guidelines. nice.org.uk/guidance/ng49
Am I allowed to show you how the poo sample looks like to find out if it is still f3 or to moved to f4? I am trying to understand what is tarry looking poop... And if it is very dark or not... What is the difference between those stages?
No, there is no need to give us a photo. You have a new diagnosis and it will take time for all the pieces of the diagnosis to come together. With F3 you can reverse this situation (even early F4) is reversible. Black Tarry Poo only comes when you have full on decompensated cirrhosis with all it's associated symptoms and it happens when you have internal bleeding from varices in the oeosphagus.
Your blood tests would be deranged and would indicate if you'd hit a state of advanced cirrhosis.
I think you are sending yourself down the health anxiety worm hole here. You have a diagnosis of NAFLD and that's what YOU need to concentrate on and start treating.
Please try not to panic. Also, from my understanding ,a reading of 11.4 only just puts you into the F3 range. According to this the range for F3 goes from 11 to 19.
On that basis you are pretty unlikely to hit F4 at all if you look after yourself well. If anything you could soon tip it down to F2. It has not been classed as urgent because it isn't medically urgent (even though of course it will feel urgent to you).
Hello, thank you for your answer. I think you are wrong with the spectrum - you have looked at alcohol related disease, but I have NAFLD - f3 - 10-14kpa. Is it still treatable?
Your doctor will guide you much better, but keep in mind that when you have a high degree of fat in the liver and you likely also have inflammation (altered liver enzymes), the FibroScan may overestimate the kPa a bit.Even if it were an F4, by taking the necessary actions, your liver will improve.
11.5, 12, or 13 is not that important. Keep in mind that the FibroScan samples and takes a median of a small portion of your liver, and liver damage is not homogeneous.
It is important to know that you have a problem and that fortunately, it was not diagnosed five years later.
Thanks for your message. So , the Fibroscan shows the small portion... So the other part of the liver could be less or more damaged. So, it doesn't mean that I have f3? It could be f2 or f4 - cirrhosis? Or I misunderstanding you, sorry?
Depending on the area that the fibroscan treats, it can give somewhat higher or lower results. That's why about 10 measurements are taken, and the median of those values is calculated. When calculating the median, values with the most deviation, the worst and the best results, are discarded. Just half a point or so in the measurement is not so important, don't focus on it.
In the case of NALFD, and other liver diseases, the damage occurs after a long time of inflammation and the liver being exposed to stress (years), it is not usually a process of a few months or days.
The medications are beginning to be approved for use, I know that in the United States the FDA has already approved some medications, I don't know how long it will take for them to be available in the UK or Europe. The important thing is that there are already treatment options that did not exist recently. Even so, changes in habits are essential and will surely be the first action.
Hi there, I’m sorry you are going through this right now and are obviously anxious and worried about these results, but try to remain calm and await further tests such as LFTs to see just exactly where you are at right now in terms of what is going on with your liver.
No one, not even doctors, however, can predict how long any of us has to live, never mind anyone with liver disease so it’s a question sadly that you won’t find an answer to and don’t look on Google either whatever you do looking for such answers, it will only scare you.
The great news is, you are now in control of your own health knowing your liver health is now compromised and it’s how you live your life from now on that will determine whether your liver will heal and any fibrosis can be reversed or not and that means a healthy diet, regular exercise and limiting or cutting out alcohol altogether, the 3 main culprits other than genetic disorders and medication that can all contribute towards liver damage among damage to other organs.
Do that and the liver is a remarkable organ that can regenerate, heal, remodel and recover amazingly well even from extensive damage. I’m living proof of that as are many others on here. You can recover from this and potentially reverse any fibrosis. You’re not dying and don’t have cirrhosis, you just have a liver that isn’t in the best shape it should be, but again that can all be fixed by yourself and especially so with any help, advice and guidance from your doctors who are now of course monitoring your situation which is a good thing because now you know and they do too.
This can be a wake up call and act as a spur to become a healthier person which I’m sure you will strive to achieve. Good luck and take care.
I feel a bit of pain in liver, I think so... Under ribs on the right side... Is it normal? It is also hard to sleep... I want to call the reception everyday, until I get in touch with the doctor... Why the doctor can't prescribe medication now ? I have to wait until 28.7.24... if I have liver inflammation because of fatty liver and f3 11.4 readings... It would heal the liver, the medication... Isn't it urgent, until I got to the appointment, it could progress further more? It is more than 1 month difference, scan on 23.6.24, and next appointment on the 28.7.24... I am so afraid... 3 days in a row I am eating just low fat boiled food, chicken, broccoli, cucumber, cottage cheese, yogurt, some low fat ready meals, no salt, no sugar, no alcohol (I don't drink), no fatty fried food, lots of fruits and vegetables, some pasta... I was walking yesterday 10km... Planning to do it again today. I can't get asleep, and then wake up at night with fear... My stomach said that he was hungry, and I went to eat some strawberries, still hungry, ate some cottage cheese 0 fat, then managed to fell asleep...
Will the doctor do EFL test, and prescribe some medication, and refer to hepatologist/dietologist?
You aren’t being given medication because you don’t need it, not yet anyway and medication won’t fix your liver and can actually make it worse, the doctors need to do a full array of further test on your liver to get a full picture of what’s going on outside of the obvious which is you have a fatty liver and some fibrosis, which many people do.
It’s not life threatening nor going to kill you. I understand your anxiety and I feel for you right now because there is nothing much worse than over thinking already bad thoughts, but you’re going to have to be patient and accept that there is not a lot can be done on the medical side with fatty liver and firbosis especially at this early stage, it’s all down to the individual to lead a healthier lifestyle really unless there are underlying health problems.
Now I’m not saying you don’t, if you lead a healthy lifestyle, but still have these issues, then there is obviously something going on, but that’s what your doctors will look to find out and in time be best placed once they do to provide you with a course of treatment or advice on how to go forward with this so any damage done to your liver can be reversed, managed or maintained and more importantly stop it from getting any worse which you yourself can help by the good old adage of eat right, drink in moderation if you do drink or not at all and get regular exercise which it seems is exactly what your doing which is great so keep it up and I’m sure any issues you’re having will be resolved soon enough or you will at least find out exactly what is going on. Again take care and good luck.
I have F3-F4 with bridging, I am 62 significantly older than yourself. Fatigue is part of the course and the only symptom I suffered at first, I have yellowing like coffee stain on my left foot, but this is indicating poor circulation more than anything according to my consultant. Who wasn't concerned at all last time I saw him.
My full diagnosis was only confirmed with biopsy. This may or may not be offered.
I'm under six month reviews, try to do what they advise, my fibro is stable now, it was f19, now single figures. I cut down on meds don't drink alcohol, have difficulty with diet but keep trying, also on long term meds for non related long term condition, try and cut down when pain isn't bad . Nothing is easy, you do worry until they get a full spectrum of what's going on, it took them a year until full diagnosis with me, so just take the good advice given, and you will get there soon enough.
My wife was Fibroscan 14.7 in March 2024. She just had a biopsy in July and was diagnosed as f3 yesterday. She is considered fast progression since she was f1 in 2019. No symptoms. I've read a lot of studies on this. I think the advice you are getting on this string is spot on. My wife is losing weight (she is only slightly overweight) exercising, and simply trying to improve her health. There are new medications for f3 if you can get them. $$ in the US. "Rezdiffra" google it.
Hello, thank you for your answer. Did she have the diet and exercises from 2019 until 2024? And it didn't help her to stop progression or reverse the condition?
Hi Arthur, I feel a more direct response may be helpful to put your mind at ease a little. Many apologies as the text below may come across a little blunt. However, I think you probably need this.
1) you have a diagnosis of NAFLD. This puts you together with roughly another 15 - 20 MILLION other people in the UK. It is a very common issue.
2) it is possible to STOP COMPLETELY any further progress of this disease. It is NOT a given that it will progress further. Indeed, you can even reverse the damage that may have already begun. You'll be given advice on what to do by your gastro doc next time you see them.
3) This is NOT A MEDICAL EMERGENCY! It is NOT CURRENTLY A CRITICAL CONDITION for you! Even if progress does occur, which it may not, it will be slow. Not a lot is going to change in a few weeks or months. Your Gastro doc isn't treating your case as urgent, because ITS NOT URGENT.
4) You are NOT IN ANY IMMINENT DANGER IF DEATH. No one could even contemplate giving you any form of life expectancy as its simply impossible to do so at the stage of disease you are at.
5) In the sagely words of The Hitchhikers Guide to the Galaxy - DON'T PANIC! There's no need. Follow the advice your gastro doc gives you and take it from there. As others have mentioned, this is something where it IS POSSIBLE to stop progress and it may STILL BE POSSIBLE to reverse any damage that has already occurred.
I hope that is a little helpful, if not a little blunt. No one here can diagnose you, no one here is qualified to do so. Please don't share a photo of your stool. Well not unless it's a particularly fancy one you bought from IKEA.
You have some good advice from others about some potential lifestyle changes you could make before you get to see your specialist. By all means make those first steps as suggested. That's bound to start making a difference. There's no need to go mad with it though. Stay away from any fad or severe diets you may see on the Internet. Those aren't likely to be helpful long term, probably not in the short term either. Everything in moderation is fine, but maybe heed the advice of staying off the alchohol for now.
Good luck to you. Follow the docs advice and see how it goes. Just be patient with it it.
You need to spend the time until your next appointment calming your thoughts, so you can understand and remember what they tell you.
We all have differing diagnosis’s however if it helps I was diagnosed with Liver Cirrhosis at Christmas NAFLD, F4 43.7 kPa 29% CAP 327. I am 52yrs and rarely touch alcohol. (I was told if I abstain from Alcohol, eat a healthy diet (i.e Mediterranean Diet), exercise and have good sleep hygiene, then my life expectancy could be 20+ years or no different than if I didn’t have Cirrhosis. It is all about stablizing where you are now.
I reacted the opposite of you and was extremely calm so much that they didn’t think I was taking it all in… so that shows we all have different coping mechanisms and diagnoses.
Write any questions down in a notebook and take to your appointment and jot down what you are told. This will help you revisit clearly when you feel able to deal with it.
The advice you have been given so far is spot on. These are from people with experience of this disease and everyone will know what you are going through as it's a shock when you are given this diagnosis and then of course the googling starts and that is not helpful. I had exactly the same as you 6 months ago, out of the blue F3 10.7 and a a high CAP score. The advice I received on here and from the BLT was what motivated me to crack on and the do the things that were in my control.
NAFLD is a common modern day disease but you can do something about it.
Start with a look at what you eat and drink and start an exercise plan that you can stick to and build.
My enemy was sugar (and still is). I have just been for my second fibroscan and whilst not had the official results, I have been told that my CAP score has reduced from S2 to S0. It's the fat on the liver that is the fuel for the damage, so by looking at diet and exercise you can start making a difference today.
Good luck with the chat with your Dr's. Go prepared with questions make a note and take onboard the advice you are given and focus on what you can do right now to make a difference. This group has so many motivated people who will help you. F3 fibrosis can regress, it will take focus and hard work, but it can be done! Good luck.
Thank you for your support. Do you know if Dr can prescribe medication, do the EFL test, biopsy, refer to hepatologist and dietologist?How long to wait for EFL test, biopsy and hepatologist?
I know that it is long waiting list for dietologist.
How quickly the results come back, and how quickly I can discuss them with the Doctor?
Also, do you know how to ask King's Mill Hospital (I am from Mansfield) to share all of the blood, urine results, Fibroscan results, and how they diagnosed me with fatty liver? and of course EFL and any future tests' results?
I have checked my medical records with my surgery, but they have old blood test results... Should I ask them separately (hospital and surgery) to share my medical records? Do I have to come directly to hospital reception and ask?
The thing is if the doctor doesn't give me medication, doesn't refer to so more tests , I would have to go abroad to my native country, where it is not so expensive to do all of the tests, and get results and medication and prognosis... I wouldn't have to wait for months or years for appointments or to do a test there... I am concerned that there are long waiting times here in the UK for anything and that the doctor will just say diet, exercises and lose weight, and nothing else... Especially when I have fatigue, sleeping problems, anxiety, a bit of pain in liver, jaundice a bit in corners... It should be treated well...
And how much money do I need for Rezdiffra?
P.S. Sorry for so many questions, I am just very concerned about what's going on, and what's in the future...
The British Liver Trust have downloadable booklets on fatty liver and dietary info. You have been diagnosed as borderline so just adapt to a healthier eating plan & exercise all this will help your liver stay healthy. I would also try and address your anxiety this will cause fatigue and tiredness and up your stress levels and effect your mindset. You are lucky you have an early detection which means by adapting a healthier lifestyle you will improve your liver. Xx
Thank you. I have downloaded the booklet 2 days ago, I use it for diet purposes.It is difficult to manage my anxiety, yes... I just want to see better results and improvement of my liver, which will help me to reduce my anxiety... But I assume it will take months or year until I get updated results... I know I can lose weight in 2 months time, and do exercises, but the thing is I won't know if liver improved... And it is a long time until I have another appointment, or Fibroscan or ETL... This is the most stressful, when there are queues, when you don't know where are you, what to expect, is it got worse or better, and I don't know how to react, and what to do if I lose 8kg with healthy diet and exercises but the condition of the liver will get worse (for example, after another Fibroscan, or biopsy)... I want to do the tests, biopsy (what's needed) quickly without long waiting time... (I don't know what are those times for NHS), and to know for 100% what I should do, and of course I want to be assured that it will improve...
In the meantime, I have to distract myself with work (because of this diagnosis I am late to work every day), films, walks, spending time with family, friends, all of these things can ease my anxiety a bit...
I have propranolol and amitriptyline at home, but I am not sure if you can use them with fibrosis f3 and fatty liver... I don't want to damage liver more...
Hi, I have just read your post, I like you was very shocked at my diagnosis, I have NAFLD I was diagnosed just over a year ago.. my KPA was 17.5.. I've had 2 biopsies and 2 fibro scan and recently a body scan. Its gone down to kpa 11.4, last month i had my check up with my consultant my reading as gone from F3/4 to F4 early cirrhosis, I was concerned as I've gone by the book on what I should be doing.. But what I want to say to you is my consultant made me realise I have to get on with life and think positive. He said " You can live until your 93 and die with cirrhosis not of cirrhosis " So I walked out of his room feeling positive. Stress will only make you feel worse.. you shouldn't have pain in your liver has your liver doesn't have any nerves.. That's why it goes undetected for years, most people don't know they have it until they have a blood test for something else, which was in my case. If I hadn't have had a blood I would still be unaware. There is no medication for it, so eat healthy, exercise and really try to stop worrying. take care and keep us posted.
Did you do exercises and diet? And it still progressed?I assume if I have more severe pain than I have to go to A&E?
I have read that if it is fatty liver you can experience the pain.
Also, I want so much to improve my lifestyle (I am doing it), and I would be broken if it won't help improve the liver (if it progresses to f4 cirrhosis)... Somehow I would have to accept it, and continue doing what I am doing - healthy lifestyle...
Why do you think medication doesn't help? I have read that it stops the progression together with healthy lifestyle (losing weight, low fat diet and regular exercises)?
Also, medication can stop the inflammation (if there is one), what helps to stop progression.
There is new medication, which can stop progression and reverse the condition back - Rezdiffra, isn't it?
But I am concerned how people can afford it in the UK? Why NHS is not buying it to prescribe? If I buy health insurance, will it cover the cost of this medication?
Yes, I lost the 2 stone I had put on and I hate exercise but I walk alot..Consultant said there isn't any meds to take as yet to help stop the scaring. I did a 6 mth Resus Trial. ( I think I had the placebo) They are still going through the process of the trial, results of it hopefully will be sometime this year.
I mentioned the above med to him. He said it has been passed in USA, and the UK are now doing research on it, if it becomes available in the UK he said I was a candidate for it.
I shouldn't think so Re: insurance because you've already been diagnosed and you have to declare conditions when you take it out. It was medication that caused my NAFLD, So I've come off all meds. Apart from High blood pressure tabs.
I feel fatigue more and weak at times, and due to now not taking pain meds I have good and sometimes not so good days due to another condition I have. But think positive, it will take you a while to come to terms with it. You will eventually and you will get back to being you .
Does anyone know how to afford to buy - Rezdiffra? Should I buy health insurance so they pay for it? Did anyone of you tried it?My salary is something like £2000 net a month...
We have read through your post and many comments on here and wanted to add to the advice and support given by other users.
No one on this forum can diagnose you. This is a question that your own health care professional is best placed to answer, as only they have access to your medical records. We suggest talking this through with your own doctor or health care professional in the first instance. Here is the link to information on our website explaining liver disease tests, diagnosis, and screening, which you may find useful - britishlivertrust.org.uk/in...
We have edited your post to remove the photos as it goes against our Community Guidelines asking users NOT to post any test results or ask for specific comment on such. Test results vary according to both the individual’s whole health and the laboratory analysing the results and should, therefore, always be interpreted by the user’s own doctors/health care professionals.
Here is the link to information about non-alcoholic fatty liver disease (NAFLD) on our website, which you may find useful -
As these are questions best placed for your healthcare professional, I am going to turn off comments on this post. If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays).
Best wishes
British Liver Trust
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help with foods please
Fatty liver, inflammation can I run a Marathon?
Having a wobble
Diet change.
