This is my first time for posting. I got diagnosed back in Feb 2019. Cirrhosis and fatty liver disease. I've been off and on poorly since my blood alt where 160.slowly come down now 37.. My fibroscan was 12 7 then 6mth later 11.5 and a cap score of 328. What ever that means. Can anyone shed any light on what all this means. Also not drank since been diagnosed
Cirrhosis diagnosis : This is my first... - British Liver Trust
Cirrhosis diagnosis
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•
Hi Chris. Sorry to read about your diagnosis, but great that you have given up drinking since then..... do keep that up, along with a healthy diet and regular exercise.
No one here is qualified to analyse your results though, that all needs to be discussed with your doctor.
Do keep us posted on your progress though, there are plenty of people here who have or are going through the same as you and can help and support you as and when you need it.
Best wishes
Laura
(Apart from Katie who really knows her stuff)
Well done on your alcohol cessation.
Have you been continually monitored since your diagnosis? Have you had ultrasound scans 6 monthly? Have they said that you definitely have cirrhosis?
If this was based on Fibroscan - did they attribute your liver damage to alcohol or just fatty liver?
The Fibroscan score chart would say that it doesn't become cirrhosis (where alcohol is the cause) until you reach a kPa score in the range of 22/23 kPa so scores of 12.7 and 11.5 wouldn't indicate cirrhosis if alcohol is deemed the cause.
However, if cause is Non Alcohol Related fatty liver disease a kPa of over 11.5+ would be in the cirrhosis range. (Different liver conditions have different cut off points).
About Your CAP Score
Your CAP score is a measurement of fatty change in your liver. Your healthcare provider will use your CAP score to find out your steatosis grade.
The CAP score is measured in decibels per meter (dB/m). It ranges from 100 to 400 dB/m. The table below shows ranges of CAP scores and the matching steatosis grade and amount of fatty change.
CAP Score Steatosis Grade Amount of Liver with Fatty Change
238 to 260 dB/m S1 11% to 33%
260 to 290 dB/m S2 34% to 66%
Higher than 290 dB/m S3 67% or more
Your CAP score of 328 shows you have the most severe grade of steatosis or fatty liver. A healthy diet, more exercise, continued abstinence and generally looking after yourself can perhaps help you reduce this level of fatty liver and give your liver some chance of recovery.
You might find the British Liver Trust page on NAFLD and the one on cirrhosis to be of use.
britishlivertrust.org.uk/in...
britishlivertrust.org.uk/in...
Best wishes
Katie
Thank you guys. When I got diagnosed buy the liver nurse who did the fibro scan. The result came back at 12.7 and cap 328.sge then sat down and immediately said you have cirrhosis. At that point I had no idea what was going off. She then said how do u feel? I said I feel fine. Which I did then, about a month later after stopping drinking I suddenly felt dreadful felt so poorly like something I can describe. Then my appetite just went. Got nausea arms and legs weak. Tired too. My eyes looked shocking all bloody shot. Looked a mess.. Then for last 12 month nearly I've been up and down with symptoms but milder than the beginning.. Recently I've had my bloods done and everyone was perfect. I just don't get it. I saw a consultant the week after my recent blood tests. I told him about all the symptoms he didn't seem phased at all. When I left the room he said stop worrying you stopped drinking at the right time . But I still have rubbish days n feel terrible somedays . It's hard to cope with. Not sure if it's all the fat on liver causing these symptoms
AyrshireK• in reply to
Have you ever had an ultrasound? The guidelines are that someone with cirrhosis should be monitored by ultrasound every 6 months - it doesn't sound like you've had that done. Also, from what doctor is saying you perhaps do not have cirrhosis at all.
Alcohol cessation can cause symptoms as your body adjusts to not having the alcohol in the system. Whilst you are still having rubbish days would you say you feel better than at the start of this journey? It will take a good wee while to reverse the fatty liver but with the alcohol withdrawn it will be a good help.
Another page that you might find helpful is the BLT page on Alcohol and the liver. Whatever you do, just because you are feeling cr*ppy don't be tempted back to the booze. You've got a chance of recovery right now - especially with normal bloods etc.
britishlivertrust.org.uk/in...
I would be requesting an additional scan to examine the liver, fibroscan doesn't reveal the full picture. An imaging scan like ultrasound would be a good start so you can tell whether or not this is cirrhosis. If you do have cirrhosis 6 monthly scans are a must to check on the liver health - for changes to it, to other organs, to check for fluid and other things. You need to know what you are actually dealing with.
Wishing you all the best,
Katie
• in reply toAyrshireK
Hi again. Yeah I've had 2 ultra sounds. Like I said the liver nurse said on the first scan I had cirrhosis. Then the next time I had a fibroscan she said I had a scarred liver. Then the recent meeting with consultant. I asked him about cirrhosis he said I'm on the cuff or f3 f4. Then said just before I left he said I definitely have liver disease. It's confusing . That's why I'm lost with it.
AyrshireK• in reply to
F4 is cirrhosis - so F3/F4 is advanced fibrosis/incomplete cirrhosis so not full on cirrhosis and still somewhat reversible. Good lifestyle changes can help you no end.
• in reply toAyrshireK
I do try and keep healthy as poss. I'm going to try and concentrate on getting the fat off the liver. I was abit deflated from the cap readings on second scan first one was 325 then 6nth later was 328. No change really so I'm taking it it's hard to get it off. Even when stopped drinking. I certainly will never touch alcohol ever again. I didn't see this coming and I drank a fair bit but no more than my mates at weekends. Bingeing
briccolone• in reply to
hi there and welcome-it does sound like your labs are improving-when you stop drinking your liver can go haywire and go into into inflammation for months-it can take a long time to recover.. as laura and katie have said-stay away from alcohol and keep a healthy weight and who know you could be feeling great in 6 months...cheers
B3nnen2015• in reply to
Chris did your abdominal ultrasound scan detect the cirrhosis or was it only the fibroscan which detected it?
• in reply toB3nnen2015
Was just the fibroscan. My first scan was 12.7 the only person who said cirrhosis what that liver nurse who did the scan that day. She had a chart n said to me is it alcohol I just said yes as I binge drank weekly maybe 3 times a week. She said u have cirrhosis too me. The following time in August last year same liver nurse said you gave a scared liver. Never used the word cirrhosis at that point.. No one seems that bothered tbh. Most days I'm tired out. Eyes look blood shot alot. Physical weakness in arms and legs. Just feel crap in general. I started a job last Monday lasted a day. Felt poorly at work so on the Tuesday I decided I'm not fit enough for work. My life is horrible at min. No where near like I used to be. Waste of time going to docs they just run bloods and they all come back fine. There was all elevated 13 mths ago. Not all normal levels they say. So fed up with life
B3nnen2015• in reply to
Your liver fat looks very high but your fibrosis is lowering.
I drank a bottle of rum or 3 bottles of wine every day and ended up with a big fatty liver(not sure of fibrosis yet, fibroscan next month). I went on a strict diet and lost alot of weignt and got nearly all fat out my liver.
Cut out sugar and carbs, lose weight and try intermittent fasting. The fat will burn
• in reply toB3nnen2015
I will try but struggle to exercise. Can just diet n fasting get the fat off. I'm 14 n half stone. Don't look over weight but I might try and lose a stone
B3nnen2015• in reply to
Excersize helps but is mowhere near as important as the diet.
Fasting worked well for me, my body/liverfat was my fuel, maybe you need to be a bit more careful as gour fibrosis may be higher.
. Between november and February i went from enlarged fatty liver to mild fatty liver to a little patch of fat on my liver. I was alot heavier than you (20 stone). Im 14 stone now.
Cut all carbs and all sugar, your body doesnt need them for energy as it will burn your bodyfat and your liver fat.
Have a look on you tube for
1, dr berg fatty liver , and
2, dr fung fatty liver.
Read this page below too for ideas, have a look at the linked studies to how other people cured their fatty liver. It REALLY helped me. 👍🏼🖖
ThreeSmiles• in reply to
Hi chris
Please be so so careful about dieting. You will see lots of different advice given and it isn’t necessarily all correct. As I understand it what I was told by the dietician - attached to the liver clinic at QEHB - was tailored to the state of my illness, body strength, weight, etc etc. Best see someone who is expert in this field. Talk to your doctor and try to get a referral - I know it’s much easier said than done. 😕.
I’m not saying what you are being told is wrong but it doesn’t match what I was told pre my TP. Be careful, please.
Miles
Chrissyredhead• in reply to
Stay strong I’ve been off since feb only just decided to treat me although diagnose last nov one year ago it’s hard take one day At time so hard
It may have been stopping drinking immediately which has caused withdrawal symptoms, it happens to some people. Sticking to a healthy diet and off the booze is most importantant now. Thats all your liver needs and time to settle down and heal.
So don't worry, just look after yourself.
Laura
Thanks Laura. I thought that at the beginning, nearly at the 12mth mark now. Still getting rubbish days. I will try to shift some of that fat off the liver. Its just hard exercising when u feel rubbish and weak. Just want to get bk to normal life like most people
Laura009• in reply to
You will get there. You don't even have to go mad with the exercise, just short walks to start with to keep your blood circulating and your lungs working. You can increase what you do gradually as and when you feel up to it.
L
Hi chris, hope your feeling a bit better? I dont know the correct scoring buddy but hope you got medication (thiamine, vitamin b1 strong compound etc) that's what they gave me due my alcohol use, also well done on not drinking anymore as well. If you need anyone to talk to just drop me a message. Take care fella.
Ashley
Peppy05• in reply to
Hi Ashw88, I'm still taking vitamin b1 since 2015 when I was diagnosed. Are you still taking vitamin b1.
• in reply toPeppy05
Hi Peppy, yes I've been told to keep on the vitamin b compound as well as thiamine for the time being, can only say I've done what the Dr i see every 4 months at hospital recommends. I also take folic acid, vitamin d (all advised by my Dr) but each case is different.
Been told turmeric and milk thistle are supposed to help with liver issues (bit late now lol,) but dont know much about the exact science with them. Hope this helps. Take care.
Ashley
Laura009• in reply to
Hi Ash. Your liver doesn't need any supliments to heal it just needs to be protected by not throwing booze , fatty and sugary foods at it and just allow it time to recover. Milk thistle can even be dangerous to the liver so please stay away from it. The trust posted about it here just the other day.
Best wishes
Laura
• in reply toLaura009
Hi Laura, ok that's good to hear about the milk thistle and supplements, I personally think it's all a fad for these companys to make more money of us to be honest so thanks, I wont be going near that stuff then.
I'm clean living now which is new for me, I've packed up the drink hardest thing I've ever done, eating a whole new diet (living like a monk lol) bulger wheat,quinoa, cauliflower rice all the lovely stuff.. 🤣 but I've lost 4 stone since November 2nd so doing good with that.
Just learning what I can and cant do with my gym routine takes a bit getting used to but I'm getting there, and all the good messages and advice on here is brilliant for the positive outlook I want to continue. Hope your doing ok?
Thanks for the advice Laura take care.
Ashley
Laura009• in reply to
Great news Ashley. You will reap the rewards of this healthy lifestyle. Glad to help where l can. I watched alcohol kill my husband and if my bit of knowledge can help others survive this damn poison, I'm doing what he would have wished for.
Laura
Peppy05• in reply to
Thanks Ashw88 for your reply I to take turmeric my liver doctor told me to take it because I ask him why when I walk my foot hurts so bad, he said it's the weight I gain because I was anorexia when i was diagnosed with cirrhosis and and my body wasn't use to the all that weight, it did help. Take care
Peppy05
• in reply toPeppy05
Hi Peppy05, I'm the opposite I need to lose weight not gain if it's not one thing, it's another. I take turmeric asked my Dr and he said research has been done it can help certain individual cases but they say that about everything but I feel good at present, so not going to stop even though I take more meds than Boots at present. Take care.
Ashley
Dealing with the up and down energy level is something I have learned to live with. I have found certain foods for example rice, and fried foods make me feel horrible weak. But then again certain healthy foods such as salads and veggies also have a tendency to make feel bloated.
That is a score involving how much of your Liver is covered by fat as well as your it is basically a fibroscan score you are grade S3 (not good.) your Liver is over 67% fat involved. Change your diet immediately! No fast food and concentrate on veggies and clean whole grains with chicken, Turkey, very lean beef and fish baked not fried. You need to get the fat reduced on your Liver. Get with your Doctor and seek other advise to get this under control. Exercise is also recommended!
Hi and welcome,
Well done on your abstinence and lifestyle improvements. We would suggest that you consider requesting an appointment with the consultant in charge of your care. It is important that they sit with you and interpret your test results and explain your diagnosis and plan.
Keep us posted,
Best wishes
Trust1
• in reply to
Hi trust. I went to see my consultant on the 16th Feb I asked him about the cap score. He just didn't seem concerned at all. I said how come it's gone up 3 points he said 3 points neither here or there. Said its not got any worse. Before I left I said do I need to go on any special diet! He said no at first, then said just a low fat one. That was the end of it. So where do u go from there?
• in reply to
If you need to give the nurse led helpline a call, it is open today until 3pm on 0800 652 7330
Best wishes
You mention CAP score on both scans, others will correct me if wrong but that means BOTH were fibroscan not ultrasound scans!
Have you had basic ultrasounds to confirm your diagnosis and check for abnormalities?
At a minimum you should have ultra sound scan done every 6 months (and bloods).
Fibroscan is only part of the diagnostic toolbox!
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