Hi All, my husband was recently told he had an enlarged liver ( spotted when having a gastroscopy ) and that he would get a follow up fibroscan - this took a few weeks and then we got the results by letter which completely shocked and scared us! It stated he had F4 liver cirrhosis and S3 fatty liver and various other numbers which we had to google to try and understand - (this site has also been helpful) - anyway we pushed to get an appointment with the consultant and he has stated his liver function is fine but he needs to seriously lose weight and try and get the fatty liver score down by Xmas - we are so happy with that as we thought he had serious cirrhosis with 2 years to live ( google diagnosis!)
Anyway we just still don’t understand the F4 liver cirrhosis on the results - Has anyone else experienced this??
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Tmrw
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Hi and sorry you are going through this right now, what was your husband’s fibroscan results if you don’t mind me asking?
You will get a liver stiffness score which comes back in kpa, and a liver cap score which is how fatty or not the liver is. Fibroscans, if the liver is still inflamed or damaged at the point of the fibroscan, can deliver higher scores and may not always be representative of the actual true damage.
For example last June 2023, mine read 22.2kpa and over 360 cap score thanks to alcoholism and a very poor diet for over a decade, January just gone it it read 9kpa and 144 respectively which doesn’t mean there isn’t or hasn’t been any damage to the liver, just that it’s now settled down and healing so the good news is even with high numbers, you can get it down.
I had an extreme fatty liver for example and likely decompensated cirrhosis, now they are saying in line with moderate fibrosis after remodelling of the liver. I had to quit booze full stop and will have to do so for the rest of my life and also adhere to a strict healthy diet.
My most recent scan June just passed it crept up to 9.9kpa which I can only assume is down to me not sticking to my strict healthy diet as much as I was doing, so this shows that while results can go down, they can also go back up, the key is to stop any damage to the liver because if you can, it’s a remarkable organ that can remodel and heal itself even to the point fibrosis can be reversed if not too far advanced, cirrhosis, however, cannot be reversed, only managed and maintained.
Don’t read google, have a good read around here there are some amazing real life stories where people have shared their experiences and journeys. Take care and good luck to you and your husband,
Thanks for reply! KPA was 32.3 and CAP 349 - def says F4 cirrhosis on letter but consultant wasn’t concerned and said he didn’t actually have cirrhosis. - he doesn’t drink but is overweight so will be dieting to try and reduce from S3 - it’s all very confusing!
Hi Tmrw, I agree it is all very confusing, I’ve been seeking answers since I was hospitalised with jaundice and ascites back in March 2023 as to what stage of liver disease I have (originally they thought I had decompensated cirrhosis as per obtaining my medical records from when I was in hospital which they don’t like to show you).
Today, I have been told there is definitely scarring which is obvious anyway as that’s what fibrosis is, but that unless they remove my liver and put it under a microscope they couldn’t 100% tell me either way other than what my current bloods, imaging and fibroscan results are showing so that’s why they are going on and I’m kind of feeling from them to be happy with that and carry on doing what I’m doing.
Not even a biopsy would be 100% accurate I’m told as they could scrape a bit of scarred tissue or a bit of unscarred tissue. From what I’m researching myself, it seems a liver can be cirrhotic without being 100% cirrhosis so there is definitely stages to the scarring as there are stages to the type of cirrhosis, compensated and decompensated.
Regarding your husband’s results, the stiffness reading would put him in the cirrhosis camp so to speak, but then so did my 22.2 reading. It’s clear his liver is inflamed and damaged so by losing weight and eating healthy and getting regular exercise there is no reason why both the liver stiffness and liver cap score can’t come down as one has and plenty of other peoples as evidenced on here alone.
I wasn’t overweight, in fact I was underweight, but my diet was so poor, towards the end I wasn’t even eating much at all, it was all alcohol I was consuming, so my extreme fatty liver wasn’t a surprise on top of the alcohol hepatitis. It’s a myth only “fat” people get fatty liver as much as it’s a myth only alcoholics get cirrhosis and it’s a myth also that the seemingly super healthy all have healthy livers or should do. Genetics, our diet, medication, alcohol, drugs, they all take a heavy toll on our bodies and liver disease is now quite common in younger people as a result of our lifestyle, people under 30 are getting cirrhosis for example.
He will obviously need more imaging done, bloods, scans etc. and while his doctor may say he is OK and doesn’t have cirrhosis, I wouldn’t go off that myself, he’ll need to see a hep and gastro doctor who are experts in their field for a real diagnosis or for further plans of action to remedy, reverse or maintain whatever damage has been done.
Him not drinking is a good thing too as that can be ruled out as the cause of liver damage, of course zero alcohol is 100% the way forward for any damaged liver regardless of the cause.
There are some key factors they also consider when diagnosing cirrhosis other than scans, imaging etc. which is platelets, INR, urea/creatine levels etc.
If he hasn’t had them all checked, he will need to.
Again, don’t read Google, I did and it scared the hell out of me, go off what the experts say, if any medication is given stick to it, stick to any appointments, seek advice on nutrition, diet and be pushy with doctors, you and he have to be your own health advocates, that’s what I’ve learned, that and our health’s are really in our own hands and even with serious illnesses and ill health, we can bounce back and keep going stronger, fitter and healthier. Whatever stage my own liver disease is at or was, this is the healthiest and happiest I’ve ever been, I have a few issues still, but I was dying March 2023 and my LFTs were off the scale as was my extreme fatty liver which I’ve totally reversed, if not the scarring…
Many of us had lower scores than that and were diagnosed as having compensated cirrhosis.Our livers are working fine just like his but are damaged and need to be treated with respect.
His diagnosis is probably the same and he should be put on 6 monthly scans and bloods to check for any changes.
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