Hi. I drink very rarely. Following pneumonia in Jan 24, I had a series of blood tests and a fibroscan. My ELF score was 9.86. I have been told that my fibroscan score is 49.6 kpa, which indicates cirrhosis. I'm having an utrasound and endoscopy soon.
During the fibroscan, I was told that my ribs were very close together. Could this affect the kPa score?
Im not overweight and do not have diabetes. I do have coeliac disease. I have lost around 7 lbs (without trying) in the last few months and have what GP says is sarcopenia.
Apart from being very tired most of the time, I don't have any other symptoms. I'm at a loss how this has come about.
Many thanks
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NorthLeedsJohnny
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Hi Johnny, I’m sorry that you’ve had some disappointing news. There are so many things that can affect our livers: autoimmune diseases, genetics, viruses, chemicals, medication not just alcohol. We just get unlucky sometimes and liver symptoms are so vague that it often isn’t pucked up until they test for something else. Hopefully these tests will get to the bottom of it. There have been some good news stories on here recently so have a rea and take hope from those.
As Readlots has said, many things can affect the liver. Perhaps the blood tests yielded some clues. I am glad you are having further investigations. Constant tiredness and weight loss without trying would concern me. That said, I had pneumonia myself this year and it is very debilitating. So the tiredness could be related to that. Likewise the sarcopenia if you have not been able to exercise due to the tiredness. (I assume the GP explained what sarcopenia is, but it is basically muscle wastage - often encountered in the elderly or frail people who are unable to do much in the way of exercise). I wish you well.
Been where you are.Now, my liver has healed to the point where I have fibrosis, not cirrhosis. It can happen, takes change and some luck. While your liver is cirrhotic, you have to feed it, otherwise, it will eat the protein wherever it can find it--your muscle in your legs, arms, anywhere, including your heart. So, eat eggs if you can stand it. You should also try some peanut butter at night to keep your liver fed during the night. Otherwise, pour a wide variety of vegetables and fruit into your body. Really eat the gamut. But focus of the greens and the colorful ones. Give us an update on how you're doing.
Thanks for your advice. I'm seeing a dietician on Tuesday, so hopefully, I'll get some info along the lines of what you suggest. Do I need to be eating far more calories than usual, or just make sure that they're mainly protein?
I’m kind of in the same situation where I likely had decompensated cirrhosis and now they are saying fibrosis having reduced my fibroscan score from 22.2 to a 9 and it’s all down to quitting alcohol, eating healthy and regular exercise.
However, deep down, I think I maybe do have some form of cirrhosis. Maybe not to the extent of the widely known and medically defined level, but my doctors for some reason won’t diagnose me one way or another and remind me only that my liver has remarkably remodelled, is healing, is doing everything it needs to do and should do and that to keep doing what I’m doing.
The more I research and learn about liver disease, I believe that there is an obviously a definitive stage or type of cirrhosis which is cirrhosis and there can be no denying that, and then there is borderline which I’m likely at. Which is a stage of scarring where my liver is compromised and damaged where there is cirrhosis type scarring and not just fibrosis which is scarring itself, but there is not enough of it to be fully cirrhotic and therefore right now it can heal further where whatever level of scarring there is recedes totally or it can get worse and lead to full blown cirrhosis.
Some doctors and hospitals would diagnose me as having cirrhosis, but my own won’t and even said they could do a biopsy and it could come back yep cirrhosis or come back nope, no cirrhosis, but could still be wrong, that only removing it and putting it under a microscope would reveal fully whether I have cirrhosis or not or the rue extent of damage caused.
What do I believe? I actually believe there is two types of cirrhosis, compensated and decompensated that much is true, but I believe there are levels to both in terms of scale or sliding factor. You can have decompensated cirrhosis from 1-5 and the same for compensated, and I’d say I’m at a 1-2 compensated. All of which is good for me, but only if I stick to zero alcohol, a healthy diet and regular excercise, and good luck of course.
I’m no doctor of course and this is just my theory and opinion and maybe why people present symptom free or have a clutch of complications or have perfect or normal bloods, LFTS etc. yet have high fibroscan readings or have low fibroscan readings and yet still have abnormal LFTs etc.
Now I think I quite like that my doctor hasn’t diagnosed me one way or another, because I think it would be the right diagnosis for me based on my bloods, my LFTS, fibroscan and US results and because of my liver disease aetiology which is alcohol and a poor diet. I had a cap score of over 360, it only goes to 400. It’s now 144 or was which is really really low. My liver has healed because I’ve removed what was damaging it, alcohol and fatty processed foods. Will it heal more? I hope so. But I think the damage I did to it, it’s now too far gone for any of the scarring to be reversed fully so it’s about maintaining it and keeping it compensated which I plan on doing.
I could be wrong of course, but looking at liver disease, there are so many factors involved, so many differing causes and so many complications and symptoms, that all appear to affect everyone differently, that and even the experts seem undecided on stages, levels and degrees and even their own models for diagnosis, life expectancy, when complications will appear or not and how best to deal with them, can all different. Child Pugh, Meld, decompensated, compensated etc.
Ascites is the one complication I dread because medicine doesn’t fix it and nor does draining. That liquid appears from somewhere and out of nowhere so where is it coming from and what’s exactly causing it and how do we stop it and fix it once and for all? That’s where I’d like to see more research and development and funding go towards and where I believe if a solution can be found, many of the worse complications of cirrhosis will simply not go on to develop.
I was drained and given medication which helped, but didn’t fix it and the medicine I was on was affecting my kidneys and making my hands tingle, tremble and cramp up. So I looked into natural diuretics and what my body was lacking at the time and what my liver needed the most and low and behold it was good clean vitamins, minerals and PROTEINS which can all be found in natural food sources from water to coffee and teas, to plants, nuts, seeds, fruits, vegetables and lean meat. No more ascites, no more medicine, now a compensated liver doing what it needs to do and should do. They can keep their diagnosis, I’m happy with that and it lurking there keeps me on my toes.
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Fibroscans that do not give CAP score?
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