Diag with NAFLD Cirrhosis from biopsy, doctor said theres no difference between a 15kpa and 30kpa fibroscan score, confused?

[ar_123]

Hi guys, I had a fibroscan score a couple months back of 30kpa which I took to suggest I had fairly advanced cirrhosis, had a biopsy which confirmed cirrhosis, when I was told the results I asked for liver doctor if given my fibroscan score of 30kpa it meant that I was far gone and could expect to become decompensated at some point soon, he said that the score of the fibroscan didn't make any difference when it was over the diagnostic threshold for cirrhosis (14.5 for nafld) and I shouldn't make a thing of the score? Is this the case? I worry that with my fibroscan score it must be far gone, I had an ultrasound and the person doing it said the cirrhosis wasn't visualized on the scan but the liver was fatty, of course I know I have cirrhosis from the biopsy but really don't know where I stand, had my bloods done couple days back and calculated my MELD at 9, only thing really bumping it up is my bilirubin which is 24 (upper range 20), alt was 80 (down from 160 6 months back), platelets 247k (down from 303 6 months back but up from 213 1 month ago). Keep getting twingy pain in liver when I eat and right shoulder pain, have a rash (maybe unrelated) and sometimes a bit tired (hard to know if related). I know I'm considered compensated but anyone have any idea with a fibroscan score of 30 how long I can realistically last before decompensation? I am overweight with a current BMI of 35 (lost 2 stone so far), aged 33, never consumed alcohol.

With blood platelet levels I know in cirrhosis patients they can be low, I was worried about mine dropping but the doctor said they are still in range, but surely the concern is the downward trajectory not the current level? On the recent ultrasound it was noted that mean spleen size was normal (I understand this relates to platelet levels).

I have also been told that if spleen size is normal I am less likely to have varecies (not had an endoscopy yet), anyone else heard this?

Thank you!

[AyrshireK]

Anything over about 11.5 kPa where Non Alcohol Related Fatty Liver is the cause is considered cirrhosis - anything above that figure remains just that 'cirrhosis' and there is no difference in the diagnosis whether it be 12 kPa or 75 kPa so as your liver doctor said don't read anything more into that score. (My hubbies doctor won't even run a fibroscan because we know he has cirrhosis and a fibroscan will add nothing to that diagnosis).

What matters now in your case is dealing with the underlying cause and trying to get all liver numbers into their normal ranges and remaining compensated.

There is no way of knowing when or even IF you will ever become decompensated but what is important is trying to get the weight off and reducing the level of fat in your liver. Being fitter and generally healthier can help to slow or even stop liver disease progression and potentially even reverse some of the damage done.

To give you a wee positive slant on things - my hubby was diagnosed with non alcohol related / auto immune cirrhosis back in April 2012 and it only came to light with him displaying serious symptoms of decompensated cirrhosis. He was assessed and listed for transplant in 2014 but because his condition stabilized he was delisted 10 months later in 2015. All these years later he remains relatively stable, has no signs of decompensation and lives his best life (ok not 100% fit or well). He has been doing lots of cycling over the past couple of years and keeps himself as well as possible. Life with cirrhosis doesn't need to be ALL doom and gloom. It is possible to get and keep yourself well.

Katie

[JimmyJackson]

I found fibroscan worse than useless my specialist has stopped them

[Roy1955]

Liken it to a pregnancy test.You can't be a little bit pregnant!

Once diagnosed the fibroscan numbers don't matter.

The only things that matter are the symptoms and illness that cirrhosis can cause.

Cirrhosis is a condition not a disease and the aim is to stop it becoming a disease.

Even getting a lower score now (I did) does not mean it's gone.

[Jans1953]

Hi. I was diagnosed with NASH cirrhosis in 2002. Had blood tests LFTs were awry. So I had an ultrasound and then a liver biopsy.I lost 3 stone (42lbs) and liver tests improved. However I had cirrhosis and that was that. I had no symptoms at all until 2016 when following a long trip I developed ascites hepatic encephalopathy and diarrhoea. Finally was referred to a hematologist who told me I had decompensated liver. Started on medication and the dreaded lactulose and was seen regularly until I finally got my transplant in Auguat 2018.

I guess what I'm trying to say is you can have cirrhosis for a long time without problems (in my case, 14 years). It's not wise to think things will happen quickly.

Live your life to the best of your ability.

[Onesmallstep1969]

Fibroscan can be unreliable. Get a magnetic resonance elastography (MRE) to know the state of your fibrosis.