Can anyone offer some advice/further guidance on a recent diagnosis…

[Missmc89]

Hi all,

I am new to the forum and just looking for some clarity from someone who has more of an understanding from their own experience.

After countless hours of googling trying to work out what’s going on with my mum’s recent diagnosis and worrying myself sick, I feel even more confused than ever.

Long story short, my mum (57) had a recent fibroscan and a follow up call from the doctor where she was told the doctor was concerned about her KPa score rising in the last 12 months from 9.1 to 17. On the back of this she has been referred to a liver specialist for another scan in February.

After having googled the liver stiffness score I’m really worried this is indicating she has developed cirrhosis from her previous diagnosis back in Dec 23 on the letter which states the diagnosis was hepatic steatosis, unclear cause with a score of 9.1. CAP 297

My mum doesn’t understand the results either and said the doctor didn’t confirm over the phone whether she now has cirrhosis or not based on that score.

what I don’t understand is how can a previous score of 9.1 be diagnosed as steatosis as looking at that Fib score chart the number indicates something more severe like fibrosis and also my mum was under the impression that she did have scarring on the liver from previous phone calls.

To make things even more confusing I requested a copy of her medical records from her GP and back in May 22 it says cirrhosis of liver under active problems, but then also states in Dec 23 steatosis of liver - how can that be if cirrhosis cannot be reversed and the stages can’t go backwards? Why would they now be diagnosing it as steatosis and not cirrhosis?

I am so confused.

Basically just need to know what stage she is at and the severity, and none of the recent diagnosis letters she has received have mentioned cirrhosis, I can’t find anything dating back before 2023.

Can anyone offer an opinion on this and whether I am misinterpreting things?

Thanks a lot

Nat

[Sunnyskies33]

Hi. As you noted, the Fibroscan has two scores...my understanding is that the kPa is the score for stiffness which suggests scarring at certain levels. The CAP score is for fatty change (steotosis). Cirrhosis can result from inflammation caused by the fatty liver over time. So a liver can be both fatty and have scarring. The scarring may eventually reach the cirrhosis level if not reversed. The specialist your mom sees may want to run more tests before diagnosing. Sometimes Fibroscans can overestimate the kPa if there is current inflammation for example. Perhaps notes in her file were based on other testing as well (blood tests, imaging, biopsy) ... that would be a question for her gp or specialist. I wish your mom and you all the best. The British Liver Trust has info on how to eat healthy for the liver, info on various tests and diagnosis. Your mom can also call their nurse helpline if she is in the UK. She'll definitely want to avoid anything harmful (like alcohol and added sugar) and eat foods that are helpful to the liver while awaiting her February appt. Can you call her gp with her to find out more?

[Missmc89 in reply to Sunnyskies33]

Thanks a lot for your reply and insight. We are going to call her GP to try and get an explanation of the notes on her medical file and guess we will have to wait until Feb to speak to the specialist to understand the full diagnosis. By the looks of the letters she has had previously the cause for the fatty liver is unknown which has probably led to scarring on her liver.

would someone who has scarring though still be diagnosed as hepatic steatosis? Because that’s all it refers to on her results letters from previous scans.

Surely that means it would have now moved to fibrosis stage?

However there is no mention of scarring on her letters despite the high KPA scores recorded, unless it comes under a different medical term that I have missed.

[AyrshireK in reply to Missmc89]

The earlier fibroscan which scored 9.1 kPa would put her in the F3 (severe fibrosis with some bridging a.k.a incomplete cirrhosis). The CAP score of 297 would be S3 (Steatosis grade 3) where more than 67% of the liver is showing fatty change.

There are two main causes of a fatty liver - either alcohol or now more commonly NAFLD/MASLD (Non Alcohol Related Fatty Liver Disease / Metabolic Disfunction Associated Steatoic Liver Disease). Information about which can be seen at :- britishlivertrust.org.uk/in... There can be several contributory factors to NAFLD - thyroid issues, other medications, carrying too much weight, poor diet, insufficient exercise etc. (you don't have to be fat to have fatty liver disease).

If fatty liver is left untreated then it can indeed progress to fibrosis and eventually cirrhosis - the kPa score from the latest scan would be into the cirrhosis range if it is NAFLD / MASLD causing the rise. That being said as Sunnyskies has pointed out this can be a falsly inflated reading IF there is any inflammation ongoing in the liver - the result has to be looked at in conjunction with blood test results and any previous tests.

It doesn't sound as though she had a cirrhosis diagnosis earlier because she should have been referred to a specialist before now and been on the cirrhosis monitoring pathway which is 6 monthly ultrasound (or CT) scan and 6 monthly bloods ........... hopefully that is what will start to happen in the new year.

In the interim it would be an idea to look at mum's risk factors for liver disease and tackle these - if it is fatty liver then the BLT has a downloadable leaflet about tackling fatty liver with healthy diet and exercise which may prove of use. It is possible to slow or stop the progress of liver disease once the cause is found and even potentially reverse it to a degree. It would do no harm to start on this now even before seeing the specialist.

britishlivertrust.org.uk/do...

Don't go down the Dr Google wormhole as you'll only stress yourself and Mum out.

Katie x