Advice….Denied Fibroscan when it’s the Only way to answer my questions after Cirrhosis diagnosis. Worth going Private?

[DaveQ67]

Hi folks,

I was diagnosed 18 months ago with decompensated cirrhosis.

ive worked my socks off to get compensated then forwards to the best diagnosis possible and feeling great, from an initial grim diagnosis.

My most recent U/S went the usual way. The polyp found, turns out to be a very small gallstone, apparently a side effect of my weight loss? Never knew that!

my liver was a normal size, no lesions etc.

I’ve always wanted to know how much scarring I have/ fat / KPA/ CAP etc. I’ve never been told.

I asked the Dr doing the scan. I was told very small amount of fat, a little bit scarring. I had to push to get that. She said the only wayTo tell me is a Fibroscan. However I’ve been told I will not get this through the NHS now that I have a diagnosis.

Has anyone else had experienced this? For me it’s the mental side knowing or potentially seeing the slightest of improvement. It gives you a wee bit hope every time there’s a nugget of good news ( if you can call it that).

Any info would be appreciated.

Thanks!

[Coligate123]

Hi Dave , I do hope you get some responses as your question is one that I often think about as I would also like to have some tangible proof that I’m improving in my efforts. Good luck..Pat .

[Kingbilly3]

I was diagnosed 18 month ago with decompensated also and I get fibro scan every 6 month my last one was July I think and was told I am compensated, the compensated stage is worked out by your symptoms ie, I was not yellow anymore, my ascites were gone, my blood results were good, so am pleased with that considering I was told I was to poorly last march to go on transplant list and would be dead before one came available

[Sunnyskies33]

Great job you've done, Dave! I'm in the U.S. so not sure how getting tests works over there but maybe the nurses at British Liver Trust hotline could advise? I think follow up Fibroscans would be important. Well done and best of luck!

[Oscar21]

I was diagnosed with decompensated cirrhosis over 12 years ago. I am now compensated. I have never been offered a Fibroscan. The Hepatologist stated that because mine was due to alcohol, of which I have abstained from since diagnosis, then the fact that my health has improved immensely without it, therefore there is no need to give me a Fibroscan. I have an Ultrasound scan every six months

[DaveQ67 in reply to Oscar21]

thanks, yes mines too caused by alcohol. It’s more that it gives me a picture of where im actually at. The tiniest bit of info would help. I was told because I had been diagnosed I would get one now. Just wondering if anyone else experienced this. Thanks

[Breakfastbabe in reply to DaveQ67]

My husband was in the same situation 4 years after diagnosis. He did get a fibroscan eventually this year and we were told it just confirmed he had cirrhosis but that US and bloodtests gave a better picture of how bad along with symptoms such as ascites, varices, HE and jaundice.

[Smegmer]

If you are sure you would feel better knowing a number to work with, then I would say go for it. I ended up going for Fibroscan and the London Clinic, cost about £500 with bloods and a meeting with a Liver professor.

[Hayley2904 in reply to Smegmer]

yes I went with a private clinic in London and a very knowledgeable liver professor. Was a very unexpectedly bad result based on very good blood results and he then did an MRI scan which showed liver working ok but gall sludge, follow up in a year

[kensimmons]

I would say yes it is worth going private for peace of mind. What price can you pay for peace of mind?

[0range5520]

Hi, I was originally diagnosed with Cirrhosis via a Fibroscan almost 2 years ago, no symptoms apart from abnormal bloods. I have ultrasounds every 6 months which have been normal apart from the last showing enlarged hepatic veins ( waiting for follow up appointment). I asked about repeat fibroscans and was told I could have one at the 2 year mark, which is a couple of months

[Cascade35]

Absolutely go private for a Fibroscan and flow up appointment with the private liver specialist at the clinic where you would have it done. It would be money well spent I’m giving you a clearer picture and therefore piece of mind. You’ve worked hard and you deserve to know the full picture now.

[Confused2024]

I would highly recommend you pay for the private scan if you can do that, a friend of mine recently did get one after 2.5 years and they had a 10.9 kpa....it is worth it.

[Mamastevo19]

Its likely you actually experienced alcoholic hepatitis. You can decompensate without having cirrhosis. It's pretty hard to recompensate entirely with zero side effects once your cirrhotic liver has started to decompensate. (I work in GI).

[DaveQ67 in reply to Mamastevo19]

Thanks for your response. I have recently had an US which still confirms scarring of the liver ( albeit a small amount) I have 1 minor varices on diagnosis, this was almost 2 years ago, I’ve requested an endoscopy to see if this has improved.

In your experience does scarring still present with alcoholic hepatitis ?

The rational given to me to be denied a fibro scan is that I’m already diagnosed with cirrhosis so be need to know any further results.