Recently diagnosed cirrhosis but yet to see consultant so I don't know if I am compensated or not. I've been brought forward to see hepatologist from mid April to next Monday due to a cancellation. I've had full liver profile of bloods. According to my GP everything was normal apart from low platelets and enlarged red cells. A CT scan (for something else which was negative ) identified the liver damage but didn't show any ascites and GP said they would have been picked up.
Gastroscopy booked for March 11th but no idea if / when a fibroscan will be carried out.
I've seen a private MRI Liver Multi Scan with Vista Health advertised. Has anyone experienced this and if so have NHS doctors used the report? I don't want to waste time and money if it's no use to my NHS consultant.
Any comments / advice welcome. I'm trying to get my head around how complext this all is.
No alcohol taken since diagnosis 16 days ago.
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AnxiousPete
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Hi Pete, I’ve never had an MRI for my liver so I’d wait to see the consultant and discuss what tests may be needed. That will also give you a bit of time to adjust to the new situation. It’s a lot to take on board and get used too. Fingers crossed it’s compensated and you can turn things around.
I get an MRI every 6 months or so.. It's free here in the US (for me at least). Insurance covers it. That is the best way to identify if/how far advanced the cirrhosis is.. Some people say a biopsy is the best but no doctor here has ever mentioned that to me. Might be a little antiquated in their eyes.
As far as platelets, mine haven't been normal in 8 years. Low of 28,000 and a high of 149,000.. Above 150K is normal..
Wait till you see your consultant on Monday and ask them to explain the care plan and what other tests they think you may need. They will guide you on next steps. If you don’t have ascites and your bloods are normal then at present you are probably compensated. Go prepared with a list of questions for your consultant. There’s a good page on the BLT web site on questions to ask your consultant which is really useful.
If you have a confirmed diagnosis of cirrhosis you probably won't get a fibroscan .... my hubbies consultant says it would add nothing to his diagnosis as we already know he has cirrhosis. You should get 6 monthly scans to check your liver for any changes, in the UK this is usually an ultrasound or sometimes a CT.
Push for it. I was diagnosed with decompensated which then became compensated cirrhosis through abstinence and I believe potentially an initial situation exaccerbated by bad covid. My first fibroscan after 18 months of being seen and saying i just wanted to known the extent of damage (CT and ultrasound not really doing this) was 6.7 which my consultant didn't believe.
My second taken with over 20 readings had a median of 7.3. The first set is f1, the second barely into f2. The ultrasound shows a 'coarse ecotexture' and my fatty liver score isn't good but the lack of fibrosis is obviously good news and appears to be contradictory to classical cirrhosis which as far as I understand it is f4. I am left still confused by my diagnosis and prognosis. If anyone has any ideas I'd really appreciate hearing them...
I appreciate that the unknown and uncertainties can be concerning. However, with having your consultation on Monday there isn't much point going off and getting any private scans done. There's just no need. Save your money. An MRI may not even be the right scan for you. Indeed, even a simple ultrasound can pick up the signs of cirrhosis. MRI does have its uses, but isn't isn't always necessary. If your consultant thinks you need one then they'll get that sorted.
Same with fibroscan. If its clear on imagining the there not much need for the fibroscan. Its not going to tell them much more than they already know.
Yeah its always worth asking these questions. Especially as there are likely to be other cheaper ways to get some of those results too. So yeah, save your money until you need to spend it, lol. In reality though, there's pretty good protocols in the uk that the consultants tend to follow which will give them the answers they need but avoiding anything that may not be needed. So any scans needed they'll tend to arrange anyway. Hope all goes well Monday 👍
It is hard to get the head around it all. Overwhelming I know.
Well done on staying abstinent. That is vital as you obviously know.
I was diagnosed July 2023. They did ultrasound and bloods and from that they told me I had decompensated cirrhosis. I had an endoscopy and sigmoidoscopy in the meantime to check for internal bleeding.
No fibroscan or any other tests were done. I’m on some deuretics, protein shakes and just started carvedilol for portal hypertension last night.
Attending my consultant appointments and getting the bloods done there.
From what I have learned they don’t need to do every test to diagnose and treat you unless they feel it’s warranted.
Now that I’m over the 6 months I’ll be back again for an ultrasound to look at the liver and other organs. They can also spot liver cancer here too apparently. Hope that helps a little in what they’ve done with me however we are all different & I support some patients will need different tests carried out. I live in Ireland so they may do things a little different in the UK.
Have to say I would be lost without the British Liver Trust website. All the information is there really in a nutshell.
Wishing you the best and I hope you get some answers to your questions soon.
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