Latest fibroscan

[Iro1]

Hi The latest stage of my liver journey; previously diagnosed with cirrhosis but not offered any follow up by hepatology or the six month check ups, I was finally able to get the department to review my status.

This was because I had the good fortune to speak to a nurse that understood that because the consultant had used 'cusp of cirrhosis' Chinese whispers had transformed advanced fibrosis F3/4 into cirrhosis and been put on my medical record.

Within a week they had organised a fibroscan to resolve the matter:

May 2019 kpa 10.8 cap 348

August 2020 kpa 9.8 cap 308

Today kpa 8.8 cap 329

Whilst the rise in cap is unwelcome the nurse who performed the fibroscan and who was also the nurse who I had spoken on the phone was able to tell me that I am F2. I need to work on my diet for fat infiltration, whilst I have avoided carbs in my diet I need to make more effort with fat intake.

No need to wait for a letter as the nurse (who was in fact the same nurse I had spoken to on the phone so knew my history) was able to interpret the result on the spot.

I am now on the appropriate NICE pathway, Referred back to the GP with a simple ELF blood test in three years.

No need for six monthly US which cost the NHS money.

The nurse said that if I could get my cap below 280 and my KPA below 7.5 I would be in the clear; that is what I am going to work towards

Iro

[deanw41]

Excellent news! Sounds familiar too, I’ve had to push for my diagnosis to be questioned in the absence of an initial Fibroscan and receiving letters saying ‘ No significant change’. Mine too is 8.8 and latest US says Mildly Fatty Liver

[Iro1 in reply to deanw41]

Hi mine was complicated by my suicide attempt after an ELF result of 10.8 and some inappropriate googling as well as a drop in testosterone which now appears to have been entirely coincidental and anyway was not that great a drop and easily rectified with testogel every day.

I read that a drop in testosterone meant you had advanced cirrhosis, six months later I tried to kill myself again and was put on section 2 of the MHA followed by section 3. It was here that the unit 'doctor' who could barely speak english diagnosed me with cirrhosis. He had read that I was on the 'cusp of cirrhosis! Little known fact, there is a group of 'letter writers' in each hospital that respond to enquiries from mental hospitals. They condense notes from departments and send them on, my consultant in a Shakespearian flair had written 'cusp of cirrhosis' when F3/4 Advanced Fibrosis is what he presumably meant!

The letter writers are a kind of B2B part of the health system and you never see what they produce and send, you just get taken into a room and told the bad news.

This record of health anxiety and associated psychosis meant that, not unreasonably, I was not taken seriously by medical professionals.

Anyway thanks to the BLT nurses and a liver nurse at Southampton who actually listened to what had happened and also made the effort to turn up actually perform the fibroscan herself which meant she could give immediate feedback she even printed off the standard letter (they are usually done by non nurses trained to use the machine, this has been my previous experience).

Really 5 star treatment.

My appointment with hepatology in June will now be cancelled and I am signed off, ELF test in 2026 by my GP .

I have lost about 21 kgs from my biggest weight but I am aiming to lose at least another 15 kg.

I want all the fat gone, whilst fat remains in the liver there is always going to be a risk.

Funny that you are also a '8.8', it feels better than being a '10.8'!

IRO

[55spenc]

Hi Iro1

Well being diagnosed with Cirrhosis 22/09/2022, I had my first 6 monthly HCC scan 07/03/2023 I was strangely excited to see the hard work it had taken to lose 3 stone, completely abstain from alcohol, endoscopy exam clear & not a single symptom of my diagnosis! I was met with a STUDENT and the most uneducated nurse I have ever been unfortunate to meet huh ( pay rise) I wouldn’t pay her in chocolate buttons! Did not ask who I was, no date of birth check no address check could have been anyone. I Sit on the bed all excited about the following findings! Student at desk and opens the screen to begin! Nurse sitting over her shoulder and says in the loudest voice Ooooh that’s cirrhotic isn’t it! WTF, sat up on the bed and said WHAT did you just say! Could you have been a little more diplomatic FFS. I then said are you telling me my condition has got worse! No she exclaimed! I DONT know what I’m looking at as I don’t have your information! Well if you turn your lazy arse around there is a computer behind you, firstly you can identify me, then gain an understanding of why I am here Ahhhhhhhhhhh! This damn NHS and country! The only potential slight positive to come out of it, as opposed to prominent course echo texture on previous US, the STUDENT exclaimed!!! That’s smooth isn’t it? the so called experienced body requested to switch to LS mode ( I assume a more intensive setting ???) and said it’s quite faint)???? Can anyone shed light for me?? What a devastating experience and I am furious what can I do about this as to patients charter?

[Iro1 in reply to 55spenc]

If it is smooth that is good news, I do feel your pain, hope you can resolveIRO

[jbrking]

I was diagnosed with nafld when I was 38 (I’m 54 now). My ALT was stable around 70. Last year my ALT went up to 120 for 3 blood tests, so my GP did elf and fib 4 tests. They indicated fibrosis so referred back to consultant for fibroscan. Results F3 12.7 kpa and 334 cap. Told back under hosp and will get annual checks. No other advice than to lose some weight. I’m not huge (size 16 woman) because in the last 2 years I’ve managed to lose 2 stone, slow but steady and staying off. I also have a bowel condition so I can only eat what suits that. So consultant said she doesn’t care what I eat just lose some more - I use fitness pal app to log calories. I have arthritis so find exercising difficult. I was doing ok for years and now struggling to know what else I can do.