how long do I need to wait

[Sophia1968]

hi all , sorry but it’s me again, I had my fibro scan about a month ago and as you know my kpa was 21.5 so really bad, I spoke to my doctor the other day to ask about the situation and she said they have not even received a letter yet either, so the previous doctor who told me it said severe liver impairment obviously read it on the previous scan, I assumed it was from the fibro scan and assumed they would be in touch soon…. I really don’t want to sound impatient and I’m happy to wait if it takes months before you hear, as long as I know, I’m just worried that I am lost in the system…. I have lost a stone in weight and am eating a lot more healthy so I am doing all I can from my end ( upped exercise as well) but I do worry incase there is cancer or varices and scared that unless they check me soon it will all be too late, im not being anxious or panicky I am actually very calm and level now, but I do not think I can move on totally until these checks are done ….. also just out of interest, I kvow many lowered their kpa ( a bit ) when they kept off alcohol , but I have never heard of anyone lowering it just by changing diet etc, would be very interesting to hear of anyone who has…. Thanks in advance , you lovely peeps xx

[Male47]

I'm unsure on this as my specialist liver nurse was the one that did my scan n showed me the readings right there and then. Due to have the scan repeated in 3 months

[Sophia1968 in reply to Male47]

aww ok hun, thank you anyway, is it the fibroscan they are repeating, how long ago was the last one xx

[Male47 in reply to Sophia1968]

Yeah the fibroscan. They said would do 3 months after the first but normally do every year or 2 years. They basically said I'm doing better after.2 months than they could expect in 6 months and as.liver cells regenerates every 100days it worth be worth doing again

[Sophia1968]

oh wow, that sounds promising, do you mind me asking how high yours was, also was it due to alcohol. If so extra well done because I know it’s not easy hun, good luck for the next one, hopefully it will be lower xx

[Furpal]

Hiya lovely, I dont like worrying you but I haven't seen my specialist in over a year, I just presume every six months he takes a look at the ultrasound and my bloods that my Dr orders. I was sent an appointment for February this year but it was cancelled. I like you have tons of questions. I'll keep everything crossed for you. 💖

[Sophia1968 in reply to Furpal]

hello my lovely, thanks hun, I know I need to be patient, it just worries me cos I don’t even have a consultant, I was just sent for the scan , I just feel like I’m left in limbo , I’ll keep all crossed for you as well and hope you get your questions answered soon xx

[Pitt12345]

Hi Sophie I have had fatty liver over 20 years and 2.5 years ago it was over 65% fat (S3). with kpa 5.6. I decided to have another private FibroScan two months ago after losing 18 lbs my fat was down to almost S1 (just 1 point into S2) with KPA 4.2. This was just done with diet and bit more walking

[Sophia1968]

wow well done you, I’m no so pleased for you, I know my kpa is too high to do much about but I’m hoping I can still reduce the cap which like yours was , stage 3 , im losing weight and plan to keep doing so, thank you for replying xx

[Tommy62]

I was 19.5 and the consultant told me I was borderline cirrhosis goodluck for the future hopefully you hear soon they are never in a rush to get back to you 2 years after my fibroscan they told me thinking everything was ok because I never heard anything fibroscan was 2018 rang me in 2020 mad

[Sophia1968 in reply to Tommy62]

oh Tommy I’m so sorry that you had a long wait, that’s ridiculous , I agree as well if you don’t hear you assume all is ok, and why wouldn’t you, I hope you are getting the right care now , good luck going forward xx

[AnxiousPete]

Hi Sophia - sorry for the long post but I hope the context is relevant. Sadly I think the timing of appointments etc depends what state your local NHS is in with gastroenterology / hepatology specialism staffing and service levels. Like many things it is a postcode lottery. I think I've been very fortunate but after referral I contacted my conultants secretary and after a couple of weeks she was able to offer me a consultation 6 weeks earlier than my scheduled one due to a cancellation. I had very sudden onset T2D late spring 2022 and as a health anxiety sufferer feared it was pancreatic cancer. I made diet changes and my weight was falling faster than it usually does when dieting so I pestered my GP for an abdo CT scan to check pancreas. I was stunned and horrified when he told me on Feb 1st 2023 that although the pancreas was ok my liver was cirrhotic. Like everyone initially I thought this was a death sentence. Thankfully reading google academic articles and being on here quickly gave me hope. I had full liver bloods done at my surgery (4 vials) and saw the consultant on Feb 20th. Bloods were in normal range but he confirmed cirrhosis from CT and suggested portal hyperyension. Since then I have had upper GI gastroscopy which showed grade 1 varices. My MELD score on the bloods was 6. I had a fibroscan 13.9 kpa with 266 CAP and I have a bone scan scheduled for this afternoon. I have my next appointment with the consultant in 4 weeks. I guess what I'm saying is I am teally fortunate the service I've experienced has been wonderful but I know many stories on here where that's not the case so I really hope you get some answers quickly. I have a stack of questions for my meeting about monitoring going forward. All I know is I will have 6 monthly ultrasound for HCC but I want to know if I will have regular monitoring of varices, blood tests to monitor MELD and further Fibroscans to see how I'm doing. My cirrhosis has dual aetiology so both alcohol and fatty liver but given the Fibroscan scores it looks like the obesity I've had for 30 years (I'm 64 now) is the main culprit. At my heaviest in 2020 I was 20st 10lbs - this week I hit 15st 11lbs so I have a fair bit to go as I'm only 5ft 8in . Keep doing what you're doing and good luck with getting the information you need

[Dolly1001 in reply to AnxiousPete]

hi Pete,

Like you, I was tipping the scales at an astounding weight. Both NAFLD & AFLD My reversal/healing seems to have come about, like you, with my paying attention to the details of my life I.e diet, exercise, I chose the cessation of alcohol. All this I did to try and arrest the progress of Liver deterioration.

The healing was 100% bonus! It’s actually great to see more and more folk posting here about their journeys and successes. For many of us our health is in our hands 🙌

Keep up the good work!

[AnxiousPete in reply to Dolly1001]

Thanks Dolly and well done you I'm 100 days alcohol free tomorrow - first time in 50 years I think. This is a wonderful forum that gives us hope

[Taffypaul]

Hi Sophia I was 35.7 kpa last year about June 2022. Had a repeat fibroscan last month and I was 34.1.kpa a little disappointed to be honest as no alcohol whatsoever , healthy eating lots of exercise. But...at least it's not gone up !!! Today at 16: 10 I have an appointment for an ultra sound test which is my 6 monthly check for anything dodgy lurking within my liver and other areas. So do fibroscan scores go down ? Who knows, but getting checked everything 6 months is vital . No doubt your paper work / connections will come through short and you'll feel better .

[Sophia1968]

oh bless you taffy, I know how disappointing it is when you do so much hard work, but as Katie said the fibro score means nothing is we have cirrohsis , so why do we get so hooked on the numbers, im the worlds worse for doing that, good luck with your scan this afternoon , let us know how you get on my lovely, well done for doing so well with healthy eating and exercise , just remember all that helps the liver no end regardless of the numbers xx

[mtk0925]

I usually get my results for my ultrasound the next day or with in 2-3 days not sure on fibroscans. My dr said those are more tricky to read

[Sophia1968 in reply to mtk0925]

That’s good that you are seen quickly, my fibro scan is high … my red blood cells and harmocrit are high, my cheeks are always flushed , I know something is wrong but I’m just having tests then left, no one follows up, I am not under a hep dr … I just feel at a loss and so alone x

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Sophia1968

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you would find it helpful to speak to others with shared experience, you can register to join a group here:

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust