2 years for Next Fibroscan is this Normal - British Liver Trust

British Liver Trust

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2 years for Next Fibroscan is this Normal

popupstands profile image
popupstands

My wife had a Fibroscan in August 2019 and the result was not to good a reading of 47.5 Kpa today the 13th jan 2020 she had another fibroscan and a much better result of 23.3 Kpa still poor but in under 6 months a great percentage she as changed her diet (no diary) and plant based does not drink, a year ago she could not walk and 4.5 litres of fluid drained I did not hold much hope, her blood results have been normal for the last 6 months but the consultant today made us feel deflated and refused to do another fibroscan in 6 months or at the very least I would have expected within the year, he said he would not do the next fibroscan for 2 years due to money within NHS we feel this to be unacceptable and would like to know what policys are in place regarding time scale of fibroscan, my wife as done so well and this bit of improvement gave us hope today only to be told that she would not get another scan for 2 years we felt on top of the world only to be let down within hours today. my wife is 57 and is now walks 10000 steps +++ per day.

what are your thoughts regarding this I know we can get a private scan next year for around £450 but money is tight currently.

22 Replies
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Hi

I hadve had a fibroscan but can't rent when, it just seems a while ago but my numbers were good, I had a liver biopsy in November 2016 and diagnosed with Nash with fibrosis, my next fibroscan is in February. I'm not sure what the normal timescale is for them. If you aren't happy you could complain to pals . Your GP might be able to push things for your wife. We ended up going private in may 2016(totally against the grain but I needed a diagnosis) where we got a diagnosis of nafld, the consultant then agreed to take me on the NHS as he said we had spent enough. Hope you get the support you need from your GP, I know I've had to do a lot of pushing and it's exhausting, my hubby and sons have had to do this for me many times. Good luck. Love and hugs to you and your wife Lynne xxxx

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There's a post Monitoring cirrhosis 6 days ago by Jacobsmum where AyrshireK added this link.

NICE guidelines/recommendations for monitoring cirrhosis -

nice.org.uk/guidance/NG50/c...

I can only say that Ultrasound, Bloods & Consultations are 6 monthly ongoing. Endoscopy 6 - 12 monthly all depends on the individuals condition. Fibroscan is not normally repeated. I'm clear, no varicies Endo re-scheduled 24 months. I think they use bloods markers rather than repeat Fibroscans which appears to give them a guideline, rather than an accurate assessment method if you can understand my waffle.

That lower score, close to my own back in Apr19 labelled me as compensated. Therefore assuming all things good will naturally continue to improve. 👍

Hubby has never had a fibroscan in the 8 years he's had liver disease - there is no mention of fibroscan on the NICE guidelines for monitoring cirrhosis. If they have given a formal diagnosis of cirrhosis then she should be getting an ultrasound scan every 6 months.

Katie

Spot on Katie, I am back tomorrow for scan , and then the dreaded camera thing week on Sat

Hi,

My initial results on a fibroscan, were much the same as your wifes, and that, and blood test results, were the main indicators of F4 cirrhosis. that was 3 1/2 years ago, and I have never been given another fibroscan, because my Dr says there's no point as we know you have cirrhosis. He doesn't seem to know that fibroscan scores can change, as in your wife's case. It's not a costly test.....they already have the equipment, and the test takes the same time as a consultation. At my last appointment with him, I saw the machine standing there, and asked if that was there for me, and he said no, for the above reasons.

David

AyrshireK profile image
AyrshireK in reply to davianne

That's what my hubbies consultant at Edinburgh has said "No point giving you a fibroscan as we already know you have cirrhosis". Cirrhosis is never fully reversible so although fibroscan numbers can reduce it is somewhat unlikely full on cirrhosis is ever going to return a score indicative of a lot less fibrosis or scarring.

Katue

davianne profile image
davianne in reply to AyrshireK

Yes, I know that fibroscan scores can improve, if only marginally, but the positive news a repeat fibroscan would give, would give encouragement to sufferers of cirrhosis, which, we know is a permanent disease.

God knows, we need it.

David

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Hidden in reply to davianne

Sometimes just don't want to know? ie I sent my poo in the post, Bowel Screening just before xmas so I was sitting bricks on a result.

Back to cirrhosis my continued monitoring as stated continues. My US appointment has arrived in the post for the 6 monthly right on que since the last in Aug19. Unfortunately still waiting on overdue Consultation & Bloods? His Secretary has not responded to my message via voicemail.👎

davianne profile image
davianne in reply to Hidden

Hi Ofecky.

I always want to know my condition.....good or bad, but especially good😊.

I send off the 3 samples of the brown stuff, annually, always been OK....so far🤞. Have you had a colonoscopy?.....if not your missing a wonderful experience.....NOT!!!!

Whilst waiting for my CT scan last week, I saw a notice on the wall about Moviprep.......and read it just to remind myself of the preparation of the "Gift that keeps on Giving".....I burst into laughter, and 2 women sitting a few chairs down gave me a worried look, so I had to explain why I was laughing, then they laughed too🤣🤣🤣

A second fibroscan, if it showed a better result, would give me confidence that I am at least slowing, or improving the state of my liver, especially as I'm stuck with this one 'till I arrive at the Pearly Gates👼👼👼.

How are you doing with all the wind ? sorry I mean weather not gas?🤣

David

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Hidden in reply to davianne

No camera downunder yet? I'll give that a miss 😵. Miss Trainee Dr was a spectator at Juniors main event. I've just met the screening age criteria, next one in 2yrs so you must be poopular. Gift, very moving story. I've escaped the wind this year lost a garden gate last year but I see the neighbours fence hanging by a thread. Re-cycle bins had to be brought back in garbage & bins were all over the show. We did lose a section of the sea wall on the shore and that tree fella was at his work again. 🙄

confused71 profile image
confused71 in reply to davianne

I am with you My second fibroscan showed quite a good improvement and i was over the moon I would rather know whats happening with my liver .Hepatologist didnt want to do another one in case I had progressed and she didnt think i could deal with it . I said if it is worse I know to try harder ---as it was there was no progression after a year

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Hidden in reply to AyrshireK

Hi this where the confusion lays. I had a score of 12. 7 first time. Then 7 month later another at 11. 5. So does that no indicate some repair?

AyrshireK profile image
AyrshireK in reply to Hidden

Some repair yes or less ongoing inflammation. A once cirrhotic liver is never going to fully repair because in effect the cirrhotic areas are like dead tissue, fibrosis can repair and even so can some cirrhosis. My hubby's consultant won't fibroscan because as we know he has full on cirrhosis, it's never going to get better from that state, yes we might see little bits of improvement but it's not going to suddenly repair itself. In his case the cause is an auto immune illness which did it's damage before detection.

Katie

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Hidden in reply to AyrshireK

Let's hope this new treatment comes into affect. So far the results are blinding according to a top doctor running the trails let's all pray!!!

confused71 profile image
confused71 in reply to Hidden

MY first was 9.5 and my second 9 months later was 7.1 after i lost 22 pounds in weight and changed my lifestyle --- I think I had reduced inflammation

Trust9 profile image
Trust9Administrator

Good morning popupstands,

It sounds like your wife is doing really well with her lifestyle changes !

I have included a link to the NICE guidelines for the management of cirrhosis as our forum members have mentioned.

nice.org.uk/guidance/ng50/c...

As the forum members have said, FibroScan is not indicated as a monitoring tool in the management of cirrhosis.

It is important to ensure that she does have the appropriate follow up in the form of 6 monthly Ultrasound scans and blood test monitoring .

It may be reasonable for your wife to explain how motivating it has been to see the improvement in her FibroScan in order to maintain her positive lifestyle changes, and they may carry out FibroScan for this reason, or indeed carry out fibrosis markers via blood tests.

Overall, huge congratulations to your wife for making these changes, and I hope she can keep up the good work

Best wishes,

Trust9

Hi, have you had an ELF test? (Enhanced liver fibrosis test). I have had a few done and they were incredibly accurate when compared with my fibroscan result. I also had a new blood test which they were trialling but they didn’t give it a name, this was done a year ago and I am waiting for another appt with hepatologist. I lost weight and changed my lifestyle which is why consultant wanted to wait before seeing me.

popupstands profile image
popupstands in reply to Owlie

Where did you get ELF test we are with kings College Hospital and did you request this or was it offered

Many thanks

Owlie profile image
Owlie in reply to popupstands

It’s a blood test and my GP offered it.

Trust1 profile image
Trust1Administrator in reply to popupstands

popupstands You could also discuss a Fib-4 score blood test as that also assesses fibrosis.

Best wishes

Trust1

Owlie profile image
Owlie in reply to Trust1

That might be the other one I had, it was new 👍

I wouldn't get too hung up on Fibroscan results. They are often inaccurate due to inflammation, presence of hemangionas on the liver etc. I had one last May when I was first diagnosed and actually wished I hadn't as the result was so depressing. I am sure a repeat now would be much better but I am happy that blood tests, regular ultrasounds and endoscopies AND how I actually feel are more than enough to convince me that I am improving albeit will never be cured.

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