TOPIC:

Hi everyone.
Today I had my 3rd Fibroscan. Each Fibroscan has been at different medical institutions. The first one was at St. Vincents Melbourne in 2010 where my score was 4.1 KPa. The second in 2011 was at the Austin and my scan result was 9.2 KPa. Four years later. Today I had a Fibroscan in regional Victoria and it was scored at 7.1 KPa. Yesterday I was expecting a really bad score and contemplating 24 wks treatment
-/+ Riba and today I don't understand the difference and don't know whether to trust the result.

I think that question has to be answered by the doc. Fasting before a fibroscan gives a better reading, so I am told. My advice is, if you can afford it, do it now. With little scarring you will only need 12 week treatment. With so little scarring you might not be eligible when the medicines eventually get PBS listing. kindly

My understanding of the fibroscan is that it is fairly accurate at the low end and the high end of the scale but not so much in the middle.
dt

My experience of Fibroscan is rather hit and miss.

In 2014 I had one, the nurse said it's hard to get a reading with very large people and very small people.
However, she was pleased that she had no trouble with mine that day and I was very underweight. Apparently the signal can 'bounce of the rib-cage and other bones'. She said I was 8.7.

My next fibroscan was early this year. The operator said he 'knew nothing about livers' and couldn't access my notes as he didn't work in that hospital. He had terrible trouble getting a reading on me. He admitted he was in a hurry taking a machine to another hospital miles away in a taxi, but he kept trying.

In the end, he took a reading from around the back with my arm down. He decided the average from this angle was 6.1 - I didn't trust it whatsoever. The original readings around the front were fluctuating from 4 (more center) to 9 (to the right). 9 would make sense to me over a year after original reading of 8.7 but hey, what do I know?

Now I am labelled 'Mild' and my new consultant doesn't seem remotely interested in my case, whereas my previous consultant told me after taking bloods and previous fibroscan into account, that I 'needed to treat this year' (2014).

So that's it, I am now apparently mild and 'moderate' has gone out of the window., so no help from NHS England for me !

Huhmn...what a story!!! Crazy...

Had my first fibroscan six weeks ago at london clinic,carried out by a very competent specialist hepatology nurse.score 6.5.One week later had my first nhs appointment with again a very competent nurse.score 5.Both nurses carried out the scan in exactly the same way.The only difference was for the first scan i had fasted and the second one i had had food two hrs earlier.The scans were done at the same time of day. I think to get the most accurate score you would need to have a number of scans,lets just say six or eight,a few days apart and take the median average as the score.Perhaps a clinic somewhere could trial this.

hi everyone,
to add to fibroscan's stories my own.
I had 2 fibroscans; first 2010 , score 8.1pKA & second in 2015, score 8.7pKA, no fatty liver.
Not sure what to make of it, as it appears not much change in fibrosis in last 5 years, is that even possible???

Especially having geno 3, which apparently has the fastest rate of fibrosis development as compared to other genotypes , according to experts, so I was expecting a score well above the 8.7 range plus Fatty Liver, but it's not the case at all.
The USG, showed no fat on the liver, but I do have a bit of a spread across my abdomen, so must be all surface fat & not inside the liver…or the tests are wrong,
My doc told me: "mild fibrosis therefore no treatment for at least a year as not qualifying for it presently".

Some have been told, eating before a fibroscan would make your score higher as it thinks the food inside you is part of your liver. There was an amusing debate on another forum where we all considered eating a huge fry-up before visiting our NHS hospitals ha ha ! Strange that there seems to be a pattern of NHS fibroscans in the last year coming out lower than any others taken elsewhere. I know of someone who had a 9 fibroscan and as they were worried a year or two later so they had a biopsy and suffered quite a bit after...They just got a letter back after quite a long wait saying 'Mild' This was the same time as I got my 'Mild' and when the new drugs were starting NICE approval. I believe 'moderate' has gone in the NHS now, it's just 'mild' or 'serious'. ie Treat v no treatment.

Ahh - Another 'Mild' so no treatment :-/

My old consultant who was a leading Liver Prof, took more into account, looking at blood tests, age, how long you've had the virus, symptoms etc - Now it's just fibroscan. To treat or not to treat. Seems like a rather limited and not so secure method of prognosis to me.

Saw an interesting post on Twitter today : www.dailymail.co.uk/health/article-33109...ading-physician.html
Sorry it's the Daily Mail !

I've lived my life with hep...and then I find that in my lifetime - the parallel universes collided!!

I find out that a cure has been discovered and I now have an opportunity to own the disease and self treat. The doctor performing the fibroscan asked me how much the meds from China cost and what was the name of the company in China.

He then followed with ' your result is ok, if I were you I would wait!"

pat1 wrote: I've lived my life with hep...and then I find that in my lifetime - the parallel universes collided!!

I find out that a cure has been discovered and I now have an opportunity to own the disease and self treat. The doctor performing the fibroscan asked me how much the meds from China cost and what was the name of the company in China.

He then followed with ' your result is ok, if I were you I would wait!"

That sucks , what they don't understand is that it isn't just a score on a piece of paper FFS! The bloody virus affects our whole being,from the brain to our feet. It affects our other vital organs, it affects us emotionally. Get the generics if you can.

cheers

pat1 wrote: He then followed with ' your result is ok, if I were you I would wait!"

I think if he had HCV and had it for years and then he could treat and treat it right away, then he would. That's just a no brainer, A lot of people have been waiting years for an effective treatment ...sure lets wait some more! ..no thank you

You said it Paul.


Easy for the medical profession to say "just wait" when the patient is merely a set of numbers on a printout...not so easy to tolerate that response when you are living everyday with symptoms and the uncertainty of how rapidly the disease will progress in future.

I second that. You said it Paul.

I have had it up to here with doctors telling me I have no worries because my liver panels are all good. Some people seem to get symptoms directly related to liver function but all my symptoms are central nervous system stuff. Chronic fatigue, random stabbing pains, facial neuralgia, brain fog, general zombification. These symptoms reduce quality of life to minimal, yet doctors seem to still be oblivious !!!
It makes me crazy.

dt

My new consultant announced ' We are not concerned with symptoms' last week.
He then said 'There is not data or trial evidence to suggest we take notice of symptoms'.
At least he was honest!

With no offer of blood tests, fibroscan , no observations of general health, a fight for an Ultrasound (late December appt. after a week of phoning) - How are Drs supposed to tell how the patient is or if there are any health risk elements?
Or is that a silly question? - I was certainly made to feel silly in my latest 'consultation' - It was clear I was not there to discuss my condition, but to hear a lecture on Commissioning bodies and how I cannot expect anything in the way of diagnostics, advise on symptoms or treatment for some time'.