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My annual Fibroscan - what I learned today

Hi All,

During my annual fibroscan today I noticed that the pings felt more uncomfortable than I remembered from last time, like something banging on my bottom right rib.  When it came to the result I was shocked to find that the number had increased by 2 in a year.  As I am in my early 60's I am at the age when my liver fibrosis, currently stage1, could just shoot up, so I am on alert for that.  An increase of 2 or more every year from now could mean not enough liver time for the new meds to arrive.

Anyway, the front of the machine is simple to read and showed a 70% accuracy for this test.  The operator said she would be happy to do it again and this time I did not feel any discomfort with the pings.  And lo and behold, the reading for this 2nd test was the same as last year!  The accuracy on the screen showed 100%.  

We discussed the discrepancy in the numbers.  The operator said it might have been that she had the probe at the wrong angle the first time and the wave was partially hitting off my bone, skewing the result to make my liver appear stiffer than it actually was.  This is an experienced operator and the same one as I had last year.  It was late afternoon and she said that she had been working the machine all day and her arm was tired, so she could easily have got the angle wrong the first time.  These probes are large heavy things.  

So - the things to note for anybody getting a fibroscan are -
a) if the pings are uncomfortable - they shouldn't be.
b) if the accuracy on the screen is not 100%.  
Although not always possible, an accuracy reading of 100% is obviously more reliable.  There is another parameter on the screen called the variance.  On my good reading it was 0.4% meaning that all the readings were within 0.4% of each other.  The higher this figure is, the bigger the difference in each individual ping reading and the less reliable your final score.

Well hope this adds a little bit to the knowledge and good luck with your fibroscans,
dointime
    
              
Best Answer
979080 tn?1323433639
Where do you do your FS ?
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Avatar universal
Hi OH,
"He told me even if I didn't clear the virus, tx would help my liver."

Wouldn't the problem with that be one then would not truly be und while treating? The little virons was still there just going undetected.
Helpful - 0
Avatar universal
A lot of good points made:
-
The ease of use of the Fibroscan makes it possible for the first time to closely monitor fibrosis over the course of tx.  From this we may learn much, eg. what happened to you Bali.  Reminds me of the time when PCR's were not taken until week 12 and all the breakthroughs were misdiagnosed as non-response because the test was not done frequently enough to clock the UND reading.
-
can-do-man - hi there, great to hear from you!  You bring up a great point about maintenance therapy not working.  At the time that was a surprising result but Bali's findings would explain it.  The drugs may have kept the virus down but the progression of fibrosis was not stopped because the drugs themselves continued doing the damage.  I have never had a satisfactory explanation for maintenance therapy not working until now, even from the research doctors who believed that it would work.  
-
Not everybody will have the same reaction to tx.  A rise in ALT during tx may indicate increasing fibrosis.  We can't just assume any more that tx will give the liver a rest.  As  frequent monitoring becomes more commonplace, facilitated by the fibroscan, we should get a more detailed picture of the percentage of people who's fibrosis actually increases.

dointime  
        
Helpful - 0
979080 tn?1323433639
It`s not what I want to believe but rather what my FS results showed.
You are absolutely right , having a non invasive and easily
repeatable way of  fibrosis  assessing enables you to monitor tx.
You know when my wk48 FS showed an increase of stiffness
the Dr. was admittingly was scrambing trying to find an explanation.
The first argument was must be inflammation. I pulled out my
dilligently collected bloodwork and no , my ALT was lower
wk48 than wk12. OK so it must be the meds somehow but
at wk12 I had already been taking the meds for 3 monts and
there was no FS change over baseline.
They could not "sell" me any explanation of why my liver
got stiffer so with me not letting loose you know what the
last "excuse" was ?  
You guessed it , FS is not that reliable and still a research tool ....LOL !

Here is what I "believe". The meds are the only way to rid ourselves of
the virus and in some people the sides including liver sides can vary, as.
simple as that. Hey , my ALT at baseline WITH virus and no drugs was
75 , my ALT at EOT WITHOUT virus but WITH drugs was 75 !
The minute I stopped the meds my ALT dropped to the 20s.
When I started tx the drugs knocked down the virus and my ALT went
down but starting at wk8 it slowly started climing all the way back up
even though I was UND be the most sensitive PCR around.
Between wk12 and wk 48 it flactuated in high normal range and after
that it went all the way up to 75 @ EOT wk60.

So when the virus is present proven by viral load and your ALT is
elevated we say it is causing liver injuries . But when the virus is
absent and we take meds over a year that elevate your ALT the same
way we are supposed to believe it is good for your liver ?
BS , the only thing good is that the virus is gone and you can stop
the meds.
Keep in mind not everyone experiences an increase in ALT the longer
tx goes on. Instead most people see a decrease in ALT and it stays
there for the entire time. Not everyone though  and  I am one of them.

Now my FS results back that up.
You can believe whatever you want I am just sharing my results
and I would do it all over again because SVR is sooooo worth it
This not an anti-tx post only an observation of my individual tx experience.

Cheers
b
Helpful - 0
Avatar universal
Hi Dointime, hope all is well with you. I'm really not one to believe these drugs do more harm to the liver and feel over the long term SVR will help a liver heal. But I also don't believe over the short term or without SVR it does any good. I feel maintenance therapy proved that as that was the hope, keep the viral load under control and it would help the patient but it didn't seem to work out that way.


"Before this study, many physicians had assumed that maintenance therapy was beneficial and had used this approach for their patients," said Adrian M. Di Bisceglie, MD, one of the study's researchers. "We had hoped that maintenance therapy would prevent the progression of liver disease due to hepatitis C among patients who had not responded to conventional therapy. Of course, [according to the study's results] things did not turn out that way."
The study, recently published in the New England Journal of Medicine, followed over one thousand hepatitis C patients who didn't respond to a first round of treatment for 3.5 years. The results did not support what many doctors believed. In fact, it showed that maintenance therapy with peginterferon did nothing to stop the progression of fibrosis, which is liver scarring that leads to cirrhosis and other complications.
http://hepatitis.about.com/b/2008/12/09/maintenance-therapy-for-hepatitis-c-not-helpful-says-study.htm
Helpful - 0
163305 tn?1333668571
I do recall some members who had biopsies after tx, though not immediately, and their livers did improve.
My own hepatologist is a very research orientated guy.
He told me even if I didn't clear the virus, tx would help my liver.
I trust his knowledge and experience.

It makes sense logically that if you are undetected during treatment that the liver would begin to regenerate simply because it is no longer under attack by hcv.

Unfortunately the nature of interferon is so diverse in how it affects people. So though many are helped, some are harmed.
Helpful - 0
Avatar universal
Thanks, that helps. I will make sure to take notes as well, if I don't get a printout.
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Avatar universal
bali05 - I've been giving your feedback some thought, ie. you think the ifn/riba might have done some harm to your liver as indicated by the fibroscan.  This is quite contrary to the old conventional wisdom that tx gives your liver a rest, even if you don't SVR.  Sounds like your liver got a beating, not a rest at all.  

Now that I think about it I can't recall any scientific evidence to back up this belief that the liver gets a rest while on tx.  And anecdotally I can't recall anybody having a biopsy before and after tx which demonstrated liver improvement.  So perhaps you are exploding this myth for the first time.  It is quite feasible that this has never been discovered because people don't generally finish tx and jump right up on to the biopsy table the next day.  The fibroscan is making that possible for the first time.  I guess we watch this space...        

Idyllic - your readings are about the same as mine for a stage 1.  I am BMI 25, not so low.  I  didn't get told to have an empty stomach for the test.  I didn't get a $1 dollar bill either:(

dointime  
                
Helpful - 0
766573 tn?1365166466
I have had two Fibroscans & two liver biopsies and both procedures yielded the same results. My GI's participates in lots of studies & trials. He performed both of my biopsies and the same tech from his office performed both Fibroscans.

I never really thought about the implications of the results or how well they correlate with a liver biopsy. To be honest the only reason I even agreed about the Fibroscan was to participate in anonymous study.

For the Fibroscan I only had to have HCV, labs (mainly ALT, AST & PT), low BMI and an empty stomach. The first time I had to sign a ton of forms and when all was said and done I received a crumpled up $1 dollar bill :)

As Bali mentioned you do not receive a report (at least I didn't) but I wrote down the results at the time. Still, I would have to check my notes if there is an obvious error or incongruency.


Stage 1 (Grade 2) (2008 & 2011)
FibroScan kPa 3.5 (F0)/BMI 19 (2008)
FibroScan kPa 3.5 (F0)/BMI 19 (2011)
Helpful - 0
979080 tn?1323433639
"Yikes Bali - I don't want to hear it either!  Maybe it was just the blunt instrument effect and the angle of the operator"

Nope , you can trust me in that I have had enough FS experience to make sure
the operator gets a good result. I even went as far as repeating FS within
only one week and recheck with different operator same machine.
I tell all of them my previous results to compare including success rate
ect... even scan image print out from a FS I did in Germany , bloodwork
and so on...
Helpful - 0
Avatar universal
My suggestions are:

Be nice and diplomatic with the operator so that you get them on your side.  Ask politely if you can see the screen after the test, and get the operator to point out the accuracy reading.  If it is 100% then you are good to go with your test result.

If the accuracy is not 100% then it's up to the operator and your powers of persuasion to do the test over until you get the best accuracy that you can get.  So it is important that you speak up at this point.  If the operator is in a rush then he/she might not be inclined to do the test over, but it's your big bucks and you have a lot riding on the result, so this is not the time to be shy.  The test only takes a few minutes so it shouldn't be impossible to repeat it.  

Good luck,
dointime  
  

      

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Avatar universal
I have a fibroscan scheduled for July in NYC. I appreciate what I have learned from your posts on this.
I don't have insurance so I will be paying what is for me, very big bucks and I want to get the most out of it. Any other suggestions are welcome.
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Avatar universal
Maybe it's not the insurance people that need to be sent off for a biopsy, maybe it's the FDA people.  Sorry, I'm not up on how it all works in the US.
dointime
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Avatar universal
Bali05 -
"When you present a scenario that INF/Rib
might potentially do harm to your liver while clearing the virus they don`t want to hear it !."

Yikes Bali - I don't want to hear it either!  Maybe it was just the blunt instrument effect and the angle of the operator.  But what do I know, maybe it was indeed the meds, heaven help us.

jerialice -
"i take it you had a bad biopsy experience?"
I don't think my biopsy was that bad, relatively speaking.  I had an experienced operator and it was ultrasound guided.  I did scream my head off when I got the anaesthetic shot into the liver sac but after that it was fairly plain sailing.  It was for a trial so I got to wimp out afterwards and spend the night in hospital.  I was like a zombie for a while, low blood pressure.  Don't think I could have got myself home the same day.

dointime  
    

Helpful - 0
979080 tn?1323433639
When I did my Fibroscans during tx I was told that the increase in kPa readings
was because of inflammation or because of the tx meds themselves "working"
in the liver. I did not buy it. Sure enough 6 months post my FS was still a stage
higher than @ baseline before tx. When you present a scenario that INF/Rib
might potentially do harm to your liver while clearing the virus they don`t want to hear it !.
The only other explanation I have is that I like to do abdominal exercises to
keep abdominal fat deposits to a minimum. Maybe the FS readings go up
a notch with a firmer upper body ? I am just making this up....
We do know that obesity makes a difference , they have a special FS probe
for it so who knows.
Inflammation did not count for me because I had lower ALTs while having
higher FS results.

Helpful - 0
Avatar universal
It may be hard to get this test (depending on where in the world you are from.) I don't believe they are FDA approved ,and there are still not machines everywhere.
. I am in Canada and they are approved for use here,although most times still as an adjunct to a biopsy.

The measurement is in ( kPa )  kilo pascal/pressure It measures liver "stiffness"  and the higher the  #  more stiffness.

If you were to compare it to the "metavir scoring scale used in biopsy

F0 -F1  would be approx.   3  - 7
>F2                                      7- ( 9 to 9.4 )  
>F3                                      9.4  to approx  12
and F4 or cirrhosis               >12    right up to in the 30's

These are approximations and like all fibrosis markers they are prone to a some degree of error,especially in the middle stages.

Will
Helpful - 0
131114 tn?1380083190
i take it you had a bad biopsy experience?
they wanted me to get one but as i mentioned, got he-magiomas and don't want them poking around in there!! :)
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131114 tn?1380083190
hello frijole!
as far as i know i have little to no liver damage, very low enzymes and have never been told there was a problem with the liver. i do feel tender up under the ribs/ sternum at times and i was told that's inflammation- which is why i try to keep anti- inflammatory diet on board. i do have a bit of packing around  my middle, but i am well within normal weight for my ht. the hemangioma is congenital and it's why i don't want needles in there. i will try to ask for both the Fibrosure and fibroscan tests when i see the doc in august.
Helpful - 0
131114 tn?1380083190
will what do the numbers mean? i am going to ask for that test!
jerialice
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1113735 tn?1273174430
Mine fibroscan results were 18 KPa, and Doc. told me that it could be related to begining of chirrosis!
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Avatar universal
Thanks for posting this further info.  So there's the possibility that the medscape article is correct.  Higher ALT values, ie. higher inflammation, results in a higher Fibroscan reading for the same stage of fibrosis.

Well, still not enough results to go on, but at least we made a start on interpreting the Fibroscan readings.  

I've been thinking it's a shame that so many insurance companies in the US demand a biopsy rather than a fibroscan.  Maybe they should send  somebody from the office to do a bit of field research and have a biopsy themselves.  Then they might change their minds on what is reasonable to ask for.  Oh but wait a minute!  Maybe more people would go for it then and that would cost them more.  Duh.  

dointime            
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Avatar universal
The FS was done in 2010 (at trial) and was 6.7 Kpa as I mentioned.
Will
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Avatar universal
When looking over the thread again I see missed your question:

"Do you have your average ALT values over the years? "
They have usually  averaged approx. 2x normal   60-80   for quite some time .

Also .the last biospsy result I posted above was done just recently  Mar.of this year.. I mis-typed. I did not have one in 2010

Hope that helps.

Be well..
Will  

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Avatar universal
Actulally the St. 1 has helped relieve some of the "suspense " :)
Unblinding in July. .I will let you know ...
Stay well..
Will
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Avatar universal
Hi Will, many thanks for chipping in here with your results.

I've only ever had 1 biopsy in 2007 which came out at stage 1,  My Fibroscan at the same time was 4.1Kpa.  

So taking both our results, stage 1 can come out on the Fibroscan as anything from my lowest this year at 3.3Kpa to your highest at 6.7Kpa.  

The medscape article would seem to be correct then.  The machine is suboptimal for the lower stages.  My ALT has always been below 40.  Do you have your average ALT values over the years?  

I must say I am kinda losing faith in the Fibroscan as an early warning that my fibrosis is progressing.  I wouldn't really trust it after what I have learned from this until the reading went above 8.  However for me it's academic really because there's no tx out there right now that has a chance of working for me.  Even if I get a 14 on the Fibroscan I'm out of options until we get an effective ifn free tx.

By the way, I'm still looking forward to finding out what drugs you got on your trial.  Never mind the hepc, the suspense must be killing you.

dointime

      

      
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