Have you had a Fibroscan?

[Else]

I would really appreciate any feedback.  My initial intake appointment with my hepatologist was May 11th of this year.  I had concerns, of course.  Mostly about what my insurance coverage would be and how bad my liver damage would be.

What never occurred to me was that my liver would be too healthy per my Fibroscan test.  20 years ago I had a liver biopsy (results now lost by UW Med) but I do remember the diagnosis.  "Chronic persistent hepatitis with necrotic tissue."

When I had the Fibroscan done at the Liver Center, the entire procedure took less than one minute.  That is not an exaggeration.  Even the nurse commented on it saying that it usually took up to 10 minutes.  But she was smiling and didn't seemed concerned.  I was stunned when the doctor showed me the kPa values.  Virtually no progression of damage in 20 years? (Yes, I realize a direct comparison of verbal biopsy results and the Fibroscan reading is impossible.)

But since the results of that scan are now barring me from treatment, I am really questioning the accuracy of my procedure.  How long did your Fibroscan procedure take?

[KimInTheForest]

Fibroscan readings can be unreliable for anything less than cirrhosis (Stage 4). I had one fibroscan in Nov 2014 with a reading of 10.4 (F3), and then a second in April 2015 at different clinic using a different machine and different operator, and that one came back with a reading of 8.5 (F2). This is not unusual.

So I would say, if your fibroscan has come back with a score that disqualifies you for insurance, and if you think that score might not be accurate, you could either try to get a 2nd fibroscan somewhere else, or you could get a fibrosure (blood test) which will not cost much. Or of course, you could always go for another biopsy (although I wouldn't want to).

I do think it is possible for Hep C to not progress in terms of fibrosis over a 20 year period - especially for Geno 1. I also think there are ways to contest insurance rules that say no one below F3 can get the new drugs. I think there is one or more lawsuit over that right now.

best of luck, Else!
kim

[Else]

Thank you, Kim.  Do you recall how long the tests took?  In other words, does less than one minute seem odd to you?

Also, since you had 2 done within such a short period of time, was your second one done as part of a "new patient intake"?

I would very much like the test repeated but am already in the appeal of denial process with my current liver doctor.

[KimInTheForest]

1 minute does seem quite short to me. My 1st one (with the F3 reading) took nearly 30 minutes! because the first technician in the room tried and tried but could not get any useful reading. (Apparently my ribs are close together.) So she called in a more experienced nurse/technician who got me into a really contorted position so that my ribs would spread enough for the rod to tap on liver and not bone. And that contorted position was so ridiculously uncomfortable that I think it pressurized my liver, resulting in a higher stiffness reading - like if you squeeze a balloon at one end, the other end will have higher pressure.

My 2nd fibroscan done 5 months later in a different city, different clinic, different machine, different nurse was for patient intake and pre-screening for the clinical trial I am now on. It took her maybe 5-10 minutes, but she did it quite effortlessly and did not put me into any weird position. She used a narrow diameter rod (for kids, I think) to fit between my ribs without trouble, and she pretty much right away got 10 consecutive thumps that all were in the same ballpark, resulting in the 8.5 (F2) reading.

kim

[Jorah]

My test was about 8-12 minutes, my understanding is that they had to take several readings....

[mae1234]

forgive me to tagging on to this post but i cannot figure out how to start my own!

I had a fibroscan yesterday.  without being able to research the test first, I didn't know what questions to ask.  I did see the screen and saw a series of about 10 numbers ranging from 1.36 to 1.41.  Do any of you know what that means?!  I am so anxious to find out how I am doing!

This was my first visit to the doctor in 4 years.  I've been putting it off, in denial.  The new drugs are what really motivated me to go back.  And the fact that I have 2 little ones I am trying to keep myself well for to see grow up.

The doctors have prescribed me harvoni.  The pharmacy will be working out coverage with my insurance.  The doctors at U of M seemed very optimistic in regards to it being covered but after reading stories on here, I am worried.  Why don't the insurance companies want us to get better regardless of F score??  Won't it cost them more when our disease progresses?  Ugh.  Big money greed. 

[Jorah]

forgive me to tagging on to this post but i cannot figure out how to start my own!

I had a fibroscan yesterday.  without being able to research the test first, I didn't know what questions to ask.  I did see the screen and saw a series of about 10 numbers ranging from 1.36 to 1.41.  Do any of you know what that means?!  I am so anxious to find out how I am doing!

This was my first visit to the doctor in 4 years.  I've been putting it off, in denial.  The new drugs are what really motivated me to go back.  And the fact that I have 2 little ones I am trying to keep myself well for to see grow up.

I know how you feel , I'm also going in because of the new drugs. If you're genotype 1 and they're putting you on harvoni, I would say you have very good chances of success.
The Fibroscan, I'm not sure but my understanding is that the numbers go from 1.5 to 75 and if you're getting only 1.4 you're doing very well.  But maybe someone else knows better.
Good luck !

[Lynn K]

this link shows a chart for fibroscan

http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html

mine was 27 and took about 10 minutes

[jakas]

Mine took 10 mis. and it was 14.8 kpa

[Else]

Thank you for responding!  Wishing you much luck on your travels to India.