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Fibroscan ad libidum; or, Who controls the controls?
Dear friends and long-suffering Medhelpers, in particluar all those who have accompanied me in the on-going drama of the "tests of fibrosis progression" to which I have been subjected, which in truth have been no sort of tests but rather a nightmarish maze of contradictory and confounding scores of pseudo-scientific claptrap, none of which, when taken together, appears to mean anything, to you this thread is dedicated.
You will recall - perhaps somewhat reluctantly given the already incomprehensible nature of my two years of conflicting biopsy reports, blood analyses, ultrasounds, ecodopplers, FibroTC, and other soundings and probings - that in my last submission on this subject I related how I had been given a Fibroscan at my hospital which had a result of F3/F4, a two-stage jump from the worst of the previous scores (F1/F2, given in May of 2008 to what was left of the biopsy material by a pathologist outside my hospital), placing me in the category of pre-cirrhotics, sending me into a panic which I was obliged to calm by doubling my daily dose of Valium, and exacerbating my fury against my doctors, hepatologists everywhere, and the entire evil profession of medicine. My question to the forum "F1 to F3/F4: is it possible?" was a plea for sane opinion from my friends here in the forum, and at the same time a sarcastic repudiation of my situation as victim of techniques and machines, and their operators, that seemed to be trying to kill me.
With what remained of my reason (precious little, I must admit, after two years of torture with ambiguous and erroneous information) and the immeasurable assistance of you Medhelpers, I decided that a result - F3/F4 - so strange and unexpected could, indeed must be in error. I therefore demanded a re-test on the same machine by a different operator, and was granted this demand after some thinly-veiled threats to titled pill-pushers of their exposure as incompetent quacks. In short, one week after the original Fibroscan I was given another. This second test repeated the same score as the first, F3/F4, apparently confirming the unthinkable: that I had progressed from F1 to F3/F4 in less than two years!
Persisting in my belief, however unsubstantiated, that there is an objective reality beyond the ravings of imbeciles and lunatics, I discovered that another Fibroscan machine exists in Buenos Aires, in a private clinic and in the hands of a long-time professional liver ultrasound specialist. In for a dime in for a dollar, I made an appointment for last Friday for a third Fibroscan.
This one was conducted in a very different manner from the first two. An ultrasound (ecographic) machine was used to orient the Fibroscan probe in relation to the liver, a procedure not used at my hospital. Furthermore the probe was not placed between the ribs, but in a more open space below the ribs. The operator also explained to me how the data gathering actually functions: that the probe is held more or less stationary while the patient is asked to breathe deeply and hold the breath at different points in the expansion of the abdominal cavity, allowing different parts of the liver to come into the field of view of the probe. In other words, it is the liver that moves not the probe, permitting the sound pulses to impinge on different parts of the organ. Armed with this knowledge, I was able to assist the operator in obtaining probings of a large area of my liver.
The results? F1/F2! And this was confirmed by the ultrasound done simultaneously, which, I was told by this proficient operator, showed that my liver is not yet appreciably enlarged, that the vena porta is only slightly wider than normal (the expansion of this vein - caused by blocked blood flow in the liver, consequence of the fibrosis - eventually results in the creation of new blood vesicles, the esophageal varices, which, I am told, can hemorrage and cause death even before the liver fails completely), and that my spleen, an organ that also eventually enlarges to accommodate a part of the excessive blood pressure in the vena porta, was still of normal size.
It seems, then, if this new Fibroscan score of F1/F2 can be believed (and it certainly does coincide more closely with previous tests, other than the first, repeated, Fibroscan), that my hospital has made yet one more false test and false diagnosis, that I am not after all cirrhotic, that my liver fibrosis is not progressing at an unusually fast rate, that I do not have to "go into standard antiviral therapy immediately" as my hep MD has lately been threatening, and that it is difficult, if not impossible, to believe anything that these tests or the individuals (members, it may be granted, of the genus homo erectus, if not of the species homo sapiens) who administer them say.
I should also report that, after receiving the F3/F4 Fibroscan result from my hospital a month ago, I contacted the authors of two recent studies of fibrosis progression, and was told by them that no case of progression from F1, or even from F2, to F3/F4 in less than four years has been recorded in an otherwise healthy non-alcoholic person with chronic HCV infection, no matter what his or her age, platelet count, or transaminase levels.
I am currently attempting to change hospitals. Having hepatitis is one thing; being driven mad by incompetent medicos and misused diagnostic procedures is quite another. I have had enough.
[Look for further installments of the exciting saga "A New York Hepatitic In The Third World" in upcoming issues of this forum.]
Mike
You will recall - perhaps somewhat reluctantly given the already incomprehensible nature of my two years of conflicting biopsy reports, blood analyses, ultrasounds, ecodopplers, FibroTC, and other soundings and probings - that in my last submission on this subject I related how I had been given a Fibroscan at my hospital which had a result of F3/F4, a two-stage jump from the worst of the previous scores (F1/F2, given in May of 2008 to what was left of the biopsy material by a pathologist outside my hospital), placing me in the category of pre-cirrhotics, sending me into a panic which I was obliged to calm by doubling my daily dose of Valium, and exacerbating my fury against my doctors, hepatologists everywhere, and the entire evil profession of medicine. My question to the forum "F1 to F3/F4: is it possible?" was a plea for sane opinion from my friends here in the forum, and at the same time a sarcastic repudiation of my situation as victim of techniques and machines, and their operators, that seemed to be trying to kill me.
With what remained of my reason (precious little, I must admit, after two years of torture with ambiguous and erroneous information) and the immeasurable assistance of you Medhelpers, I decided that a result - F3/F4 - so strange and unexpected could, indeed must be in error. I therefore demanded a re-test on the same machine by a different operator, and was granted this demand after some thinly-veiled threats to titled pill-pushers of their exposure as incompetent quacks. In short, one week after the original Fibroscan I was given another. This second test repeated the same score as the first, F3/F4, apparently confirming the unthinkable: that I had progressed from F1 to F3/F4 in less than two years!
Persisting in my belief, however unsubstantiated, that there is an objective reality beyond the ravings of imbeciles and lunatics, I discovered that another Fibroscan machine exists in Buenos Aires, in a private clinic and in the hands of a long-time professional liver ultrasound specialist. In for a dime in for a dollar, I made an appointment for last Friday for a third Fibroscan.
This one was conducted in a very different manner from the first two. An ultrasound (ecographic) machine was used to orient the Fibroscan probe in relation to the liver, a procedure not used at my hospital. Furthermore the probe was not placed between the ribs, but in a more open space below the ribs. The operator also explained to me how the data gathering actually functions: that the probe is held more or less stationary while the patient is asked to breathe deeply and hold the breath at different points in the expansion of the abdominal cavity, allowing different parts of the liver to come into the field of view of the probe. In other words, it is the liver that moves not the probe, permitting the sound pulses to impinge on different parts of the organ. Armed with this knowledge, I was able to assist the operator in obtaining probings of a large area of my liver.
The results? F1/F2! And this was confirmed by the ultrasound done simultaneously, which, I was told by this proficient operator, showed that my liver is not yet appreciably enlarged, that the vena porta is only slightly wider than normal (the expansion of this vein - caused by blocked blood flow in the liver, consequence of the fibrosis - eventually results in the creation of new blood vesicles, the esophageal varices, which, I am told, can hemorrage and cause death even before the liver fails completely), and that my spleen, an organ that also eventually enlarges to accommodate a part of the excessive blood pressure in the vena porta, was still of normal size.
It seems, then, if this new Fibroscan score of F1/F2 can be believed (and it certainly does coincide more closely with previous tests, other than the first, repeated, Fibroscan), that my hospital has made yet one more false test and false diagnosis, that I am not after all cirrhotic, that my liver fibrosis is not progressing at an unusually fast rate, that I do not have to "go into standard antiviral therapy immediately" as my hep MD has lately been threatening, and that it is difficult, if not impossible, to believe anything that these tests or the individuals (members, it may be granted, of the genus homo erectus, if not of the species homo sapiens) who administer them say.
I should also report that, after receiving the F3/F4 Fibroscan result from my hospital a month ago, I contacted the authors of two recent studies of fibrosis progression, and was told by them that no case of progression from F1, or even from F2, to F3/F4 in less than four years has been recorded in an otherwise healthy non-alcoholic person with chronic HCV infection, no matter what his or her age, platelet count, or transaminase levels.
I am currently attempting to change hospitals. Having hepatitis is one thing; being driven mad by incompetent medicos and misused diagnostic procedures is quite another. I have had enough.
[Look for further installments of the exciting saga "A New York Hepatitic In The Third World" in upcoming issues of this forum.]
Mike
Mali is beautiful! Wonderful people, amazing music, lots of diversity, different cultures. It really is amazing! The Dogon country, the Touaregs of Timbuktu... As my hubby is from Mali, we go every year!
Thank you Mike,
I wish you the very best moving forward and finding a trial....
The newer PI's can't get here fast enough.
We need them yesterday.
Hugs
Elaine
I wish you the very best moving forward and finding a trial....
The newer PI's can't get here fast enough.
We need them yesterday.
Hugs
Elaine
Great news, Mike! I'm really glad to hear it. Best of luck to you finding a trial!
What you say about the pre-exisitng question is certainly true, Debbie. But I don't think the hospitals see it quite that way. I know that my current hospital health plan has a list of diseases and illnesses that you have to wait a number of years to get treated for when you join. It's like car insurance: they don't want you getting it just to have a trashed wagon repaired. (An unhappy analogy, at best.)
I figure I'm gonna end up doing a trial in any case, so maybe it doesn't matter so much if I'm on a health plan or not. The more important thing is to find a good hep MD, somewhere they're doing trials.
M.
I figure I'm gonna end up doing a trial in any case, so maybe it doesn't matter so much if I'm on a health plan or not. The more important thing is to find a good hep MD, somewhere they're doing trials.
M.
Thanks Mike, I'm good. Will do the next and last PCR at 1 year post. So that's in about 4 months, since I'm 8 months post now.
I hope you will have been able to start tx by then with the best possible odds for you! I'm really rooting for you, as I always have! Hugs my friend and enjoy the summer!
I'm off to Mali in the beginning of January, can't stand this gray and yucky weather.
I hope you will have been able to start tx by then with the best possible odds for you! I'm really rooting for you, as I always have! Hugs my friend and enjoy the summer!
I'm off to Mali in the beginning of January, can't stand this gray and yucky weather.
Ha-ha :-) Yeah, I've backed off on the Valium. Until the next shock.
Felt a bit like a cyclonic storm... for a while I thought I'd been dropped into Oz by it, and I was looking around for Dorothy and the Tin Man. Only found the phony Wizard, though, and he turned out to be my hep MD.
M.
Felt a bit like a cyclonic storm... for a while I thought I'd been dropped into Oz by it, and I was looking around for Dorothy and the Tin Man. Only found the phony Wizard, though, and he turned out to be my hep MD.
M.
Hi, Elaine. Thanks for posting. I followed the whole tragedy of your son's demise last year. I didn't post then because so many other people were and I didn't want to add to the noise level. But I was so shocked and distressed that I went into denial for a while and stopped posting or doing anything else. Are you holding up okay?
I can't tell you how angry it makes me to hear about the biopsy snafu with Nick. I really think medics don't want to solve this problem, they just want to get consult fees from the drug companies. How in g*d's name could they screw up biopsy follow-through like that? It's inexcusable.
That's why I've been going after all the fibrosis tests I can get. You can't trust any of them, so maybe if you get enough they'll make some sense. Sort of take an average.
Re biopsies, my own hep MD told me for two years that biopsy was a sure thing, the only way to go. Then, when he got the F3/F4 on his Fibroscan, he started saying "biopsies aren't trustworthy, they only take a small bit of the liver". What hypocrites they are, these MDs! Of course biopsy isn't reliable. No one ever proved that fibrosis is evenly distributed throughout the liver in the pre-cirrhosis stages, so how can they know that a biopsy means anything?
But there's nothing much we can do, Elaine. You did everything you could, just like the rest of us. We're all in the same boat, relying on fallible human beings and fallible machines. (Although I must admit that, since it's medicine that caused this epidemic, the lack of seriousness on the part of medical professionals is unforgivable.)
I better stop this rant before my blood pressure goes through the roof.
M.
I can't tell you how angry it makes me to hear about the biopsy snafu with Nick. I really think medics don't want to solve this problem, they just want to get consult fees from the drug companies. How in g*d's name could they screw up biopsy follow-through like that? It's inexcusable.
That's why I've been going after all the fibrosis tests I can get. You can't trust any of them, so maybe if you get enough they'll make some sense. Sort of take an average.
Re biopsies, my own hep MD told me for two years that biopsy was a sure thing, the only way to go. Then, when he got the F3/F4 on his Fibroscan, he started saying "biopsies aren't trustworthy, they only take a small bit of the liver". What hypocrites they are, these MDs! Of course biopsy isn't reliable. No one ever proved that fibrosis is evenly distributed throughout the liver in the pre-cirrhosis stages, so how can they know that a biopsy means anything?
But there's nothing much we can do, Elaine. You did everything you could, just like the rest of us. We're all in the same boat, relying on fallible human beings and fallible machines. (Although I must admit that, since it's medicine that caused this epidemic, the lack of seriousness on the part of medical professionals is unforgivable.)
I better stop this rant before my blood pressure goes through the roof.
M.
God Mike it's all so confusing but sounds like at least the news is getting better - just don't give up and honestly if it were me I'd figure I was somewhere in the middle of both tests to play it safe and be happy with that.
You haven't treated yet right - could that make a difference in being pre-existing after all we are all technically pre-existing when the majority of us have had it over 20 years right?
Just hope you get more good results.
You haven't treated yet right - could that make a difference in being pre-existing after all we are all technically pre-existing when the majority of us have had it over 20 years right?
Just hope you get more good results.
You may be right. In any case, it's all very mysterious. Personally, I don't think the operators are receiving enough training. I was once told that it takes thirty years for a liver ultrasound specialist to learn how to "read" the screen properly. And these Fibroscan screens are even more inscrutable than ultrasound.
I haven't yet switched hospitals. I have found a better one, but will they take me as a patient with a pre-existing hepatitis infection? I rather doubt it, but we'll see.
M.
I haven't yet switched hospitals. I have found a better one, but will they take me as a patient with a pre-existing hepatitis infection? I rather doubt it, but we'll see.
M.
I don't know what to think, Marcy. I must have had the most fibrosis tests of any hep C in history, and I still don't know what's going on with my liver. As tashka said, if I'm only F1/F2 why are my platelets down big-time? None of it makes sense. The only thing to do I suppose is to treat ASAP, in a PI trial if possible.
I had blood taken this morning, so I should have some idea this week how my CAM regime is working (I've been on full-dose Vitamin E, alpha-lipoic acid, silybin, and PPC for a month). It may be a pipe dream, but if I can just get the transaminases down and the platelets up, maybe I can hold the thing in bay for a while. And I'm still pursuing the idea of doing Alinia.
How is it going with you? Are you doing more VL tests to make sure you're still SVR? Are you feeling pretty much back to normal (whatever that is)?
M.
I had blood taken this morning, so I should have some idea this week how my CAM regime is working (I've been on full-dose Vitamin E, alpha-lipoic acid, silybin, and PPC for a month). It may be a pipe dream, but if I can just get the transaminases down and the platelets up, maybe I can hold the thing in bay for a while. And I'm still pursuing the idea of doing Alinia.
How is it going with you? Are you doing more VL tests to make sure you're still SVR? Are you feeling pretty much back to normal (whatever that is)?
M.
I agree. These tests are basically a bunch of c**p. None of them is trustworthy, not even biopsy. Therefore, getting rid of the virus at the earliest opportunity is the only way of dealing with it.
M.
M.
It seems to be ultra operator-sensitive. Down here in greedville they're using it as a money-making gimmick, charging from two to three hundred dollars a whack (a lot of money in Argentina), and the so-called operators are getting only three weeks training (if any).
If two machines run by two different operators can give such widely disparate results (F1/F2, F3/F4), the test isn't worth a lot.
M.
If two machines run by two different operators can give such widely disparate results (F1/F2, F3/F4), the test isn't worth a lot.
M.
Does that mean that you will back off on the Valium dose now?
And, just an observation....Tornados are measured on an "F" scale; F1, F2, F2, F4... I think you've been in a cyclonic storm for a while.
And, just an observation....Tornados are measured on an "F" scale; F1, F2, F2, F4... I think you've been in a cyclonic storm for a while.
Good for you , you would not stand by and let them
tell you of your stage with just one test. I also dont' trust
fibrosure, I'm not current with fibroscan so I can't comment, however
I believe each tech will do the test and scan the liver in different
locations hence, each have a different readings.
I also believe the same is true for a biopsy, how do we
know which part of the liver has/had cirrhosis...fibrosis.?
they take a small piece out. A biopsy is the standard,
however my son could not do another biopsy because
they would not risk his life again, due to hemophilia. He did
do two and the last one was in 2005, showing stage 3 Fibrosis
I have to tell you , and I have proof to back me up, that
in 98 my son had a biopsy...showed stage 1
In 2005 had another, (mind you they were trying to
compare the two). So according to what the pathologist
report, form 98 to 2005 he went from a F-1 to a F-3
7 years. Then in 2006 TX 'd a year...non responder,
in 2007 cirrhosis tried daily infergen and
peg/riba two separate times. 2008 passed away.
What I'm saying is once he reached cirrhosis, it was down
hill from there. But that is not the case for most people.
I believe that quite possibly they read the biopsy wrong.
As I understand it, they take a small portion...ok? which
part of the liver had cirrhosis all or just part? I got no answers.
I mean, for him to decline as fast as he did, no doctor could
give me answers as hard as I tried.
Good luck to you in making a decision to treat,
hopefully the newer PI's, may-be get in a trial?
I wish you the very best outcome
Hugs
Elaine
tell you of your stage with just one test. I also dont' trust
fibrosure, I'm not current with fibroscan so I can't comment, however
I believe each tech will do the test and scan the liver in different
locations hence, each have a different readings.
I also believe the same is true for a biopsy, how do we
know which part of the liver has/had cirrhosis...fibrosis.?
they take a small piece out. A biopsy is the standard,
however my son could not do another biopsy because
they would not risk his life again, due to hemophilia. He did
do two and the last one was in 2005, showing stage 3 Fibrosis
I have to tell you , and I have proof to back me up, that
in 98 my son had a biopsy...showed stage 1
In 2005 had another, (mind you they were trying to
compare the two). So according to what the pathologist
report, form 98 to 2005 he went from a F-1 to a F-3
7 years. Then in 2006 TX 'd a year...non responder,
in 2007 cirrhosis tried daily infergen and
peg/riba two separate times. 2008 passed away.
What I'm saying is once he reached cirrhosis, it was down
hill from there. But that is not the case for most people.
I believe that quite possibly they read the biopsy wrong.
As I understand it, they take a small portion...ok? which
part of the liver had cirrhosis all or just part? I got no answers.
I mean, for him to decline as fast as he did, no doctor could
give me answers as hard as I tried.
Good luck to you in making a decision to treat,
hopefully the newer PI's, may-be get in a trial?
I wish you the very best outcome
Hugs
Elaine
I often think that some technicians can produce a worse report when they know that viral hepatitis is involved. I think it was very smart to move over to another clinic. Keep us apprised of your situation, please.
I'm so so happy for you Mike. I am not at all surprised. As you may remember, I was so sure that they had made a mistake.
I would definitely try to get into a trial with the PI's, that would still give you the best chance.
Hugs to you!
Marcia
I would definitely try to get into a trial with the PI's, that would still give you the best chance.
Hugs to you!
Marcia
hi mike,
thats some great news to hear.
i dont know you remember my me,i had a similar problem.
last years biopsy said f3,this years fibroscan said 70 kpas,which means a very very late cirrhosis.
2 weeks later i became an email from the prof. and he said the med. assistant dit the scan wrong.
he offered another fibroscan for free,but i gratefully declined,cause i felt 2 weeks like i soon have to die.
last week i became the lab results,and everything looks fine,the hyaluron (fibromarker)was in norm.levels.
but right now im looking anyway to get in trial soon,cause f3 is still scary. and i have a good chance to get in the tmc-435 trial in march-april.
all the best for you
thats some great news to hear.
i dont know you remember my me,i had a similar problem.
last years biopsy said f3,this years fibroscan said 70 kpas,which means a very very late cirrhosis.
2 weeks later i became an email from the prof. and he said the med. assistant dit the scan wrong.
he offered another fibroscan for free,but i gratefully declined,cause i felt 2 weeks like i soon have to die.
last week i became the lab results,and everything looks fine,the hyaluron (fibromarker)was in norm.levels.
but right now im looking anyway to get in trial soon,cause f3 is still scary. and i have a good chance to get in the tmc-435 trial in march-april.
all the best for you
Well, you might be able to add Alinia if you buy it yourself and dose yourself with it. Others have ordered it without a doc having to give you a script for it, I think. I seem to recall that Bali has done so, to name one. You can buy it in Mexico over the counter.
congrats mike. really happy for you.
i guess there is good cause why the FDA has not approved this diagnostic tool.
i guess there is good cause why the FDA has not approved this diagnostic tool.
Hi! Yes, it's good news if it's true (who knows?). My platelets are low though, as you say, there's no getting around that. And my transaminases are up. Not good. I don't know if it's reasonable to have such low platelets at F1/F2. I figure I'm probably somewhere between the two Fibroscans, maybe like F2/F3. Time to treat.
I'm currently ending my first month of a CAM formula that I'm hoping may stop, or slow down, the fibrosis. I'm doing Silybin, Vitamin E, alpha-lipoic acid, and polyenyl-phosphatidylcholine, all stuff that Gauf (and HR) worked up. I'm doing my 1-month bloods tomorrow to see how this is affecting my liver (and the rest of me ). I'll report on this later in the week.
I've got to find a good trial soon, if I can't get anyone down here to work with me on Alinia + SOC.
Hope you are doing okay.
Cheers!
Mike
I'm currently ending my first month of a CAM formula that I'm hoping may stop, or slow down, the fibrosis. I'm doing Silybin, Vitamin E, alpha-lipoic acid, and polyenyl-phosphatidylcholine, all stuff that Gauf (and HR) worked up. I'm doing my 1-month bloods tomorrow to see how this is affecting my liver (and the rest of me ). I'll report on this later in the week.
I've got to find a good trial soon, if I can't get anyone down here to work with me on Alinia + SOC.
Hope you are doing okay.
Cheers!
Mike
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