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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
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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