I am freaking out. Just got my fibrosure back and it says F3! My Dr. said they are not completely accurate, but it still freaks me out. The Fibroscan said stage 1/2. I know people have said that these tests work best on low or high fibrosis. Anyone have comments? I made an appt. with the Dr. perhaps I need a BX and think about tx again. YUCK.
In addition to the stats Mike gives, I don't think Fibrosure is recommended until you're six months post treatment as the results may be skewed. If you really want to know, I'd do another biopsy and maybe throw in another Fibroscan. Given your Fibroscan result, I would not freak at all on the Fibrosure.
ANA is an antinuclear antibody test.
ANAs are found in patients who have various autoimmune diseases, but not only autoimmune diseases. ANAs can be found also in patients with infections, cancer, lung diseases, gastrointestinal diseases, hormonal diseases, blood diseases, skin diseases, and in elderly people or people with a family history of rheumatic disease. ANAs are actually found in about 5% of the normal population.
The ANA results are just one factor in diagnosing, and must be considered together with the patient's clinical symptoms and other diagnostic tests. Medical history also plays a role because some prescription drugs can cause "drug-induced ANAs".
Thanks, lovely. well I know I have autoimmune diseases and a blood disease. Certainly hope no cancer!
I was trying to get on Clinical Options, forgot my password. They haven't emailed me yet. What is really freaking me I think is the words, "bridging fibrosis with SEPTA. What is SEPTA?
Made an appt. with my hemo and Hep Dr. With all this fibro fatigue and all, how am I going to go to school. I wasn't taking any drugs when I had this test and it has been more than 6 mos. Time for a BX and another Fibroscan I think.
I wouldn't trust the fibrosure test, no way. Here are my results with biopsy vs fibrosure:
2001 biopsy = F1
2005 fibrosure = F0
2006 fibrosure = F2/F3
2006 biopsy = F1
As you can see the fibrosure test said I had zero fibrosis after being infected for almost 25 years (with a considerable amount of alcohol consumption during that time too). Then it said I went from an F0 to almost an F3 within less than a year. Meanwhile biopsy results indicated a stable low level of fibrosis that was unchanged over 5 years. All of my experienced hepatologists (and I've had a few) are all dismissive of the fibrosure test and consider it inaccurate and unreliable. That's not to say you don't have F3 fibrosis, but the heck if I'd trust the fibrosure test alone on that count. If you really need to know what level of fibrosis you have, get a biopsy or perhaps a fibroscan from HR. Try and not worry too much about it based on just what the fibrosure alone said!
Thanks, your post made me feel better. I had one Fibroscan from HR and it was a 1/2. Compared to Kalio my liver looked like a babies. I asked for the test and my hep dr. said they are not always reliable. Guess, I shouldn't have even done one. Cuz' now I am freaking. Thanks for all your info on BX and fibrosure. I think I will have to get a BX after this news. Apparently, bridging fibrosis with SEPTA is stage 4.
I need a bx and another fibroscan. Hr can compare the two at least. Not that I have any other stuff to worry about. Should I go to school again? Supposed to start in two weeks, besides the fire damaged kitchen I have to pack again. My health is more important and I have made lots of calls and appts. today. Thanks for your info.
I got a call from my Hep Dr. today. We went over my labs. At least he calls back quickly! We went through them all and he said my LFT's are a bit hign but not bad and also the billirubin and cancer tests. Also that Fibrosure is unreliable. He said perhaps I could get another Fibroscan and if I want a BX, he will do one whenever I want. So he did make me feel better a bit. I think I will have that BX. It isn't the spring loaded one, unfortunately. Only one stick. Maybe I shouldn't have even gotten the darn fibrosure, but I did and need to alleve my mind about the stage I am in. Any suggestions? Thanks.
okay, thanks all you guys for your support. I am going to get another fibroscan and compare the two. BX are pretty safe is seems, but not as safe as the fibroscan. What bugs me about the BX is they stick one needle in some random place to test your liver fibrosis. The fibroscan is so much more sofficicated and test so many more places in your liver than a BX. Before when I had one, it tested over 20 spots that were tested for fibrosis. Many of them looked liked a babies liver, some were not so good. How the hell can you do this with one stick??? Doesn't make sense, when the Fibroscan tests all over the liver. Anyway, just my experience and take on all of this. Somewhat controveresal, I suppose, but after having both I don't trust the blood fibrosure, but do the fibroscan. I saw my liver, as well as others livers ....NO comparison in the test results. You can see the fibroscan, not the blood test. Anyway, my take only.
although the fibroscan is a valuable tool it still is not that accurate for the middle stages. it should be used to rule out cirrhosis but not to grade stages. when used in combination with fibrosure & BX you can get a true full picture of your liver damage. even though the BX is only taking one core sample the results help to round out the whole picture. i would not trust any of them by themselves. i found with myself that the fibroSURE showed NO damage, then the fibroSCAN one month later had me close to a stage 2. At that point it scared me into getting a BX which came back stage 1 with mild damage. bottom line is they were are different so i combined all the results to get a better picture of my liver damage. best of luck
bottom line is they were are different so i combined all the results to get a better picture of my liver damage. best of luck
yeah I agree. I got 2 different answers - fibrosure said 0 and bx said 1-2.
And the kicker is none of these heavy hitters can agree on anything. The big Boston doc said my fibrosure cause it was 0, I can count on as being more accurate than a bx, and so he said you don't need a bx. Of course I was glad to hear that.
Then when one of the heavy hitters in NY said my bx was 1-2,,,I said "What?? my fibrosure was 0 and the other doc up north said I can rely on it".....His word to me was " The fibrosure isn't worth the paper its written on."
So when you go around to these different doctors, its hard to find anything that they agree on and that makes it sometimes ever harder (for me at least) to make decisions.
Well a few things come to mind, maybe the few docs that have the fibroscan machine are getting compensated by the manufacturer and swear by it. Or old school docs want to stick with the "gold standard" BX and not wavier from it.
But i see any of the tests only as good as the person performing the test or reading it, i.e. bx slides, etc. I have to reiterate that any test has to be included as part of the "big picture" which includes an experienced "hepatologist" taking into account physical exam, blood work, etc.
hope you are well and by the way happy new year :-)
When you say "although the fibroscan is a valuable tool it still is not that accurate for the middle stages" do you have a source for that? I was under the impression that the fibroscan was widely regarded to be about as accurate as biopsy (and hence will be getting FDA approved soon), and perhaps even moreso due to its multiple sampling sites (as opposed to the biopsy's single sample). The error associated with fibrosis in the middle stages (as you mention above) is commonly attributed to the fibrosure test, are you sure you're not confusing these two?
I've read similar to what Copy said recently, but don't have any citations handy.
What Fibroscan seems absolutely best at is ruling out -- or in -- cirrhosis with better than 90 per cent certainty.
That said, the doc who did my scan would probably not agree that the scan isn't useful in the middle ranges.
Once the U.S. Fibroscan trials are completed, we should have some really good data on how Fibroscan correlates with liver biopsy, since they scanned litteraly thousands of patients and compared those results with liver biopsy results. Although the thought has always lingered in my mind as to how to interpret this correlation, since the possiblity always exist that a given scan may be more accurate than a needle biopsy.
In other words, the assumption underlying these trials is that the gold standard (liver biopsy) is really a gold standard when in fact we know that liver biopsy at times can also be off a stage or so. Still, the trial data should def help with the correlation issue.
"FibroTest and FibroScan have excellent utility for the identification of HCV-related cirrhosis, but lesser accuracy for earlier stages," the study authors concluded. "Refinements are necessary before these tests can replace liver biopsy."
This review adds to the evidence that non-invasive methods tend to perform well at estimating extreme degree of liver fibrosis (none versus severe fibrosis or cirrhosis), but do less well at predicting intermediate stages."
Thanks for the info, and I think what you said "...the assumption underlying these trials is that the gold standard (liver biopsy) is really a gold standard when in fact we know that liver biopsy at times can also be off a stage or so..." is dead on right. Also another thing I'm curious about is how have they accounted for the heterogeneity of fibrosis throughout the liver when they specify that the fibroscan method is more prone to error in median levels of fibrosis? I think it's fairly well understood that as the liver fibroses it doesn't do so in a perfectly linear, uniform manner. As far as I know it's common for some portions to fibrose faster than other portions, so there's a somewhat uneven distribution of fibrosis depending on where you're looking. A biopsy may be a good way at seeing what's going on in a single location, but to use that (subjective) evaluation of a single tissue sample from that one location as "the referee" for a method that measures stiffness all throughout the liver seems a bit shortsighted to me. And another thing I'm wondering about the fibroscan is can it actually give you a map of F-staging of your liver? Like the left lobe has an average stiffness corresponding to F1, the center section is closer to F2 and the right lobe is closer to F1 again. That sorta thing instead of giving a somewhat oversimplified average analysis of "F1". Maybe HR can weigh in on this if he happens to read this, that would be interesting to learn about. I'd like to have myself fibroscanned periodically now that I'm SVR, I think my days of being biopsied are over for good.
My Fibroscan was done to U.S. trial standards. The probe is placed in a single spot, between two ribs. I assume they use the same, or similar spot for all patients. They then take what I think was 10-12 measurements -- in that same spot -- and the computer software then throws out I think the high and low and does some sort of mean. You then see a final number pop on the screen which is your score.
I asked the tech -- and the well-known trial doctor -- whether I could expect the same reading from different parts of the liver. The answer was "yes" that the liver was suprisingly homogenous (sp)? in terms of fibrosis. In other words poke here or poke there and you will get about the same reading.
I do understand that some studies have shown the opposite and that HR apparently uses different scan points, but just relating what I was told and how the U.S. FDA trial is being done.
As to HR's different scan points -- and he is obviously the one to comment accurately on this, not me -- but from memory, I'm not sure he uses the multiple scan points so much because the liver is not uniform in terms of fibrosis -- but because he feels he can get a better reading in some subjects by using multiple points, as various things can affect the reading such as how much fat the subject has. Maybe he'll comment on this.
In my case, I had a nice space between the two ribs and no fat in that area -- so the tech felt he good a very good reading.
No doubt, we will find more about this as the very large U.S. Fibroscan results become published and as others will no doubt address this and other issues, if they haven't been already addressed.
But as an afterthought, another reason why they might just be doint a single scan point is because they are comparing the results to liver biopsy, which in general also uses a single insertion point -- which at least in my case is just where the scan probe was placed. For trial purposes, that alone seems to make some sense to me.
If I haven't already, do wish you a happy and healthy New Year!
mre, jim already posted the study i was reffering to but i also recall seeing another study about the reliability of the fibroscan, i will try and dig it up. like i posted before i would not trust any test alone. i look at each test as a piece of the puzzle. HCV is just to tricky / sneaky to trust one test only!
You are correct in saying HR uses differert places when he fibroscans. He claims it is all about WHO is doing the scan. He did it himself and it almost was like an ultrascan. We went all over the liver and scanned different spots. As I said, some were like a babies liver and some showed the fibrosis. I watched as he did others. He moves the scan around to see almost 20 points or more over the liver. To me this has to be better that a BX, unless they take more than one sample. Yeah, some places in my liver are scarred, but others werent. How do we do this with the gold standard BX? I do want one BX now, and asked how many samples they take. ONE he said. Who knows what one sample shows? You are right about multiple stages. Mine was up and down, so were the others. Perhaps it is an experimental process, but I think MUCH better than Fibrosure, a blood test.
SF: You are correct in saying HR uses differert places when he fibroscans. He claims it is all about WHO is doing the scan.
Actually, as I understand it, the U.S. trial protocol, is trying to take the operator out of the equation so when/if Fibroscan goes national, one can rely on a result in Biloxi as much as a result in Boston.
And perhaps, this is one other reason the scans are being done in the trial setting as they are. At the end of the day, the trial will produce results that will be analyzed for accuracy and correlation. We're not quite there yet.
Keep in mind, one of the problems with needle biopsy is operator error (too small sample size) and pathologist bias (different readings of the same slide).
This is in no way meant to detract from HR's protocol, but you should be able to see future problems if scans become more art than science -- because no doubt they will be done by techs with limited knowledge of the liver's architecture and therefore an individualized approach may diminish their aggregate usefullness.
In other words, we might be better off with let's say 80-90% accuracy across the board with an automatic protocol versus a 90-95% accuracy (I'm just making these figures up of course) as opposed to an opertator-intensive protocol like HR's that might only be available in let's say 20% of the scan sites.
Bottom line again is that large numbers are being produced using a single probe trial protocol, and it's to be seen how well they correlate with the gold standard needle biopsy. I'm sure other trials will follow, perhaps some using multiple scan points.
You're lucky you're able to take advantage of HR's expertise, but what we're talking about with the trials is Fibroscan being used on a national level. Let's hope the results bear the fruits they appear to be doing.
Yes, I am lucky to be able to take advantage of HR's expertise, but in my mind all Fibroscan's should be done with the expertise. How can we say that the gold standard BX of ONE stick is able to tell, while the fibroscan can show so much more. Fibrosure only test one's blood. Not able to look at liver's. I saw several livers that day and I can tell you that I saw the fibrosis. So apparent. In my mind using one spot for a Fibroscan is not accurate in telling how the whole liver is. One spot for a BX would not tell at all how the whole liver is doing.
the fibroscan can not tell you other things that a BX can, i.e. portal inflamation, iron, bile duct, etc histology. i will stick to my original statement they all have to be used together. i had all three tests one month apart. all close but not the same result.
I'm not saying that the fibroscan is the "gold standard", but after having a BX years ago, I remember the one stick. How can this be representative of the whole liver? Doesn't make sense. Yes Jim, the operator of the fibroscan is all important, acording to HR and I believe it. There is NO way that I would have known that I had baby liver in some spots and fibrosis in another with a BX. Unless you get a BX with muliple sticks, how will one know the whole picture.
Copy, yes you are correct in the Fibroscan not checking these things you mention. I think various tests should be done.....just NOT Fibrosure!!! LOL
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