I went up to see Dr. A in Boston and found out something very interesting. Because my fibrosure test shows 0 damage, he said I do NOT need a bx.
Dr.A went on to explain that the fibrosure test is 90% accurate when showing 0 damage,,,while the bx is only 80% accurate when showing 0 damage. This is just in a case such as mine. He is not saying fibrosure is better than bx at other times.
Dr.A is a great person to meet and consult with as is the Doc that assists him. Anyone thinking of seeing him will be happy they did. Real down to earth guy.
I posted to Jim in thread below "DD worrying after Svr," more details.
My stats are nearly identical to yours and I'm skinny, too. Dr. A. advised me to wait. I did get a Fibroscan (Dr. A was willing to give it to me even though I had done a Fibrosure test a couple of months before my visit).
I still don't understand why you weren't more assertive about asking for a scan while you were there.
yes, the fibrosure is 90%accurate when showing 0 damage as compared to the bx is only 80% accurate when showing 0 damage.
I was shocked...To make sure I heard him right, though my husband was there also,,, I asked Dr.A...." so there is NO NEED FOR ME TO GET A BX??" He said no. I don't need one.
I was so happy to hear that because I figured I would have to get one soon. Now, forget it. No one will talk me into it. I would if the score was different, but I trust what he told me.Good news for sure. I was happy to hear that. No doctor ever told me that.
My test score:
F0- no fibrosis 0.08 0.00 - 0.21
Necroinflammat Activity Score
0.33 High 0.00 - 0.17
What genotype? MyOwn is a geno "2", maybe that's why he said "treat". I agree with you on being assertive can mean the difference or not. In my case, I made sure the scan was a done deal before I saw the doctor. On the other hand, maybe he would have scanned her if she was a geno 1. Just speculation on my part. Hope this finds you well while watching and waiting.
I'm genotype 1 and very assertive when it comes to spending big bucks for a cross-country trip to Boston. There was no way I was leaving the scan to chance. I just have a feeling that they would have accommodated Myown's request for a scan if she had simply asked for it. Too bad.
Again, I agree. It then appears the reason Dr A suggested MyOne "treat" and you "wait" is genotype. As I'm sure you know geno 2's have better odds in half the time, so many docs will urge them to treat even with no damage. So since she was going to treat anyway, and with a F0 Fibrosure, he probably didn't think a scan was necessary. But I'm sure he'd have given one if she made a point of it. Sorry you didn't get a hug, but at least you got the scan :)
hi myown, thanks for the great info, i also had the fibrosure and this makes me really feel good as my results are very similar to yours, 0.09 F0 (NO fibrosis) and 0.31H A-1 (minimal activity). on the other thread you mentioned about a doctor down in jersey. i live in south jersey, can you give me the name of that doctor when you get it. right now i treat with a doctor in newark, 2 hrs away. good luck with your tx.
dance,, jim is probably right. are you a geno 1?
jazz...I had a strong feeling from the time I was told I had no damage, that it was accurate. Fibroscan to me is not necessary (for me,) I could have pushed for it, but for what? Its only because I trust the fibrosure becasue of score being so low.
lol, yeah the hug was cute jesture and unexpected, but maybe because I am much nicer in person than on the net.lol We can't hear our tone of voice and sometimes we don't come across well over net. I know people have mis understood me and I'm sure I have mis understood others.
Eric is on week 8 and feel great - he has experienced no side effects. sleeps like a log, eats well and is always in a good mood. He was UND at 4 weeks, actually at 1 week - they ran a V/L - because he is so young - they dont treat many 18 yr olds
Nothing happened at school - there has been no response since I responded to that initial email about having a meeting to discuss his medical condition with "could you be more specific about that". For now it's fine eventually it may need to be addressed but I cant do it right now. It has not interfered with how he has been treated and he is still going out to work.
My next appt with Dr A is in April but he said he will probably call me before then with an idea. He was talking about interferon that is given every 2 weeks and lots of other new developments and trials
I do have a lot of fear about tx - I know I will not handle it as well as my son.
For some reason I wasn't really thinking "genotype" when I posted to you below in regard to what I might do in your shoes. Given the fact you're a geno 2, Dr A's recommendation makes a lot of sense except for most of us, especially given what I perceive your strong desire to rid yourself of the virus as soon as possible. In follow ups -- I'm sure he'd take an email -- or with the doctor you end up choosing, you might open up a discussion of "short course" treatment and get their feedback. If they were open, a lot of that decision I imagine would be based on what your VL is at weeks 2 and 4, as well as perhaps pre-tx levels. So Dr A gave you a hug, hey? From his picture, he looks like a pretty big guy. Hubby not jealous? LOL
HB:Or to put it another way, if fibro is 90% accurate what is the 100% baseline?
LOL. I was thinking *exactly* the same thing but it does appear that is exactly what Dr. A told her. Maybe he's using Fibroscan as the base :) No, I doubt it.
Really good question. Maybe he's somehow factoring in needle biopsy variances caused by actual sample size, relative sample size and pathologist bias. Some sort of mathematical model? Got me, but I do respect the man's opinions. I did mention in thread below that Dr D doesn't put as much credence in Fibrosure, although not sure if he differentiates per fibrosis level as Dr A. In any event, sounds like she's treating, most probably has no or little damage, and is doing the right thing.
When a bx is given the doctor doesn't say the bx is 100% accurate though either? What is he basing that on? Is it the fact that the liver is so large and you are only taking a tiny piece, correct? Unless they factor something else in too. Don't know. But the doc on phone said that in some places they take from 3 areas. I had read that on forum already too, maybe you posted it?
Yes, that's correct -- 3 variables -- absolute sample size, relative sample size and pathologist bias. I just wanted HR's take on where he thought the 80% and 90% numbers came from. Also if liver biopsy is 80% accurate at F0, wonder if it's more or less accurate at less say F3. But maybe these are just retrospective studies analyzing how much sample was available, etc, etc. Not that it's a bad thing or anything (I've had 3 or 4) but be glad you aren't getting stuck :)
To send the blood from pakistan to the US is difficult and expensive. It needs to be sent on dry ice ( frozen carbondioxide) and you have to make sure that fedex and customs replenish the dry ice as it goes. The transport might cost more than the test.Sometimes it is good not to be in pakistan.
They might have good PCR in India? i do not know.
Yes, great news for sure!! My husband and I were so thrilled!
Yes, I will give you the name when I find out for sure. They weren't sure of the spelling,nor what town he is located in, so I don't want to give you someone who I am just guessing who they mean.
you said you are going to Newark. Are you going to C.B.L or C.M. L. both are in the same office and have same exact first and last name, but different middle names?
If its them... Do you go to the one with the "B" in the middle. Hows the bedside manner? I heard not so great, so I didn't go. I had tried to get an appointment a few times and just keep getting answering machine. That scared me because if I was a patient and needed to get a hold of someone. Is that a problem there or was it just wrong timing on my part.
You didn't start yet, did you? sorry for not remembering, but I thought you were not tx yet.
Maybe he's somehow factoring in needle biopsy variances caused by actual sample size, relative sample size and pathologist bias.
Yes Jim, thats it, from what I understood.
They are so on the ball. The doctor that works with Dr. A just called me, just this minute, so I asked him again to clarify the 90/80 and used your wording(it was right in front of me,I must have sounded smart like you, since I was using your words.lol)
The doc wanted me to know that he will be sending out the names of the doctors and he gave me my liver panel ranges which were good, thank God. I am taking lots of milk thistle, they better be normal. Selenium and lipoic acid and NAC.
Jim, dr. A did say that if und at 4 weeks, he'd be happy with 16 weeks if thats all I could do. I do trust him, but I am so afraid of relapse and if I am tolerating tx, I will go the 24. If its a nighmare, I will probably quit at 16. All you guys who tx for so many weeks will have to route me on. I'm sure you will.
I am chomping at the bit for so long that I welcome riba and interferon. I feel nuts from the wait. I "am" nuts from the wait, not "feel."
Some facts about the fibrosure (fibrotest, actitest) test. it uses 7 variables:
a2macroglobulin in g/L
Haptoglobin in g/L
Gamma GT (GTT)
bilirubin in uMol/L
apolipoprotein A1 in g/L
From these, with individual formulas, the component weight of each is calculated and placed in an overall "accounting formula, which has, as a bottom line, the Fibrosis Index.
One problem with it is, that the GTT and the bilirubin ( both of which are heavyweights" in this formula, have strong individual variability by genetic influences, that have nothing to do with fibers impairing the underlying metabolism of these components.
Evaluation/validation was done by statistical workup of these indexes against biopsies.
ALT values are used in the "actitest' only trying to assess inflammatory activity.
LC# is 550123, 3ml of serum is needed.
Fibroscan vs Fibrotest is currently hotly debated, after one paper in hepatology concluded that Fibroscan has higher predictive power for fibrosis than fibrotest. Dr. Poynard with whom I have discussed his test at length in his hospital pavillion in Paris is fighting back, of course. His main argument against fibroscan is, that overweight patients pose a problem. He admitted to the bilirubinproblem of fibrotest/fibrosure but thinks that not too many have this genetically elevated bilirubin level.He was silent on the GTT issue.
HR: This way even small rural communities can enjoy an early diagnosis of cirrhosis, long before the confusion, the blood and gore or even the spider naevi......
The Livermobil... sounds a little like an idea I had in the early 70's -- Bought a school bus, removed the seats and was planning on turning it into a moving eatery called "Buscafe". Ended up ... well, that's another story :)
Maybe if we combined the two concepts (Livermobile and Buscafe) we could reach a wider audience -- say call it "Scan and Spam" ? Or, we could make a deal with a liquor store chain and offer a free scan with every case? Lots of potential here. Are you still in contact with the ill Aliens, as they already have experience moving the device?
Per the "Doc Eye for the Hep Guy" video on Clinical Options website, Dr. Dieterich in NYC (unlike Dr A) doesn't think Fibrosure is very useful in his practice. Like you suggest, a hot debate within the professional community. Dieterich, however, seems to think Fibroscan may have promise.
Well, I gave the detailed description of the Fibrosure to have everyone get some feel on how this might actually work and have also expressed my thinking about it previously twice.Simple put however ; If the Fibrosure is ultralow, there is little reason to worry and a biopsy might not be needed, Later it will probably become SOC to do typically a fibrosure and a fibroscan together to see if they fit together to increase accuracy and predictive power.
I was stage 3 by needle biopsy 4 years ago. Around stage 3 (maybe high stage 2) by Fibroscan mid-way through treatment. Low stage 2 by Fibroscan 4 months post treatment. I'm now 8 months post treatment and 2 months post SVR -- do you think the Fibrosure test has any value to me -- either absolute value or relative value, meaning to establish a Fibrosure "baseline" at this point in time. Thanks again.
Not a bad idea to get a fibrosure "baseline" in your situation.After all, all is needed is 3ml of serum. i have to make this one comment though and i cannot comment on that comment but I am just reporting a fact: Two fibrosures on the same patient 1 month apart : One came back .13, the other was .39.....What can I say. No biological events in between that we are aware of.
Thus it might make even more sense to get the fibrosure/fibroscan combo once there is good access.
Hi HR, so you are saying that you disagree that the fibrosure is not as accurate as a biopsy when the fibrosure results are F0? i have asked a few top hepatologists if they would trust the fibrosure at a low or high end result for themselves or a family member and they said they would trust it. this is a very controversial subject to say the least. people who had the bx swear by it and say that is the only way to go, and on the other hand those who have had the non-invasive tests swear by them. i see that more hepatologists are getting away from the bx and relying more on other tests, even for geno 1's. i had a hep doc tell me that a good doc that has seen 100's or maybe 1000's of hep patients can look at labs, physical exam, etc and tell what their stage is. with as many hcv people coming out in the next several years thay will have to get away from the bx as the "gold standard".
Most every test in medicine needs a "gold standard". The question with the inaccuracy of the needle biopsy to be around 80% ( that goes for higher stages just as well, many cirrhotics have been misdiagnosed this way) what if anything could be the "100%" that we need to be able to say this is "80%".?
Well one component that you can determine is pathologists inaccuracy - by having a whole panel of them look at the same biopsy afterwards and then come to a consensus that might be different from the individual pathologist. Do that at a larger number and you have a study that determines reader inaccuracy.
the problem with sample size and position withina liver that is variable in tissue composition and staging can be tackled in three ways :
1. You do a biopsy under endoscopic control as Dr. Schiff typically does it.This way you see the liver, and you pick the worst spot to insert the needle. I am sure you can imagine the study that can be done with this comparison to determine another component of the overall inaccuracy.
2. You can do a wedge biopsy ( outsch) that takes a much bigger piece of the liver and work it up. And then the study....
3. Some patients often enough die soon after a biopsy. Not because of the biopsy, typically, but even that happens. Then the whole liver is analyzed, slized that is your ultimate gold standard.
Thus over the years, small studies have been done using all this methods from which these inaccuracy figures are derived.
All these noninvasive methods of course are typically compared to biopsies. Go type fibroscan into Pubmed and see what you get.
There are at least two dozen studies available, some small, some bigger, but biopsies are always the comparison, sometimes other noninvasive methods.
My point is this: take patient A and he has a biospy then has one of the tests that are 'non-invasive' and compare the two results side by side. My doctor says that this is not done as a matter of procedure -- far from it.....
That is exactly what is done in all these "noninvasive" trials. What else would they compare.As i said, go to pubmed, you will find some full text articles free access and look ino the methods section.
I have a whole collection of these articles right here, you will have to trust me on this and it is also the only thing that makes sense in this context.
HR: I took my motorhome, hired two illegal aliens, and paid only 135.00 in customs
Sounds like you ran a *Fibroscam* on customs. Luv it. Good going
OK. So you remember I'm in advertising, hey. Here's an idea, we'll steal it from Dial-A-Mattress. So we'll be Dial-A-Scan. Just call 1-800-Fibroscan, and leave off the last "n" for Neupogen :) We'll even pick up your used Redi-Pens for free.
I was rather thinking of something like the "Livermobil". the thought came naturally when I had this monster in my motorhome.
You remember the days when the audiometry bus was cruising through New York State?
This way even small rural communities can enjoy an early diagnosis of cirrhosis, long before the confusion, the blood and gore or even the spider naevi......
More so since these are typically quite bored, which leads to NAFLD.....
You mean like the good old Dr. with his famous bag, except it now additonally contains a fibroscan?
Well, you did see it, but you have no idea how much heavier it is than it looks!
When it arrived in LA, one of these international forwarding companies had it and wanted to charge me 2500.00 to bring it through customs and deliver it. Since I am stingy, I took my motorhome, hired two illegal aliens, and paid only 135.00 in customs, since i could convince them that it was not availabe in the US and therefore an exemption to the tariff applied. Nice gys, really, very lineate. The forwarding company however was so furious, they did not want to hand me that thing!!! Since i am quite familiar with Califonia law of torts, I made them in the end. But thank god for the aliens!
We have a nice guy in the forum (actually that's his name "niceguy2007")from Pakistan who just had his four-week test (geno 2) and is non-detectible down to 500 IU/ml. We were wondering if/how/where/should he send his blood out of the country for more sensitive testing. The thread is eight threads down from this one. I'm sure he'd appreciate any input. Title is "4 weeks, 3 day undectible".
Quick question that both HepCBoy and myself wondered about. Dr. A suggested that Fibrosure is more accurate (see above posts) than needle biopsy -- not for all, but for stage 0 liver damage. If so, what do they use as a "baseline" to compare accuracies to?
Hello everyone. New here. Have really enjoyed reading from this forum. I don't have much time this morning but I had a fibrosure done last month and have questions / comments.
1a, have had virus 32 years, was diagnosed due to symptoms (extreme fatigue for about 3 years, depression, strange rashes, spider nevi, no palmar erythema, hair thinning - felt like sh**). Labs were OK, though - until 2003 (which is when I was diagnosed). A CBC showed platelets down some, enzymes up to near 100, rbcs and wbcs were down. Hep panel was done. Biopsy June 2003 showed Grade 3/ stage 2, viral load 400,000. Tx recommended. Pulled within the month due to complications. Chose not to retry and to be followed. Labs stablized. Everything returned to WNL (platelets, rbcs, wbcs). Had peridontal disease treated (couldn't treat with the infection.) Got it treated, it's doing fine. I asked for referral to Duke last year. Been under their care since Sept 2005 doing the watchful waiting with my doc's blessing (great doc) and waiting to hear on VX-950. I didn't get in the trial. It wasn't a total surprise since I'd had some prior treatment.
Have been told recently I can paricipate in a polyermase trial coming up with HCV 796 (haven't made any decisions yet). Will discuss this more with doc in a few weeks.
Another biopsy has not been recommended on me (they said it would most likely show the same thing as it did in 2003.) Since I wanted some measure of my liver compared to biopsy, I got a Fibrosure done last month. It showed:
(hope this displays OK)
Fibrosis score 0.46 H limits 0.00 - 0.21
Fibrosis stage F1 - F2
Alpha 2 - macroglobulins 301 H mg/dl limits 110-276
haptoglobin 67 mg/dl limits 34- 200
Apolipoprotein A1 142 mg/dl limits 110-205
Bilirubin, Total 0.7 mg/dl limits 0.1 - 1.2
GGT 29 IU/L limits 0 - 60
ALT (SGPT) P5P 72 H IU/L limits 0-40
Intepretations: (this is a statement at bottom of lab report - on all of them, I supopose) :
Quantitative results of 6 biochemical tests are analyzed using a computational algorithm to provide a quantitative surrogate marker (0.0 - 1.0) for liver fibrosis (METAVIR F0-F4) for for necroinflammatory actviity (METAVIR A0 - A3)
Fibrosis Scoring (my score is 0.46)
<0.21 = stage F0 - No fibrosis
0.21 - 0.27 = stage F0 - F1
0.27 - 0.31 = stage F1 - portal fibrosis
0.31 - 0.48 = stage F1 - F2
0.48 - 0.58 = stage F2 - bridging fibrosis with few septa
0.58 - 0.72 = stage F3 bridging fibrosis with many septa
0.72 - 0.74 = stage F3 - F4
0.74 = stage F4 - cirrhosis
This is the first time in over two years my ALT has been elevated (and it's only slightly). My platelets on a CBC done with the fibrosure (in October) were down very slightly to (I think it was 139; dont have lab in front of me). Doc said it was no "biggie".
I would appreciate anyone's opinion or comments on the fibrosure. My interpretation of the fibrosure is (since the fibrosure "scores" indicate I'm at Stage F1-F2 and Grade A1-A2) that there appears to have been at least no progression in my liver disease (when comparing it to my biopsy of 3 1/2 years ago that said I was grade 3 inflamed and had stage 2 fibrosis).
Thanks so much. Looking forward to meeting everyone here. Looks like there is a lot of participation.
Wishing everyone the best on every step they take in their journey.
PLEASE DON'T BE AFRAID TO START A NEW THREAD.....I REALLY THINK YOU'LL GET THE ANSWERS TO ALL YOUR QUESTIONS THAT WAY!!! PLEASE DO THAT SO YOU CAN GET THE SUPPORT YOU NEED AND DESERVE!!! WELCOME TOY MH!!!! Mkeela
Thanks. I guess my genetically low Apo1's will then artificially increase my Fibrosis score under Fibrosure. I was wondering by how much but I guess it's really hard to tell. You obviously were looking ahead with Fibroscan, being the first here. One quick question: have you ever scanned "normal" people, like those who don't have hcv etc. For example, would a "normal" person my age -- late 50's -- have stage 0, or would you see perhaps a stage 1 or 2 because of simply age? I'm not talking about anyone who drinks heavily or drugs, etc, -- just a normally healthier adult. Thanks.
HR: Some facts about the fibrosure (fibrotest, actitest) test. it uses 7 variables:
a2macroglobulin in g/L
Haptoglobin in g/L
Gamma GT (GTT)
bilirubin in uMol/L
apolipoprotein A1 in g/L
Not familiar with "a2macro..." or "hapto...", but I do have some comments/questions on the other Fibrosure components.
GGT...As you suggested, GGT may not be reliable. Also, both the Cleaveland Clinic and one of my hepatologists don't even include GGT on their liver panels anymore because they feel it has no diagnostic value.
Apo A1 -- My family has genetically low HDL and Apo A1, therefore even if I had zero liver damage, my Apo A1 would be low, as for example was my fathers. So again, how is this going to help determine any changes in my staging? My apo A1 is going to be low whatever my stage.
Age and Sex -- I understand that both are pre-tx predictors of SVR and perhaps perhaps Fibrosis progression, but after reaching SVR I don't see their relevance. Also, I was under the impression that the younger you originally were infected, the faster the fibrosis progression and this is not taken into account.
Question: Statments have been made that Fibrosure is let's say 90% accurate for a certain level of Fibrosis. Were these studies based on folks pre-treatment or after treatment SVRs. I would think this might make a difference, especially with the ager and sex variables.
I know the test has gotten good "grades" but some of the components just seem a little "iffy". Maybe some of the components I mentioned aren't weighted very much? Do you know how much they weight each component? Any comments on the above would be welcome.
Factor Labvalues Formula components
a2 macroglobulin g/l 4.467 3.09
Haptoglobin g/l -1.357 1.15 -0.082366969
GGT u/l 1.017 17 1.251366553
age 0.0281 58 1.6298
bilirubin umol/l 1.737 10.26
apo a1 g/l -1.184 1.16 -1.37344
sex f=0 m=1 0.3 1 0.3
z8 -5.54 -5.54 A constant to correct.
Fibrosis index 0.13037
This is an actual example of a fibrosure calculation. Index is .13 in the end.
Now the actual formulas that calculate from the lab value to the "weight' in the acccounting list is not seen, so in other situations the relative weight is not the same. Mostly logarithmic formulas are used. All in all it seems a bit adventurous to calculate the final index this way - and yes it can be mistaken as I have hinted in the above comments. While they have tested the index in HCV, HBV, alcoholics etc, there was no such fine differentiation as far as I know done as you suggest ( before tx, responders, etc. You understand for political correctness I do not want to endorse the fibroscan too much over the fibrosure, thats why i gave you only the facts with some story from Paris. You need to read in between the lines. Why do you think I obtained this hellish expensive piece as a first in the US? Because after careful analysis of the data, the principle behind the method and a many hours meeting with the inventor Laurent Sardin, a French Physicist and mathematician, I found it to be the most direct way to measure quantitatively what makes the liver stiff: The fibers in it. Thats a pretty direct way to assess fibrosis. Since then there appeared numerous papers in hepatology and other peer reviewed journals confirming the validity of elastometry.
"Normal' people have a kilopascal value between 4 and 5. I saw some age dependence - kids have a really soft liver - look at calf liver vs beef liver and you can relate that fact.
What were the actual Kpascal readings of your two scans???
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