I just recieved the results from my Fibroscan this morning. My score was 8.3. The hepa doc said I was between a stage 1 and stage 2. This seems more like a stage 2 from what I have read. Anyone know the score ranges for each stage? I have a viral load of 6.7 million IU/ml. My liver enzymes are slightly elevated. Kidney functions are normal and blood counts are normal. I will know my genotype next week.
According to my notes, more like early stage 2. Still an excellent result showing no signficant liver damage. That said, my correlation data is over two years old and may have been updated. Assuming that you were scanned by someone quite knowlegeable, perhaps you are between stage 1 and stage 2 but my guess is probably closer to 2.
my score was 8.2 and was told the same thing stage 1-2. The last studies i saw about the Fibroscan was it was not that accurate on the low end but almost 100% for high score (cirrhosis)
This may be why it still has not been approved by the FDA. I was told by the French manufacture in sept, 2007 that approval was suppose to come early 2008 and it never happen.
I would not put much into that score except that you do NOT have cirrhosis. The only way you will ever know for sure is a liver biopsy and even they can be only 90% accurate.
From what has been posted (CS, HR, Myself) you appear more stage 2 than stage 3 although "HR" has quite an overlap between stage 2 and 3. Assuming he gave you the scan, perhaps he's giving you a conservative reading and/or factoring in BMI (which could affect a scan) or something else. In any event, even if stage 3, I doubt "8.7" would indicated advanced stage 3 (bridging fibrosis) but more very early stage 3 which some might argue gives you at least a couple of years to wait for better drugs. But personally, given your score, age and BMI, and genotype (1?) I'd go for a tradtional needle liver biopsy and be certain.
Copy: The last studies i saw about the Fibroscan was it was not that accurate on the low end but almost 100% for high score (cirrhosis)
My mid-treatment Fibroscan score was 9.5 which put me on the cusp of stage 2 and 3. The other way they put it was that they were 90% certain I did not have cirrhosis. Six months post treatment my score was 8 which puts me at an early stage 2.
I know you've posted before, but could you go over how your Fibroscan, Fibrosure and liver biopsy correlated -- with dates. Thanks.
Yes you are correct on all points I am bordering stage 3 and was advised I do have time to wait and was recommended supplements in the meantime and diet and excercise there was one area bad but with the fibroscan it seems to be able to take a broad spectrum reading of the liver as explained to me and one can be different stages in different parts of their liver am I correct on this ??
Yes, diet and exercise are good advice. Getting down to your ideal BMI is probably the most important thing you can do for your health now. Look into one of the lower carb diets like "Sugarbusters" or "South Beach". As far as supplements, I'm not that well versed here but make sure to check your liver enzymes at least monthly whenever you add something new.
As to "different stages in different parts of liver", the trial protocol for Fibroscan is taking the mean of multiple readings on a *single* spot. I do understand that HR uses multiple spots but since most studies (Fibroscan and those with needle biopsies) use a single spot, not sure how one would evaluate that information. According to my Fibroscan coordinator, the Fibroscan readings are remarkably similar in all areas areas although I never got to test that by asking them to take readings from different spots. I did ask the technician to do so, but at that moment a visiting observation team walked into the room so it was never done.
Not sure what advice you were given about a confiriming needle biospy, but again -- especially if you're not going to treat, I would seriously consider a needle biopsy within the next year and perhaps a follow-up scan in six months to a year.
Just wanted to add -- that assuming the advice "you have time to wait" -- was given to you by "HR" -- it's gratifying that he thinks someone bordeline stage 3 has time to wait.
I can't remember if this is a shift from some previous comments he's made, but if so, it may reflect the fact that the current PI's in trial are showing some very promising results and therefore a logical conclusion (for me at least ) is that everything else being equal, the threshold stage for "watch and wait" has been raised a bit. In other words, where someone might have decided to treat a year ago at "stage x", now they might decide to wait some.
Still, the higher the stage, the more vigilant the "watch" part of watch and wait must be. Therefore the suggestion of needle biopsy and Fibroscan follow-ups.
For me and my situation the advice was to wait till next year do to business matters and my current health status as if I was to tx now chances of success are low so could wait when better drugs will come out next year
If I decide that I am able before the new drugs come our or ( get my IR under control weight diet etc) then to definately use Alinia with tx and Metaformin if needed
as I can get it here in Mexico He gave me the name of the products here.
Meantime many sups to help me guard against further liver damage during the wait.
I believe this sups work I have already noticed a boost in energy and stomach issues are much better that could be the diet too
8/2/07 FibroSCAN (done in Boston) 8.8 kPA , doctor said around stage 2
8/16/07 FibroSURE F0 - No Fibrosis, Grade A0-A1 very minimal activity
9/27/07 Liver core biopsy: Stage 1, Grade 1. Here is the exact wording from BX report:
Mild portal chronic inflamation (grade1)
No significant lobular activity (score 0)
Focol mild portal fibrosis (stage 1) by trichrome & reticulin stains
Stainable iron not increased.
Comments: The diagnosis is concurred by multiple staff pathologists in intradepartmental consultation.
Thanks guys. this gives me a lot to ponder and research. It seems like a lot of you are on top of this thing.I have only known that I have this disease since July and I am still a newbie. I will be 47 in March,have a bmi of about 25 and exercising very seriously.I have lost about 14 pounds so far. I'm 6 ft 2 and weigh 208. Trying to get below 200. I have improved my diet allthough I have a way to go on that. I take milk thistle,r lipoic acid and Phosphatidyl choline as recommended by my regular doctor. I also have high blood pressure which has been under control for the last ten years or so. I take blood pressure meds for that and fish oil. I do not drink alcohol at all anymore and started drinkin about a gallon of water a day. I drove down to Miami for my Fibroscan and the hepa doc wanted to get me in a trial but that would be impossible as I live in Nashville and he said I would have to go in once a week for a check. The closest trial I could find so far would be a boce trial in Atlanta which is about four hours away. If I had bad sx I'm not sure I would be able to make the drive once a week. I finally became insured the first of this month through a state program for the uninsurable but it is very expensive and only covers fifty percent for the first six months. I will be starting with a hepa doc at vanderbilt soon.
Anyway that is most of my situation and I really appreciate all of the advice and it helps a lot to come to this site.
I measured 8.5kps on Fibroscan,freshly calibrated machine,expert techinician.
Simultaneously on trans-jugular biopsy 'developing cirrhosis at least'
I don't consider the fibroscan a reliable substitute for a biopsy.
Did you have other clinical symptons of cirrhossis such as a low platelet count, enlarged spleen, etc? The possiblity exists that the fibroscan was correct and the biopsy was wrong either due to: (1) relative sample size; (2) absolute sample size; or (3) pathologist bias. Under two of the scales mentioned above, an "8.5" would put you at stage 2. "HR's" scale, however might put you as an early stage 3. You didn't mention what stage your biopsy showed but "developing cirrhosis at least" sounds like it could have been a late stage 3. I mention all this because needle biopsies have been shown to be off as much as 2 stages because of the three factors listed or a combination. That is not to say that your conclusion isn't correct at least in your case, i.e. "I don't consider the fibroscan a reliable substitute for a biopsy." but probably best to evaluate that conclusion by analyzing all available comparision/trial data.
On a personal note -- forgetting numbers 1 and 2 (above), I had the same slides reviewed by four different pathologists at major hospitals in the U.S. I was given the following values: stage 3, stage 2, stage 2.5, stage 3. Further one pathologist told me there was no way I had cirrhosis while another said I just might have it.
The jist of all this is that there is probably no one 100% reliable marker for any of us and the best course if needed might be a combination of needle biopsy, fibroscan, as well as clinical evaluations by a good hepatologist with perhaps another hepatologist and pathologist thrown into the mix.
I would get a biopsy to determine what really exactly is going on. Fibro is not as reliable and there is a huge difference between a 2 and a 3 - at least if you ask me there sure is. Personally i believe that at stage 3 you SERIOUSLY have to get the ball rollin' and start treatment. I believe at stage 3 you've already damaged 3/4 of your liver and are 3/4 of the way to cirrhosis - treatment becomes more important. Fibrosis might be reversed - cirrhosis will not.
I personally believe the time for watch and wait has passed.
What if you do do treatment and it does not work? You need time to be able to find an alternate means to do something before you are cirrhotic - before you've damaged your liver to the point that no matter what you do, it cannot be repaired.
At stage 3 you are really running out of wiggle room in my opinion. I do NOT believe in watch and wait at stage 3. But I'm not an important researcher - it is just that to me it makes very little sense.
I was stage 3 and treated for 72 weeks. I have been cured for two years next month.
I would like to take the upbeat view but the other diagnostics are not encouraging.
Marked fibrous expansion of the portal tracts
Nodular reconstruction(in areas) on biopsy,ultrasound and MRI
On the bright side,no varices,normal liver function.
I too have had different pathologists give totally different readings of the same slide the most extraordinary was in 2003 when one came in at Stage 1 and the other at Stage 3!!!!!!!!!!!
On balance I prefer to accept that the fibroscan scores (3 of them over one year all consistent) are an undercall
Peoples results will vary so proceed with caution. I have heard of cases where the liver damage was spotty and a biopsy happened from a healthier area. A subsequent biopsy later on hit a worse area and it appeared that the patient had progressed rapidly. I think that just points out one of the possible weak points of biopsy. It may also suggest why some people are told to "get yer affairs in order" and then proceed to live well beyond the doctors expectations.
I had a fibrosure in 2005 and it indicated a high stage 1- early stage 2.
When I got a biopsy in June 2008 I was given a 1/6 ISHAK score. Still a stage 1 and perhaps even less damage than the Fibrosure indicated.
Sounds like more stage 3 from what you post, but probably not stage 4 as the last pathologist suggested. Were they able to get a good "shot" between the ribs or was there, er, a bit of fat in the way? I say this because I've heard that too much fat can affect results although I'm not sure which way. In any event, good luck down the road!
Actually it was a trans-jugular biopsy rather the needle type.
The latest one that is-they go in through the neck.It's much less traumatic.
The radiologist told me it was a good sample.
I'm hoping to get on tri-therapy (Telaprevir) like next week but it's like negotiating a minefield of red tape and protocols!
not sure if your post was directed to me but I am commenting I agree with you on many points and I am frightned too
The Expert says most likely 72 weeks of treatment with my situation too with current interferon He only suggested too that I wait till next year seems it may be a shorter tx time for me I can tx now just have very little chance of success to SVR however I do understand it can help my liver but His opinon the IR is very dangerous as well if Interferon gave me full blown diabetes that is a downward curve that cannot be fixed
damned if I do and damned if I don;t position here so just trying to get in shape with the IR he did recommend metaformina and alinia and some sups if I tx now to help with SVR
so working against me are
hep B and C geno 1b which he said is the hardest to SVR
weight 40 lbs overweight
IR Homa 3
Arthritis which makes it mostly impossible to work out I suffer terribly in pain from excercise
Heavy work load with two businesses Need time to get this in order
Also had a Ultra Sound before I went showed fatty liver stage 2
microdondular nodules but the expert said "how can they tell that from Ultra Sound
I am going for a CAT Scan
and a Hep B liver panel test to see what is going on there
meanwhile taking sups and watching what I eat
the sups have totally turned me off to coffee good side affect
I had a Fibrotest put me at almost stage 2 that was 4 months ago
the Fibroscan I believe is a good marker as it shows other areas
I am stage 2 in areas and stage 3 in smaller areas and one small area stage 4
the Fibroscan was about 20 to 30 min very comfortable because of the angle you lay at I could not personally see what was going on just listened
I know I do not have much time to wait to treat but a few months
I am considering a bx although it was not and issue or recommendation from the expert
the most realible liver biopsy is either a wedge done laparoscopically or traditional BX but with 3 samples (at least 20cm) from different parts/lobes of the liver. Like jim said you have to combine all possible tests and a physical exam by an experienced hepatologist to really get a good idea on your liver damage. I would not rely on one single test by itself. If I had to I would rely soley on an experienced hepatologist exam and bloodwork to rule out cirrhosis, I think a good doc can tell if you have cirrhosis just from exam & bloodwork alone.
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