Good morning everyone. I was diagnosed last October after elevated Alk Phos for almost a year and positive AMA. I had my first elastograph ultrasound in November 2018 after I refused a liver biopsy (sample from 1 spot, not as wide a look at the liver, etc). The kPA value from the elastograph was 1.92. The impression was: "Elastography values compatible with a moderate risk of having clinically significant fibrosis. Values correspond to state F2 or F2 fibrosis." I'm taking the correct dose of Urso since November.
My question is: Are there standards for kPA values that can stage the fibrosis? I read a research article that gave much higher levels. "Diagnostic thresholds of liver stiffness in discriminating fibrosis stages ≥ F1, ≥ F2, ≥ F3, and =F4 were 7.1, 8.8, 10.7, and 16.9 kPa, respectively."
So does anyone have numbers for their kPA from elastograph, and does it sound like my Medical Center used the wrong scale? I'm considering transferring my care to a hepatologist and this uncertainty is one reason for that.
Thanks to all of you for the learning and support from this site. I don't know where I'd be emotionally without all of you who are also on this journey.
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lilygrower
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I don’t know too much about how the scan works. I’ve had 3 already and they changed drastically from first one being 0.1. Second 12.2. Then last one 5.98.
But scan is always better than the biopsy for sure.
Not sure what to tell u about that but I’m sure there are more informed people on here
I was diagnosed several years ago also from high enzyme levels then tested and showed positive for AMA
I also Take ursodiol once a day 1000 mg.
But just yesterday my neice does a lot of research has told me it can cause cancer.
Asked if I would try something more natural.
She is looking into it as I type this.
Not sure if I’m gone off topic I tend to type as I think of things popping into my head. Lol
There are very informative people on this site I’m sure will give you more information 😊
Very interesting how your ultrasound results have changed over time.
As I understand ursodiol, it is a naturally occurring substance that is one of the bile acids. It could be that your third scan got better due to your taking urso.
I take 500 mg twice daily and I've read taking it in divided doses 2 or 3 times per day rather than once per day helps it work better. But that would be a question for your Doctor.
This has been a mystery to me as well. I had a Ultrasound liver elastography done in Sept 2018 with the results of "median shear wave velocity measurement of 1.37 m/s indicating moderate risk of clinically significant fibrosis (METAVIR Stage F2 and some F3). This shear wave correlates with a Young Modulus of 5.6 kPa".The report also indicated this was based on The Consensus Report of the SRU (Society of Radiologist in Ultrasound) and they did provide a scale (but it's in m/s and not kPa)..it's so confusing! I can send it to you if you are interested😊AND I'll just throw in that I also refused a biopsy and I have since had an MRE with totally different results (for the better!) so I'm just as puzzled as you are with staging. Sometimes I wonder if the radiologists are even familiar with the scales and if they are reading these test results correctly..let's hope they are! I've heard there are several scales out there so it seems there is not a consensus on which to use🤦🏻♀️. I was just advised to just focus on my labs and symptoms since the treatment is the same regardless. I'm also taking 900 mg of Urso/day. But I'm like you and want to know the details. Let me know if you get further clarification and I'll be asking even more questions at my next appointment. Best wishes💕
Healthychik could you post the scale for the ML’s measurement that you mention. I would be interested in having a look at it, my next appointment is due and it may throw up some additional questions. you also had the sheerwave 1.37MLS which correlated with 5.6kpa. Was there somewhere you found to equate it? Or did your doctors. Mine wouldn’t when I asked.
The correlation of 1.37 m/s to kPas was detailed in the results report from the hospital where I had it done. From what I've read, there seems to frequently be conversions to kPa depending on the test you have and how it's measured. For example, I don't think a fibroscan is done in the same measurement as a MRE. Also some scales seem to be disease specific, but I could be wrong. Definitely a question for your doc to answer. I don't have the report with me at the moment but when I get home I'll send you the scale I have.
Here is an article on MRE but it has a lengthy section on liver stiffness/fibrosis and staging. It was published in 2014 so I'm not sure this is the latest info but it's the most recent I could find
Machines differ, fibroscan, sheerwave elastography , MRE... I think most of us are familiar with the fibroscan and the KPA measurement and are expecting to look at the chart and hopefully be reassured. But I had a sheerwave elastograpy that measures in ML/s and is nothing like the KPA. There may even be models of these machines that differ to those readings it’s purely the unit of measure. Trying to cross reference one against the other is not exact and was not reccomended when I asked that question at my appointment.
What was important was the whole picture, we had a baseline number, to go with the other test results and it was agreed in my case that equated to F1.
I totally agree with getting a baseline and sticking with that test. It's hard and nearly impossible, in my opinion, to adequately compare two different procedures. Although, I think doctor's try to do it, no one has ever explained it well to me
My hepatologist ordered my first elastograph I’ll get soon, my enzymes have been high since I was diagnosed 20 years ago. I believe she’s looking for fibrosis. She also prescribed fenofibrate for a 6 month trial to see if my enzymes go down. Yes have a hepatologist get in on or lead your team. I have a urologist too for chronic UTIs since college days. Iris are highly correlated with PBC. I got UTIs whenever I had sex, especially if I hadn’t drank 64 oz in a day. My urologist prescribed methanamine which worked in acute uti incidents. Since I now drink 64 Oz water at least every other day and take cranberry pills and low dose vit c, I don’t get UTIs anymore. I also have pancreatic and spleen cysts and kidney stones. Trying to figure out what to do for that since doc doesn’t have any ideas right now. A Chinese doc prescribed Chinese yam powder which allowed me to pass kidney stones without pain.
In any case, get a team of specialists together, get an online communication system going between them. Mypennmedicine allows this communication. Ask for it. And get a team of specialists together. Hematologist who specializes in PBC is important. I just read on this blog that someone’s niece told her Ursodoil causes cancer. I asked for the research and am waiting for a response. Ooo goodie, now we’ve got to get an onocologist on board? Oh boy!
Keep posting what you learn about PBC, no one is more interested than us!
I did a bit of research and pulled these from recent scholarly articles (NCBI).)
If your ultrasound elastography was MRE (Magnetic Resonance Elastography), these are the cutoffs for fibrosis degree:
Any fibrosis (stage 1) 3.45
Significant fibrosis (stage 2) 3.66
Advanced fibrosis (stage 3) 4.11
Cirrhosis (stage 4) 4.71
If it was ARFI (Acoustic Radiation Force Impulse), they're as follows:
F0 to F1, less than 1.43 m/s
F2 to F3, greater than or equal to 1.43 m/s
F3, greater than or equal to 1.73 m/s
F4, greater than or equal to 2.05 m/s
If SWE (shear wave elastography):
> F2 - 7.29
> F3 - 8.90
F4 - 9.59
As HealthyChik stated above, there are disease-specific variations for some/all, but this is at least a benchmark for the various scans other than FibroScan. I hope it's helpful.
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