Hi
I’ve was diagnosed ( by a liver biopsy)
with pbc in 2008. I am on urso . Ive heard about fibroscan and am keen to have a second opinion using the scan as the other day my new doctor wondered at the diagnosis as my bloods are good!!. I explained it was by a biopsy but she has put the thought there . What do you guys think??
Hi there,
Was thinking hasn't your doctor seen your biopsy report. Also a fibroscan would be a good idea as it can tell you if you are in early stages or not. Next time you see the doctor ask for a copy of your biopsy. I have had a few fibroscans now and they put me at stage 3. Your bloods being good just shows that your uso is working for you.
kimphoebe...I was reading your post regarding fibroscan & stage. I’m assuming most of us are learning that fibroscan does not stage our PBC, only the degree of stiffness. I, like yourself, have been told I’m now early stage 3 fibrosis according to last fibroscan. Having said that, my labs have been perfectly normal for quite some time. I was in disbelief although I had already learned on another support group that even when labs are normal, we can still progress. It is a big let down when we take these drugs & do our best to keep our liver healthy as possible. So now, I am to see a hepatologist hopefully soon, & hear what he has to say. My direct bilirubin is very good & that’s the test that tells how well our liver is functioning. I don’t have much if any faith in fibroscan as it is known they are not accurate even in staging stiffness. 😊
Thanks it helps
Hi gwillistexas
I'm not really sure weather to trust fibroscan or not, mine have been fluctuating between 10 kpa and 16. But between certain scores it means the same. That's what the nurse said that done one once but I've been having mine in different hospitals and the score varies. At the moment my bloods are all in range as I am on a clinical trial. That being said the professor said they still can not be sure the disease is not progressing. Very frustrating.
So I'm back to appointments every 3 months now and will be having another fibroscan in the new year.
kimphoebe...G’morning! I agree with you. After last fibroscan my dr says sometimes a questionable score could be due to technician error. I’m not sure I buy that. I watched a YouTube video on fibroscan not long ago (thought I saved it but can’t find it now). It said it can be done by any dr or nurse because it is so simple. The machine tells them if something isn’t lined up correctly & so it leaves little room for error. Blame technicians when it’s probably just the scan itself that’s inaccurate. Im thin so there’s nothing in the way. I don’t know. My dr said my next scan might better. We don’t always know what to do or what to believe. I don’t feel any of us should have testing that has been proven to be inaccurate & leaves us in a state of concern & doubt. We don’t need those worries stacked on top of everything else. Hopefully things look up for us in the near future & we can be a little more at ease. Have a nice day😊
Good morning or afternoon now for me. I'm thin to so they say it should be more accurate then. The last one I had the nurse took ages and asked did they have trouble finding my liver before. I said no always spot on ten shots and done so she didn't fill me full of confidence. So be glad to have another one in new year. I'm not sure what to believe sometimes.
kimphoebe, isn’t it funny how the technician can send questionable vibes. The first technician appeared very confident in what she was doing. She also had me stretched so far I was actually in a bind, lol! The second technician questioned the fact I only fasted 3 hrs. I had my confirmation lattervin my purse thank goodness. I pulled it out & said “here...read it” 😡. She hee hawed around a minute looking through other papers. I told her if she thought that not correct then don’t do scan. She said “If that’s what hospital you to do, okay”. She didnt have me stretch as far as first technician. Anyway, I told my dr about her comments & that I had no confidence in her.
It is funny mine never even
Asked me if I was fasted but my score always is between 10 and 16 kpa. I'm looking forward to the next one in theory it should be less as my bloods have been normal
For a while now.
I hope yours will be better. Like I said, I was shocked my score increased considering my labs had been perfectly normal for several months. Let us know. 🤗
Yes I will let you know. Hopefully want have the same nurse 🤦♀️
😆. Sounds good!👍
Boneytoys,
I'd say that if you have stage 3/4 fibrosis, from fibroscan, then this would show up on an ultrasound/ CT or MRI scan. If you want to determine the extent of damage to your liver then these scans can do that. If no fibrosis is seem on these scans, and your bloods are within range then any increased stiffness shown on fibroscan could be down to what you have eaten ( a Dr told me a heavy carb meal can warp results???). However, US isn't as accurate when seeing early changes.
Have you had any other scans that have shown advanced damage??
As I mentioned in other fibroscan related posts, my hepatologist never even thought of doing a fibroscan until I asked him about it. I was only doing sonograms every few years. I only learned about fibroscans from this pbc site. Anyway, it turned out that he had a machine right in the office so he had the technician do one for me right away. The first technician seemed inexperienced as she could not get the machine to “see” the liver. She asked another technician to do it & he didn’t fumble like she did. Hepatologist was very accomodating, he even went over the fibroscan results with me after the technician was done with it.
😊
I think your liver biopsy would give your diagnosis, unless that was questionable at the time. The use of fibroscan, sheerwave or the newer MR elasography will measure the stiffness of the liver, each type of scan has its limitations but are a good indicator for your clinician.
I had a sheerwave that gave me a liver stiffness measure, that my doctor then translated to the F0-F1 range. Which means normal to mild fibrosis, not a stage of pbc. However you’d think that the liver stiffness would in some respects meet the stage of pbc. However If you read the explanation on staging the PBC Foundation frequently asked questions page, you’ll see that stages of pbc seem hardly relevant.
I think having a baseline scan does help your doctors monitor you and glad I had mine done, it will be repeated in 3 years. I was diagnosed without biopsy in 2009. I had raised LFT’s and AMA-m2 antibodies, biopsy wasn’t necessary to make the diagnosis so I declined having one. Hope it helps.
It’s has x
So is MR elastography another method for measuring liver stiffness as opposed to fibroscan? Is it more accurate?
Yes. MRE measures 1/100th of liver. I believe that is correct. Much more accurate than fibroscan.
Thanks
Hi Candy12. I was just wondering , what was your fibro result? Mine was 9.6, but my consultant didn't translate that into anything,... like yours,.. F0-F1, and she didn't give it a "stage" either.
I wonder why not. I have heard that different countries and different hospitals even, classify the fibroscan results differently, and so they don't necessarily correspond to each other. I'm in the UK.
Hello, Elianan
Your right to say that different hospitals classify things differently, but a lot depends on the make of machine they use, and what measurement they use some measure in KPA’s others in MLS, and my doctor said it’s difficult to cross reference from one to the other.
I had a sheerwave elasography not a fibroscan and the make of machine used in this instance measured in MLS, not KPS’s. (although some do) My result was 1.0, If you looked on the fibroscan score card there is no, 1.0, because the fibroscan seems to be based on KPA’ measurements.
But in my case the doctor translated my liver stiffness to be in the F0-F1 range which is normal to mild fibrosis. But again that score is only relevant to the machine used other machines may have different cut of values or even use the KPA measurement. I think what is important is having the baseline to monitor you from, in with all your other test results.
I had a fibroscan earlier this year. The difference between a biopsy and a fibroscan, as i understand it, is that the biopsy is "site specific",..(ie, where it was taken from) and so doesn't give a clear picture of the entire liver. The fibroscan on the other hand gives a picture of the whole liver. Blood results can still look "reasonable" with advanced stages of PBC, but it's still a big positive when they're good.
Hope this helps.
Morning everyone...and early Thanksgiving wishes to all those who celebrate the day!
Boy, we certainly get lots of mixed messages and misinformation from different tests and doc's too. My LF's are always really high, never come down, yer AMA negative and fibroscan show no fatty liver and normal readings. So, i too questioned if i really have PBC or not. Biopsy rule out determined, yes PBC. Hep. says COULD be AMA NEGATIVE PBC. GO FIGURE!! Bottom line is that for today, I feel good. I'm sure it's frightening when given results from a scan that are high....with my lab history, and the amount of years since diagnosis, the doctor thought for sure I'd have some fibrosis, but I don't. I pray your diagnosis was a mistake and that you are truly without this auto immune nightmare. Be well
mrspeffer...Happy Thanksgiving to you & Brooks! ☺️🦃🦃🦃🙋♀️
And a great celebration too you!
Thank You!
Fibroscan
Worried about fibroscan
