Hi, I'm new here and this is my first post. I wish I'd found this site and forum years ago!
I was diagnosed with PBC eight years ago and have been taking Ursodiol ever since. A Fibroscan showed cirrhosis at that time with a reading of 35 kPa. I had scans every two years since then until my last reading in 2018 when my reading was down to 10.5 (which apparently is right on the border of stage 2 and stage 3 fibrosis, to my understanding). My liver enzymes returned to normal within about a year and last time I saw my gastroenterologist three years ago he commented that my twice yearly bloodwork looks completely normal, as if I don't have any disease at all.
I have had ultrasounds twice a year since 2013 (except for last year due to Covid). I never heard about the results so I assumed that the ultrasound results matched the Fibroscan results. However I recently got a new doctor and he phoned me with the ultrasound results...he told he I have cirrhosis. In a bit of a panic, I called my gastroenterologist to ask why my ultrasound shows cirrhosis and the last Fibroscan I had shows stage 2-3 fibrosis. Which is correct? He told me that the Fibroscan is more accurate but I just can't get over the ultrasounds showing that I have cirrhosis (and have apparently they've showed this all along). I also have two small benign cysts on my liver.
Of course I've been researching like crazy ever since because the whole thing seems odd to me. Stage 2 fibrosis is a long way off from cirrhosis! I've read that Fibroscans show liver stiffness, but can they detect structural damage to the liver? I'm just confused about what stage I'm at. Are Fibroscans more accurate than ultrasounds, or do they just show different things? I'd love some feedback. Thank you!
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islandanonymous
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Your question of which imaging test is more accurate may confuse some regulars here who think every test is infallible.
That said, since you're interested, check the following article which looks at various imaging tests' ability to spot cirrhosis. Also, if you had cirrhosis in the past, you almost certainly still do--shouldn't be a surprise if your docs keep you informed. Cirrhosis reverses only in very rare cases.
Thanks for your reply. Like I said, I WAS surprised because for 8 years I have only heard about my Fibroscan results, which got better and better over the years and at last report said that I am between stage 2 and stage 3 fibrosis. My gastroenterologist was surprised as well. And since my bloodwork had steadily improved (and my fatigue has lessened to a great degree), of course I assumed that I was getting better.
Fibroscan and ultrasound do different jobs, obviously Fibroscan only takes 10 readings across the liver with an average score taken to determine kPa (liver density score) - I am only surmising that the probe by taking only 10 readings may actually miss the scarred areas. Only recently did a Fibroscan score chart come out that actually had PBC listed and i've attached it.
Ultrasound gives an image of the liver and I guess if all your U/S scans have shown cirrhosis over the years then they are likely to be correct. It's a great pity you haven't been receiving copies of your scan reports right from the off because they generally detail all findings.
Certainly in my hubbies case his cirrhosis has always been obvious on ultrasounds (we get copies of all scan reports) - he's never had a fibroscan because his liver doctor says it adds nothing to the diagnosis when you already know a patient has cirrhosis.
Your bloods being normal is good, because it evidently shows that even if you have cirrhosis your liver is well compensated. Having good bloods doesn't rule out liver disease but does reveal no ongoing inflammation or signs of the liver struggling.
If your gastroenterologist is struggling to explain your liver condition I would ask for a referral to an actual liver specialist (hepatologist) who will be more qualified to provide appropriate care than your gastro.
Katie
Fibroscan score chart which includes bars for auto immune liver disease and PBC.
Thank you, Katie. I actually saw that chart for the first time on the site when I joined a couple of days ago. Very interesting. Yes, I was considering trying to find a hepatologist, especially after reading some responses to questions here. Also, I moved a couple of years ago so there may be someone who is more local than the gastroenterologist.
Katie, I just wanted to add that I have looked online and apparently there isn't a single hepatologist in my province even! (I'm in Canada.) So I guess I'm out of luck as far as that goes.
Hmmm it seems there is a hepatologist training programne run by the University of Britsh Columbia. which is on going at The Vancouver General Hospital. Have you contacted that hospital? They may be able to help you? Good luck to you .
I'll give them a call, thanks. I don't expect it to do any good...things are pretty messed up without medical system now. My gastroenterologist isn't even seeing people due to Covid. I haven't seen him in three years and will be going into Vancouver for a Fibroscan only. It's very frustrating.
Just updating...I had another Fibroscan in September and unfortunately my score is higher now, 15.9 kPa. For the first time the GE also told me I also have fatty liver (or maybe it's NASH because I also have cirrhosis?) with a CAP score of 291. However my blood tests are still normal.
We're very close, aren't we? I just described a little more of my history in my other post about lipomas. I was drinking about a glass of wine most days which may have added to my other problems, I guess. I'm reassured that my bloodwork has been normal for many years though. I'm able to get a lot of exercise (just added doing high intensity interval training as well as daily brisk walks and doing weights at home every other day). I was doing yoga almost daily in a studio until covid hit. I cut out the sugar which really the only change I made with my diet since it's always been pretty good aside from that.
Good luck with everything! Let us know how it goes. I feel pretty confident that if I take good care of myself, I'll have plenty of years left.
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High GGT (309), normal ultrasound and fibroscan (3.2kPa), other liver functions normal. Any ideas?
Fibroscan vs Ultrasound
Fibroscan Result - is it accurate?
Ultrasound and repeat fibroscan
Compensated Cirrhosis Fibroscan
