Well last jan I had a elastgraphy at a private clinic for PBC . exam score was 22.7 kp with is equal to F4. Ultrasound technician said my liver was very patchy and I had cirrhosis. I also had an ultrasound of my liver.
My Hepatologist said he didn’t believe the results and booked me for a fibroscan at the local public hospital. Well finally had scan this morning. First nurse wasn’t happy that the score she was getting was reliable as she was having trouble getting scores, second nurse couldn’t get any scores, I was told to wait back in the waiting room and a third nurse came and took me in. She managed to get a score she was happy with of 4.2kp! She managed to find a spot and took 10 readings one after the other in the same spot. Which I thought was a bit strange?
So I know my Hepatologist will be happy and want to accept the latest score but really I didn’t feel very confident that they knew what they were doing lol.
My question is has anyone else had a similar experience where they got a really bad score and then a normal score like this?
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Aussielouise
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I think that how accurate the test is also depends on how experienced the person doing the test is. From what you described, not sure if they were able to get a good reading for you.
Hi, I am new to all this and I'm just wondering how the blood work will show the state of your liver? Can you tell me which bloods would show how bad my liver would be? I was just diagnosed with PBC. I had a positive AMA M2. But AMA titre was negitive. All other blood was fine except slightly elevated LFT.
I had the elastograpy but wasn't given any numbers and the techs never tell me anything. I don't know the difference from that and a fibroscan either. I had ultrasounds every 6 months before going to hepatologist & I had MRI'S. Lesions have been seen on my liver so CT scan with & w/out contrast was done. He seen them on my spleen but not my liver. Told results on the tests show, I'm at a stage 3 but all my blood work is normal.... I will never understand this.
there isn’t actually a huge difference between the two technologies. Fibroscan has been used for longer. Where I live elastography is more available in the private clinics and none have fibroscan that’s why I had to go to the public system for fibroscan. My hepatologist thought fibroscan were more reliable as they were ‘more established ‘ but I’ve read plenty online that they are comparable and some studies say one is more reliable than the other and then others say the other is more reliable, so who knows.
But my experience goes to show that neither is totally reliable surely? What would have happened if I’d just gone off the first results and my hepatologist had just accepted that I had cirrhosis? Wonder how many people out there that if they just had another scan would get a different result ? Also suppose the first scan is correct and the second wrong? Lol drive you crazy.
I agree it’s hard to understand this condition especially when tests seem to contradict each other. Hope you stay well.
I see later on that you have. I had a fibroscan recently that was completely normal although my bloods are always slightly abnormal. Lots of ultra sounds and mri’s haven’t shown anything out of the ordinary. Was diagnosed 2012, had a biopsy then. At that point I was very sick with jaundice and steroids worked to fix the inflammation that time. They don’t think the jaundice was connected to the PBC so thought AH overlap. Now they are not so sure. I’m an anomaly apparently!! Aren’t we all??
My Hepatologist said the same to me yesterday! In fairness to him he is checking my bloods and seeing me every 3 monthsa at least. I’ve had problems with my liver on and off for years because of the Sphincter of oddi dysfunction. I had to have another ercp last year to remove stones from bile duct. I was really sick before that.
Hi there, i had a fibroscan done and it came back 0 to1. Didnt understand, because the had said previously i was in stage 2. This whole disease boggles my brain. I have eposoide of really hurting and knocks me down. Usually last 3 days. Now im on my 6th day and still feel horrible. Called my dr and took some labs work done. This desease is no joke.
I largely agree with Ballymahon. While fibroscans (done well and interpreted properly) can be an added diagnostic feature, in the UK the first line of diagnosis is blood tests, often over a period of time, say 6 months to be sure they are consistent. Have you had these done? If so you should have been told the results - should have been able to ask for a copy - and had them fully explained to you
In the UK there are 3 steps to the official/formal diagnosis of PBC - as recently laid down in a formal published document that outlines the diagnostic steps to be followed by all liver/PBC specialists in the UK (NB The acceptance/use of these specific Diagnostic Criteria was also recently accepted by all of Europe).
Basically, for a formal diagnosis of PBC, 2 out of 3 separate tests have to clearly indicate PBC. So:
1 - abnormal levels of liver function (blood) tests (lfts) that are indicative of PBC. And/or:
2 - the presence of the autoimmune antibody AMA (usually AMA-M2). And/or:
3 - a biopsy that shows damage/scarring to the microscopic 'biliary tubules of the liver, that is typical of PBC. [NB this latter test is often replaced, particularly outside the UK, by the fibroscan, which is less invasive]
Symptoms of PBC: fatigue, muscle and joint ache, yellowing of skin and eyes, etc. are a helpful guide but are not enough for a diagnosis, and are also typical of other liver and/or autoimmune conditions. So lots of tests, over a period of time, should be done for other liver and autoimmune conditions.
You don't really mention the first two blood tests, above. They are usually the main route for a diagnosis of PBC. If these tests were normal I would be surprised if it were PBC, although there is obviously something going on with your liver, that needs to be checked out. I would ask to see a senior hepatologist, preferably someone who is a PBC specialist.
People can have AMAs, but have normal tests, and after exhaustive checks many of these people (like myself) are deemed not to have PBC - although annual lfts are needed for the rest of life. Meanwhile, some people have blood results that indicate PBC, but they do not have AMAs: these are the people who usually have a liver biopsy.
I suggest you try to get copies of all your results, and then try to understand them by following all the info on the 'PBC Foundation' website (the 'PBC F' host this site on Health Unlocked'). Go to the 'PBC F' website by following the links at the top of the page, or google 'PBC Foundation'. Their advisors are lovely and there is masses of info on the site - more if you join (it's free). Sadly PBC (and other autoimmune conditions), is one of those illnesses where we have to become out own best experts.
Take care, but also try to have fun, enjoy yourself and look after yourself. Stress is the worst thing for all autoimmune conditions, so spoil yourself.
I had pbc confirmed by biopsy early 2017 bloods have all returned to normal since I’ve been on urso. But you can still have cirrhosis even with normal lfts. My confusion isn’t about pbc as im a radiographer and have a fairly good understanding of medical procedures etc. but I’m a little upset that I’ve had too comparable tests, elastography and fibroscan which are both supposed to be fairly reliable but I have had wildly different results. There’s a huge diffence between 4.2 and 22.7. Plus both operators are convinced that they are correct. I’m also under a Hepatologist, but I’ve been under a previous specialist for many years who diagnosed chronic pancreatitis secondary to SOD yet missed the pbc I even had surgery for pancreatitis but I’ve now been told I never actually had pancreatitis!
I’m so glad I actually had a biopsy to confirm pbc.
Okay, good. Oh dear, I appear to have been trying to "teach you how to 'suck eggs' " as the old saying goes. However, your previous history was not apparent from your post (above); also: it's just possible to remember everything about the past history of all the many people who post on here. Sorry for wasting your time.
I know you can have cirrhosis with normal lfts, but - again - I didn't know your previous history. Meanwhile, in the UK biopsies are used in preference to fibroscans etc. ( in fact, biopsies stressed in the recent EaSL diagnostic directive) so I know much less about fibroscans.
Hope you get some answers soon.
Maybe take action against the false pancreatitis diagnosis??
So saw Hepatologist yesterday and fibroscan score was 4.1 a lot different from elastography score in January which was 22.7. Specialist is happy that 4.1 is closer to biopsy results so my advice if you get a surprise high score is to get it double checked by a repeat scan. If Hepatologist had excepted first scan I’d have cirrhosis, now it’s back to early stage pbc. (Just hope it is the second scan that’s correct, not the first one 😆)
I don’t all of them were done at different hospitals and each one said they were correct. Still waiting on app with gastro as last one cancelled in jan. The lady who does my ultrasound scans every 6 months says I deffo have cirrhosis.
I know bad isn’t it, some days I don’t see the point in going on, some days I don’t care cause the Sertraline is working lol. I haven’t got a liver specialist just gastro at mo. My ukeld score is 48 but bloods are just above normal have varices and splenic varices. I just keep on going praying for a cure
Now im freaking out. Doesnt seem like the fibro scans cannot be trusted. They are so expensive, why would drs even order them much less repeat them. Some people as my self has rotten insurance.
That’s great for you. But you see, not everyone has access to MRE so we have fibroscan. Fibroscan May be useless to your dr but many of our drs do not feel that way.
I suppose if that is all they have access to, then it is understandable. However, the original poster named Aussielouise seems to have had access to both, so I framed my response in that way.
I’m sure if we all had a choice we would choose MRE. But that’s a broad statement for a dr to make. If fibroscan were deemed useless, I don’t think drs would still have access to them. Each of us have to work with & accept what we have.
Ok, I’m not sure why you’re argumentative with me on the matter, however I’m explaining what was conveyed to me, you can disregard it, if you feel it’s not right in some way. Louise seems to be looking for data to compare the two testing devices to decipher the accuracy of results.
My doctor explained that it is not an accurate testing instrument and that it does not give as much info, therefore rendering it moot. It is not my opinion, it is his. I don’t have an opinion either way.
This is not a referendum on anyone else’s health care plan, it’s a point of information only from one man’s perspective. Have a good day.
I understand your point. No argument intended, but when a bold statement is made you might expect other opinions. As far as accuracy, fibroscan is said to give more overall info than biopsy. But again, that is my drs opinion. 🤗
I think we would find a number of different answers from all our different drs and specialist, all of them are supposed to be the best. There is loads of different opinions, many different from each other. I’ve seen written many times that biopsy is the ‘gold’ standard for pbc and then equally eminent specialists say something else. Even with the new European standards there have been some arguments. I was told biopsy was best to diagnose, but fibroscan was good to stage. Fibroscan can’t actually diagnose pbc on it’s own anyway as it measures density, it’s great for fibrosis and cirrhosis but can’t distinguish the cause of such, but along with blood results it’s pretty reasonable to diagnose pbc without biopsy.
What still confuses me is how can fibroscan or elastography be reliable if I can get two such a posing results? I actually don’t think now I’d trust either. I’m really glad I had a biopsy. It hurt like hell and I wasn’t good for a week afterwards but at least I’m sure it’s pbc because of it.
Unfortunately my case wasn’t straight forward as I also have other conditions with have also affected my Lfts that’s why I had to have a biopsy.
Only a biopsy can give a definite diagnosis, but because pbc is a ‘patchy’ disease , the biopsy might have only taken a sample from a good bit of liver whereas the fibroscan is supposed to give an average reading of the fibrosis state of the liver and so can be sometimes better to stage the disease. One of the main reasons fibroscan is used is not because it’s better. But because along with blood tests it’s been shown to be almost as reliable and less invasive and cheaper than biopsy.
I think we would probably all find less cause to disagree with each other if our specialists could at least agree! Honestly who knows who’s right? We only know what we’ve been told.
It’s good to share our experiences here as we at the ‘coal face ‘ at least can compare notes and support each other.
I agree. Some of us know who Dr Robert Gish is from his presentations at the PBC Roundtable discussions. He himself says biopsy is no longer the gold standard. He is a renowned hepatologist & I place an abundance of trust In his knowledge. 😊
I had a fibroscan 3 years ago - 10 then 2 years ago - also just over 10. Yesterday was tested - result 22. I said "this is big increase from 10". Technician said "well the scale goes to 75" as if 22 is no big deal. On reflection I think that this was not a good comment as 22 is f4. I'm worried but am thinking that I feel the same the day after as the day before - yes tired easily and so on . As the technician knew the result was a big increase on reflection I feel that she should have said "let's have another go". Where do I go from here? Surely the fibroscan is reliable and unlike US produces a number and I am not fat so the probe works easily for me. Is there an expert out there who can give guidance? - I don't want wishful thinking but straight talk.
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