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biopsy said early stage, elastography says stage four which is cirrhosis?

Has anyone else been diagnosed by biopsy as early stage pbc then only a year later had elastography say stage four which is cirrhosis? My bloods are barely out of the normal range but I feel awful most of the time, extremely dry eyes, mouth, bad fatigue and right sided pain and tummy problems.. My gp seems to think elastography must be wrong! He said biopsy is gold standard and also I look good! . See Hepatologist in April 🙄.

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I always thought biopsy was gold standard thats confusing and your bloods are okay

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Liver function tests are not normal but they are only a bit out of the normal range.but I take tamoxifen ( tamoxifen can make liver function result better) as well as urso so maybe that’s why. I had a elastography because biopsy is the gold standard for diagnosis but not for staging. If they biopsy a ‘good’ bit you can get a false stage. Whereas as I understand it, elastography can’t diagnose pbc only stage it. As it can’t differentiate the cause of the fibrosis or cirrhosis. But I’m surprised to be told my score was 22.7kPa which corresponds to cirrhosis and a Metavir. Score of F4 when my biopsy was only early stage. I’m wonder if it before they biopsyed a ‘good’ bit of liver, it’s got much worse in the year or elastography is wrong. Radiology dr said elastography is correct!

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Elastography/fibroscan is getting close to surpassing biopsies because they are a lot more accurate. Most PBC is diagnosed by positive AMA M2, high Alk Phos and/or high bilirubin. Hope all turns out well for you.

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Thank you

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Aussielouise,

Seems we keep having this conversation. It sends me into anxiety immediately. First I'm so sorry to hear this. Take a deep breath and wait to see what your next appt says. But why is it in April??? My nerves couldn't take that wait.

Also, biopsies are no longer the gold standard for a PBC diagnosis. Fibroscan or elastography show the texture of the liver, scarring etc. Ones have been staged more accurately by fibroscan/elastography. I think I have that right.

This worries me too as I was diagnosed and staged by biopsy 1 1/2 ago early stage 1 yet I too have super dry eyes, mouth, nose and URQP, muscle aches and occasional nausea. My Fibroscan isn't scheduled until April. But hearing this scares me once again. 🤤🤤🤤

Please keep us posted. Hoping the best for you and me as well.

Stella ❤

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Thanks for replying. I think what’s bothering me most is knowing which test to believe?!

I think my Hepatology dr only ordered the elastography because I said ‘what if the biopsy got a good bit of liver and was he sure it wasn’t worse considering how I feel in myself, and when we booked my next appt either of us was expecting it to be so different. Still not much point in making an emergency appointment as it probably won’t make much difference, plus maybe I’m just hoping the elastography is wrong 😂

Hoping all the best for you too xx

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Fibroscans are used now in ireland instead of biopsies hepatologists reckon they are accurate

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😬

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Have both. The biopsy AND the Fibroscan/elastography. Better to see the whole picture. ❤

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Did you have a fibroscan

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Mine is scheduled for end of April. I see my hepatologist at the same time. ❤

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Mine is scheduled on the 4th. I have to give blood again tomorrow. I’m terrified. I can’t believe the hell that my family has been putting me through since I got diagnosed. They are barbaric. I had to block them so I can live.

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Jennyhadenough,

I am so sorry. I hope everything goes well. All that stress isn't good. Try to get ready for your appt. De-stress, watch your diet etc. Stay hydrated too. Put "you" first. ❤

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What is your hepatologist saying they generally know

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My fibroscan showed a score of 21 which is cirrhosis. My hepatologist didn’t agree because my levels are good,etc. my biopsy showed stage 2 Fibrosis. So... I don’t have cirrhosis.

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Hepatologist said biopsy trumps fibroscan.

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That’s the trouble even the hepatologists seem to differ on it. Some say biopsy can give false result because pbc doesn’t affect the liver uniformly, you could get a false reading if you biopsy a ‘good’ or particularly ‘bad’ bit. Added to the fact that the biopsy is only a minute sample of liver that’s easy to do. But then others like you say think biopsy is better than fibroscan.

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My hepatologist took five samples from different parts of the liver. He is super confident in the results from the biopsy.

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My dr could only get one sample from mine as it hurt like hell and my blood pressure went crazy. The radiologist doing the biopsy said my liver was very inflamed at the time.

I’m glad it worked out so well for you. At least with five sample you can be confident.

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I’m sorry you had that experience. I hope you know something definitive soon. Do you have acid reflux?

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Yes why?

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Hi Aussie louise

I'm an Aussie too - from Melbourne diagnosed 14 years ago at 38.

Your conflicting results are puzzling I have to say. I have had cirrhosis for over 5 years, confirmed by biopsy, reinforced by yearly fibroscan - 18.6 and also obvious on 6/12 ultrasounds.

You really need clarity around exactly what is going on for you Louise as I'm sure you already know that once cirrhosis is established, the standard of care is 6/12 ultrasounds and you need more careful, frequent monitoring.

Your hepatologist will be the one to shed light on your situation and I agree your symptoms are significant.

Please let us know how you get on and take care from Karaliz " down south"

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Thanks for replying. Wow you were young to be diagnosed at 38. I’m 56 next week. Only found out I had pbc when I was being treated for breast cancer just over a year ago. Told not to worry as it was early stage but had a biopsy because it wasn’t clear cut from bloods etc that it was pbc as I had already got other ongoing biliary issues. My score was 22.7Kp

Hope you’re keeping well ?

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Hi Karen and Aussielouise, another Aussie here.

I agree with Karen re: your symptoms being significant - I changed my GI doctor of 20+ years (I was diagnosed 29 years ago) because he wouldn't listen to me when I kept saying my symptoms had become worse - his response was "nothing had changed because my LFTs were better than they had been since diagnosis".

My 'new' GI sent me for an ultrasound which showed extensive cirrhosis , and a subsequent fibroscan gave a result of 30 - I changed to this new doctor about 5 years ago and since then except for my Albumin, my LFTs have continued to improve, having said that though, my Haematology have been steadily 'going south' over the last year or so.

Are you getting copies of all your Pathology reports? If not, start getting them - I get copies of ALL medical reports - that way If, or when I have to see a new doctor (or go to the hospital) I am able to take my records with me. Mind, when I do this a new doctor may scan the reports, but with hospitals, they like to do their own tests ;-)

So, Aussielouise, which state are you in?

Take care

Di

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Thanks for your reply. I’m in queensland. I saw my gp last night. He’s a lovely doctor and said he’d phoned Hepatologist who told him biopsy was for diagnosis, elastography was for staging and progress report. Gp said he didn’t understand it as he hadn’t come across cirrhosis more than a couple of times and I should talk to Hepatologist. My appointment is when the Hepatologist opens after the commonwealth games. There’s no point in rushing in because things aren’t going to change in six weeks or so. I got copies of my pathology reports last night and bloods look even better than one month ago. Certainly better that when I was diagnosed a year ago. I’d previously been under a GI in Brisbane who had diagnosed chronic pancreatitis secondary to the sphincter of oddi dysfunction which I’d been diagnosed with years before. I remember telling him the pain had changed neice thought something else was going on. I even had surgery to cut the nerves to my pancreas to help with pain relief but it didn’t work. When I got breast cancer I didn’t feel well enough to travel up to brisbane and went to see G I drs who did endoscopic ultrasound. When I woke up from procedure he said your pancreas looks fine but your liver doesn’t! From then on I was referred to Hepatologist.

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Hi Louise - at work so sorry for slow reply.

Yes I suppose 38 is on the young side - the youngest of my 4 children was only 5 and although I'm a nurse I had never come across PBC before.

You have had a huge amount to deal with health wise yourself and you sound very positive which is wonderful.

I am on OCA as part of the long term safety extension arm of the trial but very grateful to be part of the trial as you would know OCA is not commercially available here yet and I stopped responding to Urso.

Fatigue is my constant companion along with other less troublesome symptoms but I still work 3 days a week as a community nurse/case manager and I have a big family who keep me busy so I can't be too bad!

Interestingly I too have had a few bouts of acute pancreatitis which Dr thinks is probably SOD. How often do you suffer with bouts of this pain and how do you manage it Louise?

Take care

Karen

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Hi Karen

I’m a radiographer and I hadn’t come across it before either.

I’ve had SOD for about 20 years now since I had my gall bladder out. I’ve had many ercp including stents, sphincterotomy.

I have almost constant pain which I find quite difficult to manage. Because of SOD I can’t take any morphine or codeine based drugs, and I’m allergic to pethidine and a whole host of other stuff. Basically its gabapentine daily or when I end up in Hospital with it I have fentanyl. Sometimes I just take something to make me sleep if nothing else works

I also use a gtn spray if spasm won’t relax and that works but leaves me with very bad headache. lately it been more right sided liver capsule pain rather than SOD that bothers me though.

Sounds like you have a busy life and have had your share of set backs too. Do they know why you stopped responding to urso?

I read that the side effects of OCA are not nice!

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What an ordeal to suffer pain so intense for such a long time Louise - so limited with pain relief too. How often do you experience these episodes? During one of my 6/12 ultrasounds in 2016 the radiographer saw a tiny stone which led to my GB removal but in fact the surgeon was not convinced by the 1 minuscule stone being the cause of the pancreatitis and thought it more autoimmune in nature....who knows?!

For the first 7 years I partially responded to Urso and was so busy I actually forgot I had PBC half the time. LFTs deteriorated and I felt terrible after about that length of time - biopsy, MRI etc confirmed cirrhosis and I was recruited into the OCA trial.

Consultant feels it has really bought me time as my liver was starting to struggle prior to commencing it - although was on placebo for first year!

I have had zero side effects from OCA and have none from Urso either ( still on it ).

Apparently some people just stop responding to Urso. In hindsight I was probably only a partial responder anyway although at that time was under a Dr far less familiar with PBC than my current one.

Are you still able to work as a radiographer?

Karen

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No I haven’t worked since I had breast cancer Oct 2016. I was really struggling before the cancer diagnosis with abdominal pain and the breast cancer surgery and radiation just made things much work. Radiation just makes all autoimmune problems worse. I knew I had sjorgins for a few years and even that seems to have got worse. The fatigue and pain is so bad now I’ve given up thinking I’m going to be returning soon to work. I also suffer from nerve pain in my breast due to the cancer treatment which just adds to things. I even ended up in hospital last year twice with diverticulitis. It’s seems I just keep getting one thing after another.

The sod is very different to the liver capsule pain sod comes on fairly suddenly and feels like you’re going to explode, the pain is like pressure, spasms and cramps build till you think it can’t get any worse. The pain always feels like it’s circling around my upper abdomen and often pain in my right shoulder I feel sick with it too afterwards when it dies down I just feel wrecked

So what happens now with you? Do you just stay on the urso and OCA ? Seems very few people know much about it here. When I was in hospital last year I heard the nurses talking outside my door about me having cirrhosis like I was a heavy drinker !

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Yes Of course it is impossible to work while dealing with so many serious issues and pain. I have had acute pancreatitis 3 times only but the pain was worse than childbirth so I do understand - dreadful isn't it. I'm awfully sorry you have to cope with that on top of everything else - do you believe removal of your GB caused SOD ?

I have heard that is a major cause.

I am on the OCA until the trial finishes ( we've all lost track of when that is!) plus Urso and 6/12 US, 3/12 bloods, yearly fibroscan and am having a gastrosopy in a few weeks for oesopageal varices screening and just hoping for the best. Dr says my liver won't last forever but on the other hand is surprised I am chugging along relatively well given how extensive the cirrhosis is.

Take care Louise

Karen

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Yes I think having my gall bladder definitely made it worse. As I understand it if you have SOD you’re probably born with it but while you have your gall bladder there’s somewhere for the pressure that builds up due to the sphincters not operating as they should , to go, It acts like Reservoir. Once your gall bladder is removed the pressure stays in your bile duct and back up pressure and or reflux can enter your pancreas causing secondary pancreatitis.. I had pain before the gall bladder was removed but almost as soon as it came out the really back attacks started. I always knew when to expect a bad attack, I would start itching and feeling sick my liver function always went off and bile duct became very dilated .

I wonder if that was the trigger for my pbc?

I’m glad you’re doing so well considering how bad your cirrhosis is. I hope your health continues as well as possible and the OCA is successful for you .

It’s definitely good to be able to chat with another person who understands because they have the same fears and problems.

Take care

Regards Louise

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Hi Aussielouise. I’m in Melbourne and have been for 38 years. I know nothing about stages. Lately my Urso drove me crazy because of itch and other side affects. I believe I was diagnosed in early 2000 but the symptoms there long before that. Anyway just heard from a close relatives that new blood tests are here to replace some of the more invasive tests like bone marrow and biopsy? I hope there is some of those for liver cases. God with you and hope all goes well for all of us.

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Thank you for your reply. I started and stopped urso and then started again because at first it gave me terrible heartburn. I’m much better now. What worries me so much is all the different opinions out there from different specialists. How are we supposed to know what’s what if even the specialists differ? Hope you’ll find some Treatnent that’s suits you much better

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Thanks for your reply. I believe our doctors here downunder don’t listen to us, most of the time they think we’re crazy. It takes a long tome to get a doctor that’s more understanding and listen!

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Update

Hepatologist doesn’t believe elastography results. Thinks they are completely wrong! So now I have to wait to have a fibroscan which he said is a more established test?

Driving me crazy!

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Fibroscan was the first developed. But I too have questions about elastography that I will ask my dr in June.

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Am I ask what’s worrying you about elastography? I’m completely confused. What was the point in me paying private for a scan if it’s not believed? Only good thing is my Hepatologist said he’s monitoring me as if I have cirrhosis anyway

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Oh, no worries about elastography. I think I read from someone’s post a while back, that it might be more in depth than fibroscan. More accurate. I’m due my second fibroscan in September, so when I go to Dr in June I’ll ask his thoughts. 😊

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Please let me know what you find out

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Sure will🤗

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Here is something regarding these tests vs Fibroscan. Believe an accurate assessment cannot be made by this test alone & should be carefully interpreted by your hepatologist along with your blood work.

How does it fit in with other tests for assessment of liver scarring?

More recently other non-invasive tools to assess liver scarring have been developed such as acoustic radiation force impulse (ARFI), real-time elastography (RT-E), magnetic resonance elastography (MRE), and shear wave elastography (SWE).2 These devices also use the physical properties of the liver to infer information about liver scarring. While their use is less widespread than FibroScan®, preliminary data suggests they provide similar information and diagnostic accuracy, with their use dependent upon local availability and expertise.2 Like FibroScan®, these techniques do not attract a Medicare rebate and therefore some centres will charge out-of-pocket expenses.

Aside from these devices that have the ability to assess an intrinsic physical property of the liver, there are a range of serum markers or biomarkers designed to identify patients with advanced fibrosis or cirrhosis. The aspartate aminotransferase/alanine aminotransferase (AST/ALT) ratio or AST to platelet ratio index (APRI) are freely available and can be calculated on routine blood tests. Alternatively commercially available algorithms such as FibroTest (BioPredictive, France) are available, although these are less widely used in Australia. There may be some advantage to using a combination of tests, particularly when a single test alone is inconclusive.2

Source:

racgp.org.au/afp/2013/july/...

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Fibroscan is very accurate for staging of no or minimal fibrosis, and for those with advanced fibrosis or cirrhosis. It is not as accurate for mid-level disease.

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So my score was 22.7 which equals F4 so that should be accurate?

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I sure don’t want to be the one to say, but according to the link I read it could be. What I posted was what it said. I’ll see if I can get the link to you.

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I’ll pm you

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