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 🙄.
biopsy said early stage, elastography says ... - PBC Foundation
biopsy said early stage, elastography says stage four which is cirrhosis?
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Aussielouise
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I always thought biopsy was gold standard thats confusing and your bloods are okay
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!
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.
Thank you
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 stiffness 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 yrs 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 ❤
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
See my new post. All My Ultrasounds were wrong. I am in fibrosis. Elastography is 95% accurate. ❤diagnosticimaging.com/elast...
Thanks for letting me know. I’m not sure they have mri elastography in Australia 😬 but I’m going to ask!
And if they do, make sure your Ferritin level (iron in your liver) is normal. As I am reading, this can skew results.
So that is possibly good news for you since your ferritin is high, you might be less advanced in the fibrosis than indicated. Hope your hepatologist can sort it out for you.
I love the way you think!! ❤❤ lol I was thinking the opposite. I choose your way!!
I didn’t think your way because think about this...too much ferritin means your liver is absorbing more iron than it should, causing the liver to be less smooth, falsely indicative of fibrosis. That makes sense to me vs the the other way around. So possibly good news for you! 🤗
Here's what it said.... Tell me what you think. It has to do with identifying colors.
...... There is a challenge, however, to using the technology, Dr. Hausmann said.
“Providers must have a robust, high-quality, and stable system to use these sensitive contrast sequences,” he said. “You need a stable, high-quality electronic system and additional small, MR compatible acoustic devices.”
You could also encounter difficulty if you’re imaging a patient with liver disease due to iron overload, Ehman said. The high iron levels black out the MR image. However, new technology is under development to eliminate that problem.
Did someone review your MRE results with you? From reading the excerpt, sounds like if there were an issue with ferritin interference then the scan would show blacked out parts, rendering the scan not usable or accurate. If the doctor did not tell you this about the scan then it may be that your ferritin levels did not interfere with the scanning process.
My PA is unreliable about a lot. All she said was not to worry about it. She didn't even know what an MRE was. I tried to contact the technician who read the scan... He said I need to talk to my doctor. No information from him. Soooooo, I'll be having another in 6 months anyway. Hopefully I can get this ferritin under control and find out what's causing it. Right now I'm waiting to get an appt. with my hepatologist.
Yes...don’t even bother with the PA, not worth your time. Get the doctor to speak to you. Technicians are not equipped to speak to you on results anyway. They just do the scan & make sure the views are done properly. The doctor reviews & interprets.
You got the insurance to cover this since this technology is not available in your state & is medically necessary to manage your condition? I think you mentioned that your insurance will cover either your hep visit or something.
No, we had to pay out of pocket. Our insurance states MRE is experimental. But, we got the Research Medical Center where we had the scan down from $2,630 to $300!! My GI AND my hepatologist didnt know anything about MRE. They are old school. Biopsies and Ultrasound to diagnose and monitor.
Good for you! I am glad you persisted!!! I can’t believe that your hepatologist does not know about MRE??? Though it might not be necessary in all patients depending on individual circumstances, hepatologists should be aware of new developments in their specialties. I am just speechless...
Yep, that's what I'm dealing with. I had to fight to get them to refer me to have the MRE. Then I had to search for a hospital that had it. NOW, "I" have to explain to them about this ferritin issue and how it may have skewed results when all along they didn't care much about me even having the MRE. It's a battle. My worry of course, is that my fibrosis could be worse than MRE read.
I don’t think from what you posted;it appears that if the ferritin interfered with it you won’t be able to interpret the results because of blacked out parts. I think it is more challenging due to where you live to find doctors who are 100% on board. In NYC, these hospitals compete for patients so easier to find doctors to work with. They send surveys after each visit so you can give feedback.
Awe..... Kansas. Most times its gorgeous. But in my opinion, definitely behind the medical curve. I'm a California girl. Born and raised. Married a Cowboy/Farmer who was born and raised here. ❤
Maybe you might consider moving back to California & switching to ranching instead. 🤗 I was in Southern California this Summer. San Diego is one of the cities that I wouldn’t mind living in. Beautiful weather & landscape.
I'm from Santa Clara. Central CA. My parents house is 25 min. from the beach. Sure miss the Santa Clara Valley. AND Stanford Medical Hospital!!
I will have to wait until my ferritin goes down before I can push for another referral to have another MRE.
Keep at it!!! Sorry you have to fight them to get what you need, but I know you have it in you, California Girl!
Fibroscans are used now in ireland instead of biopsies hepatologists reckon they are accurate
😬
Have both. The biopsy AND the Fibroscan/elastography. Better to see the whole picture. ❤
• in reply toKtltel
Did you have a fibroscan
Ktltel• in reply to
Mine is scheduled for end of April. I see my hepatologist at the same time. ❤
• in reply toKtltel
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.
Ktltel• in reply to
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. ❤
What is your hepatologist saying they generally know
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.
Hepatologist said biopsy trumps fibroscan.
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.
My hepatologist took five samples from different parts of the liver. He is super confident in the results from the biopsy.
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.
I’m sorry you had that experience. I hope you know something definitive soon. Do you have acid reflux?
Yes why?
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"
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 ?
• in reply toAussielouise
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
Aussielouise• in reply to
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.
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
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!
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
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 !
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
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
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.
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
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!
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!
Fibroscan was the first developed. But I too have questions about elastography that I will ask my dr in June.
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
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. 😊
Please let me know what you find out
Sure will🤗
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/...
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.
So my score was 22.7 which equals F4 so that should be accurate?
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.
I’ll pm you
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