I will never trust another Ultra Sound. My Dr said it showed a healthy persons liver even thought my fibroscan was 21.3. I have extensive stage 4 cirrhosis with numerous nodules. My portal pressure was 16mm hg. Even though I'm on Nadolol. I'm just sad and disappointed because of the US results.
Transjugular Liver biopsy results - PBC Foundation
Transjugular Liver biopsy results
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42 Replies
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I'm so sorry. What is your next treatment plan? How long have you had Pbc for and is it your only diagnosis
in reply to
I see my Gastro doc the 29th. I have an app on my phone called Myhealth I get all my test results everything sent to me.I was diagnosed in January. Thank you
Try to stay calm - easier said than done, I know, but stress is the worst for most conditions, especially the liver, and especially if it is an autoimmune disease. Now you are on here you will get loads of advice and support (although it can be a bit quiet at weekends!).
Have they said exactly what it is? I'm assuming it's PBC as you're writing here. Did you have lots of blood tests, and have they said what your long term treatment will be? I'm afraid I have not heard of Nadolol, so cannot comment on that.
Ultrasounds are good at ruling out lots of other conditions, but if it is PBC they cannot show the microscopic damage, so it is good that they did the biopsy, otherwise things would have continued to get worse. I know it's hard to see the bright side, but at least now you really do know more about where you are, and treatment can begin. You can do a huge amount to aid the liver's health - particularly the fatty liver - with diet and exercise; while with the optimum drug regimen the advance of the condition can be slowed down. Plus, the liver is an amazing organ, and can regenerate it self a lot, so try to get in the frame of mind of doing all you can to help heal yourself - as well as all that the medics and drugs will do.
If it is PBC, why not talk to the trained advisors at the 'PBC Foundation' - there is a link to their website at the top of this page; there you will find phone and email contact details. They are lovely, knowledgeable and helpful ... and you have always got all of us on here as an added resource - as well as shoulders to cry on when you need it. There is also the 'British Liver Trust' who also have a website here on 'Health Unlocked' just Google them to find a link.
Hope this helps, take care.
I don't know why the ultra sound is used for liver disease. It is useless. I'm sorry RebeGarcia10. What does this mean for your treatment?
How long have you been diagnosed for? Is pbc your only diagnosis
in reply to
I see my gastro doc the 29th. I guess we'll figure it out then. Thank you
Hi! How high are your liver enzymes? They correlate with result of fibroscan, so if they are high your fibroscan would be higher then it should be. My specialist explained to me that when liver enzymes are high, fibroscan can't differentiate what is fibrosis and what is liver inflammation.
Do you have simptoms of portal hypertension? In some diseases, like pbc, the liver demage is not the same in every part of the liver. Liver bioptat represents 1:20 000 of the liver. So don't give up hope.
US doesn't show liver demage, but it can show that you do or don't have fluid (ascites) in your abdomen, or mass in your liver. Dr can see the size of your liver and spleen, your bile ducts and gallblader. So don't be disappointed if every of this things are normal and ok! It is a good US 
I wish you the best!
in reply to Ana1806
Actually now all my enzymes are normal never were really super high. Thats why with blood tests and fibroscan score my Gastro doc decided to do the biopsy. I have grade 1 esophageal varices. They took 3 biopsy 2 to 2 1/2 inches long they said it is extensive pretty much all over.
in reply to Ana1806
Hmmm.....Ana1806, I'm not sure I would agree with your specialist when he told you that the enzyme levels "correlate with result of fibroscan, so if they are high your fibroscan would be higher then it should be" - I'm stage 4 with advanced cirrhosis and my fibroscan (done a couple of years ago) gave a result of 30, yet my enzyme levels were, and still are, near normal.
As far as ultrasounds go, whilst they are not particularly useful to determine cellular damage, as you and others here have stated, they can show cirrhosis. The first indication that I had moved into Stage 4 was when my first ultrasound revealed a lumpy, bumpy outline, instead of a smooth outline, of my liver.
in reply to
I'm stage 4 and mine didn't show anything. I have chronic inflammation of the portal vein also. I'm stumped 😕
Ana1806 in reply to
Sorry, I just wanted to help you. I had liver biopsy twice, first time it showed liver cirrhosis 6/6. Then the same sample was reevaluated in another hospital, and it said 5/6 liver damage.
I had one more liver biopsy second time 2 months ago and the results were fibrosis 2-3/6.
I really wish you the best, and hope you will get better
in reply to Ana1806
Thank you it just helps to know there people like you out there who care 💖💖💖
Ana1806 in reply to
Sorry, english is not my first language so i think i maybe didn't explain it right. In my case, liver biopsy showed liver demage fibrosis 3/6 , but my fibroscan showed it is cirrhosis (I think it was around 16 kPa). My ALT at the time was around 250, and my specialist said that fibroscan may be wrong because the inflammation in my liver was really high and that, in that case, fibroscan can show higher result. So if my enzymes were normal and fibroscan said it was cirrhosis it would be much more reliable.
Q8Cooper in reply to
Hi Dianne,
I am new to this site so I am learning a lot from great people here. First I wanted to say I am sorry to hear you are in stage four. I am hoping you could share with me some of your wisdom of your experience.
I was diagnosed 5 years ago by elevated LFTs and a biopsy. However, I had an allergic reaction to Urso the first time we tried it and was considered a non-responder when we tried a year later. Just recently I was put on Ocaliva. So far, my alk phos at 300 remains at 300 and recently my cholesterol is climbing fast.
My doctor doesn't want to do another liver biopsy as he says it is an unnecessary risk. So I have never known what stage I am in. Not knowing what stage I am in makes it challenging to determine how I should be living my life.
Could you tell me how your doctors determined what stage you are in. I appreciate any advice (from anyone) on what test or symptoms determine what stage a PBC patient is in.
Good luck and hang in there!
Kathy
Hi Kathy - welcome. I was diagnosed 14 years ago at age 38 - liver biopsy revealed stage 1-2. Keep in mind the stages relate to liver damage rather than stages of PBC. After becoming a non responder to Urso after 7 or so years, another biopsy confirmed stage 4. This was reflected in worsening LFTS and falling Albumin, MRI, US and fibroscan. The only true way of ascertaining the stage is via biopsy. Because I have cirrhosis, I am treated to the "standard of care " 6 monthly ultrasound to monitor for lesions - liver cancer more common in those with cirrhosis. The ultrasound reports contain descriptions such as " distorted architecture, heterogenous echotexture and nodularity in keeping with cirrhosis". These reports confirm the already known cirrhosis. I am also on Obeticholic Acid although as part of the long term safety extension arm of the trial as it is not available in Australia where I live as yet. This is my 4th year on 10mg OCA ( 1 year on placebo!!) and my ALP which was over 700 floated down to about 300, has had periods closer to 200 and was 265 at last blood test. Because I have cirrhosis, these figures are probably less important ( for me) than Albumin, bilirubin etc.
Although fatigue has been my companion since the beginning, I still work as a nurse, have a large family and continue to smell the roses!! Or the wattle and gum in our neck of the woods down under !
Take care Kathy and happy to help if I can with any other questions.
Karaliz
in reply to Karaliz
Hi Karen,
Just a quick question re. the Obeticholic Acid trial you're in - how is it going? I am thinking of volunteering to be a participant of the one being done at the RPA but am a bit worried that, as I'm doing okay now, I could set stuff off if I start taking the 'new' drug.
Take care
Di
Karaliz in reply to
Hi Di - great to hear from you
.Just in from work so apologies for slow reply. I was listening to the Classic FM countdown a few weekends ago and a lady rang in from Tassie saying she was listening to the countdown by the fire at her spinning wheel ! I immediately thought of you - I know you're on NSW coast but you follow my thinking!!
Re OCA....I'm very interested that RPA are trialling OCA - is this one in its final stages you can be recruited into or is it a brand new trial??
As you know I had stopped responding to Urso and apart from worsening LFTs, I felt appalling at that stage.... my husband was scraping me up off the floor after work! The OCA worked very swiftly and my LFTs have stabilised ( sort of) for the past few years. My consultant did say I was very close to the edge so I am very grateful to have been recruited into the trial. ( was on placebo for first year and this is my 4th year on active drug)
I have had zero side effects from OCA....I experienced none with Urso either and I am fortunate enough to have never had the PBC itch.
I guess if your Dr thinks you will benefit from taking it, then I would definitely recommend it. Obviously it cannot reverse the damage already wrought by cirrhosis but it certainly made a big difference to the massive inflammation I was experiencing at the time. What did your Dr say?
As far as the staging goes, my gastroenterologist at the time of diagnosis, stated the biopsy was the "gold standard" for diagnosing PBC with the obvious consequence that the liver damage is able to be staged. I knew no one else with PBC for such a long time that I can't comment on whether this practice was common for Australia or not.
Hope all's well in your sunny nook Di
Take care
Karen
in reply to Karaliz
Hi again Karen,
Glad to hear from you 
Re: the trial - I haven't seen my specialist yet to ask about participating in this trial, I don't see him until August. I did speak of it to my GP, and told her of my concerns regarding "upsetting the apple cart", but as she said, I would be well monitored throughout the study.
Oh, and re: the study, the short title is:
'Dose response study of GSK2330672 for the treatment of pruritus in patients with primary biliary cholangitis'
It's not a trial for the Obeticholic Acid as I indicated. All I can say about my thinking it was for the 'new' drug is, HE reigns supreme in my world - I really should check things before I post them. ((((
The study is asking for volunteers in Australia with PBC, who have the itch - it's being conducted through a major hospital in each state (Tasmania, and maybe NT are the exceptions). The information was posted on the 'Australian and NZ PBC Support Group' on Facebook.
Take care,
Di
Karaliz in reply to
Hi again Di...I understand about the new trial now. I'm sorry to hear you suffer with HE .....I didn't realise that you did. How does it manifest itself in your case?
Hope you are still able to tackle your weaving and spinning on your good days.
Let me know if you decide to participate in the trial.
Karen x
in reply to Karaliz
Thanks Karen,
HE: hmmm...... well, I pretty much experience all of the 'classic' symptoms of HE, memory loss, cognitive issues, mood swings (anger mainly) etc. My specialist prescribed Lactoluse (spelling), but it seemed to give me the 'wind pains' from hell, so, as I am still only having episodes of HE I decided not to take the med. all the time, only when needed.
I'm assuming that it is related to the HE, but me having the 'attention span of a two year old' is playing havoc with my spinning and weaving, even on my 'good' days. (((
I'll keep you informed about the trial - my itching is getting worse so........
Di
Karaliz in reply to
That is a real bag of difficult symptoms to deal with Di....you write so articulately I didn't realise you suffered in this way. What does your consultant say ? Are you just expected to go on and on dealing with this without a plan?
When we first started communicating nearly 2 years ago, you were very busy with all your projects and "UFOs" as you called them ....it sounds as though you do not feel nearly as well now....thinking of you Di.
Karen x
in reply to Karaliz
'giggle' - "you write so articulately" took me over an hour to compose that last 'comment' to you. It's one of the reasons I had to withdraw from my doctorate candidacy - I have trouble finding the 'words', I know they are there, but they just won't come, and while I'm trying to find them I lose my train of thought.
Other than the Med. prescribed, I'm not on any 'plan' for the HE as yet - I have only seen my new consultant once (loved my 'old' one, but he returned to the UK), so that visit was more of a 'meet and greet' one - at my next appointment (August) I will be discussing a few things, and one will be the HE.
Thanks for your well wishes Karen, I hope the same for you
Di
II was thinking about you being on OCA for four years now. And considering you are in stage four. I was lead to believe it works better for earlier stages. This is good news for a lot of us who could never take Urso and had to go for years without treatment. Do you now take anything beside OCA to help your liver? I heard that there were about 45 new drug trials going on around the world for PBC. Does you doctor have any expectations how long the OCA can hold off the need for a transplant at stage 4? I ask because my doctor choses not to discuss stages with me or risk giving me another biopsy. I figured out bilirubin was important. Mine is at 1.6 I think that means I am ok for now because I don't look jaundice. If you don't mind sharing what does your bili and albumin look like at stage 4.
My hat off to you for being able to work as a nurse. We need nurses! I don't know how you do it as being a nurse is tiring without being sick.
Thank you for all the information you share. It helps.
Kathy
Hi Kathy
It is true that OCA is more effective in earlier stages but the point is that while it cannot undo the damage wrought by cirrhosis, it has proved effective at reducing inflammation and reducing ALP in particular. My consultant wants me to take the Igm of Urso I've been on since diagnosis along with OCA as he believes it still helps, if only marginally.
My consultant has only said my liver won't last but given each person is unique, he is wise not to speculate on time frames I believe. Certainly once bilirubin starts to rise and albumin to really fall, the conversation may start.
My bilirubin has always been normal but typically in PBC starts to rise when the liver is no longer able to compensate. My Dr has said it is surprising I have never been jaundiced given how extensive my liver damage is. My albumin has been down to 28 when I was very unwell prior to commencing OCA and nows sits around 31-32. I guess once these figures start to look serious, then things are serious - as I'm sure the wonderful people who have been through a transplant can testify.
Re work - I do feel very tired but I have a truly wonderful husband and children. Financially I need to work and at only 51, I'm loathe to give in to PBC.
Thanks for your comments Kathy and if I can be of any further use please ask.
Karen
in reply to Q8Cooper
Q8Cooper,
I realise you are asking Karen this question, but I thought I would just throw my Bilirubin and Albumin levels in there as well, as we are both in Stage 4.
As of May this year my:
Bilirubin was 14 (umo1/L (3 - 15)
Albumin was 33 g/L (36 - 47)
Very similar to Karen's, and like Karen, I have never been jaundice.
Di
I was diagnosed 3 years ago when I was 37..mine was just the begging stage when they cut me..as soon as Dr. put me on urso all my liver enzymes came normal except alp hovering around high normal to slightly high..now, I'm 40 and my liver is fine but all other kinds of pbc related side effects like hypothyroidism, dry(mouth, eyes and genital), and reactive hypoglycemia are giving me trouble..
I take medicines for everything but my dr. Hasn't put me on any diet restriction except just a suggestion for eat healthy😁
I want to have kids but scares me thinking I might pass pbc to them😔😔
It was nice to know you are doing fine after 14 years of pbc..I get optimistic hope from your post.
Thank you
Thanks for your comment Sachin, Although PBC can be seen in more than 1 family member, there is no genetic link identified. I would not let that stop you having children - we will have found a cure by the time a child not born yet has to think about PBC !!!
My 4 children are the greatest joy of my life. Grab life with both hands - you only live once! Make it as wonderful and as meaningful as you can.
Carpe Diem !
Karen
I'm only having one kids that's it 😁... I read about no genetic links as well and I'm the first person known who has pbc in our 3 generation😔😭..
you are right I have to live my life the fullest which I have been..
Sachin
I'm in Australia and go to the Austin Hospital in Melbourne for my treatment as I'm on the transplant list (not active at the moment) I'm stage 4. Where are you located in our beautiful Country?
in reply to Q8Cooper
Hi Kathy,
Karen has given you some very good information in her reply to you.
Thirty years ago I went to see my GP because I was always feeling fatigued (this is my worst symptom), after two years and multiple blood tests my GP sent me to a GI specialist, who did an AMA M2 blood test (at the time he told me that was the only blood test I hadn't had lol), this was 'positive', so I was diagnosed with PBC (28 years ago) based on the fatigue, high LFTs and a positive AMA M2 - I didn't have a biopsy until 6 months after diagnosis (this showed damaged bile ducts, enlarged triads, etc.), and then I had a second one 5 years after the initial biopsy (this one showed further damage). See link below.
I was not told what stage I was - none of my doctors ever mention 'stages'. I'm not sure, but I think that here in Australia we tend to follow the UK in not staging PBC. Is that how you understand it Karen?
Anyway, based on what I have read (PBC Foundation information) I think I was probably Stage 2 when first diagnosed (damaged bile ducts). About 7 years ago I began to notice I was much weaker (I couldn't play 'hopscotch' with my grandkids), and I had begun to experience many of the PBC symptoms (except for the constant fatigue I only had 'flares' of the itch etc. before this). For two years I mentioned this to my GI specialist who kept saying that because my LFTs were near normal, and hadn't changed for years, nothing was wrong - well, I didn't like that answer so I found myself another specialist who sent me off for an ultrasound which showed I had extensive cirrhosis - to say I was shocked is an understatement to say the least.
As Karen has stated above, treatment changes once you reach cirrhosis stage, so it does become important to know when you reach the later stages of PBC.
I am a little confused at how you are told what stage you're in. In other words there in the UK (im in USA) you say a biopsy is the only way of finding out what stage you're in. Here I found out my stage by CT scan. I haven't had a biopsy since I was first diagnosed in 2012. Im stage 4 with the start of cirrhosis, small varicies, portal hypertension, & fluid in my abdomen. Sry, can't spell the term for that lol.
Thank you for any feedback😊
Shannon
in reply to Shulsey
Hi Shannon,
My biopsies were done 27 and 22 years ago (I had two five years apart), I was not told a 'stage' only the results i.e. bile duct damage, and the later one showed more damage, so those results put me in about Stage 2 (according to the Pbcers' 'stages' website.
Biopsies look at the cellular structure, whereas, CT and ultrasounds look at the whole organ, and in the process the outline of the organ is revealed. A healthy liver has a smooth outline whereas a cirrhotic liver's outline appears lumpy and bumpy. I'm now Stage 4 with advanced cirrhosis and my ultrasounds clearly show a lumpy, bumpy surface.
google.com.au/search?q=ct+s...
I'm not a doctor, but I would think that you were able to be staged via a CT scan simply because the surface of you liver was beginning to look lumpy.
Take care
Di
Shulsey in reply to
Dianne,Thank you so much. & yes I got to see the pics from the scans & it was very clear that my liver is far from smooth
I was told that they couldn't check the actual condition of the liver via ultrasound, that's why we have fibroscan, biopsy etc. That the ultrasound test was just to eliminate other things. I'm sorry your result wasn't good & that you were given false hope, here's hoping all goes well for you now. Xx
in reply to teddybear7
You're right. Thank you so much.
Whatever you do don't panic. That's the worst. Try to concentrate on how your body is feeling. If you still feel okay then just keep telling yourself you're okay. I don't think you mentioned if you have varices or swelling in the tummy? And you are still pretty young. You have a family and people who love you. You have time to get better. Did you doctor say what to next?
In any case I'm sending up my prayer for you. -Pam
in reply to 4pjx__
Thank you! Yeah I'm kind of a laid back person whatever will be will be ya know?
Hi RebeGarcia10,
I feel exactly the same about U/S. I had an U/S 2 years ago, at which time the radiographer reported to my GP that my liver appeared normal. Alas, 6 months later a CT scan showed my liver to be consistent with cirrhosis and a fibroscan confirmed this. I have always been teetotal and therefore baffled how this came about.
in reply to YummyBear
Yummybear, PBC is not caused through alcohol consumption - it is thought to be an autoimmune condition where the autoimmune system attacks the bile ducts (not the liver), once the bile ducts are destroyed the buildup of bile damages the liver. PBC is a slow progressive condition.
Take care
YummyBear in reply to
Many thanks.
I know PBC isnt caused by alcohol consumption. I simply added that statement because many people (non sufferers) think that cirrhosis of the liver is synonymous with alcohol intake. For example I have been asked by consultants 'how much do you drink' instead of saying 'do you drink' or friends saying 'he/she has been diagnosed with cirrhosis, 'I didnt know he was a drinker'!
Recent tests on my bileducts showed completely all clear/unobstructed.
Hi RebeGarcia10, re your U/S results--- I don't know who read your scan; you could ask for another radiologist to look at scan or because it is a relatively non invasive test have it repeated at a different location with radiologists who have a LOT of liver patients. Ultrasound is an extremely operator dependent imaging test , not like an MRI or a CT scan (I used to do U/S)
One of the reasons they renamed PBC - Primary Biliary Cirrhosis to Primary Biliary Cholangitis is to take the stigma away from people thinking ar are all alcoholics.
I hope it works.
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