I'm very glad to find this place. It's really helpful reading the posts here.
Sorry for my English as I'm not an native English speaker, but I'll try my best to make it understandable.
As far as I know, 2 out of 3 requirements are needed to make a diagnose of PBC.
1. ama-m2 positive
2. abnormal liver function test
3. histology evidance of PBC through a liver biopsy
Now I'm ama-m2 positive, but all my liver function tests are within normal range(including ALP,GGT, etc).
Do I need to get a liver biopsy in order to get a diagnose as early as possible? Because to my knowledge, the earlier you get a diagnose and start taking urso, the more likelihood that you'll responde to urso, and hence the better the prognosis will be.
I know that EASL suggested that for those with ama-m2 positive but normal liver function test, it is not recommended to do a liver biopsy. But, still, isn't it the earlier you get a diagnose the better (if you are ama-m2 positive) ?
I feel like that not starting to take urso until my liver function test turn abnormal is sort of missing a key time window of treatment.
Meanwhile, I do have a little worry about the potential damage (if there is any) that may cause to my liver during the liver biopsy.
I'm so confused. Would anyone help me ? Thank you so much!
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anonymousjohndoe
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I think you would be considered to be someone with the potential to develop PBC. which means regular blood tests (yearly?) to check lfts. Then even if you did develop PBC you would find it very early, I don't think your treatment would be compromised at all.
I also don't think your doctor would agree to a biopsy, it is usually only used when there is a clear benefit, and it is necessary. I had one for diagnosis, it was fine, but not something you'd want to do. Honestly, I don't think you need it.
Having said all that, I'm just recently diagnosed, so have a lot to learn myself.
My bloods indicated AIH, but on biopsy no AIH, just PBC.
In your first post you included the 3 requirements for diagnosis. I wonder would Urso be used at your stage, as the lfts are normal, even if you are shown to have +ve AMA and histology.
Have you joined the PBC Foundation? They have lots of good information.
Thank you Kakey, I'll join the PBC Foundation and start looking for some useful imformation. I've read some pdf documents provided by EASL and AASLD regarding PBC. EASL says that they don't recommend doing a liver biopsy if you're AMA-M2 positive and with normal LFT. AASLD just doesn't mention this situiation if I remeber correctly.
If I get a biopsy and found histology evidence of PBC, then together with a positive AMA-M2, I can get a diagnosis. Then I can definitely start using Urso.
But, what do I do if the biopsy does NOT indicate PBC? That's another question that bothers me.
My understanding is that pbc is a very slow progressing condition. Also some people with positive ama-m2 do not go on to develop pbc.
I think you should check in with a hepatologist (liver doctor) well versed in pbc (you want someone who has at least 100 or more pbc patients) & have him or her help you through this. Not sure where you are...doctors like that are usually in the teaching hospitals of a major city.
I was diagnosed with a biopsy when my LFT’s looked abnormal. I was getting quarterly blood work as I was taking Lipitor for my cholesterol. I suspect that I probably had pbc for some time prior to diagnosis.
Liver Biopsies are invasive & I think doctors tend not to go that route unless it is absolutely needed.
Having said that, the process was fine as I had it done in a hospital & was under full anesthesia. One minute I was talking to the doctor, next minute I woke up & it was done. Afterwards, you have to go into a recovery room where you are hook up to machines to monitor your vitals for a few hours before you can go home. You have to lie on your side the entire time, since they need the biopsy site to clot & stop bleeding.
I was ravenously hungry though since you are not allow to eat 24 hours before hand & they only give you crackers & soda after.
Thank you very much for your reply! I've been Googling around for quite a while and found serveral medical thesis saying that during the follow-up visit of those with AMA-M2 positive & LFT normal, many of them got diagnosed with PBC later, although after various time period. Some are diagnosed after 5 years, some are after 10 years, some are even after 20 years, etc. I'm wondering if anyone in this community or someone you know have been AMA-M2 positive but without PBC for quite a long time?
saying that after liver biopsy, 80% of people with positive AMA-M2 & normal ALP(not complete normal LFT, though) are diagnosed with PBC.
This exact thesis inspired me to get a liver biopsy. I'm in China and the author of this thesis, Doctor Ma Xiong, is exactly the doctor I'm planning to see in the near future, because he is the MOST famouse doctor in the PBC area in China.
Also I'd like to know why you had a liver biopsy? Is it because you'are not AMA-M2 positive ?
My case is like yours exactly. I had positive AMA M2 but all liver functions were ok, doctor then said we cannot diagnose it now as some people have these antibodies but they never develop the disease, he asked me to do liver functions every few months as it might develop anytime in the future, I did what he said and kept doing my LFTs every 4-5 months and after 2.5 years they started rising but very slightly and in a few months the Gamma GT also started rising so then I had the diagnosis and started taking Urso. Keep an eye on it, it might develop and it might not, maybe in a few months or a few years, good you picked it up early and will put the right plan and start medication on time. Good Luck xx
You mentioned that your LFT started rising, but did they rise above the upper normal limit ? Or did they just rise slowly but were still within the normal range?
They were very slightly above the norm, like for example if the norm was 50 I was 52-53 then they rose more before diagnosis to like 80-100. Hope this helps.
I think there are a few folks on here that are ama-m2 positive & not yet diagnosed with pbc. Likely they will chime in when they come across this post.
I had a biopsy because the hepatologist said the blood work labs were inconclusive, suggestive of AIH or PBC. Actually my GI doctor who is not a hepatologist practically beg me to get a biopsy because he wanted to get to the bottom of the slightly elevated LFTs which were sometimes normal. I was a bit hesitant about the biopsy since I thought the lipitor was causing the elevated LFT’s. I stopped taking it for a while, but that didn't resolve itself.
So my GI told me, I really want you to get the biopsy & since I can’t seem to convince you, I want you to see the hepatologist. So consulted with my hepatologist who was really great & nice. He spent ~1.5 hours getting acquainted with me & explaining how we were going to investigate it & drew me pictures of how we would diagnose via process of elimination. I was his last appointment that Friday & he said he didn't have any plans so we can take all the time needed to address my questions. Anyway he did the full blood labs & then convinced me to do a biopsy.
Even my biopsy was not clear cut. The pathologist report was also inconclusive. So my hepatologist had them send the biopsy samples to a leading pbc pathologist at Columbia Presbyterian Hospital in NYC for a second opinion. This pathologist reviewed the slides & my histology to give the pbc diagnosis, early stage. My hepatologist put me on urso immediately.
I see my hepatologist quarterly & he orders my blood work. He once told me not to worry because worrying is bad for autoimmune conditions.
I think you should follow whatever advice Dr Ma has & go on from there. You can let him/her manage this for you. You will be in good hands.
I do look forward to knowing more people here, especially those who are positive AMA-M2 but not diagnosed. I hope you guys can see this and leave a note. I'd really appreciate it.
Now I know that many people choose to take a biopsy largely because of inconclusive LFT and antibodies, or that they need to separate AIH from PBC.
Hi. I’m in exactly the same position as you. I have very high positive M2 antibodies but normal liver function tests. I was dismissed from the hospital after being told that they would keep an eye on me for at least five years, but no they are not interested at all. I also have an enlarged liver and other auto immune diseases. I hope you get this sorted as it is a worry and I can totally understand how you are feeling
Did the hospital tell you how frequently you should check your liver function tests? Did they offer you a liver biopsy? I'm wondering what they would responde if you ask them whether you can have a liver biopsy?
They won’t do a biopsy as the risks are too high and just said to ask my Gp to check my liver once a year. As soon as the liver function test becomes abnormal then I will be diagnosed straight away. Hopefully that will never happen but it’s a worry.
Yes, it is indeed a worry and I don't like that feeling. Is a liver biopsy THAT risky? As far as I know, a liver biopsy nowadays is considered to be a normal and generally safe procedure ( mayoclinic.org/tests-proced... ) .
In my opinion, though it's been used less frequently than before, it is however important for people like us , who are AMA-M2 positive but with normal liver function tests, because a diagnosis of PBC only need 2 out of 3 requirements and biopsy is 1 of the 3. I mean, you just don't have another way to help to make a diagnosis of PBC when you are in the situation.
If they offered me a biopsy I would probably take it even with the risks. I thinks it’s very important to find these things out early so we can be treated and slow down the process but the Nhs won’t do it as they don’t think for me it’s not necessary. My M2 antibodies are very high, plus I have auto immune thyroid disease. I have been told by two consultants I have Pbc and then was told by the consultants young colleague at another appointment that only 15% of people with positive AMA go on to develop Pbc and basically good bye!! At present there’s nothing I can do, but as I say, if I was offered a biopsy I would take it 😀
Hi L Mor , so sorry to hear of your struggle. I responded to original thread below but I just wanted to let you know that I have the same exact situation. I had antibodies to my thyroid with toxic nodules. I decided over 10years a go to have my thyroid removed and these past two years I’ve had positive AMA without abnormal liver function tests. I was told by both Hepatologist and endocrinologist that people with autoimmune disease usually have more than just one autoimmune condition. Perhaps seeing an endocrinologist about your thyroid could open the door to a clearer diagnosis. Best wishes to you. Also arthritis tends to rear its ugly head with autoimmune diseases so if you do suffer from that perhaps see a Rhematologist as well.
Hi lilespo- Thank you for your response. I have seen a endocrinologist once when I was first diagnosed with thyroid disease. I explained all the horrendous symptoms I was having to her and she told me that it was probably the menopause and if they don’t resolve with levothyroxine then to try Hrt. Goodbye and I don’t need to see you again!!! That was my experience so I don’t have alot of faith in that department. lol. My liver specialist told me when I first saw him that they would keep an eye on me for at least five years and after one, said goodbye and I don’t want to see you again unless your liver test becomes abnormal. (On top of the antibodies my liver is over 16cm) My heart surgeon has been fantastic and I will praise that department very highly. I saw a gastroenterologist for my stomach issues and he was fantastic too and asked for a huge panel of bloods to be done where the pbc antibodies were discovered. I have taken my health into my own hands and I have private bloods done when I can afford then. I find gp’s have zero knowledge of the thyroid and no understanding of the symptoms or where levels need to be and just focus on Tsh. There isn’t a day I feel ok. I’m not moaning though, I could be worse and I manage with what I have and do the best to stay healthy. I hope you are staying well too. X
I don't think it's THAT risky, it's just that the risks outweigh the benefit. When there's a clear benefit it's worth it. I think that for you the benefit wouldn't be considered worth it. If your lfts do raise in time then you could be diagnosed without needing a biopsy.
I think you need to find out for sure whether Urso is prescribed for someone with normal lfts. If it is then biopsy could result in that treatment. If it's not then biopsy wouldn't help you. I'm fairly sure that here in the U.K. that would be a reason not to do it.
Hi there. I feel for you and all those replying to have to live with the anxiety from this diagnosis. I too have positive AMA and normal LFT. My Hepatologist also did a scan and saw my liver and pancreatic ducts had dialated to twice normal limits. I had gastro Dr do an endoscopy and luckily did not see any growths. Back to Hepatologist..I took several blood tests every 3 months that showed my insulin levels were compromised which is pancreas related yet no other abnormalities other than elevated alpha veto protein. We are at a loss. After repeat scans and elasticity tests we saw that my liver went from an F0 to an F1. At this point I too am in a holding pattern. It weighed so heavy on my mind esp after having to do stat CT scans etc ..that I finally accepted that I am in a good spot. Whatever is brewing (leaning towards PBC overlapping with something else) we will be able to see it as it unfolds. In other words, we are way ahead of the disease as it has not reared its ugly head. I hope after you research and meet with respected Drs that you too can find some peace in knowing that you will be ahead of whatever is lurking. I’ve found this website a source of incredible knowledge, compassion and generosity. Best to you and heartfelt best wishes to all of PBC sufferers. Stay strong!,,
The pbc foundation helpline link above would be able to help you if you need guidance.
There was a lady on here who was in the similar position as you are , I can’t remember her name but have a look at past posts about being AMA positive I’am sure you’ll find something. I remember she had a lot of knowledge around the situation.
I had high ALP and AMA positive by the time I was diagnosed. I was given six monthly bloods and an annual ultrasound. I was never staged until much later about four years ago ( six years after diagnosis) when scan showed F0 -F1. I’am back to annual scans and six monthly bloods now.
I currently don't have other auto immune diseases.
I got a AMA test done because I have chronic kidney disease and I asked the doctor to do more research into my chronic kidney disease. So the doctor asked me to do a full antibody blood test and the test showed that I'm AMA-M2 positive.
My LFTs are generally far below (I don't know if this is an accurate way to say it ) the ULN. For example, the normal range of ALP is 50~135 for women( local 'healthy' reference ranges, I guess, as you pointed out) and mine is 86.
I think you also made a good point that LFT values should also be compared to my usual values in the past years. I'll try to find those LFTs results.
I am supprised that you know about Prof Ma Xiong ? I didn't expect him to be such well known in your area ( U.S. or Europe or AU , I guess?) . Anyway, Prof Ma Xiong is THE MOST famouse doctor in PBC area in China, so I'm definitely going to make an appointment with him.
By the way, I've got a question for you if you don't mind, do you have any symptoms related to PBC now? Like itiching or fatigue? I am kind of hoping that, by getting diagnosed and treatment at a very early stage, the symptoms can be very mild. I really get scared when I found out that some people may experience severe fatigue or itiching.
you are so kind ! You even googled Dr Ma! So glad to hear that you don't have any symptoms and are leading a healthy lifestyle. I'll surely try to find historical lab results and take them to the doctor.
Incidentally, all the research I’ve read indicate that the intensity of the symptoms do not correlate with the pbc stages. So little is known about this. Believe it is in the Easl document.
Hi ninjagirlwebb, you are right, I've read it too. I know that intensity of the symptoms do not correlate with the pbc stages ONCE THE SYMPTONS START. But what those research and EASL didn't mention is whether the treatment can DELAY the symptoms when you don't have symptoms at the time of diagnosis.
Dear, no worries! I hope you had a fun Memorial Day weekend. I really appreciate your help! You are soooo nice!
I can open the link, and I remember that this article is one of the many articles I came across when I was googling but didn't pay a lot of attention to. I'll read it more throughly.
AST,ALT and Bilirubin are also in the historical lab results and I'll take them to the Prof.
I wanted to reply and say that Iam also AMA positive. I have been for the past 4 years, it was found accidently by an allergist who drew my blood for all sorts of things. My LFTs have been normal, and my Specialist 4 years ago did have me do a liver biopsy which came back normal. My last blood draw was a few months ago and still normal LFTs they now draw once a year for them. I hope I dont end up deleloping PBC, there is another lady on here that has has positive AMA for like 20 years and has not developed PBC yet. Hope this helps! Im sure if she sees this post she will reply also!
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