I have had pain in my liver area for years and it generally worsens around that time of the month. Since, March of last year I've been diagnosed with anemia and then subsequently with Endometriosis/Adenomyosis. Later, elevated blood calcium led to a diagnoses of hyperparathyroid to which I had removed in Sep. and also Hashimotos. I also have low vitamin D. I had some elevation in ALP but blamed it on the parathyroid it can cause this to be elevated too, but then after a successful surgery my liver enzymes was again elevated and this time so was the ALT and AST. However the most recent bloodwork was normal and liver results yesterday showed no signs of PBC. The DR. Has said that 5% (I think?) of people can have false positives with other liver disease, but AMA M2 I know is highly specific for PBC and he even said that biopsy's can depend on what part of the liver the sample was taken from. Has this happened to anyone else and should I even be worried about the potential of later down the road of developing PBC. He wants to monitor my bloodwork every 6 months and he mentioned the AMA + could have been a false positive, but I also know that I have some of the co morbid conditions that go with that. Are false positives common with other liver diseases. I also have positive C-RP and an elevated tumor marker that goes along with liver but can't remember what it was. Any advice is appreciated...thanks!
AMA-M2 positive (68) and liver biopsy shows... - PBC Foundation
AMA-M2 positive (68) and liver biopsy shows no damage and no inflammation but 30% fat in the liver!
Hi Jean43
Yes, I am actually in a quite similar position as you although my biopsy sample was too small so the conclusion was that PBC can be present but didn't show on this biopsy, only some mild fat in the liver. The biopsy was too small to be 100% certain so it's still inconclusive.. Are your liver tests fine? My tests are all fine except from the GGT that is just very mildly elevated. I asked the doctor if this could be the beginning of my PBC and abnormal liver tests, but it's impossible for him to know right now.
What is your AMA value? Mine is very high. Have you only been tested for AMA once since he said it can be false positive?I think I read somewhere that false positive AMA is quite rare. I have been tested for AMA 4 times and each time it comes back positive so they are not going to repeat the test again. Did he give you URSO? I didn't get URSO because then they won't see any changes in my liver tests and they want to be 100% sure before they give it to me.
I will try to answer your questions as best as I can.
There are some people that never goes on to develop PBC even though they are AMA positive, but in one study there were 29 patients that all had normal liver tests and 24 of the 29 patients developed PBC within 10 or 15 years and it does say on the PBC Foundation homepage that most of the patients with a positive AMA and normal liver tests will develop PBC, BUT as said, its not definite. There are some people here that are just AMA positive and never has had an abnormal liver test.
I was given the same message as you from my doctor: "liver tests every 6 month" and I have to go back in again if my liver tests changes. I have been told from 2 different doctors that I will probably develop it because my AMA and M2 tests are very high.
It's very difficult for the doctors to tell you if you will develop PBC or not in the future, and it's difficult for you to know you are AMA positive as well and not know what the future might bring, but my conclusion after all this worrying is that until anything changes I will just go on with my life, live normal and try my best not to worry. At least now both you and the doctors know you have a risk of developing PBC and if anything changes you will know it very early in the disease course.
Yes, PBC can be present in different areas of the liver so the test could have been taken from a healthy part of the liver. Also different areas of the liver can show different stages of the disease.
I feel very sure that if PBC develops we will know it because our blood tests will show it in time.
I know exactly how you feel, and I feel like I want to be one step ahead of PBC, but it's not possible... hope your liver tests will continue to be normal in the future.
Take care
Elpida
First of all, thank-you for well researched answer! Yes, my last labs all lft's were within normal range the Alt, and Ast were only high once and the Alp has been slightly elevated a couple times. My GGT has never been tested and it may be due to the fact that I take citalpram and antidepressants can cause an elevated GGT according to what I read. I don't know if the increased ALP was even related to bone or liver the GGT can differentiate the two because if it's high then it's liver. I could have had bone depletion due to the fact I was hyperparathyroid but I wouldn't think it would cause an increase in ALP after surgery, but who knows. My AMA-M2 was 68 and I've only had it tested once and I'd be curious to have it retested again to see if it's still +. I asked about the liver pain and he said it could be Endo related since it seems worse around that time of month, which I thought of also but figured it was a lil high for Endo pain and since my liver was enlarged that it caused it and when I retain water every month it aggravates things. Anyway, overall I feel although the news wasn't great it was as good as I could hope for and like you said I should just go on living and but it on the back burner and just keep an eye on things is all I can do. As for the fatty liver, I guess I'll actually be putting that new year resolution to lose weight to fruition...meh! Hope your tests continue to be normal as well and wishing you good health.
Hi
I found this about PBC : The characteristic of this disease is its focal character. The anatomical changes are found at the same time in different stages in different portal areas.
Endometriosis can occur in all sorts of places, it's not just restricted to the area around the uterus, ovaries and outside of the lower bowel. People have it on the diaphragm and all sorts of organs in the mid to lower abdominal cavity.
As with PBC, there is a wide range of expertise among the consultants who end up treating us. I had a laparoscopy for my Endo with removal of large amounts of Endo from my lower abdominal cavity, all done by a seemingly proficient consultant; but when I repeated some of his opinions a couple of years later to my gynaecologist (who specialised in Endo), he told me it was rubbish, and then gave detailed and much more convincing explanations of what I had been experiencing.
I then had a mirena coil fitted and Endo was a thing of the past. It might be worth thinking about ... The progesterone in the mirena is such a low dose, and is close to its target site, and doesn't have to go through the liver to be filtered out of the blood and processed (unlike progesterone tablets), so it is safe for PBC - but check it in case thinking has changed. However, as with the Endo, I'd try to make sure your consultant is the amongst the best. I think some medics: GPs and even Consultants, have often not come across PBC before, and are often just not up to speed on the latest thinking.
Hello Jean43.
I was diagnosed with PBC back in 2010 and mine was pretty straight-forward judging by others and yourself on tnhis site.
I started itching, had fatigue at the time and my bloods (the LFTs - liver function test) were found to be abnormal (as in rising). I had a scan (showed pretty much normal liver and surrounding organs) and then eventually many months down the line on seeing a hospital doctor he did the antibodies test (AMAs and the ANAs) and the AMA was positive with 'a high titre' and the ANA negative.
Apparently if someone who has been tested positive for AMAs and diagnosed with PBC at a later date it is possible that a recheck can throw up a negative result from what I have found. I would have to ask a doctor about this but my view here is that possibly the lower the AMAs the less the progression with PBC at the time. I would also expect a pretty much normal or not much abnormal LFT reading perhaps. It can be possible for PBC to simply halt but no guarantee it won't ever restart up as once you have PBC it is with you for the rest of your life (until some cure is found).
As far as I know only the AMAs are used for PBC.
I might be wrong but it sounds like you might have something known as Fatty Liver Disease which might be worth asking your doctor here. You can develop a fatty liver in PBC also though.
The British LIver Trust have on their website leaflets with different liver condtiions that you might like to check out. Fatty Liver Disease is one. I think this is controlled more by diet.
Now the puzzler from what you said is that as I understand it, anyone with PBC shows cell changes in the liver as a whole and a biopsy is usually a definite diagnosis as such.
I never had a biopsy as I had the relevant markers by symptons, LFTs and also AMAs and being in the UK a biopsy isn't normally performed unless there is amny doubt.
I'd jot down your questions and any further that you have gained from posters on the site and question your doctor. I do think if possible we are all entitled to have some sort of diagnosis or explanation of what we might or may have and then we can start to really deal with it.
I've posted the Brit Trust website here for you to check out. Hope you re-post in the near future with how you have been and what further you might have had explained. (It goes under a condition known as NAFLD.)
britishlivertrust.org.uk/li...
Yes, I had biopsy and although it showed no damage it did show cell changes consistent with PBC.
Hi Peridot, thanks for the link. I'm a little confused because I thought the Dr. Said that I didnt have NAFLD for the fact that I don't have inflammation or damage, but from what I've been reading it is simply having more than ten percent fat in the liver and when it progresses to inflammation and damage then it becomes NASH... I could've misunderstood. One thing, I found interesting was that he said with the old AMA tests that AMA + folks would eventually develop PBC. The tests they use now there can be false positives that was either a .5% or 5% (not sure which one) of those tested. Therefore, I would think false positives seems unlikely, but I've been reading a lot of contradictory stuff on the matter, so Idk. I suppose I should only worry about the things that I do know and concentrate on losing some weight. I will definitely keep you updated if I found out anything noteworthy.
Elpida, that's very interesting...thanks for sharing. The liver pain began in the front for me and has always been the strongest there and is sometimes very painful. If I ever have to have a biopsy again, I'll ask if they can take it from there instead of the side. Though, I hope I wont ever need one. I love this site..it's good to be able to get other opinions from those who are more knowledgeable than myself. Stay well!
Junloee, I'm glad your biopsy shows no damage and I hope it stays that way. So what stage do you have then and correct me if I'm wrong...was there some folks on here that said they were diagnosed with PBC stage 0 and if that's true..what does that mean?
GrittyReads, one of the first gynaecologists suggested the Mirena for my heavy periods at the time, but later I switched Drs. and he thought I should have the ablation done because most women suffer with break through bleeding with the Mirena and I knew that wouldn't be for me. He used the laprascope while doing the tubal/ablation and that's when they found the Endo/Adenomyosis and later told that me that I could need a hysterectomy in 3-5 yrs. It's a shame really and if I knew that beforehand I would've went with the hysterectomy in the first place. He said I was in stage 2 and I know that the Endo that is already there isn't going anywhere until at least menopause but once the endometrium is burned out then can the Endo progress any further along? Thank-you!
I am actually going through the same thing right now. I have been having bad joint pain, and fatigue for almost 5 years now. I also have had 2 children in the last 5 years, so everyone (including myself) attributed it to that. At least I did at first.
I started to feel something was really wrong about a year after. It was hard to get out of bed, walk, bend, grab etc. I was and still am so unusually tired. I went from Dr. To Dr. Trying to find something. PCP, Cardiologist,Neurologist,OB, Gastro,Nepherologist, etc. I kid you not I had gone to about 30 different doctors.
I have also had pain in my liver area, which has landed me in the ER about 5 times a year. The conclusion always the same "phantom gallbladder pain" (I had mine out in 2009 Dr. Said it was the worst he's ever seen almost calcified)
My LFT's have been slowly trending upwards for the last 5 years as well, and my symptoms have gotten worse. Fatigue, joint pain, dry everything, itching beyond control, and I also now have cholesterol spots all over my body on my skin.
My Gastroenterologist kept saying it was Fatty Liver Disease. He did a sonogram, then eventually an internal sonogram still the same results. Then about 8 months ago he tested my AMA because he said my LFT's were entirely too high to be just fatty liver, more than twice what they should be...it came back positive. He immediately put me on Urso and sent me to a Hepatologist. The Hepatologist wanted his own bloodwork because he said I was entirely too young to have PBC (I am 34). It also came back positive so he scheduled a liver biopsy which I had done a week ago today. He calls me today and leaves a message saying my biopsy came back and I do not have PBC???? Just some fatty liver... How is that possible? What about my LFT's and my AMA? I have all the symptoms, and have had for a long time. Also I notice a difference in pain from my liver when I take my Urso...if I ever forget to take it the pain gets worse. Once I take it, in about an hour it subsides? Should I get a second opinion? Retake the biopsy? I read you do not even need a biopsy to be diagnosed???
My liver enzymes has been somewhat elevated to varying degrees the last 5-6 months. The Dr. gave me Nuvigil for the fatigue and it was great, but that's also the month the liver enzymes were really high, so I quit taking it along with a few other meds to see if my enzymes would normalize and they went down but are still elevated. So, don't know if it's the fatty liver or if PBC is developing and how could the Dr. know unless they do another biopsy. AST, ALT and ALP are all fluctuating, AST, ALT are more associated with fatty liver, I think, and ALP is more PBC at least initially. As far as getting a second opinion then I would if I were you. Why are you taking URSO if he doesn't believe you have PBC? You have two out of the three criteria and isn't that enough for diagnosis, but then again you also have a fatty liver too, but if your pain has lessened and you don't mention if your enzymes have lowered and if they have, then I would think its working. As long as they are giving you the URSO then It probably doesn't matter. Just from things I've read is that autoimmune liver diseases can be associated with fatty liver, so they may help in causing them. I have found one study that URSO showed some benefit for fatty livers, but I've not heard of it officially being prescribed for it though. I'm sorry, Im all over the place, but it's the same question I've asked myself too in regards to repeat biopsy. I really don't want to go there again. The Dr. will have to be convincing as to why it's necessary for me. My PCP thought they would want to do another one, so he may be right and I'm from the U.S. so it's more common here. It seems I've had other issues as of late, so have put PBC on the back burner for now and I'll see the Hepa Dr. In Jan., so Ill find out then, I guess. If they're already giving you the URSO then I probably wouldn't unless you just need validation for all your other symptoms or if your applying for disability benefits and need the diagnosis. I did notice some of the symptoms you mentioned sounds like thyroid to me. Have you had your thyroid checked? As far as the liver, I guess it depends on what's important to you. I hope my ramblings were helpful and I wish you all the best.
New Diagnosis of PBC and Prescribed URSO
Cataract, Liver/Pancreas issues, Elevated M2 AMA, NAFLD and now Dupuytren's, I am only 45! 
PBC Diagnosis
Pbc and muscle twitching
Which blood work and/or criteria was used to diagnose your PBC?
