PBC Foundation

False positive AMA test result?

I’m wondering if it can happen to get an AMA positive test and not having pbc? Just went to the hepatologist he said that it’s very minimal that I have pbc and very small chance that I have it according to him by looking at my blood work Antimitochondrial antibody came out positive on my last blood lab back in October ggt at 160 tryglicerides at 173, cholesterol 211, ALT 78 all these are high not normal range. He said that he doubts I have pbc because my alkaline phosphate is normal 108 to be exact normal range maximum to 117 above that is consider high, albumin and bilirubin normal so he says I don’t have that which is great but why the lab results says I have it? He said there are viruses or bacteria that can trigger that antibody in the system but they don’t know what exactly trigger that antibody? He asked me about my liver enzymes since when they are been elevated I told him it’s been a while all my 20’s all the time I got checked my liver enzymes always on 80’s and 90’s never normal but until now last October my AST was normal. He said the only way to confirm would be biopsy but he said I’m sure you don’t have pbc like saying it’s not worth it to do it maybe because my numbers are not high enough or because all the alkaline phosphate being normal he also said that there have been cases that people died because of a liver biopsy or bleed to death and also sometimes instead of grabbing liver tissue they grabbed kidney tissue or some other tissue he said that he don’t do that but the imagining center does that so he asked me if I wanted to do biopsy of course not if he said all these things who would say yes? So would love to know if someone can tell me how risky is a liver biopsy? Is it that bad? I know I would bleed because I can get a very small cut and I will bleed a lot even the phlebotomy person tells me oh you have a very good flow because of the bleeding as soon the pinch my vein I start bleeding, one time also did a mess of blood because the nurse wanted to get blood and she thought she didn’t get the vein and took it out and start sprinkling blood all over and heard that bleeding easily or briucing means liver problem so I don’t know what to do :( somebody maybe can advice me? Thanks

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I am in the same situation my ama positive but antipbh test negative

The hepatolist has started me on urso and will review my blood tests in 3 months

She doesnt want to do biopsy either she said it is invasive

I think doctors are afraid that we can bleed

I would go with advice from your hepatologist

Good luck

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True, thank you for your reply and advice, looks like he is not the only one doctor that is afraid to do a liver biopsy seems it’s a big deal and risky I didn’t know but since I know my body and I do bleed easily so I don’t know how deep and how much the are going to cut and if they can stop a bleeding from the liver but looks like they can’t stop a bleeding from the liver so not good.

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My Hepatologist wanted a biopsy so did my GI but I live in the US & doctors approach this differently than Europe. My Alk Phos was 1 point higher than range.

The Hepatologist did a whole panel of in depth blook work before we did the biopsy. I didn't want to do it unless absolutely necessary. He promised me he won't ask for one until he did thorough investigating without it to rule out all other causes. Did a sonogram too.

There are risks with all procedures & because the liver is so deep in our torsos, it is invasive.

I live in NYC, liver biopsies here are not done at imaging centers. They are done in the hospitals. They are a big deal. When I had mine done, there were 3 doctors: anesthesiologist, surgeon, resident; 2 nurses & a sonogram technician. It was a sonogram guided biopsy.

My GI knew the surgeon & told me the surgeon did hundreds of biopsies & not to worry. Who does it is key because you want someone who is very experienced to mitigate risks.

If you have complete faith in your Hepatologist, then follow his advice & see what care should be administered in your situation.

If not, I would go to another Hepatologist with your medical history & get a 2nd opinion. I wouldn't tell him/her what your first Hepatologist said. Just tell him/her the situation & ask for his/her independent evaluation. After he/she tells you an opinion, you can share what your Hepatologist says & see what he/she says about any differences. If both say the same thing, then I would follow the advice.

If they differ, I would discuss it with your primary doctor & see what he/she thinks or I would just follow the advice of the Hepatologist that you have the most confidence in.

Hope this helps. Good Luck.

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Thank you for your reply and advice I do see now that is a big deal the biopsy and has risks. To be honest I do not trust this hepatologist I mean I’m sure he knows what he is doing and saying ( I hope) but read his card and he is medical director liver transplantation so I’m sure he knows what he is saying and doing but the thing is I’ve seen him only that time and that’s it didn’t give me good impression by acting so negative, like he said omg what’s wrong with this computer ugh this crappy system welcome to the new century and stuff like that ugh I guess I’m gonna have to wait her and keep trying ugh and stuff like that told him about a rash on my hands he said that didn’t do anything with pbc he said it can happen to anybody welcome to the world and stuff like that so definitely need to find a new doctor but he said he wants to check my levels again and look for celiac disease I told him my gi doctor already did that that’s why I’m here because they didn’t find anything else just pbc he said my gi took biopsy from my endoscopy and it won’t show there if it’s at early stage which is true but I don’t think is celiac disease done that last year also with another gi doctor but yes need another doctor.

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I think it can be difficult to diagnose pbc my gp said i definitely have pbc based on bloods he referrred me to hepatologist she thinks it is but not 100% sure cos the antipdh which is a confimatory test came back negative she has started me on urso and will review bloods in 3 months

I would tend to go with the advice from hepatologist

I have full confidence in my hepatologist

You could always look for a second opinion if you are not happy

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Sure. This stuff that you are going through is very vexing so it is best to find a doctor you trust & listens to you.

It took me at least 3-5 visits with the Hepatologist before he gained my total confidence. He was the Director of Hepatology at a major hospital.

You also need to get copies of all the tests you did related to this issue. When you consult with another doctor, give them the test results because you don't need the same tests repeated.

My primary doctor who is also a GI forwarded all my previous tests to the Hepatologist (GI referred me) & discussed my case with him before my appointment.

Hepatologist spent an hour with me at that first appointment. It was a Friday before a holiday weekend & I was his last appointment. Told me he didn't have plans so we can take all the time we need.

If it weren't for him, I wouldn't be so calm about having this condition. He is always accessible to me via phone or secured email.

That is why it is important to find a doctor you trust.

People with autoimmune conditions are prone to skin rashes. It might not be pbc specific. But all this stuff is related.

Do you have a primary doctor? Maybe he/she can find another doctor for you. That's how I find most of my doctors. & if I don't like someone he suggests, I ask him for another.

Seems like you are at an early stage of whatever you have. Once you get to the bottom of it & get treated, you will be fine. Finding a good doctor is half the battle. The other half is working with the doctor to manage the condition.

Keep us posted.

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May I ask who your hepatologist is?

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I sent you a private message.

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Hello I first went to see a doctor when I was 43 with general muscle and joint pain itching hands and feet and very very bad fatigue, so I had symptoms and Antimitochondrial antibodies AMA,also some other unrelated ones antiphospholid, ,and ANA.So overall a very suggestive autoimmune picture and a strong family history of autoimmune diseases. My liver function was normal so they monitored me once a year for the next 3 years my liver function tests remained normal and then the alkaline phosphatase became high and I was diagnosed and started on Urso.I know the uncertainty is hard but I wouldn't have wanted a biopsy with the risks involved,and even now my consultant has never wanted to do one, but it is important to keep getting your liver function tests monitored I would say every six months.I hope this helps you could also call the pbc foundation to see what the current advice is.Jane

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Hi Jane thank you for your reply and advice, but that sounded like me I had muscle pain and joint paint probably for a month looks like muscle pain still have it now but not as much as 2 months ago I was dizzy also and very very tired at 7pm I felt like it was 2 or 3am so I was in bed early and tired but now I’m not tired and don’t have joint pain or dizziness I did have skin itching and still have itchin until now gets worse at night time doctor told me that must be a new soap I’m using or detergent I’m washing my clothes or my bed sheets which I know it’s not true because been itching for months, another thing that I noticed is my skinh got dried completely dry you can even see every single line on my skin from toes to head and dry mouth only when I’m asleep so I wake up with my tongue sticked on my mouth and dry throat that’s every morning when I wake up o used to wet my pillow but that’s history can’t do that anymore and read dry mouth also os one symptom, the rash I got are on my top hands are not itchy but it’s more like burning warm water would burn my rash also today I used lemon also burned my rash on my hand he said that’s not pbc so I don’t know I’m 34 by the way and he also mentioned that if my labs are still the same as now that I will develope pbc eventually but I guess I would look at my numbers again see a different doctor and see what he thinks about it.

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Hi, I have a positive PBC diagnosis (as a result of a biopsy), but my alk phos has always been at the lower end of the normal range, usually in the 60s. It hit an all time high recently of 80, which is still below the top of normal range (high end of normal is usually around 115). I'd recommend a second opinion. You CAN have PBC without your alk phos being elevated. Like you, my ALT and AST were at the high end of normal, or just over into the elevated range, when diagnosed. My AMA was positive. I had (and still have) little to no symptoms. I went ahead with the biopsy, which came back as PBC but very early stage. I'd seek a second opinion. It's better to know early.

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Thanks for your reply and advice I think you are right I was thinking the same thing that it might be at really early stage barely showing up but the symptoms I had were not mild at all that was something else more serious since I was in bed for 3 mo and half with fatigue muscle and joint pain dizziness itching, losing weight from 240 I’m at 214 now I told the doctor about it he didn’t give me a good especific explanation other than my immune system is making me lose weight but he didn’t say if it was consider a fast losing weight from August until today 5 months about 26lb also my fingernails changed I have a dark line across my finger on every finger including toes he said might be signs of malnutrition or your body not absorbing niutrients as it should makes sense since I’m losing weight fast but seems not every case people with pbc lost weight I did read another post that he actually lost 60 pounds while having pbc but didn’t specified how fast or how long he lost that weight. Also seems people with pbc have a lot of digestive issues not able to process food? Or what kind of issues? Diarreah? I did noticed my intestines made lots of noise though like hungry noise but without feeling hungry I mean all day and night for months until now it’s lot less rumbling in my intestines they got quieter now but before since I started to feel sick back in August they were noise until now no pain but just annoying noises but I should defendtly need to see a different doctor and look for another opinion and see if I should get the biopsy or not.

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I'd be concerned about the weight loss, too. Yes, PBCers do in general have digestive issues. I have had great luck making progress on my health issues with naturopaths and functional medicine practitioners. They are more open to testing to try to get to the root cause. Things like malabsorption and gut dysbiosis (which it sounds like should be investigated for you) will be at the top of their radar. I'd also suggest you read about the Autoimmune Paleo diet, which cuts out grains, dairy and some other foods that cause issues for those with autoimmune diseases. I feel much better than I have in 30 years on it. But stick to a well regarded GI or hepatologist for PBC testing and diagnosis. Good luck!

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Same situation that i am.I read it that when u have ama u will develop PBC.I have no alkalinephos or bilirubin elevated but i have alt , ast and Ama presence.From all i read i think that it is the first stage that u are.Take urso and keep it under control with urso.Take your blood every 3 months: alkaphosf, ggt ast alt bilirubin with all subsections and AMA.i think in all our cases is a matter of time until we will be certain diagnosticated with Pbc.

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Thank you for your reply and advice, yes I think I should be at an early stage but should I just request to the doc hey I want to start taking urso? I don’t think he would prescribe me medication without confirming right? But the doctor did tell me if my labs continue with the numbers like that I will develop pbc I think he is waiting for my alkaline phosphate to go up to say yes you do have pbc my ggt is at 160 now and alt is at 80’s something ast is normal was high before but went down, I don’t think ama would go away or go down to normal or 0 negative but let’s hope it does :) and it was a just a false positive. But now I understand why I got those muscle pains when I used to drink alcohol every sip of alcohol would give me muscle pain like electro shock in my muscles was bad and asked other people if drinking alcohol would feel the same and they didn’t feel the same way just me every sip it was like electricity going to my muscles :( but yes I’m looking for another doctor and hopefully o get a good diagnosis this time.

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My doctor couldn't diagnose definitively without a biopsy. That is why I agreed to one. I was so scared...put it off for at least 2 years since the time my GI primary doctor suggested it. He didn't push me because my numbers were only slightly elevated, but after 2 years he really wanted me to get the biopsy because he was concerned. So that's when he sent me to the Hepatologist for a 2nd opinion.

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My doctor i think that has more experience.He s thinking that i am in early stage.I think that too.My Fibro test fibromax found inflamation in liver.After 3 months urso 12,5 mg per kg , my numbers got normal.ALL OF THEM........And ama went to equivoch(20).

I take ursofalk in Romania.It is not expensive.i think anyone can afford it.

About u , i think that u should take Urso 12-13 mg per kg for 3 months .After that see your blood rezults.If they are improved take it for the rest of your life.

Urso slows down the deasese.I see it as a supliment.I also take silimarine(lagosa 2pcs/ day)

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Thats good news what is silimarine is it like milk thistle

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I have high AMAs (-M2), have had since 1992 and possibly all my life, but I do not have PBC!

My liver function, and other blood tests (done annually and more often if I am ill in an unusual way), are always safely normal. Some people just have AMAs (10% of people have AMAs according to blood donor statistics, and only 1.5 - 2.0% of those go on to develop PBC).

The presence of AMAs is one of the 3 main diagnostic criteria for the diagnosis of PBC. BUT, for a formal diagnosis of PBC, there must be at least 2 out of 3 of the formally / officially recognised diagnostic tests indicating PBC - AMAs alone are not enough for a diagnosis, although your blood tests should continue to be monitored for life.

The second of the main diagnostic tests for PBC is the testing of the liver function chemicals and other bloods. It is only when AMAs are present, and the blood tests are abnormal in a way that is typical pf PBC, that PBC should be diagnosed. If AMAs are absent (which can be the case in about 10% of people with PBC), or if the blood tests are normal, but AMAs are present, and there are strong symptoms of PBC, then a liver biopsy - the 3rd diagnostic criteria - should be done.

'The PBC Foundation' who run this website on 'Health Unlocked' have all this info on their website - see the links at the top of the page. They recently published an 8-page document which summarises the recent new official document (US/UK/Eu) on the guidelines for diagnosis of PBC. Checkout the 'PBC Foundation' website and read this document - if you join (it's free) their advisors are learned and lovely and you get further access to more info on the site.

NB The UK PBC Consultant who I saw - to have it confirmed that AMAs alone do not mean that I have PBC ... after a bogus diagnosis from a local Liver chap - is one of the world's leading consultants on PBC. He took my full personal and family medical history, and did all tests and examinations for PBC - short of a biopsy - and he is convinced that I am just one of the people that has just AMAs. There is a slim chance I may still develop PBC, but it is very unlikely. Apart from AMAs, I am otherwise relatively healthy and have no symptoms of PBC. However, the consultant said he would not give me Urso unless it was certain that I had full-blow PBC.

I hope this helps. Please, all of you, do read the info on the PBC Foundation site, and do suggest to new posters on here that they read it, too.

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I think you will be fine. You are very fortunate.

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Hello GrittyReads.

Ama must be in combination with elevated levels of alkalinphosf and ggt...... or biopsy witch is the gold method of diagnostic for pbc.

anyway , for a very big nr of pacients a big nr for alt and ast with inflamation on the liver and AMA positive can be the early stage of PBC.

U are a very happy case.....best of luck

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It is not a procedure that one should take lightly, but fortunately I did have liver biopsy, which confirmed stage 2 PBC. My lab work is not typical: I am AMA and ANA negative; normal Alk phos and bilirubin; elevated GGT and actin (SMA). My hepatologist suspects that I have a genetic defect in producing alk phos. I feel very lucky that PCP and GI continued to chase elevated GGT, and I am now on Urso and tolerating it well. For some of us liver biopsy is the only option for reliable diagnosis. Since the defect is genetic it is also important information for my female relatives.

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Hi

I had a biopsy about 6 weeks ago and am due to collect results from my GI this afternoon. It was suggested I had one because they believe I have PBC and possibly AIH overlap. The procedure was not pleasant (but I didn't cry!!) and was over with fairly quickly. They had to insert the needle between my ribs and apparently that is a little more uncomfortable. There is a strange and unpleasant 'tightening' in the liver area when the needle goes through the liver membrane but it subsides fairly quickly. I can no longer see the small incision and the bleeding was minimal. I was home about 5 hours after the procedure. I know many don't have the biopsy if the diagnosis from the bloodwork is straight forward but my GI wanted to be sure he was treating me for the correct condition(s).

I know medical staff always give patients the worse case scenario for procedures (to cover themselves) but I had the procedure because in my case they really felt I needed it. To be honest I was amazed they offered it. I thought that with all the NHS cutbacks they would not want to do this unless it was vital. If they are confident of your diagnosis without the biopsy, I wouldn't bother. Also, I have been warned that biopsies sometimes come back inconclusive.

Good luck.

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Yes...my biopsy was deemed inconclusive by the pathologist at the hospital where it was done. My hepatologist said that they were not as experienced with rare conditions. So he sent the slides to a renowned pathologist for liver disorders for a 2nd opinion. That was how I was diagnosed.

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