I went to the er with sternum pains for 4 days straight. They did some blood work and found my liver enzymes elevated at 400 and my alkaline phosphatase elevated at 250. the er doctor tells me to go see my pcm. so a week later we retest my blood work and everything is even higher, phosphatase went up over 450. he tests me for ama, ana, and all the heps. only ama m2 was positive. so i go to a gastro specialist and we resets blood work again and all my enzymes are normal. (this was all within 3 weeks).. my gastro doctor said i prob just had food poisoning, even though there were no symptoms of it.... he said possibly pbc, because of the ama positive but because my enzymes were leveled its most likely a false positive and not to worry. has this happened to anyone else? im not super worried, but i just don't want to ignore it either until i know for sure its nothing. the exhaustion is killing meeeee but my gastro dr said its prob just overworked. also went to my eye doctor and he said my eyes are severely dry. when i told my gastro he just told me it was because i wear contacts and to use more drops...
ama positive, but normal liver enzymes now. - PBC Foundation
ama positive, but normal liver enzymes now.
Thank you x
If possible I would insist on seeing an actual liver specialist - if you are in the US I know it's different and (I think) gastros more often do the work that hepatologists generally do here in the UK.
If you have AMAs M2, and lfts were high, then that's typical of PBC. However, if lfts have gone back to normal, I would expect them to keep on monitoring you closely. If you already have Lupus, that suggests you are at risk of autoimmune conditions, and the eye dryness could Sjorgrens Syndrome, which is commonly associated with PBC.
If your gastro is not intending to keep monitoring you, I would try to see someone else. I hope he's right and you don't have PBC, but with AMAs alone you should have annual checks, and your high liver enzymes - I'm sure - warrant more frequent checks.
Talk to the PBC Foundation, link at the top of this page.
Yes I will definitely be asking to see a liver specialist. I'd rather know if anything is wrong now than later. -- no history of lupus or any health concerns which is why I'm mostly concerned.
I would see a liver doctor for a second opinion better to be safe than sorry right, let us know what they say good luck.
Did the gastro retest AMA M2? and it came back negative?
If you are not sure, you can request a copy of your lab results, from your pcm and the gastro.
No he gastro said it's still too early to retest. The m2 (that was positive 34) was done less than 2 weeks ago. (2 days. Before the normal enzyme results -alt, ast). My gastro just keeps saying food poisoning but it just doesn't make sense to me that my AMA would be positive too:s
You have a good point. I think I would want to repeat AMA testing to be sure, and perhaps waiting a few months is a good idea, too.
It is possible that it is nothing to worry about, but you are right to want to follow up on it to be sure. Hopefully your doctor will agree to schedule a retest sometime in the near future.
Just having AMAs M2 is not enough for a diagnosis of PBC, and - apparently - the level of the AMAs is also not taken as guide to the likelihood or severity of PBC. About 10% of the population just have AMAs, and most never develop PBC. However, once AMAs have been noticed, annual lfts should be done - for life - and should be more closely monitored in cases such as yours where your lfts were high, or if there are any symptoms of PBC (fatigue, itching, muscle and joint aches, etc). If lfts are abnormal with AMAs that's usually enough for a diagnosis of PBC, but as your lfts have gone back to normal, I would expect them to investigate much more, and keep rechecking lfts for a while. Talk to the PBC foundation people, they may know more about the lesser symptoms and the incidence of PBC and Sjorgrens - if that is what is happening with your eyes.
NB I would expect an Optician to know about Sjorgren's, and recognise it.
thank you of the info. it puts my mind to ease a bit. The only symptom i have is extreme fatigue and the dry eyes but other than that I'm good to go symptom wise. yea my optician for the past year has been telling me my eyes have been dry but i just had an appt a week ago where he mentioned that they are extremely dry and i need to up my eye drops. and he'd note it... I'm figuring I'm fine its just on my mind lately and not having a real answer bugs me.
Hello, can you please tell me where you read that 10% of the normal population has AMAs in their blood? I received a reading of 1:20 a few weeks ago and haven't had any specialist opinion yet, but I've spent countless hours researching everything I can find about AMAs. Everything I've read has said that less than 1% of the population has AMAs in their blood, apart from one 1982 study which claimed that 1.6% of people have them.
My country is in lockdown so I haven't heard back from anyone, and have been in a state of constant anxiety that I may have PBC. I would love to know where you got the 10% figure, because it contradicts absolutely everything I've read. Thankyou in advance.
I don't want to cause any increased anxiety but there are more than one reason your lfts were elevated. Do not allow that doctor to blow off your concerns. They are valid and need to be explored deeper. I myself have been dealing with abnormal liver enzymes that at first was initiatelly diagnosed as Sarcoidosis of the liver. After having 2 years of treatment by a rheumatologist with Imuran and Remacaide was then told by gastro doc he doesn't know what's causing my pain or my elevated liver enzymes. He was just about ready to tell me to go home and not worry about it when I asked him why every time I have severe pain in my abd my liver enzymes were elevated over 400. He then decided to do an ERCP and found my common bile duct to be 4 times the size of a normal one and my sphincter of oddi extremely tight. He cut open the sphincter and supposedly this should fix my pain and elevated enzymes. Well 4 weeks out and I continue with the bloating, belching and ruq abd pain after eating. Long story short I fired him and am awaiting my appointment with a hepatologist. I was just so tired of him minimizing my pain and test results. I felt like because I wasn't fitting into an easy category for him so he decided that he would just blow me off. No skin off his back when I come back in a year with liver failure that could have been fixed or delayed. So I would strongly suggest that your elevation in liver enzymes are a result of whatever process is causing your abd pain. Do you still have your gallbladder? A gallstone stuck in one of your bile ducts causes pain and elevated enzymes. In between attacks the enzymes will return to normal or near normal. No matter what is causing it, you need to demand that they look until you have all your answers.
I actually spoke to my insurance today and are being referred to a hepatologist instead of the gastro doctor I had seen. When I went to the er for my pains they checked for gallstones and apparently none. My enzymes were over 400 and my phosphatase 388 plus inflammation etc. I definitely feel like the guy was doing what your doctor did and just try to blow it off because he doesn't know. There was a reason for every thing I had mentioned down to vitamins i was taking🙄 I'm understand some things will throw your body out of wack but the fact that it wasn't just my enzymes and there were multiple things elevated or positive is what bothers me.
hi. i do still have my gallbladder. i have an mri set for next friday so hopefully that can answer or confirm some questions. my doctor seems to not have any idea whats going on. i just set an appointment wirth an actual liver specialist but won't be seeing her until mid december. i got bloodworm back yesterday and nowwww I'm positive for hep a, and have an extremely high ebv iGg (387) --- the doctor said he thinks i had mono and hep a.. but 1.5 weeks ago i had a hep a test and it was negative and 2 weeks ago they tested for mono and that was negative too. soooo i have no idea. he's not worried about the ama m2 at all either. thankfully i haven't had any more pains in the last 2 weeks, but the dry eyes and extreme tiredness. which could be associated with mono from what the doc said. so well see~~!!! thank you for the info! and i definitely will keep pushing on for an answer to all of this.
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