Getting my m2 antibody retested? Still in pain

Hi everyone

I tested positive a few weeks ago for the mitochondrial m2 antibody test. And my primary dr disgnosed me with pbc. When i saw my g.i specialist he said he wants to retest my blood and get an ultrasound. I am not sure what to think do i have it or not? When i had my gallbladder removed March 10th, 2016 i also had a liver biopsy done and that was normal. Since my surgery i was okay eating anything i wanted then out of No where i get this upper right quadrant pain as well as lower right quadrant pain. I keep having pain as if i still have my gallbladder. Ive been extremely fatigued and weak. I had to quit my job and Since then haven't left my house. In scared cause of the pain. I had a ctscan, ultrasound, and xray also bloodwork done at the ER and of course everything was normal. They say it was gatritis. I didn't really eat these past days just soup and crackers as I'm scared to eat anything. Has anyone felt this?

Nervous. Anxiety. Pain. Please help. Thank you.

8 Replies

  • Hello nessarose174.

    I was diagnosed in December 2010 and it was due to symptons (itching and fatigue at the time) plus higher than normal liver function test (LFTs) and then it was found I had a 'high titre' (measure) of the AMAs (anti-mitochondrial antibodies). I am in the Uk and if these 3 factors are there, PBC can be diagnosed without the need for a biopsy.

    Usually a liver biopsy can give a PBC diagnosis due to cell changes that are throughout the liver.

    We can have PBC with normal LFTs as I probably did when I first developed PBC (in my case the consultant reckoned it had started a few years prior to starting to itch early 2010).

    It has to be noted that there are other liver conditions that can give the same symptons and it sounds as if your doctor is in doubt as to a definite diagnosis. Urso I take for PBC tends to just be given for PBC patients (though it was originally marketed for dissolution of cholesterol formed gallstones) and I think your doctor wants to check other factors as it could well be that treatment might be different.

    We can get a shoulder ache with PBC (and I expect anything due to liver trauma) which is said to be liver inflammation and the cause of this is said to be due to nerve that runs down that side of the body how we fell the ache. Apparently some who have a biopsy can feel a sudden sharp shoulder pain at the point of the needle impacting.

    Your pain could be due to after-effects of gallbladder removal that might take some time to settle down. I can't say for certain but as I look at it perhaps it is a case of the body readjusting to a system minus a gallbladder (I still have mine). Could be early days for you following surgery.

    Have you tried eating little and often. Personally I'd opt to have a low fat diet in your situation and build back up to a normal diet. Fats cannot be cut out completely as we need some for the fat soluble vitamins as it is said that with PBC we can have less absorption of them.

    Hope you get your answers and that you start to get back on to the road to recovery as I think once you know exactly what is wrong, it is far easier to start accepting and then you can get on with living life again.

  • Hi nessarose 714

    I had my gall bladder removed on March 8th 2016. I had been diagnosed with an inflamed gall bladder in November 2015. This was as a result of presenting to my Gp with the severe pain on the right hand side of my abdomen. My blood test at that time showed that I had raised bilrupin that indicated jaundice. It was thought at that time that the gall bladder was infected and stones were causing an obstruction which affected the results of my liver test. Before I had the op I had a further 2 blood tests, and since then I had about another 3 tests. I have been advised by the Consultant who performed the Gall bladder surgery that the tests he had done confirmed slightly elevated liver function tests indicated a type of inflammation of the bile duct which could have contributed to me forming gallstones in the first place.

    In July I went to see a gastroenterologist who diagnosed pbc and gave be a prescription for Urso. Before the initial diagnosis of the inflamed gall bladder I had experienced tiredeness, indigestion, and itchiness. I had however self-diagnosed these things as being linked to my menstrual cycle. I guess I had just become use to feeling like that.

    In terms of diet, when I got the pain before my gall bladder was removed I started to eat lower fat foods. I have maintained this since the surgery. However I have noticed that my appetite has really gone, so have been losing weight and generally feeling lacking in energy. As for the pain in the right hand quadrant I have experienced a less severe version of this occasionally. I am wondering whether this is just part of the recovery, as it is not that long ago since our operations.

    Maybe like you I had hoped that once I had the gall bladder removed that my health would be much improved. It did take me quite a while to recover after surgery and finding out that there is something else seems to have delayed my recovery.

    I think it is probably good that you are having further tests to confirm your diagnosis. I think Peridot's good advice about diet and finding out exactly what is wrong to aid your recovery, is something that I would echo.

    I have not finished working but I am concerned as I did take recovery time off after surgery, and then returned to work. I have now taken some further time from work to get my head around this and to adapt to taking medication.

    I hope you get the answers you need from the tests. Please let me know how you get on. X

  • Hi Nessarose714,

    As I said in reply to your last post, just having the AMA M2 antibody does not absolutely mean you have PBC. For a formal / official diagnosis of PBC (according to US/Eu/UK guidelines) you usually need to have M2 AMAs, as well as abnormal (blood) liver function tests. If one of these is absent (particularly if you have symptoms of PBC eg: fatigue, itching, aching joints, brain fog) then they will most likely do a biopsy to confirm PBC, or not, and to check on the liver in general.

    As others have said (in previous replies to your earlier posts) the levels of AMA are not indicative of the severity of PBC, nor of whether you do absolutely have PBC or not: the important criteria are AMAs 'and' abnormal lfts (my consultant is most concerned with the levels of GGT and ALP, although others such as ALT and AST are also checked alongside many other bloods).

    Did you manage to get copies of your blood tests? Why not email these to the advisors at the PBC Foundation ? Have you had an ultrasound, and been retested yet, or are you still waiting for that?? Ultrasound is largely done to rule out other problems - it cannot diagnose PBC, although if there is scarring this can be detected - so it's a useful to have one done. AMAs are not usually retested, so I'm surprised at this, unless they are checking for other sub-types of AMA.

    Maybe they are double checking about PBC, and other conditions that have similar effects or symptoms, as well as trying to rule any or all of these out. Meanwhile, a lot of your pain and digestive upset may be because you are obviously so stressed. I know it's easier said than done, but I think you need to treat yourself, spoil yourself, do things that you really love and enjoy, and have some fun: lots of smiles and laughs and doing things to take you mind off this worry.

    Also, some gentle exercise (again, things you like doing) and maybe get some dietary advice. Just soup and crackers for an extended time does not seem a good idea. Try smaller meals more frequently, low fat, but varied and make it a relaxed, enjoyable time.

    Keep letting us know how you get on, meanwhile, try not to spend your time with 'what ifs'. PBC is not a death sentence if you do get it, most people manage just fine, and otherwise it's best to have it - and other things - checked and ruled out.

    Take care. xx

  • Hi Nessarose,

    I have been positive for AMA M2, and recently tested negative for overall AMA. I understand what your going through when your in pain that's not normal and you gotta try to figure out what's causing it. My liver biopsy showed negative for PBC and positive for mild fatty liver and all gallbladder tests were normal. My pcp said that mild fatty liver shouldn't cause pain and that he himself probably had one cause he drinks. Then proceeded to tell me my problems were from depression, but I'm not really depressed except some blue days before period starts, which is probably normal. Anyway, liver biopsy aren't a 100% in early stages and except for increase in enzymes like ALP its a waiting game. Sometimes, they say other autoimmune diseases could cause the elevation in AMA but not sure if that applies necessarily to M2's. The rheumatologist I seen recently said it could. I was feeling really good that day too and chalked it up to supplements that I was taking and started to feel like crap again after the appointment. Just a suggestion but I would ask for a biopsy and if they could get more than one sample from different areas providing that's it not too risky. Something to ask your dr. about, maybe. Are your enzymes increased at all? I'm confused by it all sometimes too. My sisters ultrasound showed her liver was fatty, but it's not enlarged. My liver was enlarged and doesn't mention it looking fatty on US but biopsy shows mild fat. So, if It's only mildly fatty then why is it enlarged? I have insulin resistance so I know that's a factor and hope that the increase in pain isn't from a worsening fatty liver or something else. Pain is not normal and you are right to search it out. It also may not be what you think. Hold your dr. to finding out what it is and don't except that crap that's all in your head, but also be open to the fact it could be something else. It just has to make sense. Good luck!

  • Thank you. I got a call today from my g.i he had retested my m2 im not sure why maybe he thought it was wrong the first time but i still tested positive. So he wants to see me tomorrow morning to talk. Im nervous but then im like what can i do. Every doctor thinks im nuts saying i have pain and they can't find a cause. Pain that doesn't stop. I will see what he says tomorrow. I don't know what to think anymore i feel hopeless.

  • I certainly, know what you mean. Mine feels like I'm bruised there in the front and back and under ribs, and other times it feels more like a pinching pain. It's worse when I'm sitting or laying down and better when I'm up and moving. My first diagnosis was Gerd many years ago it was more frontal then and at first I thought that's what was causing the pain, but it wasn't. Please let us know how your appointment goes. Hopefully, you can get some answers soon. It can be a process sometimes. I wish you well. 😊

  • I hope you find an answer. I have pain in upper right quadrant and lower right abdomen too. Dr tested me for all sorts of things colonoscopy endoscopy h pylori. All they found so far is diverticulosis and colon polyps. It's frustrating to have pain and not know why. I also have gas bloating severe constipation blood in stools and hypo thyroid. My liver function tests were normal. I don't know what an ama test is or if they did that. I also have APS Hughes syndrome but no clotting yet. I hope you get some relief. Try not to worry too much. Easier said than done. Stay well

  • Nessarose, I too had pain and had to have my gall bladder removed in the 90s. I think. Then within three days of that went right back to the \ pain as if I had the gallbladder still. No one could ever figure it out. I did read somewhere after the gallbladder is removed you will still produce bile in the liver to help dissolve the fat but sometimes your body is slower to do that or does it to fast and that creates some pain and in some cases the runs as well. I did the back and forth thing off and on the years and then told I had irritable bowel syndrome. So hang in there. They did question at one time that I might have a stone in the duct but ultrasound proved that not to be the case. Try not to worry to much. Make them prove a diagnosis and not give you the run around and don't be afraid to get a 2nd opinion or change doctors.

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