Positive mitochondrial antibodies m2 but normal liver enzymes

[Ladysmith53]

Hi members, just after a bit of advice please. I have hashimoto's and due to blood tests which were requested by my endocrinologist, positive mitochondrial antibodies m2 were found which he says could mean it is primary biliary cholangitis. I went for an ultrasound and I am due to have a consultation with heptology in July, but there has been a letter suggesting that because my liver enzymes are normal and liver looks normal on ultrasound, it probably isn't pbc. What I would like to know is there any questions I should be asking when I have the consultation please, Thank you in advance 😊

[DonnaBoll Administrator]

In most cases 3 tests should be used for a PBC diagnosis. In over 95% of people this is enough.

1.blood test for the AMA antibody - it is almost never seen in people who don't have PBC

2. blood test for liver function - a liver panel. Of this panel the alkaline phosphatase is what is important to see if it's elevated. (ALK PHOS). This is an important part of monitoring if treatment for PBC is effective or not.

3. A liver biopsy -

If there are elevated liver enzymes and a + AMA, in most cases a biopsy is not needed.

Just make sure he does treat others with PBC. It is still considered a rare disease. Make sure you have an AMA blood test drawn again maybe if it's been awhile, as you said you've already had liver enzymes done. If there is any question about the diagnosis, many docs will repeat the liver panel every 3-6 months just to monitor for any elevation - especially if the AMA is positive. A liver biopsy, in my opinion, is not needed as you have normal enzymes. They are invasive and take only 1/50,000 of the liver's surface. I would question him if he suggests one with having done a AMA but with with normal enzymes. It is a slow disease. Waiting and repeating the liver panel several times is often done to see a trend.

I hope this all makes sense. I know it can be hard to be diagnosed but a AMA being positive is only part of the picture.

[Ladysmith53 in reply to DonnaBoll]

Thank you DonnaBoll that's very helpful. It was November last year I had the liver function bloods and received the +AMA result so I will ask if I can re-test. I've waited 7 months to get an appointment through with heptology and want to ensure I ask the right questions.

[periwinkle88]

Hi Ladysmith, you may just be very early stage if you have a positive AMA but your alkaline phos isn't yet elevated. That was my situation when I was diagnosed in 2012. I had just been diagnosed with Hashimoto's and my ALT and AST were hovering on either side of the high end of the normal range, but my alkaline phos was completely normal. My doctor tested me for AMA (among other things) which was positive. I had a liver biopsy which came back negative for PBC. I was told I'd likely develop PBC, with the high AMA, and to monitor my liver enzymes every three months. I hated the not knowing, so after a year I saw a hepatologist who has a lot of experience with PBC patients. I brought him the biopsy images and he was able to find one tiny speck near the edge that was hallmark PBC. This was confirmed by a pathologist. (The first pathologist had missed it.) I was told that I was very early stage. 12 plus years later, I'm still early stage. I believe going on urso early in the game has helped me remain early stage--one benefit of a diagnosis sooner than later. Good luck! It's hard to be in that in between place where you don't really know.

[Ladysmith53 in reply to periwinkle88]

Thank you periwinkle88 that's very reassuring. As you say, it's the not knowing. Do you only get prescribed Urso when levels start to rise?

[DonnaBoll Administrator in reply to Ladysmith53]

I think when PBC is even suspected getting on Urso is the key. It doesn't hurt anything to take it. I do know some doctors, though, won't start it without elevated enzymes. Talk to your doctor about it. That is why it's important to have those enzymes repeated every 3-6 months to monitor things. The Urso dose is always just based on your body weight - never lab results or symptoms. I know all too well how hard it is to wait... and seemingly do nothing. Being on Urso might make you feel better - and do no harm in the meantime.

[Ladysmith53 in reply to DonnaBoll]

Thank you DonnaBoll for the advice, it is much appreciated. I would feel happier taking the urso to catch it in the early stages if the consultant allows it, that is one of the questions I will ask aswell 👍

[DonnaBoll Administrator in reply to Ladysmith53]

absolutely -you are so welcome. I know how frustrating this all is. Taking Urso will do no harm in the meantime if it turns out you don't have PBC. For sure it's another question on your list. According to the Standard of Care labs should (for anyone) be repeated every 3-6 months.

[periwinkle88 in reply to Ladysmith53]

I was given the choice of taking urso or holding off after the PBC had been confirmed. I'm super sensitive to many things, including fillers in medications, and since my labs were good and I wasn't symptomatic, I actually held off for a couple of years and just monitored my labs every three months. My ALT crept up slightly during that time and I was so tired of the constant monitoring that I finally requested to start the urso. It turned out that I was fine with the inactive ingredients (a huge relief) and it brought my ALT and AST down. So, in retrospect, I should have just gone ahead with starting urso right away, but I was so early stage that it didn't matter much/any. PBC is so slow progressing in most that it turned out okay for me. But if I had to do it over I'd just start taking it as soon as I was able to.

[DonnaBoll Administrator in reply to periwinkle88]

You are so right about it being hard to get that diagnosis in the beginning. It does ,for many ,literally take years. Getting on Urso early is the key - you are right. It doesn't hurt anything and, like in your case, has kept your disease in check for several years.

[S1LK]

Hi Ladysmith53. I have an almost similar disease course as Periwinkle88, except that the first hepatologist chose to wait and retest every 3 months until he sees elevation in ALK PHOS to prescribe URSO. I went to a teaching hospital and the hepatologist immediately ordered a biopsy. She saw very early stage PBC and prescribed URSO immediately. I have normal (very low) liver labs and Fibroscan results ever since.

So the question to ask is , what is ‘normal’ results. If you have past results, look at the trend. My ALk PHOS was within the normal range but was trending higher than my usual results. My hepatologist who diagnosed me was glad I showed her my past results and asked her this question. She agreed that my liver numbers were not normal in my case. She thinks that my early diagnosis and treatment help slow down disease progression.

[Ladysmith53 in reply to S1LK]

Thank you so much S1LK I just want to be a bit knowledgeable when I have the consultation. Just had a look at ALK PHOS levels and it has gone from 51 to 63 in 2 years. But obviously it's still low and in the normal range.

[DonnaBoll Administrator in reply to Ladysmith53]

Your results are for sure in the normal range. Having a positive AMA though still makes you wonder, I know. I would still keep repeating those labs on a regular basis. Talk to him about starting Urso in the meantime. Might be beneficial for you to get Dr. Jones' book.

The Definitive Guide for Patients With Primary Biliary Cholangitis

Please let us know how the appointment goes for you. There is SO much information about PBC also on The PBC Foundation's website. I would encourage you to join the foundation - it's free. pbcfoundation.org/uk

[Ladysmith53 in reply to DonnaBoll]

Thank you for the book recommendation, I will order it. And I will come back on after my consultation in July and let you know what was said. I will also join the PBC foundation as all information is valuable. The thyroid uk forum was a godsend to me when I was diagnosed with hashimoto's. The members on there were more helpful than my doctor and I learned so much about the condition. Its comforting to know you are here to guide people through. Thank you ! 😊

[DonnaBoll Administrator in reply to Ladysmith53]

😊 I have been exactly where you are too many years ago. It is a learning process to say the least. Joining The PBC Foundation will be SO helpful. They also have a phone app available that's great too. All that information is on their website.