Equivocal Result on PBC

[rudi7834]

Hi, I had bloodwork done on 9/27 and my ALT and AST were slightly elevated, ALT 71 and AST 46. Did bloodwork again on 10/12 and ALT was 118 and AST was 71. My doctor referred me to a gastroenterologist. I had an ultrasound and it was normal, negative for hepatitis and autoimmune hepatitis. My M2 antibody was 21.8 which is equivocal. ANA was negative. The gastro said that because the ultrasound was negative, equivocal on M2 and ANA negative, that they would test all levels again on 12/1 and then go from there. I've been researching online and don't fully understand what this means. I'm wondering if anyone knows if its possible for the M2 to go down by 12/1. Or does this mean its likely that I'll end up with a positive result for PBC? I've been doing the Mediterranean diet since 10/12 so I'm hoping this could help bring those numbers down. Any advice is greatly appreciated.

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My primary doctor is also a gastroenterologist & when my LFT's fluctuated over a year or so, he sent me to a Hepatologist who convinced me to do a liver biopsy for diagnosis after he ran a comprehensive blood panel. The Hepatologist also had the sample slides sent to an expert for a 2nd opinion to diagnose the pbc.

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Biopsies are the gold standard to diagnose pbc...that was what the Hepatologist explained.

[rudi7834 in reply to Hidden]

Thanks, I’ll ask her about it when I go for results in December. Equivocal is very confusing to me. She did say at 21.8, I’m closer to negative then positive. But I’m wondering if those numbers can go up or down.

[Hidden]

I wish I could find it for you, but I read this entire medical research paper on diagnosing PBC when I was first diagnosed. I read all the medical research out there on the condition & that was the best paper I read that gave me a better understanding of pbc. When I saw the Hepatologist, I had him explained the passages I highlighted. He was impressed that I read it & said that was the one research paper that doctors follow to diagnose pbc. It was devastating when you first find out, but I felt better once I take charge of the situation. It will be fine...just find a caring, attentive, & knowledgeable specialist doctor to worry on your behalf. They will do their jobs, monitoring your liver panel, other related issues. Yours is to keep a healthy lifestyle, try not to stress as that makes autoimmune conditions worse (per my doctor). Keep a list of all your questions & take them with you at your appointment & let the doctor answer the questions.

Don't worry...use that time to plan how you will deal with this & engage your doctor so that you can work as a team.

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PBC Diagnosis

Abnormalities on laboratory studies include the following:

Significant elevations of the alkaline phosphatase (ALP), γ-glutamyl transpeptidase (GGTP), and immunoglobulin levels (mainly IgM): Usually the most prominent findings

Elevation of the aminotransferases alanine aminotransferase (ALT) and aspartate aminotransferase (AST)

Increased lipid and cholesterol levels, with an increased HDL fraction

Increased erythrocyte sedimentation rate

Elevated bilirubin level, prolonged prothrombin time, and decreased albumin level: Indicate progression of disease to cirrhosis

Thrombocytopenia: Indicates portal hypertension

Antinuclear antibodies (ANAs): Can be identified in 20-50% of patients with PBC

Less common abnormalities include elevated levels of the following:

Ceruloplasmin

Bile acids

Serum hyaluronate

The hallmark of PBC is the presence of antimitochondrial antibodies (AMAs) in serum. AMAs can be found in 90-95% of patients with PBC, and they have a specificity of 98% for this disease. Four AMA profiles occur:

Profile A: Positive for anti-M9 only

Profile B: Anti-M9 and/or anti-M2–positive by ELISA

Profile C: Anti-M2, anti-M4, and/or anti-M8–positive by ELISA

Profile D: Anti-M2, anti-M4, and/or anti-M8–positive by ELISA and complement-fixation test

Patients with profile A or B have a better disease course than patients with profile C or D.

Some patients have clinical, biochemical, and histologic features of PBC, but their sera are negative for AMA. The diagnosis of autoimmune cholangitis has been used for these patients.

[teddybear7]

I was positive on ama & alp increase. For my diagnosis. I'm also ana positive but that's nothing to do with PBC actual diagnosis. X

[GrittyReads]

Talk to the 'PBC Foundation' (UK based) who host this site - link at top of the page for contact details - phone and email. Their advisors are wonderful.

They also have a magazine 'Bear Facts' (I think it's all online, if you join the 'PBC F' - it's free). The last copy had an 8-page summary of recent high-level medical discussions, that led to the tightening up of the official/formal agreements on the exact diagnosis pathway for PBC (Eu/UK and US, I think). The official document is longer, but they also have a link to that.

It has been done partly because a lot of GPs / Drs & other medics , and even consultants (especially gastros and more ... non-specialised liver consultants) are confused about the official pathway and criteria for the diagnosis of PBC. For most people it is AMAs (subtype: AMA-M2) and abnormal levels of certain liver function tests (lfts), ALP and GGT, plus often ALT & AST seeming to be the most common.

However, medics should also rule out all other possible Liver conditions, and all other autoimmune illnesses caused by the other sub-types of AMA, and generally just other autoimmune conditions, as well, as people with one, often have others.

I would ask to see a Liver specialist, and preferably a PBC consultant.

Hope this helps.

[rudi7834]

Thanks so much everyone for the information. I’ll contact PBC foundation. I’ll post again when I have an update.

[Dwaffle16]

So did you get retestested on 12/1. If yes, what was the outcome?

[rudi7834 in reply to Dwaffle16]

Yes, I was retested I’m 12/1 and this time AMA M2 was negative. My AST and ALT are still elevated but ALP is and always has been normal. Doctor is hoping it’s a medication that I’m taking that’s making ALT and AST elevated. The only thing I take is armour thyroid and acyclovir for shingles and fever blisters. I’ve taken acyclovir for many years, just a couple of pills a week to keep me from getting shingles and fever blisters. Earlier this year, my gynecologist told me to just take one pill everyday because I was having flare ups. Looking back, that’s when my liver levels started going up. I stopped taking acyclovir on 12/12. They test again on 1/12 to see if levels have come down. I’m praying they will! Thanks so much for asking!

[Dwaffle16 in reply to rudi7834]

I am glad you now tested negative. I am kind of in the same situation. I also tested equivocal at 24.3 and am anxious to get retested at some point. My ALP has been slightly elevated for over a year (150 to 163 normal range less than 115) while other LFTs have been normal.

[rudi7834 in reply to Dwaffle16]

It’s scary! But I’ve learned so much from this page and everyone is so encouraging and supportive. They didn’t give me the negative number this time which makes me a little nervous, I’m a number person. I wanted to see how much it went down. I requested that they retest AMA again just to make sure. I feel like it’s something that I’ll want to monitor over time and not just forget about. Has your doctor said they’ll retest you again?

[Dwaffle16 in reply to rudi7834]

The test was done by my general practitioner. People have suggested that I go to a specialist such as a Gastro dr or hepatologist. I am going to make calls tomorrow and hopefully get an appointment soon. I am going to ask then to have it retested

[rudi7834 in reply to Dwaffle16]

Oh, ok. My endocrinologist found the elevated liver levels and referred me to gastro who did AMA testing. Keep me posted! I hope everything turns out ok for you!

[Dwaffle16 in reply to rudi7834]

Thanks and I will let you know which way my equivocal result goes.

[Ancolie in reply to Dwaffle16]

Hi Dwaffle 16, did you get a result as to know if you have PBC ?