Concerned with possibility of PBC

[LyndeeKay]

Hello, I had routine labs drawn recently that revealed an elevated ALP at 246. My PCP then ordered a GGT, Hep Panel, and AMA. The Hep panel was negative but my AMA & GGT were both elevated. I was referred to a Gastro doc but had to see his FNP. She did not seem concerned with my elevated enzymes but did order an ANA. She recommended I follow up in 6 months to repeat labs. She did not offer an explanation of why my enzymes would be elevated and I'm terribly concerned with the possibility of PBC. I feel I need a second opinion but since most specialist require referrals, I'm not sure what to do. Is waiting 6 months and repeating the labs seem fair and reasonable?

[jane1964]

Hello I have written a reply on the liver forum, but in short I would want a second opinion if it were me as pbc is rare many gastro doctors don't have sufficient experience and the chances of a FNP having sufficient knowledge are low in my opinion.You need a referral to a hepatologist who specializes in pbc and has experience in it review you.

Jane

[LyndeeKay in reply to jane1964]

Thank you Jane. I'm convinced I should see a hepatologist. I will speak with my primary doctor and ask for a referral. I hope they agree and get me in with the right doctor.

[Juamcc in reply to jane1964]

You need to see a hepatoligist.

[Juamcc]

I thought Ama test is the definite for PBC. mitochondria

[LyndeeKay in reply to Juamcc]

I did too. However, the Nurse practitioner I saw at the GI office didn't seem too concerned. She said my PCP should have ordered an ANA because the ANA was more specific to auto immune disease. I'm confused and convinced she is not familiar with PBC.

[Juamcc]

I think a positive mitochondrial outcome is it a definite sign of autoimmune PBC.

[Hidden in reply to Juamcc]

Hi Juamcc,

It is the AMA M2 Serum that is highly specific for PBC - just an elevated AMA indicates the presence of a disease of some sort. See link below:

mayomedicallaboratories.com...

[LyndeeKay in reply to Hidden]

Hi, yes it was an AMA M2 that came back positive for me.

[Belliver]

Hi Lyndeekay, from the tests that are being ordered, ANA, sounds like some sort of immune issue may be considered--- call the gastroenterologist back & tell them you want a referral to a Hepatologist, then try your PCP, --- sometimes referral faster from gastroenterologist. Get copies of all blood work, etc, to take with you to dr appointments, sometimes records not forwarded promptly. Good luck!

[LyndeeKay]

I received a call this morning from my gastroenterologist. my ANA was positive as well.He said he suspects it to be PBC. I have a follow up scheduled for January. For all of those diagnosed with PBC, what questions should I ask?