New

[Candicelynnc]

I was worked up for PBC a year ago. Had inconclusive results with Gastroenterologist but my Primary care md is concerned for high alkaline phosphotase (6 times normal high) etc. AMA negative and biopsy showed portal inflammation. Urso didn’t lower alp much so was discontinued. Now have very watery diarrhea for several weeks. Pain under right ribs and cramps. No gallbladder

Anyone able to relate? Help

[HAAS]

Hi

Candicelynnc, you said AMA was negative. What do you mean by negative? in the range between 0-20 what was yours?

[Candicelynnc]

I don’t know the range but I was verbally told it wasn’t postive. But, I have a high ANA

[HAAS in reply to Candicelynnc]

Hi

Candicelynnc, I am not a doctor but based on my research I dont think you have the PBC. You may have high ALP but it is not always the sign of a liver disease. Based on my doc, breastfeeding, thyroid complication can also raise ALP.

[ninjagirlwebb in reply to HAAS]

When it is thyroid related, abnormal AlK Phos is bone related per my endocrinologist. Did u test for ggt? GGT is more related to liver than bone/thyroid.

GGT explained:

healthline.com/health/gamma...

[Candicelynnc in reply to ninjagirlwebb]

My GGT was extremely high.

[ninjagirlwebb in reply to Candicelynnc]

You need to see a hepatologist to sort it out for you. It is the liver.

GGT blood levels are usually high when the liver is damaged. This test is often done with other tests that measure liver enzymes if there’s a possibility of liver damage.

[EileenUSA in reply to Candicelynnc]

Hi,

Research shows that 5% of PBC patients are negative for AMA. Maybe you are one of the 5%.

I hope you can get a consult with an experienced hepatologist. If they determine you have PBC and If URSO isn't effective maybe they will suggest Ocliva etc..

I hope you can get some good help.

[Candy12]

I agree with Eileen, you can have negative AMA, and still have pbc. I’d push for further investigation with a heptologist to get this sorted. Have a read of the PBC Foundation web site,it’s full of useful information.

[MissusTee]

Autoimmune hepatitis?

[Candicelynnc]

Checked for AIH; wasn’t that. Today my primary is calling the hepatologist I last saw. Wants CT, stool sample to start and hepatologist to figure out what else.