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Candicelynnc profile image
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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

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Candicelynnc profile image
Candicelynnc
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10 Replies
HAAS profile image
HAAS

Hi

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

Candicelynnc profile image
Candicelynnc

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

HAAS profile image
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 profile image
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 profile image
Candicelynnc in reply to ninjagirlwebb

My GGT was extremely high.

ninjagirlwebb profile image
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 profile image
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 profile image
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 profile image
MissusTee

Autoimmune hepatitis?

Candicelynnc profile image
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.

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