Unsure if I have PBC, can you help me?

[Tfein]

Hi there,

I have never written on a forum like this. For the past 7 months I have felt unwell. Symptoms vary and have evolved. Sometimes lightheadedness. I have stomach aches, pain in the center of my abdomen above my belly button and then up between my ribs. Pain under my right rib at times and in my back. A sore throat. I am itchy. A few months ago my alt and ast were elevated and then went back down immediately (a few days later I had more blood work). I have been to nearly every specialist and I’ve had a ton of blood work and numerous scans (ultrasounds, hyda scan, fibroscan, cat scan, mri, colonoscopy, endoscopy). My liver enzymes are normal. I am not AMA positive. I am having mild fat malabsorption. I am scared, it’s been 7 months and no answers. Is it possible for me to have PBC with this itch, even though my liver enzymes are normal?

[Tfein]

Oh, my bilirubin was elevated to 2 and then went back down (I had testing the following week). The dr. Is call that Gilbert.

[Hidden in reply to Tfein]

Doesn't sound like you have PBC and looking at the tests you have mentioned, you have had a lot more than I did back in 2010 when I wa diagnosed with PBC. I started itching 24/7 and it was very intense. My GP (I am in the UK) took blood and found the liver function test (LFTs) to be higher than normal. He asked me about my lifestyle, was I an alcohol drinker (hardly, just the occasion like Christmas, odd birthdays, etc) and he had my records so knew I'd not had any prescribed medications since 1999. He asked about over-the-counter medications (rarely buy still). I started having regular repeats of the bloods which were slowly climbing each check.

A few months later I had a scan after my GP had ruled out a lot of other things that can be liver-associated (ie Wilson's Disease) and he determined with the bloods that it was liver related and not bone (you can have raised LFTs with a bone disorder).

I never really thought about what could be up as I just thought my current lifestyle of working far too long hours and rushing about were causing it. I never thought about being fatigued at the time, it was my GP who mentioned when I said I was falling asleep as soon as I got in the door early evening and it was hard to wake me.

My final blood check at the hospital when I saw the doctor in Hepatology Clinic was antibodies checks. He went through the ultrasound I had several months prior and said my liver looked normal and he could at the time see clear bile ducts. My antibodies check came back with positive high measure for AMAs but negative for ANAs (not sure what the latter mean). I was diagnosed with PBC.

Given there are a lot of liver conditions and I am no doctor so don't know what LFTs are in those cases I cannot say.

PBC can present with normal LFTs that may or may not eventually start to rise but the only route there is for this if you've had the standard checks is a liver biopsy that will determine PBC due to liver cell changes that are throughout the liver. I've never had one as PBC with symptons can be diagnosed without and in the UK a biopsy isn't standard regardless.

[Tfein in reply to Hidden]

I am so sorry for your experience. My symptoms don’t make sense to me, and apparently not to the groups of dr’s I’ve seen. I have seen two hepatologists who don’t think the problem is with my liver. I am still not so convinced. Because of some symptoms.

[dianekjs]

Hi, I’m sorry you’re dealing with all of this. To answer your main question, no, you don’t have PBC if your liver enzymes are normal and you are AMA negative. The primary early symptoms of PBC are usually itching and fatigue. Pain in the regions you mention are not really characteristic of the disease. For a PBC diagnosis, 2 of the following 3 things must be abnormal: LFTs, AMA, or a liver biopsy. A biopsy is not needed since the other two tests are normal. What about your ANA, is it also negative?

[Tfein in reply to dianekjs]

I am Ana positive 1:120.

I do have itching and I get fatigued. Dr’s are calling me a medical mystery and it’s frustrating and makes me lose faith in the medical community.

[Zelda5 in reply to Tfein]

Ana is also associated with other types of autoimmune liver diseases. Although, I would think it’d be higher. Have they checked your thyroid

[dianekjs in reply to Tfein]

Tfein , 1:120 isn't an ANA titer, did you mean 1:160? ANA titers run 1:40, 1:80, 1:160, 1:320, 1:640, 1:1280, 1:2560, etc. Have you had additional individual antibody testing done?

[Hidden in reply to dianekjs]

Not necessarily so re having AMAs. I think it was PBC Foundation newsletter I once read that 100% of diagnosed patients might not have a positive result for AMAs. Also when I was diagnosed I was informed I had to have a certain 'high tire' (measure) to be diagnosed but I did havae itching and fatigue at the time and my LFTs and GGT were higher than normal.

I think in the event a doctor has any doubt as to whether there is PBC present via blood tests a biopsy would be performed. This would have been my route back in 2010 if the antibodies hadn't been present.

I don't know what ANAs mean, mine were negative.

[dianekjs in reply to Hidden]

That's why I said that a diagnosis of PBC requires two out of three of the following: positive AMA, positive liver biopsy, or abnormal LFTs. If there is reason to suspect PBC but AMA is negative, then an abnormal liver biopsy and abnormal LFTs would be needed for a diagnosis.

[Hidden]

"Sometimes lightheadedness. I have stomach aches, pain in the center of my abdomen above my belly button and then up between my ribs. Pain under my right rib at times and in my back. A sore throat. "

I have experienced all of the above at one time or another since dx w/PBC twenty years ago. It was especially bad prior to my gallbladder attack. I don't know how they check for gallbladder. Mine was an emergency surgery. Best Wishes.

[Tfein in reply to Hidden]

I have had my gallbladder checked several times, the doctors say it looks fine, and they also say my liver is fine. The only reason I really question that is the because of the itching. But my lft’s are all normal.

[Hidden in reply to Tfein]

I've probably had pbc thirty years. My LFTs are great, but I still itch sometimes. It may go away for awhile, but always comes back. Before my biopsy and diagnosis of pbc, I was sent to a pain clinic for the itching and then one doctor wanted me to see a psychiatrist. That's where I drew the line. Doctors don't always know. Maybe you should see another doctor.

[Tfein in reply to Hidden]

I’ve seen SO many doctors—-2 hepatologists, 4 gp’s, many er dr’s, endocrinologist, gastroenterologist, dermatologist, allergist, rheumatologist, nephrologist, gynecologist, integrative medicine dr—-I’ve seen all of these in search for answers in the past 7 months. They call me a medical mystery. Were your lft’s elevated before you were diagnosed? Is that what led to a diagnosis?

[gwillistexas in reply to Tfein]

My ALP was elevated & also positive AMA M2. I was diagnosed on those results. Both were pretty high.

[Hidden in reply to Tfein]

No, it was the itching and then my dermatologist was at his wits end and suggested checking my LFTs. They were elevated and a subsequent liver biopsy showed very early stage PBC.

[Tfein in reply to Hidden]

Did you have positive ama’s when diagnosed?