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PBC Foundation
6,614 members • 5,737 posts

Do I have PBC?

I have had a long history of digestive issues, beginning when I was a young child. So I will not get into the full blown out story.

But in Nov. of 2011 I began having upper left abdominal pain right under my rib cage sometimes just barely noticable other times very painful and uncomfortable, the area even swells sometimes and makes it uncomfortable to wear a bra. I also started having severe diarhea. And was always tired. If I did not know better, I would have said it was my gall bladder but I had it removed a few years back.

Went to a GI doc and he did a colonoscpy and endoscopy and found nothing major. One rectal ulcer and some irritation thoughtout my colon. Did biopsies and all came back negative.

Did some blood work to rule out IBS and Celiac Disease. Which it did. CBC showed low potassium, which was not the first time it has been low, and I was already taking OTC potassium supplement. So he put me on RX strength potassium.

I then had a CT scan done which showed sign of fat on my liver and subtle surface irregularity that raised the question of cirrhosis.

So I then had an ultrasound done and more blood work. The ultrasound showed my liver to be slightly enlarged with fatty infiltration.

LFTs were pretty much normal except for slightly high UIBC and slightly low Iron Saturation.

ANA was negative. Actin Antibody was negative.

Mitochondrial Antibody was positive. Positive being over 24.9 and mine was 56.1

My over all Cholestrol was slightly elevated and my Trigycerides were significantly high.

My GI says all test show nothing significant and nothing to worry about, and just follow up in a few months, to recheck potassium and see how meds he put me on for diarrhea is working.

But I want answers! And think these results are significant.

Any advice would be appreciated. Thanks in advance.

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11 Replies
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Hi tigermom02,

I wish I had something useful to tell you. I don't know if you have PBC, but it sounds possible. I can tell you that in my case, I had several negative blood tests before I finally got a positive result for PBC, so blood tests can sometimes be wrong. I hope you get some answers soon!

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Thanks. I am planning on trying to get second opinion. Hopefully a different doc will have some answers. I have done quite a bit of reading on PBC and I have several of the symptoms, so like you I think it is possible. Part of me hopes I do, because at least then I would have an answer to my health issues.

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I think you must demnd a referal to a pbcliver specialist. It sounds likely you have pbc. Good luck and keep usall informed.

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That is my thought as well. and hoping I can do just that. :)

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The AMA antibody is definitely an indicator. There are blood tests they can do to tell and if there remains any doubt you have a biopsy to confirm/stage etc

I would go for a second opinion if I was you. Good Luck :)

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Thanks! That is what I was thinking from all my reading and research. But my present Gastro doc does not seem to think so.

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Normally if you have a positive result for the AMA (anti-mitochondria antibodies) then that is usually sufficient along with any symptons to diagnose PBC but I'm only going off my diagnose.

Back in early 2010 I presented to the GP with itching and some fatigue (only night time itch these days) and after series of blood tests over a few mths., a scan and then finally the AMA in Nov 2010 I was diagnosed Dec 2010 with PBC.

Also it can be normal for anyone with a liver condition and especially PBC to have higher cholesterol levels. I have read that it is usually the LDL think it is (the better one) as there is also HDLs. But given urso is used for the dissolution of cholesterol gallstones, it does aid in breaking up cholesterol once one is taking urso.

If you are on medications as I think you did state then they can have some effect on certain things I expect (ie differing blood results).

It does sound like you could have PBC but without you speaking to a consultant who specialises in the liver I obviously cannot say. Have you been given urso at all? Just wondered as you didn't mention as if you already have then it would point to the fact that you had been given for PBC.

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No I have not been given urso. My current Gastro doc seems to think I do not have it although I show signs and symptoms of PBC and tested positive for AMA.

I am on Welchol to slow down bowel movements, Prilosec for acid reflux, and a new drug Lidila that is supposed to aid in healing my irritated colon, I also take an assortment of OTC vitamins and fiber.

I am going to try to get an appt set up with another doctor today that hopefully specializes in PBC.

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Hi,just to mention HDL (High Density Lipids) are good fats and LDL (Low Density Lipids) are bad fats.

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Thanks

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Thanks for the input from all. I have made an appt with a new gastro doc and will be seeing him for a second opinion next week.

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