PBC Diagnosis: I’m hoping someone can provide... - PBC Foundation

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PBC Diagnosis

Pamcakes718
Pamcakes718

I’m hoping someone can provide some insight. I have had elevated ALP for the last 4 months. It was at 240 immediately following a thyroidectomy but as of yesterday is now down to 160. I saw a hepatologist yesterday and she explained that because I tested positive for AMA, it is likely early PBC. I know when you have a positive AMA, you are likely to develop PBC, but I feel like with the medication roller coaster I have had this year (cardiac ablation for aflutter), many meds including antidepressants, I’m not convinced that the elevated ALP is due to PBC. It seems to be coming down on its own. I also had a normal fibroscan this week and no other strange bloodwork other than a slightly elevated AST. Is it possible that while I am likely to develop PBC, I don’t have it yet? From what I’ve read, with PBC ALP seems to continue to elevate vs decrease this substantially. My doctor said we’d retest in 4 months. Any thoughts would be appreciated!

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It is possible for the thyroid to throw things off. Best to repeat the tests. AMA’s alone do not indicate pbc. Some people just have them without any conditions.

A fibroscan only tests on how elastic your liver is, it can’t be used to detect pbc. It is a tool for those already pbc diagnosed to baseline liver elasticity.

Think if your LFT’s & alk phos go back to normal over an extended amount of time, you might be fine.

But really, trust in your doctors to figure it out for you. I had a hard time believing my doctors & it took a while for me to be diagnosed because nothing was clear cut. Thank goodness for persistent doctors who “badgered” me to do what was needed.

Stay well.

Thanks for the response. I have a hard time waiting for test results and do a lot of self diagnosing. I specifically asked my doctor if she was diagnosing me with PBC and she said no...so now it’s a waiting game I suppose. I wish this was more clear cut!

If you are going to research, only read reliable scientific sources like from the pbc foundation or American Liver Foundation.

There is nothing to fret about until you do more tests. My hepatologist told me pbc patients who are diagnosed early & respond to meds have the same life expectancy as the average person. The only thing is that you have to be on meds. He said think of the meds as vitamins.

Hope this helps.

It sounds like you've had a lot going on that might complicate diagnosis. I'd definitely follow up with your doctor's recommendation of retesting in four months, and try not to worry too much. Easier said than done - but if you have PBC, know that it is usually very slow to progress, and it sounds like you've had enough testing done to know that it would be early stage. Regarding ALP - I've been diagnosed with PBC for over 7 years and my ALP has never been above 82 - even when I wasn't yet on ursodiol, but had the diagnosis. Yes, it's more typical to have elevated ALP with a PBC diagnosis, but it's also possible not to. In my case, my ALT and AST aren't optimal (either at the upper end of the normal range or just over). I am still early stage per a recent fibroscan, and originally diagnosed at stage 0. Good luck with everything.

The first Hepatologist, I went to said that the liver function numbers can go up for many reasons and it could be related to antibiotics or some other anomaly. Her advice was to wait, and monitor for 6 months (before going on Urso) to see if the liver function tests went down on their own. (My ALK and GGT were high, as well as a positive AMA). I am in all other areas very healthy, and did not and still do not have fatigue or itchy skin or any symptoms of PBC.

Unfortunately the liver function tests went down and then up, so I started Urso and now they are all good. (took about 3 months after starting Urso to get back to normal levels).

I think you are right to question if you have PBC. If you can wait, as your doctor said, and retest in 4 months, i would do that. Actually the Hepatologist said that sometimes her other patients showed high or abnormal test after antibiotics for up to a year. Oopps, maybe I should have insisted on waiting longer before going on Urso. (I had antibiotics for a UTI, so we thought that may have caused the elevated LFT's).

I have been on Urso for 15 months now. Still not sure if I have PBC. Not convinced my tiredness is fatigue or just tired from doing to much, and I have only had one time of itchy skin and it was short lived. Joint pain in my knees or it is arthritis? and my cholesterol is going up.

They say, many times PBC is diagnosed without symptoms, so maybe I do have it.

All the best with your search for advice and answers and a knowledgeable doctor.

Viv

Are you on any antihistamines? I was on phenergan for a while, and my lft's normalised after I stopped taking them.

That’s interesting. Up until Nov I had been taking Zyrtec daily. My highest ALP was in Sept at 240. I stopped taking the allergy meds about 6 weeks ago. Now my ALP is 161. I wonder if that could be part of this.

Quite possibly. It happened to a work's colleague's partner, and she said that his elevated lft's normalised after he stopped talking them. I did the same and then mine normalised too. It's worth doing a little research on!

Do you recall how elevated your numbers were?

Not exactly, but the alk phos was in the 200's, and the aminotransferase was up slightly. My GGT was elevated and remains elevated, so make sure that they test that, as well as the immunoglobulin Igm, which is positive in PBC.

Thanks. My IgM is in range. Hoping everything else comes into range as well.

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