LFT normal but AMA and ANA positive, sorry long post..

[AmaraDubh]

Hello All,

Totally new to this forum and kinda wanting some general advice. So sorry for the long post!.

I recently went into hospital with peripheral neuropathy, severe fatigue, joint pain, abdominal bloating and a few other bits (oh the joys).

I had a whole barrage of tests for everything from MS, arthritis, celiac disease you name it and the rheumatologist sent for autoimmune antibody tests.

The tests came back with AMA and ANA positive. I was called in by a GI specialist who just casually mentioned PBC. Didn't give me the results, didn't send them to my GP either.

They didn't examine me or ask for my symptoms, I didn't know anything about PBC at the time. At the time of the appointment I had uncontrollable itching and thought it might be medication.

I had been put on Gabapentin for the peripheral neuropathy to calm it down waiting for further investigation.

They immediately put me on Urso, but then said they weren't going to follow up with me at all, but said my GP can do LFTs every 12 months.

My GP isn't happy about it and is sending me for a second opinion to a Hepatologist.

I had been getting regular LFTs as I'm on Valdoxan, and the results have all come back normal.

Any one have a similar situation?.

[Lauralee851]

Hi,

Yes I found out I was AMA and ANA positive many years ago. Also had arthritis query rheumatoid etc. my LFT’s go up and down but are mainly normal. I had to go on Urso when I was pregnant with my second child as I got obstetric cholestasis but apart from that I’m all good. However the difference is I have seen my specialist regularly ever since. Usually yearly but it went to 3/6 monthly depending on how bad my LFTs were such as when I got obstetric cholestasis. You should be seen, it is odd him doing that. I’m 37, 2 children, business owner, probably had the positive AMA ten years ago now and I’m fine-so positive story for you 😁

Take care,

Laura

[AmaraDubh in reply to Lauralee851]

Hey Laura,

I'm 32, so I was thinking it was maybe my age that made the GI maybe not take it all that seriously. I think my GP has done the right thing with the second opinion either way.

After doing some research it does seem I have symptoms of PBC and Arthritis so could be either or both really.

I'm hoping that the LFTs coming back ok means I don't need to worry at the moment, I guess I'll just have to wait and see.

I've put in a request for my results so I can bring it to the appointment with the Hepatologist.

Thanks for your reply,

Amara

[JubileePenny]

I was diagnosed about 15 years ago by a specialist and went back to him monthly until my liver panel tests had stabilized. That took about 6 months. He then told my GP that she should watch for hypothyroid (which did develop), and I should have an abdominal scan every 2 or 3 years, but that he thought I would respond well to the Urso. That has been the case. I go for blood tests every year or six months depending on what else is going on. My only symptoms at the time of diagnosis were elevated liver enzymes. There were a number of letters between the specialist and my GP at the time I was diagnosed. Good luck with your situation.

[JubileePenny in reply to JubileePenny]

I should add that at the time of diagnosis, I had a whole lot of tests and I think the ones you mentioned, AMA, ANA, are the ones that determine the diagnosis. Liver enzymes alone are not enough.

[AmaraDubh in reply to JubileePenny]

Hey! I've been doing some research and I agree with you that one test result isn't enough for a diagnosis.

Yeah I guess my only concern is that some people suggest that you need a clear diagnosis before Urso is prescribed. And my GI prescribed it as soon as he saw I was itching but didn't ask me anymore questions about my symptoms though.

Also I see when you start treatment you need frequent LFT's in the first year but my GI just told me my GP can do a LFT once a year!

My GP is great though we've set up our own plan to do LFT's more frequently.

I guess I just have to hope the Hepatologist is at least more thorough.

Thanks for replying,

Amara

[JubileePenny]

After diagnosis, the monthly blood work was done to monitor my elevated liver enzyme numbers to ensure that the ursodial dosage was bringing them toward the normal range.

Before I went to the specialist, my GP tested me for hepatitis. They also ruled out fatty liver as a cause. I was immediately taken off HRT which I had taken for a number of years.

The definitive test, I believe is the AMA. Plus you had the itching which is also an indicator. Abnormal ALP enzymes are indicative which was what happened to me first. I also had chronic fatigue.

I have read that abnormal bilirubin numbers indicate when things become more serious.

I think your GP should be able to give you the information you need. I only saw the specialist a couple of times, but all subsequent blood work and several letters were sent by him to my GP. When my liver enzymes had stabilized, he sent a final letter to my GP saying he thought I would do well on the ursodial and to watch for low thyroid.

When I was first diagnosed, I found the Scottish PBC organization on line, and they saved me a lot of anxiety by mailing me a brochure, which explained a lot more than either specialist or GP told me.

You seem to feel that the diagnosis is not correct and it's causing you anxiety.

[JubileePenny]

Correction - I didn't go back to the specialist monthly, I had a standing order at the lab

for monthly blood work for about 6 months and that information went to the specialist and my GP.