Fibroscan norm?

[Sdone]

After some very stressful weeks/ months my liver scan was normal. I had a ama at 90, so they had started me on urso too early. Does the fibroscan mean I do not have pbc? Do i take urso? What other causes raise ama?

[Ktltel]

Sdone,

Glad the stress is over!! Usually you need "2" markers to make a PBC diagnosis. An elevated AMA M2 and an elevated liver enzyme or enzymes.

For me it was an elevated AMA M2 of 42 and an elevated alk-phos of 148. According to my hepatologist, my biopsy, ERCP, CT, and MRCP results put me in early stage 1 PBC.

I'm having a fibroscan in February. I've been on URSO since last March, so about 8 months. Nothing has changed really. I have acquired 2 more AI's. But they do run in packs. 😔

If they suspect PBC, then the earlier you're started on URSO the better. Was it ONLY your AMA M2 that was elevated and nothing else? Or did you have other symptoms?

Stella ❤

[Sdone in reply to Ktltel]

❤️❤️❤️Bless you Stella for your response. I send healing hugs your way! Several months back my ast and alt elevated and ama m2. 2 months later present time all normal including an ana that had been elwvated. Currently just an Ama m2 with severe bouts of fatigue, occasional liver pain with heavy meals or meats. Mainly bad leg muscle spasms about same time as first elevated liver reads. Spasms remain.

I do not know if potentially 5 months of antibiotics could have caused ama abnormalities as it seems last it was high 5 years ago, i had been taking tylenol for pain.

[Ktltel in reply to Sdone]

❤❤❤ Back at ya!! Stay in touch with your doctors. To me, it sounds like you're just on the fringes of a PBC diagnosis. (Remember how 2 markers are needed for a PBC diagnosis)

If you're taking URSO, it could have very well stabilized your LFT's which is fabulous!! Going off of it might be risky... but only because you've had elevated LFT's in the past along with a positive AMA M2. Either way, if it is PBC it sounds like its caught early which is really good. Stay on top it. Let us know how you get on.

PBC can be managed. It most always progresses very slowly in most cases. Hopefully they will get things figured out. ❤

Stella

[Ottley3]

I’m so glad your liver scan was normal -meaning no damage! Huge positive. Word of caution is my fibroscan was normal but blood test and biopsy concluded pbc. Def discuss with your doctor if urso is an option. Good luck

[Sdone in reply to Ottley3]

Thank you very much!

[gwillistexas]

Sdone...positive AMA is strong indicator of PBC. Not trying to be politically correct, but my personal GI said he needed no further labs to diagnose it. All research will tell you, most people with PBC display elevated AMA’s.

[Sdone in reply to gwillistexas]

I appreciate your help, thank you!

[GrittyReads in reply to gwillistexas]

Hi Gwillis,

I would check the 'PBC Foundation' site for their recent 8-page summary-guide of the longer, official/formal, medical diagnosis guidelines, agreed for UK/US/Eu consultants dealing with PBC.

AMAs alone are not enough for a diagnosis of PBC - although regular lfts must be taken - ever after - in case PBC develops. About 10% of the UK population just 'have' AMAs (blood donor statistics) and the vast majority never go on to develop PBC.

It has been known that I have AMAs since 1992 - possibly all my life - and I still do not have PBC, with no signs or symptoms of it at all, and I am in very good health. There are quite a few other people in the same situation as me, here on the 'PBC Foundation' website. I just have annual lfts - all still perfect.

Relatively recently, I saw one the UK's/world's leading PBC specialists, after a new-to-me GP panicked over the AMAs and sent me to a local, general liver consultant. This consultant tried to diagnose me as 'pre-symptomatic- PBC' (which is a vague general staging description, but not an official diagnosis). I eventually chose to go to see the leading PBC consultant when insurance companies quibbled about this unofficial diagnosis, plus my usual GP insisted I did not have PBC, just AMAs.

It was then the leading PBC Consultant who told me about the numbers who have AMAs. He also had me take all possible tests for PBC, liver health etc. He also talked to me in detail about my current health, medical history and my family history.

He said I am in perfect health for my age, don't have PBC, and that I will almost certainly never develop PBC after all this time. He also said, quite forcibly, that he is completely opposed to the use of Urso without the presence of fully confirmed/diagnosed PBC.

Hope this helps.

[gwillistexas in reply to GrittyReads]

GrittyReads...yes, I do understand what you’re saying. As I said, I do have positive AMA-M2 & elevated Alp. I’m not totally symptom free, little fatigue & ache in urq but not every day. However, I did save the 28 page link but I do need to try & read the one you’re speaking of. Thanks for your help.

[GrittyReads in reply to gwillistexas]

Okay, obviously that explains things.

I was worried because you report your GI as saying 'he needed no further labs to diagnose it'. I thought you meant that he would diagnose PBC just on AMAs, and therefore was worried that this was your situation .... ...but also that others read would read this and assume that AMAs automatically means PBC.

Thanks for responding and clarifying , you take care.

Gritty.

[gwillistexas in reply to GrittyReads]

Yes ma’am. Internist hoped once I came off statin, the enzymes would go back to normal but they didn’t. That’s when the sent labs to pathological lab in Austin, TX for more in depth testing. Thank you for your concern❣️

[Ballymahon2 in reply to GrittyReads]

Thanks gritty reads your information is a great help

[Sdone in reply to GrittyReads]

So vital to my quest right now, thank you

[Ballymahon2]

The hepatologist i attend has told me not to take urso until pbc is confirmed

There should be a definite diagnosis of pbc before taking urso

Thats what i have been told by the hepatologist and they should know

[Sdone in reply to Ballymahon2]

Thank u❤️

[Ballymahon2]

Its important sdone that you see a hepatologist

[GrittyReads]

Sdone, I agree with Ballymahon, try to see a Hepatologist.