Positive AMA went down to normal

[selinihun]

Hello everyone,

So my doctor diagnosed me with pbc but never put me on urso because my bilirubin was not elevated. She decided to get my labs checked monthly. My AMA was still positive for the first two months, but now it is normal. Whats does this mean? Do I not have pbc?

[ninjagirlwebb]

What are your other #’s? LFT’s, ggt, alk phos, immugloubin g & m?

What did she used to diagnose you?

[selinihun in reply to ninjagirlwebb]

My AST and ALT went from 60 to around 400 and then to back around 100. My albumin and bilirubin are normal. My GGT is 34. Alk phos is normal and immunoglobulin G is 1373 and A is 328. I was not tested for Immunoglobulin M.

She diagnosed me with my elevated liver enzymes and AMA M2 positive .

[ninjagirlwebb in reply to selinihun]

I think my hepatologist would put you on urso based on your numbers. My doctor doesn't focus on the bibilrubin. He looks at alk phos & LFT’s for monitoring.

If you have pbc, you should be put on urso to slow its progress. I was put on it once I was diagnosed. I had all the blood work done and a biopsy.

[ninjagirlwebb]

Is your doctor a hepatologist or a GI who is knowledgeable about pbc? If not, I would go for a hepatologist for a 2nd opinion. Bring all your tests to show them.

[butterflyEi]

Hi selinihun

I am guessing that you are in America? From a previous post you have suggested that you are not confident with your current doctor. Is there any chance that you can get a second opinion from a Hepatologist. When I was first diagnosed back in 2006 the doctor told me that I was asymptomatic and I had a biopsy to confirm diagnosis.

Blood test results can fluctuate which may be why you are having your labs checked monthly, it is a good idea to keep copies of your blood test results so that you can make comparisons over the years to come.

You can always contact the PBC Foundation directly, via email, telephone or skype depending on where you are in the world for some guidance.

hope this is of some help to you

best wishes

[GrittyReads]

I agree with above comments. Try to get a second opinion, preferably from a PBC specialist, or at least a Hepatolagist skilled in PBC work. You will need to keep having bloods monitored, as well as being tested for all other possible causes, as well as PBC. From what you describe your current doctor does not seem to be adhering to current best practice in diagnosing PBC. There have been great advances in recent years, and in the UK a comprehensive and official/formal diagnostic schedule for PBC was devised by all leading PBC consultants.

I would also contact the 'PBC Foundation' and talk to their trained advisors, as well as checking out their site, thoroughly. There is a summary of the diagnostic guidelines on the site.

Hope this helps.

Take care.

[selinihun in reply to GrittyReads]

Hi GrittyReads ,

Thank you for your reply. I am seeing a hepatologist this Friday actually. Could you send me a link to the diagnostic guidelines on the site? I was unable to find them.

Thank you

Selinihun

[ninjagirlwebb in reply to selinihun]

This is the American one:

aasld.org/sites/default/fil...

There’s an European one on the pbc org site which also has questions that you should ask your hepatologist.

Good Luck!

[GrittyReads in reply to selinihun]

Hi, I've just had a quick look and although there is a small example of the EASL guidelines shown in the section 'About PBC' on the section of the 'PBC F' website that is generally available to non-members, I think it may be that you cannot see the entire document unless you are a member. I know the document was reproduced, recently, in a slightly simplified form (still 8 pages!) in the 'PBC F' magazine: 'Bear Facts', but to lookat the back copies on the site, you do need to join.

You can do this simply from the 'PBC F' website, and once you have emailed them, they will send you a password so that you can then 'log in' to the main site, which includes all the back copies of the mag, as well as lots of info.

Sorry about any initial misinformation, it is a while since I have visited the site (as I have my own copies of most stuff at home) and its organisation and layout is quite different, now.

Take care, G

[LorraineLouise]

My bilirubin has always been in normal range. I still have Pbc based on liver biopsy and elevated all phas.