I'm new here!

[RobertaLynn]

Confused! So my journey started a couple months ago when blood work showed PBC. Had a liver biopsy and it showed no sign of PBC but fatty liver disease instead. I asked some questions over the phone to my gastro dr. but couldn't think of all to ask. He said I need to lose 10% of my weight in 12 months then test again and if blood work still shows PBC then he will treat me for that. Does that sound right? What should I ask him on Wednesday when I see him in person?

[Ballymahon2]

They say a biopsy is the gold standard with regard to diagnosis of pbc if the biopsy shows no sign of pbc i would be happy with that are your alk phosphates high i have started on urso but i have a probable diagnosis of pbc i have ama positive m2 negative my alps were elevated its all very confusing

I am attending a hepatologist

However if you have pbc it would be better to start treatment early

Your alp and ggt are important as far as i am aware with regard to pbc

I am new to all this

Hope all goes well for you

Some of the members are very knowledgeable and will be able to help you better

[RobertaLynn in reply to Ballymahon2]

My Alkaline Phosphatase are 49 units/L, so no, not high. ANA is positive. High Mitochondrial Antibody Screen.

[Ballymahon2 in reply to RobertaLynn]

I think for a diagnosis of pbc alps are high not low with fatty liver it is good to lose weight

[gwillistexas]

You might read up on fatty liver. I think I may have read that weight loss is helpful. I don’t have it so I can’t say.

[Ktltel]

Hi Robertalynn,

Nice to meet you 🙋.

That's almost exactly what happened to me. I had gastritis, went to GI and they did labs. This showed one of my liver function tests (ALP) was elevated along with my AMA-M2. Things can be different if you don't have elevated LFT's. So find out what your levels are. With me, after several tests and scans..an Ultrasound, CT, MRCP, ERCP and finally a biopsy (the biopsy was by a hepatologist), was performed. Dr. called me himself... He said "No signs of PBC but biopsy showed mild fatty liver."

This is where were different... My doctor started me on Ursodiol (medication for PBC) immediately. No wait and see protocol with him. This is because, according to him, PBC is a s l o w progressing autoimmune disease. The sooner you start on the medication when "signs" of the disease are present, the better.

Early diagnosis is what we ALL want IF we have to present with this disease at all!

I found this Healthunlocked forum too... What an answer to my prayers!! Really ❤. Like many of us on here, you'll find answers to your questions here and meet remarkable brave women, many who started out just like you and me or in similar ways.

This diagnosis spun my world around... but, the friends I've gained on this site calmed my anxiety, lifted my depression and literally gave me the ammunition in the form of information, that I need to face & accept this PBC and move forward.

Many doctors are not well educated where PBC is concerned. These doctors have that "Let's wait and see" attitude. I learned that on here. In that case, you really have to be your own health advocate. It sounds like you are 👍! Most of the time, having a raised liver function test(s) along with a positive AMA-M2 test is considered positive for PBC. Sometimes getting started on the medication right away has even leveled out the liver function tests (LFT's) of some. And that's wonderful!!

So, you've come to the right place. Sorry you have to be here at all. But trust me.... this is the right place ❤. Others, will chime in soon with advice and encouragement. Stick around, read all you can here in PBC city.. Lol. And keep us posted on how your doing and what you're doctor(s) are doing for you. We all learn from each other.

If you haven't already, join the PBC foundation above. There you'll get more information and other questions you may have answered too.

Stella ❤

[RobertaLynn in reply to Ktltel]

Stella (love that name!) wow, thank you so much!! I have been doing a lot of research and I feel like this website has been the best. So your dr. started you on URSO even though your biopsy showed no signs of PBC. Should I request that he starts me on URSO too? ANA was positive and the titer (I believe) came back speckled.

[Hidden in reply to RobertaLynn]

You need to see what the results are for the blood work he will order. Need to see where you are for LFT's, alk phos & bilirubin. Your doctor will make a judgment call based on this, particularly the alk Phos number.

Ask about the urso & whether he believes it will help your liver should the markers appear abnormal. Maybe you just have a fatty liver just like your biopsy says.

There's nothing to take for a fatty liver. You just have to be vigilant about maintaining a healthy diet.

Good Luck! 😊

[RobertaLynn in reply to Hidden]

He did order more bloodwork. Bilirubin was in the normal range and so was alk phos: 49 units/L (Normal range: 32-126 units/L).

[Hidden in reply to RobertaLynn]

I think you are fine. You don't seem to have pbc based on your biopsy & recent blood work. However, wait to see what your doctor says.

You can be ANA positive & never develop pbc. You should just be monitored. Not sure how the high mitochondrial antibodies fit in. Doctor might want to investigate for other autoimmune issues. Ask him if high mitochondrial antibody are a manifestation of fatty liver. Maybe you just have that.

Do you have abnormal LFT's? That can also be caused by fatty liver.

Best to discuss with your doctor.

[Ktltel]

Hi,

From what I understand, elevated liver function tests... AST, ALT, ALP, bilirubin, a positive AMA-M2 a "below" normal albumin.. those can be signs of PBC. I saw that your ALP was normal. That's great!! I don't know what a positive AMA-M2 means by itself though. Did you happen to ask your doctor if he/she has any other PBC patients or if he/she knows a lot about this disease? I asked my GI. She had 2 other patients with it. So she started me on Ursodiol right away and referred me to a hepatologist within a week but I couldn't get in to see him for 3 months.

I'd definitely ask more questions... What does a positive AMA-M2 and a positive ANA mean? How are your other LFT's? I know there is someone on this site who knows. ❤

Stella 🙋

[gwillistexas in reply to Ktltel]

ANA Cascade detects several other autoimmune diseases.

[Ballymahon2 in reply to Ktltel]

Ama m2 indicates pbc i have positive ama negative m2

However the hepatologist started me on urso based on my blood work

Doctors wont prescribe urso unless they are pretty sure it is pbc

Does positive ana not indicate AIH

[RobertaLynn in reply to Ktltel]

I keep seeing AMA on this site but am not seeing it on my bloodwork. Could it be called something else on my bloodwork? Is it Mitochondrial Antibody Screen? If so, that is showing high on my bloodwork.

[Ktltel in reply to RobertaLynn]

Robertalynn,

Yes...i believe that's it.

[Ballymahon2]

I am surprised you would have ama m2 and low alp maybe roberta lynn needs to get that blood test checked again

[GrittyReads]

Sorry this is so long, but the fine details of a formal PBC diagnosis cannot be summarised in one sentence. Please check out the 'PBC Foundation' website - link at top of the page, and read their summary of the recently - formally agreed - UK 'diagnostic criteria for PBC'. NB - I would make a copy of this and give it to your consultant. Or talk to the advisors at the 'PBC F', they are lovely.

To be 'formally / officially' diagnosed with PBC, you NEED to have 2 out of 3 diagnostic tests that show PBC.

The presence of AMAs (antimitochondrial antibodies) - even the sub-type AMA-M2, which codes for PBC (other subtypes, eg AMA-M1, code for other autoimmune conditions) - does NOT mean, by itself, that you have PBC.

AMA-M2 is 'one' of the 'indicators' or diagnostic factors for PBC, but on its own it is not enough for a diagnosis of PBC ... it just means you have AMAs! [I 'just' have AMAs-M2, and I have had them since 1992 (possibly all my life - some people 'just' have them). My old GP in Hull - who in 1992 first noted the AMAs on a blood test, sent me to see a hepatologist, who said I just had AMAs. After that, my GP just tested me for the other major feature of PBC, every year (that is raised blood tests for: ALP, GGT, maybe ALT, AST) because all I had was the AMAs. These have always been normal, although they do go up and down a bit - but always normal.

Then, a new-to-me- GP in Devon (I'd just moved area) panicked in 2007 and sent me to a new-to-me liver chap who said I didn't have PBC, but then he gave me a diagnosis of 'pre-symptomatic PBC' [NB: this is not 'officially/formally' recognised as a 'diagnosis'; it is not even a 'stage' of PBC, it is merely a descriptive term for an early phase of Stage 1, fully diagnosed PBC). I was not given urso or any other drugs, and initially life went on as before, with annual blood tests. However, because the bogus diagnosis was not recognised by insurance companies - who insisted on treating me as if I did have PBC, and refusing cover or charging the earth - I made a fuss with my regular GPs (who always agreed that I did not have PBC) and, a few years ago, I was able to have a referral to one of the UK's leading Hepatologists and experts on PBC.

After much testing, scanning, bloods etc, and checking, with a discussion of my family medical history and my health, he confirmed - absolutely- that I did/do not have PBC, and would probably never develop it. He told me that Blood Donor testing shows that about 10% of the population 'just' have AMAs, and that only about 1.5 - 2.0% of these ever go on to develop PBC.

In the UK, a new 'diagnostic' protocol was agreed, recently, by all leading PBC Specialists and all GPs, gastros, Liver specialists, hepatologists, PBC specialists etc. are supposed to follow it. As I said, see the 'PBC Foundation' website, for a summary.

For a diagnosis of PBC, 2 out of 3 diagnostic criteria must be present:

1) AMAs ...... and/or:

2) Abnormal blood / liver function tests - typical of PBC - often over a period of time ...... and/or:

3) A liver biopsy that shows damage to the microscopic biliary tubules in the liver, typical of PBC. (An ultrasound is not enough, as it can only show mass damage, not damage at a minute level).

A biopsy is the 'gold standard' test, but is not usually done if both 1) and 2) above are present. AMA-M2, plus abnormal levels of certain liver/bloods are enough for a diagnosis of PBC, but not just either one, on their own. If both 1 and 2 are positive, then your bloods should also be monitored for some time, about 6 months. Usually Urso will be prescribed - but not for AMAS alone. Your consultant should also be checking for all other autoimmune conditions and all other liver conditions.

The presence of AMAs should not lead to the assumption that anyone has PBC, until the official diagnostic procedure has been properly followed.

Hope this helps, above all, try not to worry and do keep on living your life and reducing stress - but, do insist on the diagnostic protocal being properly followed, and talk to the 'PBC F' advisors.

Take care,

Gritty

[RobertaLynn in reply to GrittyReads]

Thank you very much for this in depth reply, I really appreciate it! I see my gastroenterologist tomorrow and will be referring back to this forum for questions for him. Thank you!

[NotorDJP]

Hello. You didn't say if you are in the US or not, but I am. First off, this site, though I'm in the states, is so much better in my opinion than the one the US has. I look at both, but this one is much more encouraging. If I get closer to transplant, I will probably go there more to get more ideas of how that process works in the US. Now, back to your issue. I don't have much more to add than GrittyReads does. But what they said was right. Try not to worry. The liver is a very sensitive and reactive organ. Stress really does a number on it as much if not more than other organs like the heart, etc. I was diagnosed in 2014 at Stage 2. My ALP went down well but never normal on URSO, and then started rising up this past year a bit. I'm hoping that its just due my thyroid meds and weirdness on other things causing it to react and not a huge leap in my progression. I am having an upper GI in two weeks to look at a hernia I have and make sure I don't have Varices. I was anemic and they never found the reason, so they are just making sure. with PBC, if you do have it, you can't do anything about it but take the URSO and try to take care of yourself. So just do what the doctor says. Losing weight and eating well will help your liver if you have fatty liver or anything else. It won't stop the PBC, but It will make you more well, and that will help you in the long run. I hope everything turns out well for you and its just fatty liver. Now onto the positive ANA. I had a positive ANA when I was diagnosed and then it went away. My Rheumotologist told me that is common in liver disease and it can come and go. Mine came back again this time and he I also have Hashimotos (my thyroid removed) and MCTD. So you probably have autoimmune stuff going on that is going to make your body do weird things on tests. So again, take care of yourself and try to eat well and lower your inflammation as much as possible. Take care.

[JaneIng in reply to NotorDJP]

NotroDJP, what kind of thyroid meds are you on? Synthroid caused me elevated liver enzymes. I am back to normal after switching to Armour.

Best wishes,

Jane

[gwillistexas in reply to JaneIng]

I have 4 labs Thursday, thyroid included. If mine is still wacky I may mention trying Armour. Have been on levothyroxine for years & cant keep it balanced very long at a time. Will see.

[RobertaLynn in reply to NotorDJP]

Thank you so much for the reply! Yes, I am in the US, Michigan to be exact. This is all new and scary to me. I meet with my gastroenterologist tomorrow so hopefully I can get some more answers and this will all make more sense to me. I am definitely working on losing weight, I'm gonna try my best!

[Nboo]

Hi RobertaLynn, Any updates? My situation is similar to yours...