This afternoon I had my second appt. with my hepatic specialist. I am so confused and hoping some of you can chime in. Current labs are back and my two mitochondrial tests are still positive (titer is 1:80 and AB serum is positive), I have 3 positive AFP tests from two different labs and I just had an IGM come back positive. Today upon palpating, my liver was enlarged and tender. Despite all of this, he doesn't think I have PBC because my liver enzymes are normal and I don't have jaundice. ???!!!! So how do you explain the lab results and PBC symptoms?! MRI was also normal, but past ultrasound showed heterogenous fatty liver. He said my options were to just watch my liver enzymes, which by the way are freakishly low, or a biopsy. I chose the biopsy, because this not knowing one way or the other crap is getting ridiculous, and I don't think waiting to see if my liver enzymes will ever rise if the smart thing to do, when I have all of the positive labs. He said I made the right choice. He is blaming positive AMA tests on fatty liver and AFP tests on liver regeneration? I have had liver issues for year, though I do not drink at all. Thoughts? Thanks.
So confused, would love your opinions - PBC Foundation
So confused, would love your opinions
Ama test is not 100 % confirmatory for pbc. Three are m1 to m9 (mitochondrial1 to mitochondrial 9) in ama test and m2 is pbc specific..sometimes other autoimmune diseases can be ama positive as well. In order to confirm pbc you have to have physical symptoms as well like itching, fatigue, dry eyes and thyroid problem like that..
I think you have fatty liver as you said. Why don't you wait for 2 to 4 weeks and repeat hepatic panel and go from there.. hope it is not pbc..pbc sucks your life
Good luck !
Thanks. Looking back at the name on the tests, there are no numbers 1-9. It is only Mitochondrial AB Screen and Mitochondrial AB Titer. My first results were in February of this year and this last week, so plenty of time has gone by and te numbers/results have not changed. Thyroid wise, I was just diagnosed with Hashimoto's Disease, but have had hypothyroid like issues for the majority if my adult life. When things escalated last year I itched all time, but not as much currently. I do have occasional dry eyes, but feel it the mist when I cry. When I do, the tears burn horribly like acid in my eyes. Fatigue is non-stop and has been for 20 years.
Change the doctor and have another opinion I don't what else to say more..
Your biopsy should tell you one way or the other, it does seem to be the definitive diagnosis tool. So I would hang fire. I'm going through a bit of confusion too. My bloods have been good for two years now, although I am very symptomatic in other ways, chronic fatigue the itch etc. So my specialist is having second thoughts too. But I have never had the biopsy. Although I don't fancy having one I wish they would just do it instead of confusion xxx take care.
I have no real symptoms yet I have pbc
Although not always recommended a biopsy may be the definitive tool for diagnosis
I had one and it was confirmed
Ten years ago
I often ask do I really have pbc
Yes says my specialist
You'd better believe it!
And I do
you can have pbc and have normal liver functions.... so that's a strange thing for consult to say.
i had biopsy 19years ago and it showed patches of damage... but i needed to know as i was ill and couldn't work.
if you are getting bad symptoms it seems sensible to find out if its pbc or something else....
good luck. best wishes cazer.
plus if you are diagnosed you can go on ursodeoxycholic acid to slow the disease down.... your hep doc should know this.
Drinking alcohol has nothing to do with having PBC
So true
very true i don t drink alchohol at all but feel people think u do if u say u have pbc also when i first met my hep professor he did tezts and turnex round and z go home don t worry about it and have a nice glass of wine to chill u out
I agree with everyone here. Im stage 4 PBC with F3-F4 cirrhosis, stage 2 varicies, hypothyroidism, among other issues that this PBC has triggered. However, Im not jaundice 🤔. It seems that all of us PBC'ers are affected differently with the symptoms.
Best wishes & praying for you.
Stay strong❣️
Shannon
how do ul know what stage your at sorry to ask are u on urso imgoing for my first fiber scan in cpl eeeks ive had pbc 8 yrs now
G'morning. My GI will determine amount of scarring when I have fibroscan September 14th.
I found out I was at stage 4 when I ended up in the hospital due to puking blood from varicies I did not know I had yet. The varicies come once cirrhosis has started. My GI ordered a EGD which shows how much the varicies have grown. The there's a blood test called Fibrometer Virus that tells what stage the cirrhosis is in. This way you avoid the biopsy which at my stage would not be a good idea becsuse of the risk of bleeding.
I read with interest about this blood test. Can I ask what country you are in? I haven't heard of this before and am interested. I am one of those people whose biopsy was inconclusive - pbc or auto immune hepatitis. I'm being treated for pbc (mostly because I didn't want to take prednisone) and my liver tests are in the normal range. But although my doctor tells me that it means my liver is not being stressed if those levels look good, I keep reading that others are learning that their pbc is progressing despite normal readings - which is unnerving. I'm wondering if this blood test would be helpful.
Im in the U.S.A. Southern Indiana. This blood test hasn't been around for very long, but am thankful for it. I know at my stage all I can do is take the treatment & let my healthcare team do everything else.
Was your test called AMA or M2 or was it called Mitochrondial AB Serum or Titer. I am thinking in Europe it might be called AMA and here in the U.S. the others.
I have the AMA also, the Fibrometer Virus was only to find out what stage of cirrhosis Im in.
Here where I am a patient in the liver transplant clinic they diagnose PBC by; positive AMA and liver biopsy labs can be normal and you can still have PBC. I would get that biopsy asap. Let us know how you are doing on your journey.
thank u i shall have to check out my bloods results think they may be named something diff in uk not sure i have heard of AMA thanks
Yes & ive checked my lab results not finding "AMA" but ANA Cascade & mitochondrial. I'm in Texas. Have a blessed Sunday.
Thank you all. I will keep you updated.
Have any if you had something called a Fibroscan? One of the members in my liver group said it's more accurate than a biopsy and obviously non-invasive,
Hello. I am scheduled for a fibroscan September 14th. My GI chose it versus biopsy. He feels very confident with the scan to determine amount of scarring & so he will have a baseline. Said will repeat in 1 year to check progress of scarring.
My wife has had several Fibroscans over the past few years and the results have been thankfully very good.
The Fibroscan is a non invasive procedure and is more accurate than a biopsy. From the first diagnosis we were discouraged from having a biopsy as the results only reflect the are of the liver biopsied and this can be misleading in a good or bad way, there is also the risk of a serious liver bleed.
We have had several lead consultants over the past 10 years as we have relocated 3 times due to work, all 3 have expressed the opinion that the fibroscan gives the more accurate picture of total liver condition.
Amen! Exactly what my GI said👍
Mine doctor wants to do a biopsy to see if I have PBC or not. Would the Fibroscan show that?
i was told fiberscan more accurate less invasive if u have biopsy they can t gurantee it will get a bit of damaged liver
They do a liver biopsy to also rule out other liver diseases too not just to diagnose the PBC, you can have other liver disease with PBC so they need to treat those too.
Well, I'm sure the dr makes his determination after he reviews labs.
That is definitely one of the tests, my labs were only slightly elevated and normal alk phos I thank GOD everyday they do a biopsy I was already at stage 2.
Hope you do well. Take care😊
thank u i am so confused with it all
Myself. Have never had a health issue. Now this. Like a brick in the face.
I am a responder to the URSO I am feeling better I take one day at a time and stay positive, just wish there was more research and attention to this rare disease.
You're lucky. I was on Urso 1 week & broke out in hives. Now waiting for approval on Oclavia.
Oh no sorry to hear that, I hope you are good on the Octavia, this is one of the reasons why I wish there was more research and funding for this disease more therapies and drugs would then follow right. Wish there was something we all could do?
Thank you. I'm praying it will be okay for me. Dr said scientists still don't know why PBC happens. Just happens. That's bad for us.
My doctor said they think it's a autoimmune disease , I also have Sjogrens and thyroid disease this is common from what I read to have one then others pop up so far I have 3 and Hemochromatosis another liver disease, I pray this is it for me but no guarantees right so I enjoy each day stay positive try to take care of my body eat healthy don't drink alcohol and meditate do yoga walk on my good days, some days too tired right.....
Sorry. I have had thyroid disease for many years. Partial thyroidectomy at age 14. At 22, the other portion became overactive so I took a dose of radioactive iodine to kill it. It has been a battle to keep levels right. Now, My lab results indicated autoimmune. GI says it targeted my liver. I tested negative for RA & hepatitis. Mitochondrial was too high. I lay awake st night wondering how to get through this. I give it to God. A lot of it is out of our hands. We just have to be strong & fight.
Yes i am with you, it's all in his hands nothing more we can do, pray and do what we can, when I first read your reply it sounded like Hashimotos disease. You have been through a lot too. I hope you get your med soon and can feel better.
My wish for you as well. Thank you!
Thanks nice talking with you see you on here again I am sure have a good night there.
Yes, I will be close by. Look forward to talking with you again.
i am partaking in research for this disease in a cpl of weeks in uk
Pls keep us posted. Best of luck to you😊
Latest from Bear Facts newsletter.....
"The Guidelines clarify that, if your blood tests are
showing a potential positive for PBC but you have no
PBC-specific antibodies it is still possible that you have
PBC. Around 10% of patients fall into this category.
To formally diagnose PBC, another diagnostic tool is
needed which, in this case, is a liver biopsy. This is one
of the few occasions you might need a liver biopsy for
diagnosis. You may be offered a biopsy later on in your
disease journey but that is for different reasons (see
Treatment section).
The guidelines note that in some cases, a test result will
show an AMA positive result whilst the liver blood test
comes back as negative.
‘Sometimes people with another condition will have a
blood test which shows that they carry the AMA for PBC,
whilst a liver blood test will be returned as negative,’
explains Professor Jones. ‘The guidelines make this
clear that in this case you do not have PBC. This means
that you do not have to declare the AMA test result to
anyone including insurance companies or any other
official body.
‘You certainly do not need a liver biopsy to rule out PBC
in this instance. However, there is a slight chance that
you may go on to develop PBC in the future and the
EASL Guidelines recommend following up with the usual
blood liver tests every year just to be sure."
Glad to see you are still here think you would be missed if you chose to not contribute anymore 🤗
Thanks. Do you happen to know what other diseases produce a positive AMA?
Google "positive AMA". Click the first link "labtestsonline ", will tell you what you're asking. Too many for me to name. 😊
Don't know if it makes difference but my browser is yahoo
Hi angelofeventide, nothing wrong with asking for a referral to another liver center/ hospital for a second opinion--- your current liver specialist must be able to get you seen by another Hepatologist for a second opinion. That you don't have jaundice is no criteria for ruling out PBC. Your MRI should show similar results to U/S - the fact that they don't is odd. Perhaps have those images of those studies reviewed by a radiologist that does a lot of gastric studies, important to remember that imaging studies are frequently a matter of interpretation, not like blood work that give numerical results. Is positive AFP really due to liver regeneration? Or perhaps some other gastrointestinal issue? If you are having a biopsy--is your current liver specialist doing it? Also , has Urso been prescribed for you?
mine mentioned a biopsy but thought the fiberscan more useful
I have a scan on Wednesday. I have alot of different symptoms. I just started Urso a few days ago. Has anyone had stomach ache with the Urso?
Hi, my doctor told me to be sure to have food when taking urso & also to take half the dose with breakfast , the other half with dinner. ( pill splitters are cheap & easiest way to cut pill in half). Also you may have a problem with the urso drug itself OR some of the fillers in the pill especially if you are taking a generic form
I don't mean to discourage you but in my case, a biopsy did not give me a definitive answer. My doctor had my slides sent to three different pathologists for their opinions - first the local guy, then two liver specialists. The samples were inconclusive - PBC or auto-immune hepatitis - or maybe both. The final specialist went with PBC and treatment with Ursodiol which is what I'm doing. It was what I was "hoping" for because I didn't like the sound of the treatment for A.I.H. I have had prednisone before for other issues and I hated how it made me feel. I can tolerate the Urso and my liver tests are now back in the normal range, but I do wonder if I'm really treating the correct disease. I wonder whether my liver disease might be getting worse and I don't know it. I found my liver biopsy to be very non-invasive and not bad at all. But I wonder if maybe it should be repeated with them taking a sample of a different section of the liver. Maybe they didn't biopsy the right area?
False positive AMA test result?
Confused 
Confused
Uncertain
Pbc suspected but no urso if normal liver biochemistry
