Hi I'm new here. I'm 50 years old, went for my annual physical and was told I have elevated liver enzymes. My AST is 52, ALT is 76 and Alkaline Phosphatase is 232. Mr. primary Dr. sent me for an ultrasound which showed normal liver size, veins and bile ducts. I more bloodwork and I my Mitochondrial AB titer was positive (1:40). Met with a gastro Dr. who sent me for a liver biopsy to confirm PBC. Biopsy results are in and the only thing it shows is mild chronic hepatitis stage 0 of 4. Dr. told me that based on all of this information, he "thinks" I "probably" have PBC. I'm confused as I thought the biopsy would give me clear cut answers as to whether or not I have this disease. He wants me to start taking the medications, but I'm looking for a second opinion. I have no symptoms besides the elevated enzymes, found during routine bloodwork. Has anyone else been diagnosed this way with similar numbers? I'm not comfortable taking meds I may not need. TY!
Uncertain: Hi I'm new here. I'm 50 years old... - PBC Foundation
Uncertain
Go see a hepatologist & ask to send the biopsy slides to another pathologist for a 2nd opinion, preferably someone in a world renowned teaching facility that is involved in a liver transplantation program.
Hi Jplitt,
Welcome to this site. Sorry you have to be here but, I think you've come to the right place!❤
It sounds like your doctors don't see many PBC cases. I say that because they only "think you may" have it, when your labs (to me) definitely look like it's PBC. Still, I'm no doctor. But I do have PBC.
I also have elevated LFT's, positive AMA-M2 and my biopsy only showed mild fatty liver 1 1/2 years ago. Also, not all doctors really know "everything they need too" about PBC. 2nd, with the labs you have, I would absolutely start the Ursodiol medication. Although PBC is a slow progressive disease (autoimmune disease), the Ursodiol slows the progression of the disease down even more. That's exactly what you want it to start doing.
I am my GI's 3rd PBC patient, and my hepatologist's 5th. Even then, we're all different. The medication though is the same. There are two medications for patients who have PBC. Ursodiol is one, and Ocaliva is another. Usually you start the Ursodiol and if after 6 months to a year your LFT's aren't any lower, they will add Ocaliva.
Also, biopsies are no longer the gold standard for a PBC diagnosis. A fibroscan or elastography show the texture of the liver, scarring etc. Ones have been staged more accurately by fibroscan/elastography. The reason for this is that our livers are big. The biggest organ in the body. A biopsy that is taken from one teeny tiny small side and section of that large organ isnt going to see the whole picture. The sample site that they take the biopsy from might not have any damage at all. Whereas another part of the liver may have the problems associated with PBC. So in my opinion biopsies are sort of a gamble. I'd push your docs to have you get a Fibroscan. And ultrasounds don't really show what's needed in order to make a diagnosis either. (I hope others chime in here if I'm wrong.) My Fibroscan is scheduled at the end of April. You have to be under a certain BMI in order for the Fibroscan to be accurate. (I'm overweight😔)
So, there you have it. I'm 58. My doctor thinks I've probably had PBC a while. I was diagnosed 10/10/16. I have arthritis too, dry eyes and mouth. These are other fun symptoms that are associated with PBC for some of us.
Nice to meet you. Give yourself some time to wrap your head around this. Read all you can here on this site. You'll learn more here than from your doctor. I've experienced that. ❤
Stella
Stella for some reason my GI Dr wouldn’t tell me that I definitely had it either. Robert told me that I have pbc and aih. My GI already prescribed the medication for pbc and the prednisone for aih. I told my GI Dr that I talked to the man who started the pbc foundation and he said that I have it. He still wouldn’t say. The Mayo Clinic had no problem diagnosing me with just blood work. It was you that told me to demand a biopsy. I was chatting with you while waiting for my GI dr. I don’t know why he wouldn’t diagnose me. But I did have to demand the biopsy.
Yes I remember Jenny,
And early on I believed in what my hepatologist told me too, that a biopsy would give the definitive answer.
Then I started talking to all the women on this site and learned that a biopsy was no longer the procedure for getting the whole picture. Women who were told they were in early stage PBC by biopsy were now having Fibroscans and finding out they were indeed further along in the disease. So sad and scary. I guess we are all learning as we go. Even my hepatologist finally agreed to my having a Fibroscan. I'll finally have it in April if I can lose enough weight.
Stella ❤
I gained 30 pounds taking prednisone. My face is lop sided. I read that the fibroscan is not as reliable as a fibroscan. That biopsy is still golden. I will not be surprised at all if my fibroscan stages me farther a long. I just don’t see me pulling through these diseases. I had blood work every month from oct 2016 to Jan 2017. January was when I was slightly elevated. My dr knew I didn’t do anything to cause the elevations. He redrew my blood and the enzymes was higher. I’m having so much liver pain I may go to ER. I just don’t know what they can do for me except offer me drugs.
Jenny,
I'm so sorry. I wonder if the pain is from PBC or the AIH? If you are in that much pain then you need to go and have it checked out. Hopefully they can stabilize things. ❤
I ate carrot cake with the frosting last night. I’m hoping it is that. My blood work came back perfect again. I heard that we can still progress even with perfect enzymes. My blood is perfect. Why I don’t know. My cholesterol is 208 but the other cholesterol is fine. No one is worried about my blood
It's so scary isn't it? Here I rely on those LFT numbers but in reality, many are in stage 3 with nearly normal LFT's. I really hate all this. 😔
I hear you. I went swimming for 3 days this week. I am so sick , my bones hurt from head to toe. Makes me sick to my stomach. I am so tired, i cant stand this. I just want to cry, because i feel so bad. I took a muscle relaxer, maybe that will help. I have been feeling pretty depressed, just cant seem to feel better. Thanks for the ear.
Sonogram rules out gall stones & other things that might be seen on the liver. It is an image of the liver & surrounding areas. Friboscan uses echo sound waves to see how elastic the liver is, meaures stiffness. It doesn’t give an image of liver. Biopsy helps to diagnose along with labs etc. All of these are tools to help manage & diagnose the condition.
I am in a similiar situation high lfts positive ama negative m2
Mild fibrosis
Hep has started me on urso based on bloods
Probable pbc
Just had first bloods since starting urso
Awaiting results
Hope levels come down
Its good it was found early and starting you on urso
Good luck
Will you have results soon?
Think next week
Positive AMA M2 & elevated Alk phos are enough to diagnose
Hi
Sorry to hear of your upset and uncertainty.
I know exactly how you are feeling. I’m a retired nurse practitioner, so when I was finally diagnosed I went through a number of different emotions. My medical background, experience and education added to my paranoia. But I feel being better educated about our diagnoses allows us to be the best advocates for ourselves. No one knows our bodies like we do. We live with it 24/7.
And as health professionals love to say, everyone is different. In my medical career, I have rarely saw , what we term “ a text book case” meaning that not every person has all the same symptoms that the text book describes and many have some that are not in the text book.
My suggestion would be to download the information available now on the PBC foundation website. It’s about 68 pages. But very informative and up to date information. Some of it maybe be hard to understand, but may help in answering questions you have, or may give you that “Aha moment” where you can say. “Yes that’s exactly how I’m feeling .
PBC has a slow progression. I’m 71 and although just recently diagnosed, I’ve had increased liver enzymes for many years. My doctors had no explanation for them and as I seem to have no symptoms, overlooked them . One said, he thought that it was normal for me.
I probably have had it for 25-30 years, and I am still here and that’s without any medication. But it has done its damage. I would have been much better off to have had it treated.
Not sure I’m helping, but thought I’d try. Diagnosis of chronic illness is always so scary. Just know you are not alone and research is helping more and more to understand this disease .
Hugs to you
Jeanette
I know this is not what you want to hear but twenty five years ago pnc was unheard of in the states. I was sent for a liver biopsy which turned out to be negative. Many more tests and finally a dr in nyc suggest I take urso. He said it only works on Pbc and if it lowers my enzymes them I have Pbc. Well three months later they were wsaaay down. I go for blood work every three mmoths and they have remained stable for over two decades at stage one. It was a shot in the dark and now that I have a Hepatologist familiar with the disease I am forever grateful for the gastroenterologist ‘s hunch. Bonnie
How does your doctor determine that it is still stage 1? Blood work, fibroscan, ultrasound, biopsy?
Thx
Blood work and biopsy. Now a days I’m in a test study in Miami and they do a fibroscan every year. They say excellent elasticity whatever that means and no chirosis
Excellent!
Remarkable! 👍😊
Have you done anything different or special to stay so stable? Your story is one we don’t hear a lot of. Very encouraging 🦋
I gave up sugar flour and wheat twenty years ago cause I was sluggish before they determined I had Pbc. I think I am lucky cause they caught it so early and the medicine worked
Yes ma’am, lucky you are. I pray the remainder of your journey with PBC is as blessed. Thank you for replying. 🙏🏻🌹
Welcome!!
First off, guidelines tell us that AMA+ plus raised Alk Phos is enough to diagnose PBC.
For a liver biopsy to confirm diagnosis, there needs to be enough of the right kind of liver damage for them to see. The good news is that if they couldn't see it, then there seems not to be a lot of liver damage (in that tiny sliver they took).
I don't have US stats, but around 60% of new diagnosees are found without symptoms these days.
So everything points to early PBC. That said, I am not medically trained, I am just using what I know of various guidelines in management of PBC. Your clinician would be the one to discuss that with you. I cannot, could not and will not diagnose your condition.
I hope that helps,
Robert.
Thank you for responding. My original alkaline phosphates were six hundred
After medication the went down to another 230
Here are current blood work stats over last five years. They increased urso from 1500 mg a day to 2000 cause my weight went up. Routine fibroscan next week
AST 52 down to 37
Alt. 76 down to 44
Alkphosphates 233 down to 157
Good progress. Do you have fibroscans yearly? I have had only one & will repeat in September.
Hi jplitt
I was diagnosed on the basis of mildly elevated liver enzymes and a low AMA antibody level. No biopsy but had a normal ultrasound. In fact my liver enzymes never even went above twice the upper limit of normal.
That was about 3 years ago. I was put on urso and my enzymes went back to normal and have continued to decrease since. I have no symptoms. My gastro tells me that urso usually halts progression of the disease and symptoms are unlikely to appear unless the disease ‘somehow changes’ (I was pressing for a reason that I might get sick!). I realise that a number of Pbc sufferers would disagree but my understanding is that urso is most effective when started early in the disease process.
One other thing, on my last blood test my gastro had noted ‘possible liver disease’. Could mean nothing, or might indicate that it’s just quite difficult to tell whether a patient does actually have the disease. AMA can be present in those without pbc and there are loads of reasons for elevated liver enzymes (although alp does suggest bile duct damage). Anyway, personally I prefer to be on urso and checked up on regularly ‘just in case’. Although I would rather not have pbc at all of course!
Hi jplitt,
I was diagnosed back in 2016. At that stage I'd been told I had tested positive for AMA M2. My ALP was slightly elevated but not dramatically so. However it was my GGT that was way over the norm. I'm not a huge drinker, just the odd glass of wine, so it was an odd one. A number of years ago something similar happened with my GGT but it reverted to normal so just a blip. My local GP (in UK) though was really on the ball and referred me immediately to a specialist Hepatologist who confirmed it was likely PBC. It does seem to be one of these conditions that requires a bit of a trend and supporting tests to confirm diagnosis. The norm in the UK tends to be an ultrasound and fibroscan rather than biopsy. As others say a biopsy is just a tiny piece from a large organ so can only tell you the condition of the organ at that specific area.
I was put on Urso right away and by the time I went back for my next check-up all my LFTs were back in the normal range (hurrah!). Long may it continue.
Ultimately, the knowledge, experience and support on this website and the information and experience of the PBC Foundation has been of real help in getting perspective on this condition. I consider myself one of the lucky ones as, like Aussie05, I don't have much in the way of symptoms (as yet!!) . When I spoke to my GP last year I asked if he'd encountered many with PBC, as he was so on the ball with me, and he told me he had quite a few patients, so I guess I was just lucky to have a Doc with experience and knowledge of it. I gather from others that's rarely the case.
You definitely have to be as well informed as possible and take ownership of your treatment. Don't wait for the medical professionals to drive everything for you - certainly here in the NHS, while they're great, they have a massive workload and given I'm early into PBC I doubt I'm high on the priority list so I always make sure that if I have any questions that I take a note of them as they occur to me and then take a list in with me at my consultation.
I hope you get the answers you need and the support from here sets your mind at ease, as much as it can. It's often been said that more people die with PBC than from it... reassuring for me at least, but hopefully puts it into context.
Best wishes and good luck with your treatment.
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