In 2013 I had a routine blood test that showed I had elevated liver enzymes, so an ultrasound was ordered which came back normal. Last week, I had another routine blood test that showed:
ALP - 712
AST - 164
ALT - 152
GGT- 439
AMA - Positive
With that I am pretty certain that I have PBC. I have another ultrasound scheduled for tomorrow, but am panicking slightly at all the damage that has likely occurred in the past 3 years. I have had relatively minor symptoms such as fatigue mostly, minor hair loss, muscle cramping in my legs and feet almost nightly and Raynaulds syndrome in my hands when it's cold. Because these symptoms range from all stages of PBC I am kind of preparing for the worst.
Has anyone else had liver enzyme results this high prior to treatment?
Thank you for your time
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alison600
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Alison600 I compared your results to mine. I have them written down on a page and since 2009 they came down a lot. ALP now 265 (1043 before), AST 38 (157) ALT 29 (156) GGT 105 (483) AMA positive. Combination of things I do as follows' Take Ursotan, No Gluten, No excessive fat, eat fresh vegetables, fruit, and have an amazing Homeopath who makes sure I get the right Vitamines etc.It is just the itching we cannot get under control. Some days it is bearable,so I made peace with that although it is very irritating. All the best
Hi Rockie, thank you so much for this, greatly appreciated. I was reading posts where people were panicking over a ALP result of 200, and I felt I must have full blown cirrhosis. I had the ultrasound this morning and had to go for more blood tests. I should learn the results early next week. My husband is panicking and has been combing the good and bad food sites for liver disease, I swear I will be on a diet of celery and water before long :). Do you know what stage they classified you as? I was reading that if AST > ALP (which mine is) you have cirrhosis. I am hoping this is wrong...
alison600 Hi. I was never told what stage, and quite frankly I do not want to know. All I was told is there is no cure, Ursotan just keep the bile thin in the bile ducts that get inflammed. A liver transplant would be the only solution.iif I was younger,but with outo immune I am not so sure. I am nearly 76years old. I am sure I had this PBC for many years. Only in 2009, after loose stools and constant upset tummy and itching, blood tests picked up the elevated liver encymes. Then I was sent for all sorts of tests and liver biopsy and The Thyroid (under active and now hyper active) I had been taking Eltroxin for many years. Hope you find some answers.
It is still helpful to know that you have been on medication for seven years with no worsening of you liver. The thyroid issues seem to be a common theme with PBC, I have been on Synthroid now for 14 years. I am 43. I should have some more answers tomorrow with the ultrasound results so looking forward to that. I was watching on the screen as the test was done, but couldn't make anything out and didn't know what to look for. The technician also wasn't giving up anything, she wouldn't even say what organ she was looking at!
Thanks again for sharing, it sure is comforting to know that I'm not the only one.
Alison600. I hope you get your results today, and good luck with that. This group with PBC means a lot to me, as I know I am not the only one with this disease. Not many people understand hat we go through. Keep us posted. Regards
Hello alison600.
In early 2010 I started itching intensely and it seemed to be 24hrs a day. Was found my liver function test (LFTs) were above normal (sorry I cannot recall what mine were. Thought I could check on my access online to partial medical records on me (I am in the UK) but for some reason my GP surgery has only gone from 2013 and they were better as I'd been on urso for PBC almost 3yrs then.
It was found I had a high titre (measure) of AMAs the antibodies said to be present in PBC so with symptons and abnormal LFTs plus an above normal range of GGT (this apparently gives a reading for liver inflammation) I was diagnosed with PBC when I was 46.
Itching (still do but seems to be confined to later at night these days, gone by 6a.m) seems to be the only symptons I know I have (fatigue in 2010 vanished sometime during 2011).
Personally I'd not trawl the net and keep reading about PBC. I didn't in 2010. I actually first saw PBC mentioned in a library ref book when I was looking at conditions of the liver as it was decided I'd a liver problem as opposed to bone (you can have raised LFTs with ill bone health apparently).
Sounds to me that in 2013 when you state you had a routine blood check of the LFTs that it might be due to any meds you were taking at the time (for Reynaud's?). Certain medications can cause raised LFTs. Yours sounds on-going so figures it'll be investigated.
I look at it this way, if your LFTs were classed as astronomically raised by a doctor or you had certain symptons then you'd more than likely be seen a lot quicker, well here in the UK anyway. I know for my first hospital appointment in 2010 from my GPs referral I had 13wks to wait until the appt came round. then nearly 2mths to wait for the only blood check the hospital consultant took that day, the antibodies. I didn't have the GGT taken until I was under the hospital so I cannot state there (I do have the print-outs in paper from 2010 but to be honest I don't really glance at them much these days).
To this day my LFTs and the GGT are still above normal but considered OK for one with PBC. I go day to day how I feel.
Thank you for your response! I am on Synthroid for my hypothyroid which is what I think they attributed my elevated results in 2013. You point about the appointment sounds correct. I asked my GP about my numbers, but she wasn't sure and advised that once the referral to the liver specialist is complete we can judge by how quickly I get an appointment. They needed the ultrasound and additional blood work before they would even look at my profile.
I am hoping my appointment is made for some time next June
Hi Alison - I think it's very good that you had a normal ultrasound in 2013 as PBC tends to progress slowly. Do you know what your blood levels were back then compared to now? It is likely you will get started on Urso which can have pretty dramatic effects on your numbers. While my docs look at all the numbers, they are very interested in ALP & Bilirubin levels to monitor progression.
Try to take one step at a time - the Internet can be a scary place and I love that you're keeping track of your blood work. I find it very helpful to keep copies of all my test results so I can review and compare from each appointment. It helps to review them when not sitting in the doctors office & also helps me make a list of questions before going to appointments.
Thanks Maureen, the blood work back in 2013 was about 250 for ALP and 95 for AST, they didn't test for ALT that time. I just received my new ultrasound results and my liver is completely normal, but my spleen is enlarged and so are the lymph nodes around my liver. Next step is a CT scan. I am beginning to think this is related to Synthroid more and more, I just can't explain the positive AMA result.
Hmmmm.... hope you're able to get some answers soon. Many on this site have other autoimmune diseases such as thyroid, myself included. I would be interested in hearing your outcome and hope for the best!
Thanks Again, I will let you know. They said it could take up to 2 months for a CT scan appointment. In the meantime, they are also referring me to liver specialist and testing for ANA and Smooth Muscle Antibodies. Other than feeling slightly tired, I am in pretty good health. I am thrilled that there isn't any liver damage, but my enzyme numbers are crazy high, so something is definitely wrong.
A positive AMA is a hallmark test for PBC which I also have. April 2015 my AST, ALT and BILI were only slightly elevated and ALP was normal. My AST and ALT have since gone back to normal. I feel that I'm in the beginning stages. The itching began about 2 years before I was tested and keeps getting worse. Do you have itching? I had muscle cramping but that was due to a pinched nerve in my lower back which is controlled by taking gabapentin. The last few weeks I have been experiencing hair loss but have contributed that to my hypothyroidism. Does PBC cause it also? My liver biopsy done in July 2015 did show that I have lymphocyte infiltration.
I don't have any itching, and the hair loss may be due to Synthroid, I am learning more and more about the side effects of that medication that were never explained to me before. Next step for me is a CT scan, and I am also waiting for a blood test result to see if I am ANA positive as well.
Currently, I don't know what I have since all my results show that I should have major damage to my liver and the fact that it is normal is weird. I have also been referred to a liver specialist, but have not received an appointment yet. I am trying to find if AMA is a flag for anything else. I have read the 2% of people can be AMA positive and not have PBC, but it doesn't explain why my liver enzymes are so high. Now I need to google lymphocyte infiltration, as I've never heard of that before
It is the hypothyroidism that causes the hair loss, not the medication Synthroid which I also take to combat the disease.
Type in PBC lymphocyte infiltration to narrow it down when looking it up. Most of the articles are way over our heads but it basically refers to autoimmune and how the lymphocytes which are white cells, attack the small biliary ducts of the liver causing inflammation and scarring. It is the scarring that causes the biliary ducts to become blocked which then causes bile to back up in the liver causing cell damage to occur. The cells that are the closest to the bile ducts are the ones that produce alk phos and that is why it is associated with PBC.
Once positive for AMA, one will always be, although the titre may fluctuate. The M2, M4, M8 and M9 parts of the AMA are associated with PBC. M2 can also be autoimmune hepatitis. If you look up Wiki AMA, the other parts and their associations are listed.
I hope all goes well for you. The worst part is not knowing. Good luck with your testing.
I know there are codes M-1 through M-9 for AMA. Positive AMA or AMA M-2 indicates most likely the cause of symptoms and/or liver damage is PBC. Negative AMA or AMA-M2 means likely symptoms are due to something other than pbc but does not rule it out. I’ve not seen In anything I’ve read, that M2 indicates AIH.
Thanks again. I am negative for ANA which is good, now just waiting for appointments. You are right, the waiting is the worst, but hearing from others in the same boat is definitely helpful. Thank you for taking the time to respond. It is greatly appreciated.
I have elevated enzymes mine was said to be in the 600 range and my ama came back elevated I'm waiting on more orders from my doctor. What was your outcome?
I have been taking Urso for about a year and a half. My ALP is down to 250 and seems to be staying there for the last 9 months. Other than that, not much more to tell. I am considered a non-responder to Urso, but just try to put it out of my mind and get my blood checked every three months. Sorry I don’t have much more to offer.
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