periwinkle88

Hi, I was diagnosed with pre-clinical PBC/stage 0 in 2012. My ALT and AST were at the higher end of the normal range, which was unusual for me, and since I'd just been diagnosed with Hashimoto's, another autoimmune disease, my doctor checked me for autoimmune liver diseases (after monitoring the ALT and AST for a couple months). My AMA was elevated. My ALK PHOS was solidly normal (even the lower end of normal), and has always remained normal, never higher than the mid-70s. My GGT has also always been in the normal range. I did have a biopsy, which confirmed the PBC. Since I'm sensitive to medications and fillers, and since i was so early stage, I didn't start ursodiol until about a year and a half ago (five years after diagnosis). Per a fibroscan, I'm now at stage one. It turns out I can tolerate the urso without a problem (except for weight gain), and I wish I'd started it upon diagnosis. By the time I started the ursodiol, my ALT and AST had increased a bit, maybe 10-15 points each. ALK PHOS and GGT always normal, as previously mentioned. So, I did progress from stage 0 to 1 over the course of about 5 years. I don't have many symptoms, just some fatigue here and there, but that could also be my thyroid.

iagra

As far as I know, elevated Alk Phos is the first and strongest clinical indication of PBC. Not having ALK P elevated could possibly mean other conditions. But, there are exceptions to a rule... The best is to talk to your GI about it.

Ballymahon2 in reply to iagra

I thought the same iagra thought you have to have elevated alk phos for diagnosis of pbc thats what it says in textbooks

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Hidden in reply to iagra

I had read in a few places online that PBC could be diagnosed with AMA + ALP and/or GGT though it seems the majority of cases it's with AMA + ALP. Of course, this is best discussed with my doctor but as I have another month before that appt I was hoping to make a little sense of it all.

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Puddles

Hi there,

I was diagnosed following an incidental finding of elevated AMA. I had slightly elevated GGT and slightly elevated AST - they were the only abnormalities in my LFTs. PBC diagnosis was confirmed on biopsy. After starting Urso my GGT returned to normal, my AST has always remained just above normal levels. In the first 2 years my ALP was never elevated. After 2 years on urso I hit a bit of a blip in the road and all my LFTS became elevated for a period, I had fenofibrates added to my treatment and they all returned to previous levels and have stayed there for the last 3 years. I have not really had any symptoms - sometimes feel quite tired but never sure if that is just busy working mum tired or related to PBC....

I only had a biopsy initially because there was some query as to whether or not I could have had overlap (with autoimmune hepatitis) due to slightly elevated smooth muscle antibody being present. My gastroenterologist was pretty much 100% certain of my diagnosis of PBC with positive AMA, elevated GGT and I also had elevated IgM. She said the reason ALP was normal was because it was very early in the disease.

Hope this helps, all the best

Puddles

Hidden in reply to Puddles

Thanks this does help. I read that GGT can be the most sensitive test for liver damage so it makes sense that it could rise before ALP. I'm hoping that the gastroenterologist will send me for a biopsy.

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ninjagirlwebb

My LFT’s fluctuated normal to slightly elevated over course of a few years. Alk phos was mostly normal then; however, my ama was positive, elevated immuglobin g & m, ggt & presence of smooth anti muscles.

My hepatologist convinced me to do a biopsy, was diagnosed with pbc & put on urso immediately. I see him every 3 months.

I suspect you do have pbc or some other liver condition that is causing the slightly abnormal labs.

It is fortunate that you are in early stages of whatever it is because the meds will slow the progression of the condition. Trust in your doctors to help you manage through it.

Keep copies of all tests & labs & never be afraid to ask your doctors questions. The more you know, the better so that you work with your doctors as a team. It will enpower you & you won’t feel so lost. That was my experience with dealing with this. We can’t always control things in our lives but we can always manage them.

Hidden

Thanks everyone. I have slowly been adjusting to the fact that I may have PBC since November when I had the first AMA test show positive. I know I don't have a diagnosis yet but with my GGT high too it seems like I'm not going to be in the 1% of healthy AMA positive people.

GrittyReads

The % of healthy AMA-only healthy people is higher than 1%. I think it is more like 7-8% according to blood donor statistics. However, fingers crossed for you, that the high GGT is an anomaly, and all your other bloods / lfts (ALP, AST,ALT) etc. stay in the non-PBC zone.

I am AMA-only, and it took a lot of testing before I got a clear 'no PBC' diagnosis. I'm lfts tested yearly … plus 'whenever' if I have any health blips.

Hope all goes well.

Hidden in reply to GrittyReads

Thanks. My ALT has been slightly elevated too the last couple months plus all the autoimmune symptoms I've been having. If it isn't PBC then it has to be something else and I have no clue what!

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Hidden

I have an update for anyone who comes across this thread in the future: I saw the gastro and he diagnosed me with PBC. He is sending me for a fibroscan and a bone density scan. Since my ALP is normal he isn't giving me URSO at this point but if the fibroscan shows any damage he will put me on it right away.