Not officially diagnosed with PBC and need really your help..

[Zois]

Hi all,

I am not officially diagnosed with PBC yet. During the regular blood check, it was found that I have slight elevation on my AST ( 36 ) and ALT (60), while other results were normal including ALP (63) , GGT (14), Albumin (58.8)

My GP asked further test as I have other autoimmun condition called Ulcerative Colitis, diagnosed last year. With that, result showed I have positive AMA M2 in the level of 45, however all others were negative and have normal range of IgM (0,6)

My GP has suggested me to visit my Gastroenteologist. Gastro did liver ultrasound and said that everything is normal and took another blood sample to check liver enzymes again. My results came like before. There were almost no change. However, there is only 10 days difference between those blood test.

Now, he suggested me to visit Hepatogist as he cannot interpret my results.

I am completely puzzled and feeling not well mentally. Anyone of you had similar condition like me? Is there a still chance I might not have PBC? Having AMA M2 positive is always indicates you have PBC? Sorry for bombarding with many questions but I am very scared and sad. I will be very much appreciated if you could share your thoughts/experiences with me.

[Kakey]

I think they're being thorough, as you have UC. I don't think it's a given you have PbC, not at all. Best wishes xx

[Zois in reply to Kakey]

Thank you Kakey! I appreciate for sharing your opinion!

[ninjagirlwebb]

I had slightly abnormal LFTs...which prompted this entire investigation into the cause. My GI who was also my primary care doctor referred me to my hepatologist. I was diagnosed with pbc after a liver biopsy which the first report deemed inconclusive. Then my slides and lab work was sent to a “world renowned” liver disease pathologist for a 2nd opinion. He concluded it was pbc and my hepatologist put me on ursodiol medication right away.

If pbc is caught early and you respond to treatment, the condition can be managed with minimal impact on your life or life expectancy. Only thing is you have to see the hepatologist a few times a year and take the urso daily. My hepatologist likes to run labs and see me every 3 months.

Others on here are different, depends on your condition and how your doctor wants to approach your care. Don’t worry too much until you get more tests done. Maybe it is nothing of concern.

Worrying won’t help except stress you out. I know it is hard. But at the end of the day, it is not in our control. Just find a good doctor and let them sort it out for you. You will feel better. Your doctors will take care of you.

[Zois in reply to ninjagirlwebb]

Thank you Ninjagirlwebb! I am trying to keep my chin up but sometime it is just difficult. Hope I will feel better soon mentally ..

[periwinkle88]

When I was diagnosed, my labs were about the same as yours-- positive AMA, normal alkaline phos., and slightly elevated ALT and AST. I was diagnosed at stage 0 via a biopsy. This was 11 or so years ago, and I'm still very early stage. My alkaline phos has remained solidly normal, and my ALT and AST have come down with ursodiol. I had a fibroscan in April that put me in the completely normal range (4.2 kpa). If you do have PBC, you may be very early stage too, and if you start taking ursodiol, you can likely stay that way for many years. With dietary changes and exercise, I actually feel better now than I have in 30 years. I'm sorry you're going through this. The not knowing is harder than knowing, at least it was for me.

[Zois]

Thank you Periwinkle88!It is great to hear, I am so happy for you.

If the doc confims my diagnosis, hope it could be same as you like stage 0.

I have no symtoms at the moment except stress..

[K-nirk in reply to Zois]

I have had a similar experience. Had raised ALT and ALP numbers and positive AMA but Alk Phos, Bilirubin, etc all in normal range. Fibroscan showed me at stage 0. I have made a personal decision not to start URSO yet. It has been a year and my ALT and ALP are completely in the low portion of the normal range as well as all other liver numbers and Fibroscan still showing the same numbers and stage 0.

[Zois in reply to K-nirk]

Thank you K-nirk, happy to hear that you are doing well. How did you lower your Alt and ast? Did you take any other medication or it just dropped by itself?

[K-nirk in reply to Zois]

Hi the only thing I did was taking Berberine 2 caps 2-3 x per day. My hepatologist is actually doing research on that supplement right now but the study isn’t complete. Always talk to your doctor first but might be a good thing to take.

[Lauralee851]

I have known I have had positive AMA for around 7 years and will always have regular checks with my liver specialist but I’m ok and no PBC diagnosis still. They say ‘chronic liver condition’ ‘arthritis probably of rheumatoid type’ etc and I’m ok with that. All the best! X

[Zois]

Thank you Lauralee851! I have my appointment for the next after. Hopefully all goes well!