I was retested twice in 5 months my alt has stayed 53 and my ast 50 alt 113
I was negative for AMA my marker was 18 which was said to be negative. My ANA is negative. I dont know if i should consider these levels " my normal" my dr thinks that they are abnormal but they are only slightly elevated so he is not concerned. I had an ultrasound scan in 2015 it was clear, I have had on and off abnormal liver enzymes since 2012... I have lost 40 lbs and they remained the same. Not sure what is the next step as my insurance will not pay for a biopsy, and my dr does not think its neccessary.
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mtk0925
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No I haven’t, I’m not sure if my insurance will cover it. We are in a bit of medical bill debt right now with all the tests and my baby having to go to the er so right now we can’t afford any more medical bills and my dr hasn’t suggested it
Yes but if you read the ladies original post it doesn't look like she has actually a confirmation of diagnosis or it appears that way & a fibroscan will of course see the poorly liver but it won't have that confirmation for her. I have never had a fibroscan scan as they say as long as the urso is working & bloods are good there is no need it won't mean anything. It's strange how these medical people differ so much. Xx
you are right about so many opinions being different. I would suggest a fibroscan, though, every 1-2 years or so just to look at the overall condition of the liver. Continue the lab work every 3-6 months as recommended in the Standard of Care. You are also right that this scan won't diagnose PBC.. only a+ AMA and elevated liver enzymes. Biopsies are not done for this anymore unless another liver disease is suspected.
Has he tested your ALP and GGT? My specialist is generally most interested in the levels of ALP and GGT. You have mentioned ALT twice, was one supposed to be ALP? I think any high ALP is usually a cause for concern.
About 10% of people do have PBC, but without also having AMAs. I think the main guide, then, in this situation is the level of ALP (and the other relevant liver etc chemicals) and if they are high, the next step would normally be a biopsy. I believe a lot of Centres are now using a specific type of Fibroscan, which is almost as good as a biopsy, but I'm not sure if an ordinary fibroscan is enough.
I would talk to the advisors at the 'PBC Foundation' who host this site. If you click on the link at the top of this page, you can access their website with contact details for both phone and email. They are based in Scotland UK, and their advisors are highly trained and lovely.
Also, if you check their site you may find their summary of the recent 'formal/official' guide to the exact diagnosis and testing procedure/protocol, to be followed - by all GI/Liver/PBC medics - when checking for PBC. This code was agreed upon by the leading medical bodies [UK, US and Eu] earlier this year, and should be followed by all practitioners. You might want to get a copy and discuss it with your Dr. I would at least push for a Fibroscan if your insurance covers it, but do talk to the PBC F people. I think there is also a US PBC Group.
Hope this helps and that you get some answers soon.
thank you! my ALP was 116 in May and 90 in sept then 114 in November all of the readiings are said to be normal by the lab scale. GGT has been normal. it was at one point 400 though but that was about 4 years ago. I did have HEP A that cleared and honestly ever since the HEP A in 2012 is when my liver has been weird then I had preclampsia with the birth of my first child thats when the liver enzyme issues restarted. I dont know if any of that has any thing to do with the chronic fluctuation of my liver enzymes being slightly elevated. My dr has reccomended that I lose weight and I did and it still didnt effect the numbers. He suggested that I may have NASH, or PBC. Those are the only two diagnosis that he has been thinking it is.
Make sure that you're not on meds like phenergan as these disrupt Lft's quite significantly. Phenergan belongs to a group of antihistamines which cause drowsiness.
I have multiple autoimmune problems and I find that the most simple things can get overlooked as the western world is so over medicalised. Always look at the side effects of any medications you take, they are often the culprits and simple antihistamines caused huge elevations in my LFT,s. They are normal now despite a fibroscan of 10.
I also take prozac and xanax as prescribed by my dr he does not think this is the cause though
Maybe you should consult with a Hepatologist to get to the bottom of it. Doesn't hurt to get a 2nd opinion. They won't push for a biopsy unless they feel it will help diagnose.
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What Stage am I? 
Am I alone?
Am I the only one not taking URSO with a PBC diagnosis?
Cataract, Liver/Pancreas issues, Elevated M2 AMA, NAFLD and now Dupuytren's, I am only 45! 
I cannot seem to get my diet down to where I am at least comfortable after a meal
