Getting no where with drs: My journey has... - PBC Foundation

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Getting no where with drs

mtk0925 profile image
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My journey has been a long one since 2012 my drs have suspected that I have something going on with my liver. My enzymes remain at 50AST, 54 ALT 112ALP and have stayed this way for the whole year. At one point they went back down to completely normal. I have had my ANA and AMA tested twice both negative. I am just wondering where I go from here. I live in the states so health care is very expensive. The tests Ive had I am still paying for. I have had an endoscopy barium swallow, ct scan, ultrasound. I just dont know what else to pursue and around here insurances will not cover a biopsy unless totally necessary. Anyone have suggestions for me? I have seen 3 different drs regarding my liver enzymes one was a hep specialist. I also had Hep A that resolved. My twin sister has the same issues with enzymes we see separate drs. Maybe its just our normal to run elvelated

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mtk0925
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butterflyEi profile image
butterflyEi

Hi mtk0925

Do you know what the parameters are for your blood tests?

At my last test my serum alkaline phosphatase was 137 <30-130> and the serum ALT level was 55 <7-35> and the AST (taken last year) 35 <15-41>. The parameters in the < > are those markers acknowledged in the UK - parameters can vary between laboratories and countries. Have you had a blood test for bilirubin?

What are the symptoms that took you to the doctor?

The PBC Foundation, free to join through the icon above, has a compendium in the member's section where you maybe able to find more answers to your question. You can also email the Foundation and see if they can give you any further guidance.

I suspect some of the lovely people on this site who live in America will come along soon and be of more help. You can also find more information on the PBCers.org web site

hope some of the above will help you, many of us with PBC have a long journey to diagnosis as it falls into the rare/uncommon group of diseases but I would hope that the hepatologist you have seen would have knowledge of PBC.

best wishes

gwillistexas profile image
gwillistexas

Your ALP is perfect. In my lab, range for AST is 14-36. ALT 9-52

ninjagirlwebb profile image
ninjagirlwebb

The best thing to do is to seek out a hepatologist at a major teaching hospital with a liver transplant department & have him/her get to the bottom of it for you. They will know the proper tests to run & if a biopsy is needed, they will deal with getting the approvals from your insurance company.

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