The newer test is not available in Canada. Had I not had the test done in the US, I would have found out. Many people do not find out until they are on a waiting list for a liver transplant. The test was around $100 USD
People with PBC require liver transplants as the disease enters the later stages. The only treatment is delaying it with medications, and then the eventual liver transplant. No guarantees of success. Life or death.
The doctor said he new people with PBC, and that I was neither yellow or in late state liver damage as the people he had seen during his residency were. So, it was ignored by him and several other doctors until I decided to bring it up again, and to repeat the tests in the US at one of my conferences. I had that test 4 days ago.
I went back a year later to redo the test to make sure that it wasn't just me thinking this through without a confirmation. Third test, and two of two positive AMA M2 results, and one negative AMA test. Definite results it turns out.
High liver enzymes and a positive AMA or AMA M2 are definitive for a diagnosis of PBC. In the case of negative AMA tests (both types), a biopsy is used to look for damage. In most cases it can be diagnosed without a biopsy.
I connected with the PBC organization in Canada and talked to several people who had PBC and they directed me to see her in Toronto. I'm collecting other blood tests now so that they can give a definitive final diagnosis and rule out any overlapping disorder that goes along with PBC.
I found out that my high ferritin results were also indicative of the disease when found with the other positive tests. It is a sign of inflammation. Nobody has been able to explain it for close to twenty years now.
It is possible to have both PBC and Autoimmune hepatitis together. While having my blood tests done I had an anti smooth muscle test done to help rule out or support AIH. It came back negative.
It is a rare disease. The experts say it is typically between 1:4000 and 1:25000 people. 9 in ten people who have it are female. It is typically found in people with Celiac disease, Sjogren's Syndrome, rheumatoid arthritis, Lupus and other rheumatoligical disorders.
I was able to get another physician to meet with me via video appointment same day to get the blood tests ordered. It a service I pay for, and it was the same service where the doctor who told me that I was not yellow and in late stage liver failure last year.
I'm waiting now for the hepatologist appointment. They said that it takes 2-6 weeks to be seen. Pretty good, but I need to get about 15 blood tests done first, that I have never heard of before, before I can be seen.
My rheumatologist was trying to get me in to see another hep after I brought it back up after being diagnosed with MAST Cell Activation Disorder. The referral was not going anywhere, so I ended up creating another plan, and here we are.
It's a journey, so this story is still unfolding.