Sorry I haven't been told anything since being diagnosed other than if there was a mild version of this disease I have it. Which I don't even know if there is. I've had no support I see a gastroenterologist and even that was over 2 years ago.
Answer Summary
Members rallied around someone who felt abandoned by their medical team after a PBC diagnosis four years ago, with the overwhelming consensus... Read more
The beginning stage is a fatty liver. Stage 1 . It is important to study and research the stage you are in. Urso given in the early stage should be perused by you. It helps with bile flow and inflammation of the liver. Eat organic, no alcohol , soda pop, or processed foods. Bad fats like crisco, etc is really bad for the liver. Lower your salt intake, and sugar. Total lifestyle change. T C Hale is a nutritionist who discusses protecting your liver on u tube. Best wishes and long life.
Thank you so much for everyone's messages and guidance. I have been researching like crazy to figure out what should have been done from the beginning. The fact that 3 seperate doctors and 2 so called specialists all missed that I am not on medication, I've had little to no tests done and I was told to google PBC leaves me feeling hopeless that I am going to get any real results. So I am starting from scratch and now finding out what needs to be done.
I can't thank this site enough for making me aware of what SHOULD have happened 4 years ago and that I am now hopefully going to get the medical care I deserve.
Thank you to everyone I can't tell you how grateful I am.
My specialist told me fatty liver is NOT beginning stage. A well known specialist at Cleveland Clinic.
I see a gastroenterologist who has experience with PBC. They started me on Ursodiol right away. We do blood work every couple of months as I was diagnosed last August. She said when my numbers are a little lower, we can go to a 6 month routine for testing. We do MRI and ultrasound yearly. Even if you go to a hepatologist, you need to be sure and ask if they have experience with PBC. Not all of them do....good luck and be well!
Go to a LARGE hospital system and make a scene!