Hello everyone. Hoping you are doing well.
I have some concerns.
I have a colourful health history to say the least.
Hypothyroid, Addison’s disease, Sjogren’s, Systemic Lupus Eyrethrmutosis, IgA deficiency, osteperosis, arthritis, fibromyalgia and PBC.
It’s allot, but I know I am not alone in this as many of us carry a significant basket of
diagnosis all due to our wonky immune system.
Amazingly I do pretty well and can enjoy life for the most part.
I write today about the PBC. I don’t know much about it. It was noticed back in 2003 when I was being investigated for the Lupus diagnosis.
I saw a hepitologist in Toronto about the PBC. She explained the problem was fatty liver disease brought on by years of prednisone steroid use.
I had thorough ultrasounds to rule out cancer in my liver.
I had much blood work. My enzymes seemed always to be slightly elevated and so I was told that this is a serious disease that would over time become a problem that would have to be delt with. I was told that it could be 10 to 15 years before that day would come. I was given no medications at that time.
Since then I have left that hospital after tiring of the 2 hour plus drive to the city.
I came to Kingston Ontario in 2006 even though I was warned that they did not have a hepitologist. My file followed me and I was tested and my file studied.
I was told that my liver did show antibodies but that it was functioning fine and was not a problem I had to continue to be concerned with at the moment.
That regular periodic liver blood work was all that was required.
I could not believe it! I had been told such a scared different story by the hepitologist for years every couple of months....I remember my husband and I leaving that office visit in total disbelief! We first stared at each other very gingerly about the new information, then we began to walk down the hall feeling confused and a bit questionable but so hopeful it was true. Then was began grinning so big and almost dancing down the hall....too funny.....I will never understand it.
But it has been fourteen years and the past few years my health has definetly changed some. My liver enzymes have be o e routinely elevated but it seems only slightly, from 45 to 75 the last times. My nurse practitioner is not at all concerned stating that in order to worry my enzymes would have to be 10X higher than that.
But my rheumatologist who is wonderful called and had me repeat the blood work again just recently. I don’t know what she is thinking nor have I heard ba k from her yet but it takes some time for her to receive the results and to get to my particular case
She is very busy but she has never let me down.
But I am confused, because I am liver sick.....nausea, itchy, can’t eat very well, my muscles and bones ache, and oh my Lord the fatigue! I just am so worn out. I can’t do anything. I also notice allot of these weird acne like yellow spots coming all up around my eyes and face. Not nice. What IS that?!
We just went through the Holiday season, where the foods are richer and more plentiful and it is often hard to say no to a hostess who has worked so hard preparing a beautiful buffet....is it possible that a little extra cheese or fat in my diet at that time could aggravate the liver and cause temporary symptoms I wonder?
Thank you so much for considering this post from a complete stranger, but I so appreciate any direction you can give me. MeandPBC?