I have been following all your interesting posts in here for a while, and thought it was about time to share my own story.
I am 48 and Danish, but moved to UK a few years ago, so please excuse my bad english and misspellings.
I was diagnosed with pbc in september 2014, and have had problems dealing with it. My grandmother died, aged 42, from a liver disease 1944, so I instantly thought I was dying too.
I had a routine health check late 2013 that showed elevated liver enzymes and a high count of white blood cells. After being monitored for a year with blood test showing the same every time, and cholesterol increasing from 5 to 6, I was finally referred to a specialist. He diagnosed me, put me on Ursofalk and told me to go home, live my life, forget about it and not read about pbc on the internet! Of course, that is not human possible, so I have been reading all I can about pbc and autoimmune diseases.
I have no idea what stage pbc I have, but thinking back in time I did visit a doctor in 2007 because of itching in my ears. I still have itching in ears from time to time, and also on lower legs. Fatique I don´t know of yet. I have often felt bloated after eating, often had stomach pain and problems with digestion, but never talked to my GP about it. Some years ago I went to a specialist because the nail on my right big toe started looking weird. It was not a fungus, so I have just lived with it, covering it up with nailpolish. Now I have read somewhere, that it can actually be a sign of your liver not working well, and being on Urso now for 5 months...my nail is suddenly growing into normal !! Anyone else with this experience ?
I must admit, after reading about pbc and autoimmunity and found myself a private GP in London who are looking more into the causes of autoimmunity.
In addition to Ursofalk she has put me on 30 mg of zinc citrate every day. She told me that a problem with Urso is, that it allows copper to accumulate in our body over time, and this is toxic. I am not exactly sure how it works, but apparantly it is very important that zinc-copper minerals are in balance. She has also told me about leaky gut syndrome, and that it can cause autoimmune diseases. I have therefore been on a gluten- and milk-free diet with probiotic-suppliment since october....and feeling great. I try to avoid sugar too, but for some reason it is harder for me. I do not drink alcohol, I have had only a few glasses of wine in the last 18 months.
First thing I do in the morning, to clean my liver, is drink warm water with a sqeezed lemon in. I sip it through a straw to protect my teeth. I have also had my hormones tested, since the liver plays a role in the metabolizm of hormones. I have not reached memopause yet, but there were some imbalances though. My private GP has put me on bioidentical hormones, 20 mg dhea and testosterone.
I have just been to my NHS doctor for my first blood test since diagnosis in september, and almost everything are back to normal. I am so happy. Alkaline phosphatate is slightly out of normal range, 161 iu/L after being in 4- and 500´s, and eosinophilcounts are just slightly over normal. My cholesterol level dropped from 6 to 4,6. Only problem I still have is low ferritin, but I will start taking some supplements now.
All in all having pbc has changed my life. It is sometimes difficult to stick to my diet, especially when going out for dinner at restaurants or friends houses. I do not want to be annoing to anyone, so I have only told a few about this. As long as I stick to diet on a daily basis it will be OK. Also eating pills morning and evening is new, and sometimes I forget to take Urso with my meal. If I take Urso later than my meal, it can actually give me some itch(?)
As sad as I am to have this disease -I also have asthma- I must say that I feel better than I have in years. When thoughts are getting dark, I try to think to myself how lucky I am that my pbc was discovered. I have made a lot of changes, and maybe it is just Urso that is the key to my well being.... .but now I do not dare to change anything.