Hi, sorry everyone, this is a bit of a rant as I need to get this off my chest...only you people on here really know what it feels like when you get your blood results.
I was diagnosed December 2015. I was lucky my PBC was caught early through a routine blood test as I went to the dr thinking I was feeling more tired than normal and fitness level had dropped off. I thought it was the menopause...but elevated LFTs showed PBC. Initially devastated I decided to find out as much as I could by researching the PBC foundation and enrolling on here.
I went to a herbalist friend who made up a herbal tincture especially for the PBC and I took my URSO. Gradually my LFTs came down and by January 2017 all were normal except for the GGT which had come down from 247 to 49 (just slightly above normal). I was so happy with the results I started to relax about having the condition. I wasn’t sure if the herbs did it or the URSO but I felt in control. I guess I got complacent and stopped taking the herbs (they do taste pretty horrible). I had a blood test August 2017. Surgery couldn’t give me a print out but said results were satisfactory.
October 2018 had annual blood test, rang surgery results satisfactory. However, when I requested the print out I could see numbers had spiked. GGT was back up from 49 to 148, ALP was higher than when diagnosed at 236.
I’m so cross with surgery for saying these results are satisfactory for known PBC...yes they might be but the trend suggests something’s going on. Sounds like my bile ducts are inflamed or getting blocked.
So, I’m back on my herbs and will discuss with dr next week. I just wanted to say how despondent I feel at having done so well and then get this knock back, I feel like I’ve got to start all over again trying to manage this disease. And now I’ve got menopause sweats on top of the PBC so I’m not getting proper sleep. Just feel like life is a bit of a struggle. I know I’m still lucky I that there are many people worse off but I just feel so tired. I also lost my dear friend Peridot a few weeks ago which was a huge blow and has made me fearful for the future but also determined to get on top of this disease.
Sorry for the time, just needed to offload. Xx