Mostly I deal with this on my own, since I haven't heard from my Gastro since he told me we're doing all we can for you. Yes I'm taking Urso, so I kinda agree with him. Through out this time I've sometimes said (I'm not a complainer as most of us are not) that I just feel soooooo tired. It occurs to me lately that no one can understand that. They are tired too, no matter what age. In my mind lately is how to define it.....well, when you catch a cold or flu you just want and need to sleep it off. For whatever reason my immune system thought it caught a cold and could never quite get rest from it. So I'm in forever sleep/tired mode.
So two years later: Mostly I deal with this... - PBC Foundation
So two years later
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Have you had any blood tests recently? There is of course the well known symptom of fatigue in PBC but it can also be caused by other things, thyroid for instance. I know when the fatigue is on me I just crash cannot stop myself but my main symptom is the itch which became active in 2014.
A cautionary tale though - I was diagnosed in 2006 dismissed by the specialist around 4 years later and with his dismissal I believed myself not to be unwell so did not have any blood tests for about 5 years until I discovered various forums such as this one where it was obvious I should be at least getting blood tests annually. Went to GP and had LFTs done for a few years and when the surgery were unable to control the itching I asked to see a specialist. The retiring doctor at that consultation told me that people like me should be under the care of the specialist. I am now under the care of the hepatologist at the local hospital with annual visits and annual blood tests. I am also at a different surgery now and I would not trust the GPs to care the same way that my previous surgery did.
In co-operation with PBC Day - today - the PBC Foundation has come together with other organisations to promote "know your numbers" and it does seem to be very important for us to be proactive in our care and be our own advocats. Please do not battle this on your own, go for blood tests and double check where you currently are with your PBC.
best wishes