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My conclusion is the first priority is to recognise your own symptoms. I start each day by recording my weight, temperature, blood pressure and pulse. The trends are more important than the figures (except temperature which helps me recognise infections - not uncommon with a suppressed immune system).
The second priority is to maintain good relationships with doctors. You may be aware something's not right, but probably need to work with one or more of them to diagnose and treat the cause.