NOT IRON, NOT B12, BUT CORTISOL. BUGGER.
So I don’t have a proper diagnosis yet but I did get the results back from my various blood tests. All were normal except the cortisol and synacthen tests.
These may be suppressed due to the current steroid use (as in we can’t separate the long terms effects from what prednisone does while still on it) or could be something else or even another auto immune issue related to my RA.
The blood result doesn’t explain my daily fatigue but it does have implications for a flare up of disease activity (which I knew) and when ever I have an infection (which I keep forgetting about except in line with my sinusitis) and stress (which I really did not associate it with.)
There is a risk of an adrenal crisis in those situations so I have in fact been really flirting with disaster for the last few years. I knew I felt bad, but I didn’t really associate it with being treated by more steroids.
So my reluctance to use higher doses may be having a deeper impact than I realised.
This does mean I’m going to have to put a plan in to action because my “crashes” I have experienced not only look too much but now have a little bit of blood work to support the idea that they are in fact serious. With my iron and B12 being good (OMGYAY!!!! Fortified foods FTW!!!!) there isn’t really much left to look at.
The registrar I saw was wonderful. Seriously lovely and she had clearly really looked in to my case history and even contacted my specialist, and I will have to see him in the next few weeks. Basically I need to go off my steroids for as long as possible and repeat the synacthen test. If I can. Also getting ACTH levels checked and serum aldosterone. I think I may be lucky that this is all not at crisis levels but like I said I have not been accounting for this in high stress situations, at least not enough, and I’m not sure how often I can do that.
Meanwhile I have been put in the system for a a rhuemy and endochrinologist.
So tonight is a bit of planning and finding some solutions. Basically I don’t want to get into a crisis even if I may have really flirted with is a few times. Like at D*C or WellyGeddon last year and even after WellyGeddon this year. The registrar said I should just go to hospital when I feel like I do in a “crash”. I kind of sort of knew this but kept telling myself it was probably low iron/B12 so while horrible to deal with not actually very serious.
But on the upside I have found a level of medication that helps me avoid anxiety stress, and reduces muscular pain as well, so at least I’m not going to cry myself to sleep.