What a difference a few chemicals make

It's been a rough couple of weeks here at Cushing's Central.  My system has completely gone independent and taken my cortisol with it.  Whence last we talked, I was awaiting the results from my blood draw taken on Friday 7/22 to see if my cortisol was still very low (technically making me adrenal insufficient rather than having Cushing's) or if the low cortisol results from the 7/15 blood draw were a trend.  Well, true to the way things seem to happen to me, my cortisol level was "undetectable".  Huh?  My cortisol level is bouncing around more than a ping pong ball at the Beijing Olympics!  What the heck is going on?  And the answer to that million dollar question is...wait for it...we don't know.  Kind of takes the air out of the room, doesn't it.

The awesome news is that I've started taking hydrocortisone to add in the cortisol that my body doesn't seem to be in the mood to produce by itself.  I started that on Wednesday 7/27 and by Thursday I felt 100% better.  With really low, or no, cortisol, you are exhausted all the time, you don't want to eat, you feel yucky, and mentally you can't bring yourself to want to do anything. Not a happy place for the Princess.  And I was going on 2 weeks of this.  So a little relief, even if it comes in pill form, is much appreciated.  I am happy to report that I'm pretty much back to my energetic productive self and accomplishing all sorts of home improvement projects!

The bad news is that weekly blood tests and peeing in a jug are in my future for EVER!  If we don't know from week to week what my cortisol level will be, we can't medicate it consistently.  So we have to check it every week and decide whether I need cortisol added back in or not.  GAH!  I am still taking Metty, so when my body decides to produce cortisol, it will be controlled and I won't go back into full blown Cushing's. 

I'm not due to go back to the NIH until November for more scans.  This will be 6 months from my last scans and that's the schedule we've been on.  There really isn't anything they can do for me at this point except for what they are doing.  It's up to my tumor to show itself so that we can remove it and get my system back on track.  Until then, look for a pee jug in my fridge!