Adrenal crisis fun…not!

Well, I’m home from Vandy now after a whirlwind weekend at Vanderbilt for an adrenal crisis.

Yep, I had one again.  I had one shortly after I returned to work after my first surgery, too.  I have to relearn my body and my symptoms all over again.   I had always thought vomiting was the main indicator that you were in adrenal crisis,  but Cushies be warned – vomiting isn’t your only clue.   Vomiting is a major, glaring symptom,  yes, and usually the last one to show up.  But you can catch the crisis before it happens by paying attention to other symptoms.

For me, it was an upset stomach, which I did have the first time I tapered off with my first pituitary surgery.  For a few weeks before the crisis happened, my stomach was super upset no matter what I did, and I lost 20 pounds rapidly.  Plus, I was really tired and fatigued.  So when I started vomiting incessantly after a night out with my then-roommate, I knew what it was immediately.

But this time, with the upset stomach, I blamed it on all of the medications I’m taking.  When you put so much stuff into your body, you can’t really blame it for being in a tizzy.  I was tired, yes, but not so tired that I couldn’t get up to go to work.  I had the shakes, where my hands shook like leaves, but I thought maybe it was just me jonesing for a little bit more steroid, or maybe the thyroid medication I’ve been taking.  I’ve lowered my dose because my TSH levels were too high.

But on Friday at work, I was feeling REALLY crappy.  I’ve been sick with a nasty sinus infection, and a bacterial infection to boot.  I added another antibiotic to my already overloaded pill schedule, and thought maybe the upset stomach was due to that, too.   On Friday, though, it seemed to get worse.  I started sweating profusely, and I’d been doing that, but Friday it was unbearable.  And then I started shaking so bad that I couldn’t hold my pen in my hand.  My stomach started cramping, but it was around lunchtime, so I figured I was hungry.  I had just sat down at the table in the break room when the first wave of nausea hit.  I went running to the bathroom and I barely made it.  Luckily I had grabbed my cell phone, so I was able to text my co-worker and ask her to run to get my steroid.  I took a 40mg “stress dose” and kept it down,  but the shaking never ceased and I had shortness of breath.  Although I wasn’t vomiting anymore, I still didn’t feel “right” so I called Dr. L.’s office.

He got a little perturbed with me, in that “I told you so” kind of way, because he’d warned me about returning to work too early.  But honestly, I DID feel well enough to go to work.   I went to Seattle and back on 20mg of steroid just fine – well, except for the upset stomach.  I went back to work the day after I got home from Seattle, and everything was still fine.  I was a little tired, after being off for nine weeks, but other than that, I really had no warnings that I was in crisis.

Luckily this time a doctor in the Vandy ER saw my chart after I was triaged, and knew that I was in serious need of medical attention.  I didn’t have to wait very long at all to be seen by a doctor, but they were ridiculously crowded, and I still ended up on a gurney in the hallway, just like last time.  The on-call endo came to see me, and the ER doctors followed the instructions Dr. L. gave me to a “T.”    They admitted me for observation because after the first 100mg of steroid, I was still shaky and having flank pain.  They did an ultrasound and checked my urine, but there were no kidney stones to be found this time.  I was really scared I was going to go through kidney stone drama again, but thankfully this time I avoided that.  They gave me the good stuff in the hospital for the pain — Dilaudid.  It made me itch to death, but it’s totally worth it for the chance to just sleep with no interruptions.

So now I’m back home, and tapering down again.  Today I take 70mg of steroid, and then tomorrow I take 40 mg – 20mg in the morning and 20mg at night.   I’ll stay on 40mg until my Vandy at endo thinks it’s safe to go down, and then I’ll probably go down 5mg at a time so as not to shock my body.   The theory right now is that I had an excess of steroid after I was on the 90mg of steroid post-surgery, and that I tapered down easily from 90mg to 20mg because my body didn’t realize it wasn’t getting as much.  But when I got to 20mg (and when my problems started) my body finally caught up and was literally  like “What the hell?”   Hence the adrenal crisis.

The scariest part is that I didn’t feel stressed AT ALL.  Work was going fine.  So it’s a little scary to me that me feeling not too stressed can still be my body stressing out.  I just have to REALLY learn my body.  I thought I knew it well – and I do for the most part – but this just threw me another curveball in this crazy recovery.

Adrenal crisis is not fun.   I am definitely getting a medic alert bracelet now, and my mom is  making some cards to keep in my wallet and car, and to handout to a few co-workers so they know exactly what to do if it happens again.  I really hope it doesn’t, because feeling your body shut down on you system by system is scary as hell.

I hope this gets in control soon.

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