Saturday, April 4, 2015


Did I tell you about my changes in sleep yet?  Well, this change was almost more surprising than my change in appetite.

The high cortisol from Cushing's Disease made nighttime sleep almost impossible.  It raises your cortisol level, the "fight or flight" hormone, usually at night.  One of the signs of Cushing's is that it flips your diurnal rhythm, meaning your cortisol is high at night and lower during the day, the exact opposite of what it is supposed to be, so you are "wired" and awake at night and tired and sleepy during the day.

When my cortisol levels dropped last fall, I was still not sleeping well, though it was clear to me I wasn't "high" at night anymore, just having difficulty sleeping.  It turned out that my body's growth hormone production was nonexistent.  And guess what one of the typical symptoms of AGHD is?  Difficulty sleeping and extreme, bone-crushing fatigue.  My fatigue and exhaustion was actually worse at this point than with pure CD alone.  When doctors and other patients saw my Growth Hormone Stim numbers (0 across the board) a common response was, "I can't believe you can get out of bed!"  And that's how it felt.  But even when THAT tired, I couldn't sleep well.  See, hormones control sleep too.

When I started GH replacement shots, THE first night I slept soundly.  I knew that was one of the first improvements to be seen, despite expert doctors in the field saying it takes 6 + months to see improvement after starting nightly injections, but it was almost too good to be true.  I waited to see if it was a fluke, and sure enough, it was the real deal.  But, it is STILL so surreal to me, and I've been on GH well over a month now.

What I noticed?  I fell asleep that first night without remembering I had fallen asleep.  Does that sound weird?  It usually took me 20 minutes to 2 hours to actually get to sleep at night, and I remember the "trying" part well...laying there, thinking, trying not to think, rolling over, etc.  This day?  I fell asleep without any of that.

I woke up in the morning like a lightning bolt.  I mean, it really wasn't THAT dramatic, but there was no slow transition from sleep to wakefulness, no half-dazed cognition, I was simply and suddenly awake.  Weird!  I'm guessing that's normal, but I wouldn't know since I haven't experienced it for more than a decade.

And when I woke up?  I had no memory of the night I'd slept, either.  Normal?  I don't know?  I was used to waking up to roll over in bed, waking up when my husband's alarm clock went off (and each time he hit the snooze button), when a kid went to the bathroom next door at night, etc.  This time I woke up with zero memory of any of that AND I had obviously changed positions in the night.  Creepy! 

Those changes have continued.  When I'm increasing my GH dose (and thus my cortisol drops lower), I can have some pain that keeps me up at night and reminds me of what my sleep has been like for years (too low or too high cortisol both mess up sleep), but that is short-lived.  If it gets too low, I can take some replacement hc and sleep like a baby (maybe even dream!).  I think I actually know what "real" sleep is supposed to be like now!  It doesn't give me more energy in the day yet, but it certainly is more of an oblivion and there is more definition between awake and asleep, and that is cool and so unexpected.

1 comment:

  1. Thanks for this update on sleep. Mine is still pretty bad, but with me the GH may take a little longer to get going. Men are put on a lower dose, but since I was also severe AGHD due to Empty Sella even before my Cushing's this looks like a long haul ahead.