I am over a year and a half post-op pituitary surgery for Cushing's. I had to take Cortef to replace my cortisol for nearly a year after surgery. I could not WAIT to get off the stuff. After all, patients like me have been suffering with an excess of cortisol for some time. It's the stuff that made us fat, depressed, achey, and red-faced, among other things. So it's probably understandable that we all want to get off of it asap! But the problem is, my adrenals aren't doing the job totally just yet. I think (hope) they will, but it's weeks like this one that make me wonder.
I've been really busy this past week. I drove over 1100 miles in 5 days, visiting with my children and grandchildren. I didn't get enough sleep during the week. I walked miles and miles, I didn't eat right, and I was busy every minute. The day after I returned home, my stepdaughters threw a party to celebrate our anniversary here at our place and so I had a million things to do to get ready for that, too. I was not feeling well the night of the party, and actually went to bed with a headache before all the guests were gone. Yesterday was the first downtime I've had for over a week and I could barely function. I had clean-up to do around here and was really having a hard time of it. It hit me yesterday that the pain I was experiencing virtually in every bone in my body could be signalling that I was too low in cortisol, so I took a little Cortef...very little, just 1.25 mg, thinking that might help. It didn't. I had a headache on top of hurting all over. So this morning when I got up (at NOON!!!) I took 5 mg. It is amazing how quickly that stuff works. Within an hour, my aching bones felt better, but I still felt very weak. So then I dug into my vat of meds and took some Florinef, too. Tonight I feel "normal". At least I feel what my version of normal is these days.
I wonder how long it will be before I can depend on my adrenals to do the job properly. I wonder how long before I no longer have to carry emergency meds or worry about keeping enough Cortef and Florinef on hand to treat myself during these low times.
I love my steroids. And I hate them, too. But right now I can't live without 'em.