...and it's a crap-shoot....Well, I bit the bullet and started a course of Ketoconazole to see how I do. Keto works by blocking the secretion of cortisol by inhibition of adrenal 11 beta-hydroxylase. Since no two people respond the same, it's a guessing game at first.
My endo started me on 200 mg of the Keto at 6 p.m. and another 200 mg at 10 p.m. In a "normal" person, cortisol is the highest around 8 a.m. and decreases to about half that value around 4 p.m. By midnight (give or take an hour each way), cortisol should be about zero or close to it with blood and salivary levels. This is a normal diurnal variation. It is also called the circadian rhythm.
When one has Cushing's, this circadian rhythm is lost, and the normal diurnal variation changes. Cushing's patients have "flat" diurnal levels of cortisol, or even higher levels at night instead of in the morning. So, taking the keto at those "high" times lowers it to more natural levels, which is what I want.
But, the flip side of this is I don't produce the normal levels in the morning. So, I essentially have a type of "morning sickness" a lot of mornings with low cortisol until my body (aka...tumor) kicks in and makes some. (Read more about the Cushing's diurnal variation here.) So, I already don't make it in the mornings (or very well), and now I'm lowering it in the afternoon and evening.
Here is where the guessing game comes in. If I need to replace/add "cortisol" in the form of hydrocortisone in the morning, I also have a prescription of that. But how do I know? It varies by day, and there is no meter to help me. I so wish there was. I'd give my eyeteeth for a meter similar to a glucometer so I could figure out how much I need. The only thing I have to go by, except for regular serum cortisol checks which can't be done daily , is how I feel.
And what is so concerning about that? Cortisol is a corticosteroid hormone produced by the adrenal cortex, the outer layer of the adrenal glands which are essentially lying on top of the kidneys. Without it we die. It is the hormone that responds to "stress", both good and bad. It affects levels of multiple other hormones and electrolytes, and is very important in the homeostasis of the body. I need ENOUGH. Not too much and not at the wrong times. If I don't have enough, I'll end up with adrenal insufficiency, which is life-threatening.
Why this instead of other treatment? We are working toward a long-term solution for me. I explained it in the Medscape interview with Dr. Colin Son. It's not an easy choice.
I don't know how this is going to go. I'll let you know. I hope I can read my body right.