More on taking Ketoconazole to lower cortisol

Well, the past week has been very interesting with the Ketoconazole.  I've learned some things by taking it:

• I definitely cycle. 
• I have very low cortisol in the mid-afternoon (worse on Keto) and it is difficult to function without some additional hydrocortisone.  I come home from work and crash each day.
• Even taking the keto in the evenings, I still get more "wired" and less tired around 9 p.m., so my body/tumor is producing more ACTH/cortisol then.  And it gets even more wired around midnight or so.
• Taking the Keto makes me low in cortisol most of the time, and I have to replace some right now in the morning by taking hydrocortisone.  But I don't think I'm low enough at night. However, this is working to simulate a normal diurnal pattern.  Thus, I'm sleeping better.

I haven't lost much weight, but I have lost inches in my stomach area.  I go up and down in weight, so it's hard to know if what I have lost is from cycling or from the keto. 

This isn't easy. I'd be lying if I said it was.  On Wednesday, I posted this on the Cushing's Help message boards:

Oh man...whew.... this is hard on a person. I definitely know what my lows feel like. From 3-9 (I'm assuming I'll do the same around 9 tonight) I feel like I just can't walk another step or even stay awake. I absolutely had to go to the grocery store after work, and I just did not think I'd make it. My cupboards and refrigerator were bare. It was so hard to do, but I did it. Once I got home, I thought I'd never unload the minimum amount I managed to get. And only the cold stuff is put away. The rest are on the table or right inside the door where they were dropped.

I took another 2.5 [of hydrocortison] at 1 p.m. today because I had such a hard time standing up. I felt it coming. Every joint, every muscle hurts. My knees are horrible. If I stay awake 'til 9, I'll let you know how it goes. I suspect I'll perk up then.

I think I feel my cycle even more on the keto...not less.

Nausea is also bad in the afternoon/evening, but then I get really hungry around the 8-9 time.   It's really the only time of day I'm hungry.  Eating at night and not during the day is not a good habit.  I'm trying to eat something in the mornings and then at lunch.  Actually, lunch is ok if I eat it early enough before I start feeling bad.  And if I eat dinner (called supper around here), I am eating something light and low-carb because it's late when I do want to eat.

Again, I sure wish I had a "cortisolometer" to be able to monitor my cortisol levels.  That sure would help me know whether to take hydrocortisone and how much to take in the mornings and early afternoon.  I don't want to take it if I don't need it because then I'm just replacing what I'm trying so hard to block.  I do want to emulate a normal diurnal level all day long.

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