- 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.
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.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.
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.
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.