I came across something new to me that might give some here some answers as to why treatment isn't working.
There is a pituitary tumor that cycles on and off.
When it's on you get cushings symptoms and when it's off you develop severe adrenal insufficiency.
I don't think there is a way to predict when it will cycle on and off.
From what I've read, if you test your cortisol when the tumor is cycled off you will test as low and mistakenly think you have low cortisol or even addison's depending on how low it is.
If you test your cortisol when it's on you will test as having high obviously and could treat yourself with herbs and supplements that lower cortisol. This obviously has it's problems because you will not know that there will be times when you are very low on cortisol and will continue to self medicate for high which could cause an adrenal crisis.
Just because your saliva test said you were low or high in cortisol doesn't mean you are not suffering from both. I'm not referring to those who have high part of the day and low other parts.
Obviously getting rid of the tumor is key to getting well. I've been reading about how liposomal curcumin can target a pituitary tumor as it's very hard to absorb and get the high doses you need. I'm also looking into pau d arco and raw diets. There is a woman who cured herself of this tumor by going on a raw vegan diet, but I think that is a challenge health wise when your in a low cycle.
Here are the words of a woman who was diagnosed with cyclical cushing's:
I went in SURE I had Addison’s Disease, or at least a form of adrenal insufficiency, and even tried to argue that fact. I came out with a LOT of testing for Cushing’s Disease. It was, in fact, the low cortisol periods that I was noticing, but it was being caused by periods of high cortisol. You see, the cortisol takes a big toll on your body and overrides the normal feedback system of your pituitary and adrenal glands. While the tumor is actively pumping out ACTH, it can shut down your own pituitary’s normal production because the pituitary feedback says there is already too much cortisol in your system. Then, if/when the tumor “kicks off” (who knows why they do this), your pituitary is in a lazy state from not having been working and it can take a while for it to kick back in. This can bring life-threatening lows, but generally it just brings low-cortisol symptoms which are still uncomfortable.
I was unprepared for the change in direction at my appointment. I had the right system and hormones, but I was looking at it backwards, and the more I learned about cyclic Cushing’s Disease, the more sense it made, the more things clicked together, and the more I understood about my past and present symptoms. I have cyclic Cushing’s Disease. I had read up a little on this about 10 years prior, when my mother-in-law had died from untreated Cushing’s (she refused treatment and was a stubborn, intelligent women who got her way). I had read through some information with my husband at that time. We had concluded that it was a possibility, but I didn’t have enough of the symptoms (maybe half?) and decided that I wasn’t nearly sick enough for that to be the problem. How wrong we were! I certainly wasn’t as bad as many, but I found that the downhill turns were often sudden and drastic, especially in the more recent years.