While I've not been diagnosed, I am pursuing testing.
My first test was a 24 hr Urine Free Cortisol test. The result was 44 with an upper lab range of 50. My endo doesn't seem to be concerned.
I also am hypothyroid but can not take meds because it raises my blood sugar and drops my Free T3 level to just inside the low normal range, in spite of having a high Free T4 level. Tried Armour in attempt to get my Free T3 up and it immediately raised my glucose to 319! That is why I suspect a possible adrenal connection as poor functioning adrenals can inhibit T4 to T3 conversion and also has an effect on blood sugar as well..
Would love to hear from anyone who had problems getting a doctor to take the possibility seriously...given it's so "darn rare".