When do you really know if you have had sufficient tests, done properly, to know if you have enough information to make an informed decision about your condition?
Background, 4 +/- cm adrenal tumor (found on CT for something else). Single tests for catecholamines, aldosterone, renin, DHEA, have found those in normal range, and no symptoms to suggests a problem. Do any of these need to be repeated for confirmation?
The only thing showing positive so far is cortisol, and it is considered to be mild or subclinical, or could even be intermitently subclinical, because I have no symptoms of Cushings (at the present).
BUT I am having a struggle in deciding whether to trust the few cortisol tests I've had, and I want to have every confidence in them, before proceeding to the next step which is probably adrenalectomy.
1st test, two weeks post appendectomy, 24 hr UFC 165 (range 10-80). Endo said high, didn't want to consider any external contributions like the physical stress of surgery, or just plain old high stress of which I'm under chronically, but agreed Cushings is only confirmed when person presents with 3x over the range, so more testing advised.
2nd test, 1mg dex. suppression, 8am serum cortisol was 4 (range 5-25), it was noted I suppressed but endo didn't think I suppressed enough. And I feel the test isn't complete without having a baseline cortisol to know what my cortisol level is/was without dex so I could compare it against the baseline. I think, knowing your baseline, also helps to determine what % decrease you did suppress, because that % decrease can also be considered to interpret suppression.
3rd test, two midnight salivary swabs, no results yet. I think I will show a normal diurnal pattern, just based on my sleep habits. Extremely tired at 9pm, and I sleep soundly until about 3am. If there is a diurnal pattern, does this lower the importance of the daytime cortisol results?
4th test, .5 mg dex for 48hrs followed by 24hr UFC, result 28.5 (range 10-80). I know it should be under 90% reduction from previous (which would be 16.5). So it appears no suppression, but my collection was 8am and 8am, when cortisol would have been at its highest. Not to grab for straws here, but if I had collected at 6am and finished at 6am next day, I would have had only one "high" measure and that would have been the one immediately following the dexamethasone. So again, I feel like I am "just" over.
I also had a stand-alone ACTH test, but am suspicious of the result which read <5 (?) (range 0-46). I'm not sure how to interpret that, except if it is indeed low, it would be expected to be low because of high cortisol (?).
Because there is no solid medical protocol on the management of adrenal tumors, except that if they are over 5cm they recommend excision because the risk of becoming malignant increases to 25%.(even if initially considered benign) The recommendation for functioning tumors is appears to be a gray area. If it is overtly secreting, and/or if the patient experiences symptoms, the recommendation is excise. In other cases, they may wait and if the tumor remains stable in size and doesn't cause symptoms they just continue to monitor.
It's really confusing.