Its decision time.
I have had several cortisol tests after discovering an adrenal tumor. Some normal, some "slightly" high.
First test was 24 hr UFC, post (unrelated) abdominal surgery, result 164.5 (range 10-80), drs not sure if surgery contributory to high level when I suggest this possibility. So more tests.
Second test was .5mg dexamethasone at 11pm followed by 8am serum cortisol, result 4 (range 5-25), drs agreed I suppressed, but they feel 1.8 is the magic number to rule out cushings and I wasn't that low, so I ask for more tests.
Third test was two midnight salivary swabs, result "normal", but I wasn't given the numbers. Endo agrees diurnal rhythm is maintained......and its a highly sensitive test, but says it doesn't rule out cushings syndrome.
4th test was a 48 hr dexamethasone, .5 mg every 6 hrs, followed by 24 hr UFC, result 28.5 (range 20 - ?) Endo says I should have suppressed 20 or below, but because I missed one dex dose, she feels the result isn't as reliable as it should be. More tests.
5th test 8am serum cortisol (because I want a baseline and have never had one). Result 6.4 (range 6.2 - 19). It appears I'm normal, even a little low.
6th test, another 48hr dexamethasone, .5 mg every 6 hr, did NOT miss a dose, followed by an 8am serum cortisol, result 2.5 (range 6.2 to 19). Endo firm on 1.8, now wants to schedule surgery.
My concerns: I have no symptoms. Sodium, potassium, cholesterol, all great, have been great for many previous tests. Blood pressure, great, glucose great. I feel actually very good.
I know there can be a cyclical secreting pattern, sometimes up, sometimes down. But how often does a body cycle through this? Daily? Weekly? Unknown? Would that explain why some of my tests are normal, and some are "slightly" high.
Really, 1.8 suppression is 100% accurate to rule out cushings syndrome, Endo even said they'd consider suppression of 2.0 to rule out cushings syndrome. Endo says suppression not achieved.
I suppressed to 2.5. I know it's not enough to "100% rule out cushings syndrome" But that doesn't mean its 100% ruled in either. Am I not considered to be suppressed if I go more than 50% below my baseline???? My baseline being 6.4 done just a week previously.
In the big picture, I have some normals values, and some slightly high values. Does cycling happen that fast (up and down). Besides the tumor, is there any reason for a person to be up and down? For example, my recent 8am serum cortisol baseline was not fasting. I asked a couple questions about that in a different post because it seemed I was normal, but very low. and I thought food would have made it higher.
My test values were all over - ALL over. So it was hard except that at some point, I turned a corner and then I went downhill. I truly and honestly wish that I had been treated promptly so I would not have been so damaged. While you may not feel bad - please note that cortisol /pred/ hydrocortsone / corticosteroid medications are anti-inflammatory meds used for pain and help the body feel better. So people typically feel better during a high and worse during a low.
People that I know the cycles vary - some people can tell, I could not. I know some people that swing both super high and super low and end up in the hospital for AI even though they still had Cushing's with their cycles but that is not common.
Your doctor did a lot of testing (thankfully). My tests were never more than slightly high and I am totally disabled now with crumbling bones and weak muscles - so you hope that the cortisol is not doing hidden damage to the eyes, etc. Tests do not correlate to what is going on.
You are only going to really know when you get the thing out and compare how you feel then to now.