There is differing criteria - some docs use a doubling (which you did) and others want a certain threshhold - 20 or 28 I forget.
The thing is that ... I don't think the test is accurate after you have started steroids. What other testing has been done - adrenal antibodies? ACTH? serum and urine cortisol testing? Saliva testing?
It can be AI - it can be at the beginning where you have symptoms but have not quite hit where your adrenals have quite hence why the test was ok. Hopefully your doctor is decent and does full testing and keeps an eye on you.
hadn't had any steroids or florineff in my system in at least a week prior to testing.......now seeing the difference with the florineff, I wouldn't want to stop taking it for testing-the symptoms had gotten so bad that I could barely get through a day at work.
ACTH and Cortisol work together. You can't know for sure whats going on without both tests be done. Are you seeing an Endro ?If so they should be following up with a lot of other tests. I have found that GP do not know the Endro system. Just keep in mind, it's all fixable. Good luck and keep me posted.
What other tests are needed? I have been doing much better with the florinef up until late last week...have been having asthma issues and it seems to have thrown everything off. I had difficulty sleeping last night and had trouble doing minimal walking around today.......short of breath, pain in the muscles of my back etc. Does anyone else recognize these symptoms.
We are not doctors - we cannot diagnose. Sadly, a lot of symptoms are pretty general. I know from my experience too that high and low cortisol symptoms are pretty similar - and high cortisol can cause sleeping issues but so can a lot of things.
If it is something endocrine, you really need to get a lot more testing and sets of testing over time. Have you lost weight or gained? Do you crave salt?
Have they tested aldosterone and renin? It could be an issue there - that could relate to the POTS too.
what kind of steroids are you using once a week and how many mgs? i wa originally diagnosed with secondary adrenal insufficiency--then another endo said i didn't have it because i had had steroid shots in my heels 18 days before the stim test. He somehow missed the labwork that showed low cortisol and low ACTH BEFORE the steroid shots. i have had two docs tell me that they didn't think the shots would hav shut my adrenals down, but i've also seen info that i can stay in your system for 30-40 days. so, i know my adrenals were struggling, but i need to get a new stim test done. i staarted with cortisol of 2.4 and ACTH of 5. 30 min cortisol was 11.6 and 60 min was 11.3--i think those are the right numbers. my family doc looked at my test and said it was normal---i guess because he saw that my original level had more than doubled---however, the lab report specifically stated that it was looking for a peak level of at least 20. You had to read the extra print below the levels to see what the test was looking for.
I hate it when a doc looks at only a portion of a test result without reading the whole thing!!!!
if your test was looking for a level of greater than 20, your results are kind of borderline, if they were looking for the first level to double, your test is normal----except for the fac that you have been taking steroids, which may or may not affect the test, depending on what and how much you are taking.
I believe there is a way they can do the test even if you are taking steroids, but i would recommend not taking them for while and then having the test redone. I'm not sure who could tell you how long to be off steroids before doing the test----as i got differeing opinions about my shots from different docs and different websites.