Hi Kim
I agree with Lisa but also sense you concern so wanted to share my experience of this with you
My adrenals are still off on holiday and doing very little . Low cortisol is termed addisons . Addisions can be primary or secondery . Primary is due to an autoimmune attack on the adrenals . The antibodies for this can be tested for . Steriods and other hormones can be replaced at levels the same as the body makes with no side effects of high levels commonly experienced .
Secondery is due to several reasons . Long term high dose steriods over greater than 2 yrs . It can also be because the pituatry is not signaling properly . The docs will ahve tested brie's pituatry stimulation .
So now they are going to give an artifical form of adrenal stimulant - ACTH . In the UK this is called a short snachten test .
I ahve had 2 of these .
It is , here , an injection of ACTH into muscule , a baseline cortisol (9am ) when it is normally released in the morning . Then 3-4 more samples at half hour intervals . This is an inpatient procedure here
for anyone not only children .
The ACTH should stimulate the adrenals to create cortisol .
The 2 I ahve had made me a little nausated , but otherwise it was absolutely fine .
My first was in may09 , when my cortisol was NIL , but by the time they did the test it had sorted itself out . I had been on steriods full time , 25mg a day ( natural level 5mg a day of prednisalone for adult ) for 6 weeks . They were reduced slowly but my adrenals took a little time
My next one was may 10 . I had been on steriods again 25mg a day since august 09 -9 months . They were reduced and at 10mg I began bursting into tears for no reason . My cortisol was again nil and the ACTH test showed they were off on holiday . ( secondery addisions )This can be tempory or permenant . I was put on a very slow reducing regiemn .
Dr Grattan , masto specalist here in the UK , felt I had not been on steriods long enough to have this effect. ( secondery addisions ). he suspected this was also the source of my angiodeama . My compliment level C3 was also high which indicates lots of inflammation .
So he tested me for autoimmune (primary addisions ) but I came out negative .
My 9am cortisol remains nil , so I am now on replacement steriods daily which is suffiecent to replace my natural level . I have no stress response , which in ill health - viral , bacterial infection , means thet I do not produce enough steriod for that situation . So I get very sleepy ( unable to keep my eyes open ) and teary when a cold etc is starting .
When this happens I double my steriod dose and this gives my body enough to work with with its incresed demands .
So your encrinoogist is doing the right thing checking this to see if Brie's low adrenal response=low cortisol is due to them not reacting to stimulation . As it takes years of very high dose steriods to knock out the adrenals by this route . he knows this and is not blaming this problem on an unlikely cause .
Brie may be responding so well to LOW dose steriods as her body has not been making enough , especially when she has an extra like an infection anywhere or very busy days .
Primary addisions is normally coupled with salt changes esp sodium low , but mine have been absolutely fine . This was why it took an endocrinologist to spot my problem as I wasn't being obvious about my addisions
I am the exception that proves the rule .
idiopathic addisions xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Once my steriods were replaced at a natural level I woke up spontaniously and stopped bursting into tears when i was not sad or depressed . I have 2 monthly 9 am cortisols off my steriod dose , to see if my adrenals are working . So far the remain on holiday .
I know I have an infection long before I am symptomatic as I can't stay awake . i awake take my steriods and wake up properly 1-2 hours later .
I hope this helps
Josie