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Addison's Disease Message Board

Addison's Disease Board Index

I feel like I have spent most of the last 3 months trying to learn more about Addison's (8 y.o. son, Andrew, diagnosed in 4/03) versus secondary adrenal insufficiency. Was hoping that after a 3rd stim. test, I could accept the diagnosis of "Isolated ACTH deficiency," but recently, I just haven't felt "at ease" with that diagnosis again. After all of my research, I do plan to have the endo. run some more tests at his next follow-up - specifically, I want him to check for both adrenal and thyroid antibodies. As far as I can tell, Andrew has never had aldosterone or renin testing either, which seems to me to be negligence by the doctors, even though Andrew has never experienced salt cravings or real dehydration issues. And finally, I want him to get a Free T3 and Free T4 test.

I am posting the results of all 3 of Andrew's stim tests, along with a couple of others, to see what others (Chris??) might think of them. I find it curious that each time, his baseline cortisol has been higher, and his ACTH has been all over the place, despite the tests all beginning between 8:30-9:30am and all being done after fasting for 12+hours.

8am cortisol - .2 (!!!) ug/dL

4/03 test (done while on Flovent inhaler)
baseline cortisol .9 ug/dL
20min 3.4 ug/dL
30min. 3.8
60min. 4.5
Baseline ACTH 9 pg/mL

6/03 test (after 1 month no Flovent, and 1 week no Cortef)
baseline cortisol 2.2ug/dL
20min. 2.5
30min. 2.7
60min 3.0
baseline ACTH 47 pg/ml

The discrepancies in those results probably explain why we did a 3rd stim test this summer (different hospital due to a relocation):

7/04 (after "outgrowing" his dose of Cortef, and 36hrs. no Cortef at all)
baseline cortisol 5.4 mcg/dL
30min. 8.1
baseline ACTH 22 pg/mL

Other tests:
Growth hormone stimulation
baseline 3.99 ng/mL
post arginine 10.26 ng/mL (ref. range lowest normal is 10)

Glucagon challenge
peak score 6.81 ng/mL (all I know is that we were told that he "flunked" that one)

I guess part of me is wondering whether these all indicate that his adrenal function might kick back in if we did an extremely slow taper from the steroids. I am still skeptical that his low cortisol was caused by the inhaler suppressing it for 3 yrs. The endo. completely believed that also, until the July test when it still wasn't normal (how could it have been after 16mos. on Cortef??) and now he just says it's idiopathic.

Also, his growth hormone was definitely borderline, however, since beginning cortef, his growth has been phenomenal. That leads us to conclude that it was low due to the low cortisol.

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