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Addison's Disease Message Board

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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.
Hi PunyDeb,
Our new endo. was very suspicious of the timing of Andrew's growth failure and other problems, since it all began within a few months of beginning the Flovent. In fact, he was so convinced that Andrew's test last July would have normal results that he was shocked when it didn't. I don't know how it could have though, when he had been on steroids for over a year!

As I think you know, there are many studies linking Flovent to adrenal suppression, though usually only in higher doses than what Andrew took. My family and I have a history of being extremely sensitive to medication though.

Initially, our other endo. was suspicious of the Flovent as well, but after the second ACTH stim. test decided that the inhaler could not have caused the problem. We have had numerous pulmonologists and allergists insist that the Flovent was not the cause, and I believed them for a long while. However, when I put all the stim. tests side-by-side and look at the numbers (his cortisol has started out a little higher each time), I can't help but be suspicious. His ACTH was so low the first time (on Flovent), higher the 2nd time (no Flovent or Cortef), and low again the last time, but not *as* low. Of course, Chris (on this board) says that the numbers are essentially meaningless without ranges, so I could be making something out of nothing.

The other thing that makes me suspicious of the Flovent is that an isolated ACTH deficiency is so incredibly rare. He is not having any of the other problems so many Addisonians seem to have either (I shouldn't write that, it'll jinx him!). Since starting cortef, he is energetic and healthy, healthier than his "normal" siblings, though still on the skinny side!

I have actually considered trying to have him do an extremely slow taper from the Cortef over next summer when he is not in school and I can watch him closely, but the dangers of that scare me. But, the dangers of long term steroid use are very real too. Is your doctor going to taper you before re-testing you in March?? Please be sure to let me know what you find out at that test. Jill

Sounds like having the adrenal antibodies (and the thyroid, too) would be invaluable! Aldosterone should be low, too, if Andrew is primary, no? Thou I understand Travis can have isolated low aldosterone, it doesn't seem that it can go the other way, except for secondaries. Might I TRY to help by posting the norms for OUR labs, as told to us, or as down on our typed lab records? I would think that as long as the measurement units were the same, the range would be the same, but that may not be true at all. I will list the ranges as per Travis' lab tests. For [B]Aldosterone[/B], which I undestand you don't yet have, our range for children age 2-10 is: 3-35 (lying down), 5-80 (sitting up). [B]Renin[/B] says is should be anywhere from 50 -585 (lying down for 30 min. before draw). [B]Morning cortisol[/B] for age 8 is 3.0 - 21 (ug/dL). For [B]ACTH Plasma[/B], I have the range being 6-48 pg/mL (but listing no age or fasting/time specifics, if they vary).
I wonder if you knew the name of the lab that did these prior tests, could you call them for their normal ranges to make sure you had the right info? Sorry you are having so many doubts troubling you. What out your little guy. Does he also need the inhaler? ~ :wave: Tracy

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