Before I ask my question, here's a brief history - My now 8 yo son was diagnosed with adrenal insufficiency last year, after almost 3 yrs. of searching for a cause for his weight loss, lethargy, etc. Last spring, after his 8am cortisol came in very low, he had the growth hormone test(low normal) and the glucagon challenge test, as well as a couple of ACTH stim. tests b/c there was some debate as to whether his disease was primary or secondary. His MRI was normal and all other hormones are normal. He also had been diagnosed with asthma at age 4, so there was some debate about whether the inhaled steroids could have caused the insufficiency. All doctors insisted that it was not possible, as his dose was too low.

Now, fast forward a year, and we have moved to a new city and he has a new endocrinologist that wants to explore the asthma medication link. He felt that the best way to wean him from the Cortef and see if his own HPA axis would kick in on its own was to let him "outgrow the dose" of medication (he has gained 13lbs since last spring!) and do an ACTH stim. retest, which is *tomorrow morning.* THere is a different twist to this test though, b/c the endo. took him off of the Cortef and put him on dexamethasone today. The nurse seemed unable to explain why, and after spending a good part of the day researching this, I don't quite understand why. It is my understanding that the dexa. would suppress the ACTH for the test tomorrow. MY question is: Why would we want to do that??

If it weren't for the debate as to whether his AI is primary or secondary, I would never put him through the test again, as it is quite clear to me that his HPA axis has never kicked in on its own - the poor kid is falling apart without enough medication!

Thanks so much for any quick insight you might have into this!! Jill

Thanks so much for your quick reply Chris! You brought up some interesting facts that I hadn't considered, adding to my list of questions for the endo. today.

Here's what I learned today at his stim. test - assuming that Andrew "fails" the test, the dr. said that it is time to finally quit being skeptical about the diagnosis and officially call it an isolated ACTH deficiency. Today he did also check his thyroid levels again, as well as growth factors, but as his growth has picked up since beginning the Cortef last year, I am sure that will be fine as well.

Andrew's ACTH score on his first stim test last year was 9 while on inhaled steroids, but on the second, it was something like 46 (after a month off of asthma meds, and after being tapered from Cortef), which is why this dr. wanted a repeat. He felt that the second score could mean that Andrew's HPA axis was beginning to kick in on its own, even though his cortisol was still low. This is the reason for allowing him to supposedly "outgrow" his Cortef dose (he is now almost 50lbs and is on 7.5/day which the dr. claims is a low physiologic dose?)

As for the dexamethasone question, the dr. explained that the reason he had him on that yesterday was simply to replace the Cortef so that his body wouldn't get too stressed and cause a crisis. He claimed that dose of dex. was low enough that it should not in any way affect the outcome of the test b/c it wasn't enough to suppress ACTH. Of course, I'm left wondering how he knows that for certain?!

We are actually very glad for the 13lb. weight gain - he hadn't gained weight and had actually lost ground between ages 4 and 7, so that he was below the 2nd% on the growth chart. He actually began losing ground on the growth chart at age 1, but at that point, everyone felt that was normal. He is now up to just above the 10th% - YAY! He had started the asthma med (Flovent) at age 4, which is when he quit growing completely, which is what made everyone suspicious that it was the cause, even though his dose was low. His asthma, however, improved dramatically as soon as he began the cortef last year (the year before he had pneumonia 3X, so I found your comment about that stressing the adrenals to be interesting), so that he needs no medication for it now and seems almost "cured." Do you know of any websites or books with info. about a connection between AI and asthma? I would be quite interested.

I am so thankful that I found this board. It is strangely comforting to know that others have experienced the same frustrations. I thought I had become very knowledgeable about Addisons in the past year, but I have already learned so much more! Jill :)

Hi again,
Thanks for the book info.

I have to say, when we left the hospital yesterday, I was feeling like I had gotten some satisfactory answers, but now I'm wondering again. Why do you feel that an osteopath is better able to help? We were diagnosed at the top Children's Hospital in the nation, and since moving last fall, now we are at one considered to be in the top ten. The endocrinologist here is supposedly one of the best anywhere, specializing in growth issues. Maybe I am placing too much faith in him.

In his defense, I will say that the dose of Dex. he gave was minute - the strength is .5mg and Andrew only took 1/4 tsp. of that strength. The pharmacist said that there were no pills even small enough to mimic that dose. The endo. called it a low physiological dose.