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
Baseline ACTH 9 pg/mL
6/03 test (after 1 month no Flovent, and 1 week no Cortef)
baseline cortisol 2.2ug/dL
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
baseline ACTH 22 pg/mL
Growth hormone stimulation
baseline 3.99 ng/mL
post arginine 10.26 ng/mL (ref. range lowest normal is 10)
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.
I can't find them! All of Andrew's test scores "disappeared" during our move, and the scores I posted are directly from the records of our new pediatrician here (I had them copied and given to me, so that I would at least have some records). I'm not sure how the ped. here only has record of these tests via letters from our new endo., b/c I know I gave the new ped. the originals of all the tests from our original endo. and ped. when we moved here from Phila******a. Ugh!!
Is it really crucial - do you think anything can be discerned from the scores without reference ranges? I always read about "general ranges" and what they should be. I guess my next move will be to track down all of Andrew's scores through the endo. here (he was also given all the original lab results)- but it will be easier to do in person when we have his appt. , which isn't until Jan.
This is exactly the type of secondary adrenal problem I'm experiencing--following years of Flovent inhaler. My morning cortisol was 3 and afternoon was 1. My stim tests remained very depressed as well.
Two endocrinologists have told me now that sometimes the adrenal glands never start to function again on their own even after the inhaler is discontinued. I really hope this isn't true, especially for your son.
Since you've relocated, I assume you have a new physician now. What does he/she think of the situation?
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 Aldosterone, which I undestand you don't yet have, our range for children age 2-10 is: 3-35 (lying down), 5-80 (sitting up). Renin says is should be anywhere from 50 -585 (lying down for 30 min. before draw). Morning cortisol for age 8 is 3.0 - 21 (ug/dL). For ACTH Plasma, 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? ~ Tracy
"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"
Jill: Wow! I'm a mother, too, and I hear you about being worried regarding tapering him off his medication. Frankly, I don't think I'd do it in your shoes. ::cluck::cluck:: I'd want a doctor to guide us through it. Problem is, finding a doctor to do it.
I don't know how they're going to re-test me. I'm still so new at this, I'm totally clueless. They actually had to increase my dose a bit last month when I ended up having problems, so I'm obviously not ready yet.
My endo explained that this replacement dose isn't as much steroid as the amount our bodies--mine and your son's--were absorbing from the Flovent. ::shrug:: Only time will tell if we ever start producing enough ACTH on our own to jumpstart the adrenals. ::sigh::
Your doctor-shopping sounds like a nightmare, though! (((hugs)))
[QUOTE=foxtrot]My son is also on Flovent. Does long term use cause adrenal problems?????????
I don't know about long term use, but there is *plenty* of evidence that high doses of Flovent will suppress the adrenals and it does not take that long to happen. In fact, there are new studies coming out that suggest more of it is absorbed systemically than initially believed, and so even somewhat lower doses may cause suppression. My son was not on these high doses that some studies cite (he took 2 puffs of Flovent44, twice daily for 3 years, and occasionally bumped up to 110 during a cold), which is why specialists dismiss it as a cause.
The only reason that I wonder about Flovent as the cause, is the timing of my son's symptoms. Most pulmonologists and allergists point out that if anything, the Flovent could have masked the symptoms of insufficiency, and helped him. The fact that he was still on the Flovent when his symptoms became serious proves that it couldn't have caused the adrenal problems, they say. I wonder though, if the usage of the Flovent caused his system to shut down completely. But maybe, as Chris said, his adrenals were weak to start with, and the Flovent hastened things along.
Don't know if this can be posted or not, but thought I'd give it a try. For reference, Flovent is fluticasone. I should also note that my son's twin sister was on Flovent for as long as he was, but shows no symptoms of adrenal impairment.
Crowley, S. (2003). "Inhaled glucocorticoids and adrenal function: an update." Paediatr Respir Rev 4(2): 153-61.
For the vast majority of asthmatic children, treatment with inhaled glucocorticoids is safe and effective. Mild impairment of adrenal function of doubtful clinical significance is known to occur in some children inhaling > or = 400 micro g/day budesonide and beclomethasone or > or = 200 micro g fluticasone. Recent reports of life-threatening adrenal failure in asthmatic children inhaling glucocorticoids, some of whom were prescribed licensed doses, have prompted the recommendation that the use of high-dose inhaled glucocorticoids, particularly fluticasone, should be avoided. However, the importance of correctly diagnosing asthma, of using the minimum dose of inhaled glucocorticoid required for symptom control and of regular growth-velocity assessment cannot be over-emphasised. Appropriate asthma management including the early introduction of steroid-sparing agents such as a long-acting beta-agonist or leukotriene antagonist may reduce the morbidity associated with inhaled glucocorticoid use but some children, for reasons as yet unknown, may exhibit increased sensitivity to the systemic effects of inhaled glucocorticoid treatment. Possible explanations for this, with reference to the pharmacology and molecular mechanisms of glucocorticoid action, are accompanied in this review by a summary of the recent case reports and discussion of assessment of adrenal function.
I found this post while googling 'Flovent & Addison's Disease'. My son (13 yrs old) is on Flovent 110 which he takes 2 puffs each twice daily. 2 sets of tests: cortisol: 5 & 5.9 range:6-28; and ACTH 18 & 13 range 0-46. No addison's & no thyroid antibodies. Still trying to get the stim test done. He's been on Flovent for about 5 years. He's not on meds for AD yet, since we're still tyring to get things figured out.
Has there been any reason thought by members of this board about the connection between AD & Flovent use? And if anyone else has had similar experiences, do you ever get back your adrenal function?
My doctor thinks I have secondary adrenal insufficiency instead of primary, because I was on nasocort for allergies, advair for asthma, and also took steroid injections in my neck for a ruptured disk. All of this, he thinks, caused Adrenal insufficiency and cushing. I have all the symptoms of addison's except the skin discoloration, but I also have the symptoms of cushings. My cortisol am level was 1.4 and my dhea was -15. So, I do think the use of steriods can cause adrenal insufficiency in a few people.
Thanks for your reply. My son is getting his cortisol stim test (what the doc called it...I believe that is the same as the ACTH stim test) on Monday. I'm reading through a lot of info trying to understand all of this and looking for answers. If his adrenal problems are traced back to Flovent, I'm hoping that it can be reversed and not a permanent suppression.
Good luck to you with your health!