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Addison's Disease Message Board

Addison's Disease Board Index

Thanks, Chris.

I find it incredibly frustrating that his adrenals will atrophy and there's not a thing I can do about it. It seems like there should at least be a way to preserve their function so that he doesn't end up primary, with the extra regulation that it entails. I did read that someone was doing a study one time on inhaled ACTH, but as far as I can tell, nothing came from it.

He has had his growth hormone checked pretty thoroughly. When we were initially looking for a diagnosis, his IGF came back normal. Then, shortly after the adrenal insufficiency got diagnosed, the endo. did the glucose challenge test and the argine stimulation test and his GH did appear borderline. Since beginning Cortef, he has grown 4 inches in less than 2 yrs. and the endos. feel that due to the rapid catch-up growth, we can assume that his GH is fine now that the low cortisol has been treated. He did just have an IGF-1 test a couple of weeks ago, and it was normal once again.

His TSH from 2 wks ago is close to the range you mentioned, at 2.6. I don't see any signs of hypothyroid, but I guess they could be too subtle for me to notice. At any rate, we've been checking his thyroid twice annually, and at this point, the endo. plans to start checking him only once/year.

He is also planning to start checking the sex hormones after his 10th birthday next year. If his LH and FSH are low, can that be treated directly, or would he just be given testosterone? That all seems tricky to me, as boys obviously enter puberty at different times, and how will we know when the hormones *should* kick in?

I'm trying to remain optimistic, but I realize that the odds of having one isolated deficiency are slim to none. I hate just having to watch and wait and wonder about every little ache, pain or strange eating/drinking pattern though!

One further question for you - do you know if there is a way to tell if hypopituitarism is congenital or not? The doctor is currently theorizing that Andrew was born with limited ACTH, and that it started to fail around the time of his 1st birthday (based on growth pattern and history of illness). I have read that they have found some gene mutations that account for it, and given that Andrew has siblings, especially a younger brother, I am trying to figure out what the odds are that he will have a problem as well.

Thanks again, Jill

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