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Addison's Disease Message Board


Addison's Disease Board Index


[QUOTE=WandaB]Were you actually diagnosed with adrenal insufficiency? Did you have the ACTH stimulation test?[/QUOTE]



Yes I did. about 16 months ago, it started at 9 and bumped up to 15(from 11-25 on the 'average' chart). He just has me on 12.5mg right now.


[QUOTE=gettin' better]Hi Chris
I hear you. I have hypopituitarism, which has resulted in my thyroid, adrenal glands and growth hormone levels going south. I take replacement hormones for all of these conditions, plus I have type 1 diabetes. In the first throes of my illness, I, too, felt hopeless. Luckily, I have a great endocrinologist, who insisted that we could regain some sense of normalcy once all the hormones were balanced. It took about a year, but growth hormone was the thing that finally restored my life. My questions to you are these:
Do you have a competent endocrinologist?
Have you been tested for growth hormone deficiency (arginine stim test)?
What dose of cortisol are you on (it sounds a bit like you are underreplaced)?
There is light at the end of the tunnel, and I hope you are able to find it. Having the right doctor is everything, so if you don't have one now, go looking. Hang in there.[/QUOTE]

That's what I have, I'm hypopituitary as well(although my ACTH is fine, my adrenals are just not responding well), but I had no arginine stim test done. He looked at the IGF-1 Free result and said my IGF was fine(it was 56 out of 20-80).

Not sure if he is competent or not, I have been making improvements, but mainly the improvements are from slowly bumping up the cortef. He tried to get me off of it awhile back but I just got sick and I got a throat infection that lasted 3 weeks then he realized I needed it, but he seems hesitant to bump it up. After reading about it I understand why.

All I know is if I don't exercise or do anything physical, I feel almost decent, but when I do, the next day..no appetite, I vomit just trying to take a multivitamin from gagging, some salt craving, diarrhea.. horrible insomnia.. it's just a real humbling experience when I feel I'm going to get through this and then any excursion at all and I'm in for a ride.

Interesting thing is, instead of taking a ridiculous 6 sprays a day of desmopressin for diabetes insipidus I'm down to 2-3 which is pretty normal, and this was only after bumping up the cortef to 10mg a few months ago.

The thing is, everyone that seems to have a horrible time with adrenal insufficiency seems to be taking the upwards doses of 20-30mg a day, and since the adrenals only create 20mg a day it seems like overdoing it causes a lot of damage in the long run. Honest opinion(s), does it seem like I need more?

I've yet to talk to someone who doesn't have a sad story just staying awake let alone having any decent exercise or sexual function that is taking that high of dose on the several boards I've frequented over the time. Just feels like I may be headed in the same direction..

By the way thanks for letting me vent earlier, lol. i feel a little more stable now lol





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