Are most of you diagnosed before or after having an adrenal crisis? I would also like to share my crisis symptoms and see if any of you have experienced similar symptoms:
wave of heat coming over me, sensing that I know I'm going to go down on the floor, nausea, profuse sweating, low blood pressure.
My symptoms are a tad different - I get a fever, a crushing headache, confusion (this really bites as well, I cannot always think to take my medicine!!!), nausea, vomiting, low BP...
Are you getting a stim test and now replacement corticosteroids? Make sure you get extra for stress dosing. Also you need an emergency injection, act-o-vial of solu cortef or solu medrol, alcohol pads, medic alert bracelet and all. I also suggest getting a script for zofran or phenergan as vomiting is bad for us.
Make sure you know what to do. There are some links in the health pages.
My family Dr. suspected adrenal insufficiency after my crisis and after careful review of med history, low BP , low blood sugar, on going fatigue and stress. She is the one who set me up for initial blood, urine and saliva tests. When those tests showed low cortisol she referred me on to an endo specialist. He sets me up for the same tests, then schedules appt. every three weeks to tell me results and to set up more tests and another appt. in three weeks etc..(just had stim test on Wednesday, of course I won't know the results until my next 3 wk appt), this is a recurring theme with him, yet I am receiving NO treatment. My family Dr. is going to give me a new referral as we are both disappointed in his methods.
It seems you need a better endocrinologist than what you've got. I note you live in Iowa. Are you near/in Iowa City? If so you could try University of Iowa Hospitals and Clinics for a endocrinologist. The facility is rated #26 in the US.
I live in Sydney, Australia and spent many months with an idiot of an endo until I found someone who knows his work.
You must understand that in endo more ppl have diabetes so most endos specialise in that. As for adrenal matters, that is not so common, relatively speaking.
If he is seeing you every 3 weeks (which most endos push out to months) and is running the tests, and well, I consider it prudent not to put you on steroids until you know the test results as you cannot do any testing once you are on them as well if you are put on them and you don't need them, then it is a mess too - so it sounds like he is being cautious (a bit slow)...
I think that is why he is doing it that way - but like most docs, not saying why...
If you just had the stim test then you should be at the end of testing and should get treatment soon.
What exactly was your diagnosis for having Adrenal Crisis ?
I have NonClassical Congenital Adrenal Hyperplasia, I can't produce enough cortisol -ever! So I take Prednisone daily , tiny amounts as replacement therapy but any major illness or medical stress throws me into Adrenal Crisis needing stress dose of cortisone to get through it, then wean down to normal level...Now I have a have at home Solucotef and Syringe to do myself (or family member can do if I'm already out-of-it) and don't need to go to the hospital emergency room anymore...But I've never met Anyone else with this condition, nor have I heard of anything similar but different...just curious...
There have been some other people posting with CAH - not sure about the type though...
We all have to stress dose and I have the act-o-vial too... You should make sure your script is a renewable one so you can get one as you need it (and if you need a lot have your doc give you several). I try to resolve my crisis with anti-emitics (like zofran and phenergan) and the oral meds and try to keep them down - before resorting to the needle but I have HC not pred and HC acts faster and can be used in an emergency and pred should not... Are you a salt-waster or not?
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