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Addison's Disease Message Board


Addison's Disease Board Index


Hi there, I'm new to this so I'm hoping many of you can help me or sort some things out, I'll try and keep it brief. I was diagnosed with ADRENAL INSUFFINCENCY SYNDROME on 12/04/2006 my cortisol leval was at 10.6 (baseline) then an injection of cortrosyn at 30 min check was 14.4 and then at 60 min was 16.0 (diagnosis was addisons disease), I then was checked again just a baseline cortisol check and a ACTH check cortisol was 6.1 and ACTH came back normal. Anyway the endocrinologist told me I have to go on CORTEF for the rest of my life 15m am and 10 mg pm, which I HAVE NOT started until I get a second opnion...I am female, 5'9, 35, had a hystorectomy a year and half ago..now a 128 lbs initially was 162 and then I started hiking and all of sudden got super tired and the weight just kept coming off...now I want a second opinion as to whether I really have adisions or NOT. I don't want to take the CORTEF and gain a ton of weight, I heard prednisone can make you gain a TON of weight....PLEASE HELP ME, those that are on CORTEF please let me know your thoughts. I also was precscribed some injection thing as well "emergency kit".
I was diagnosed with secondary Addison's three years ago due to hypopituitarism. I have been on Cortef since then, 15 mg in the morning and 5 in the evening. I had lost 30 pounds by the time I was diagnosed, and I gained all that back plus 10 pounds more. I have some friends with Addison's who are on prednisone, and they gained more weight -- by far -- than I did. (I should mention that I hardly do any exercise so haven't really been trying to take it off, even though I hate weighing this much.) The point is, if you have Addison's, you have no choice but to be on steroids for the rest of your life. Theoretically, you are merely replacing the hormone that your body would make anyway, so you shouldn't be gaining a lot of weight if you are on the right dose. And it may take some time until you figure that out. (At one point I was on only 15 mg Cortef, and I could get by on that, but I feel better at 20.) The "emergency kit" is a good thing to have on hand in case of traumatic injury or in case you are vomiting and can't keep your medications down. Sounds like your doctor is on the ball with all that. Of course you should get a second opinion if you aren't comfortable with what your doctor has told you, but be aware that as soon as you start taking the Cortef you will feel better. Good luck!
[QUOTE=LSeagraves]Hi there, I'm new to this so I'm hoping many of you can help me or sort some things out, I'll try and keep it brief. I was diagnosed with ADRENAL INSUFFINCENCY SYNDROME on 12/04/2006 my cortisol leval was at 10.6 (baseline) then an injection of cortrosyn at 30 min check was 14.4 and then at 60 min was 16.0 (diagnosis was addisons disease), I then was checked again just a baseline cortisol check and a ACTH check cortisol was 6.1 and ACTH came back normal. Anyway the endocrinologist told me I have to go on CORTEF for the rest of my life 15m am and 10 mg pm, which I HAVE NOT started until I get a second opnion...I am female, 5'9, 35, had a hystorectomy a year and half ago..now a 128 lbs initially was 162 and then I started hiking and all of sudden got super tired and the weight just kept coming off...now I want a second opinion as to whether I really have adisions or NOT. I don't want to take the CORTEF and gain a ton of weight, I heard prednisone can make you gain a TON of weight....PLEASE HELP ME, those that are on CORTEF please let me know your thoughts. I also was precscribed some injection thing as well "emergency kit".[/QUOTE]


They said you had addison's? Is addison's and adrenal insufficiency the same thing? I always thought Addison's was when you had little to no function of the adrenal glands and just adrenal insufficiency was when when it was a minor problem.

So they diagnosed you with addison's and said you'd be on it for the rest of your life for sure?... Hmm, that's unfortunate.. My test was very similar to yours.. (Started low baseline around 9, went up to 14, then 17, then dropped down to 15..forget the numbers after that, but it stayed around that range)

My doctor told me I have a 50/50 chance of recovering. at the moment I am on 12.5mg but I still need more. He recently bumped it up to 20mg to help me get over this cold.

Unfortunately, you didn't stumble onto an easy disease, and the first year or two seems to be pretty bad for everyone that goes through it that I notice when I started asking questions on forums several months ago.. I got fatigued and lost a lot of weight as well when I started seeing signs.. I'd say your doctor knows what's going on, but I sure hope he is wrong when it comes to being positive you'd need it for the rest of your life.. because with similar results I myself am still holding hope.





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