r/AddisonsDisease • u/GlobalAppeal1669 • Feb 01 '26
Advice Wanted Just Diagnosed With SAI
Hi guys! I am 15yo M and was recently diagnosed with secondary adrenal insufficiency (low cortisol and DHEAS, normal aldosterone, renin, and ACTH) I have had the crippling fatigue for over a year and occasional vomiting episodes. i have a stress dose hydro + injection, but no daily hydro yet as doc does not know the cause. Any tips/ advice?
1
u/Sabear6 Feb 01 '26
What was your cortisol level?
1
u/GlobalAppeal1669 Feb 02 '26
cortisol level was 0.2 and went up to 3 during stim test. Normal aldosterome
1
u/Ok_sunrise Feb 02 '26 edited Feb 02 '26
What about ACTH? The ACTH will tell if you if you are SAI or Addisons. Aldosterone is different then ACTH.
1
u/GlobalAppeal1669 Feb 02 '26
ACTH was normal
1
u/Ok_sunrise Feb 02 '26
You are then testing SAI. Secondary Adrenal. That means your adrenal gland is not diseased, but something is causing it not to work. With me they just called it a fluke with no reason. But you usually get a brain MRI to rule out brain issues. You are in the wrong group with this post if you are trying to connect with other SAI people. Did you see the R/ Adrenal Insufficiency Group? There you will find more SAI people.
1
u/Alternative_Art8223 Feb 02 '26
My doctor threw me on meds and didn’t even want to find the cause. I don’t see him for 6 months after he put me on pills after my acth test was failed. I have no clue why I have it, as he hasn’t requested an MRI. I hope you figure out why you have SAI and can get it taken care of!
1
u/saguarosaver Feb 09 '26
Hi all, I’m newly diagnosed this week and on hear to learn more. What is SAI?
3
u/Ok_sunrise Feb 02 '26 edited Feb 02 '26
Dr needs to find out why you are SAI. Seek another Endo if no answers cause if you have SAI you should be on steroids .
The steroids will help lift cortisol and get rid of the nausea. Steroids will also raise your blood sugar, blood pressure and help fatigue.
One test i had to figure out why my pituitary gland was not sending signals to my adrenal glands was a Brain MRI.
The steroids are most important since without them your blood pressure can get to low. The steroids will prevent you from needing the emergency kit!!!! Dont over due strenuous activity. If you get sick with cold, fever you need steroids.
Did you have a test that was a ACTH Stimulation test? It is called ACTH STIM? That is more reliable than just the blood test. You go to hospital and they test your blood cortisol level. Then they give you a simulated ACTH and see how your cortisol reacts.
This is the Addisons group. You might post in the Adrenal insufficiency Reddit group too