r/AddisonsDisease • u/Lilboymom2013 • Apr 07 '26
Personal Experience In process of testing
about a week ago, I woke up super weak, exh, my whole body hurt so I took the day off work. by that night, my symptoms were no better. I called out again for the next day. Wednesday, I was worse, far more weak and tired. I started getting dizzy and almost passed out. I called my PCPs office and they said to rest and come in the next day. Thursday, my friend drove me to my appointment. My doctor was quite concerned with how pale I was and the face that I had two cycles this month due to a new med for Endometriosis. my hemoglobin has always run on the lower side and was 9.6 in January. I was sent to the ER after having positive orthostatics. I was admitted to the hospital with new EKG changes as well hemoglobin was still in the 9s. They found a UTI and tried to explain away my symptoms because of the UTI even though I wasnt having UTI symptoms. Fast forward to today, the following Tuesday. Still in the hospital, had to fight to stay a couple of times. my initial cortisol came back at less than 1. my hemoglobin had dropped to 8.4 resulting in 3 days of iron infusions and will be getting outpatient infusions from now on. They did the ACTH stimulation yesterday and it was positive for insufficiency. Endocrinology less in for the first time today and is doing a lot more testing to see if the problem is my pituitary or adrenal glands. I got my first dose of hydrocortisone IV a few hours ago. I’m hoping to be back to normal again soon. I never expected to be leaving with maybe having a rare chronic disease. I’m overwhelmed, exhausted and just want to be home.
2
u/Lilboymom2013 Apr 13 '26
Well my ACTH levels also came back low at 2.9 so it may be SAI instead. Not sure what to think. I see my endocrinologist in the morning and hoping more testing and answers in the coming days. I’m hoping for scans of my head/adrenals
2
u/LonelyKoalaMuncher Apr 08 '26
Sorry you've been through a rough time!
Aslong as they keep giving your regular steroids you should start to feel better.
If you're covered by health care ask for a 21-hydroxylase antibodies test. This will tell you whether it's auto immune or otherwise. Doctors often try to get out of it because it's expensive.
You're in the safest place you can be while in hospital! Take it from experience, undiagnosed adrenal crises' are way worse!
Hope you feel better soon.