Cortisol level of 1-3 but no Addisons disease - what could be wrong?
Im 19 F, white, 5”4, 138 pounds.
I apologize for lengthy-ness, but trust it’s necessary .In the last year, i randomly started having a problem where i would have large scary collapses that frequently occurred at night.
It started out as waking up in the middle of the night with 160+ heart rate, and feeling extremely sick - almost feeling poisoned in a sense is the closest thing i could compare it too? These events got so bad, I ended up having to go to the hospital frequently and ended up going into adrenal shock last December. I felt bad all night, tried to tough it out, then all the sudden lost feeling in my face and couldn’t breathe, heart rate 210 bpm, blood pressure plummeted, and i was fighting for my life trying to stay conscious in the ambulance. It was like my whole body stopped working all at once, worst ive ever felt in my life. Couldn’t walk for around 2 weeks and had to go to a bunch of physical therapy.
I got better after being in the hospital for a bit - but there was basically nothing these people could do for me except get me as nourished as possible because i wasn’t explicitly showing signs of any specific condition based on labs.
I had insanely low cortisol, but nothing else was really conclusive. All they were able to give me was fludocortisone to help me keep fluid down. So once i was a bit more functioning they told me to go to out patient endocrinology to figure out whats going on.
My endocrinologist tested me for Addisons disease, and my adrenals did respond. I had more blood work done too, but the only thing that ever was coming back extremely bad was my cortisol, It was always around 1-3. After being tested and having more blood work, my endocrinologist basically said there was nothing else she could do because nothing was conclusive towards any kind of condition, and they don’t understand why my cortisol is dangerously low. Because of there being no direct answer, i am not able to be on any sort of steroid due to the fact my adrenals are responding and still working.
Does anyone have any slight idea at what could be going on and what i should do next? For more of my medical history, I was pretty badly anemic for a while and iron deficient, but im now getting infusions these next coming weeks. Ive had normal MRIS and CTS. Ive been struggling daily for around 6 months now with daily aura migraines and snow syndrome. I also have had normal cortisol labs come back along the course of trying to figure out whats wrong, i seem to randomly take a turn for the worst and my cortisol seems to randomly plummet but can go back to a normal state at times. I also have PTSD, im not sure if thats necessary to mention but i do notice my collapses are sometimes triggered by stress, and id had a pretty hard time mentally in the past year. I struggled a lot with severe repression and haven’t been to therapy since i was 13. Sometimes I randomly get scared right before im falling asleep and it seems to sometimes trigger these episodes.
If anyone has any slight idea at what might be wrong or what i can do next, PLEASE SUGGEST ANYTHING. Im desperate and not really wanting to go through what i did again.