SAI following a stroke/vascular event
Hello,
38/F/Uk
Im relatively new to my diagnosis and looking for some support, as its been a lot to take in and a massive upheaval
I have a diagnosis of Secondary Adrenal Insufficiency (Diagnosed officially in March 2026) although it was first identified in late Jan and hydrocortisone 20mg started
Background: I woke up from a dead sleep on Fri 3rd October 2025 with the worst head pain i have ever had, as I have a hx of migraines, I took pcm and went back to sleep. I went to work, took my young son to a family farm day, and on the Sunday PM, attended MIU to be told it was probably a migraine and to follow up with my GP on the Monday morning. Which I did, and by then I was sweating non stop and soaking through clothes night and day, my left peripheral vision had vanished, I was vomiting and was hypertensive. Straight to ED where a CT was performed, and I was told after 6 hrs it was just a bad migraine and released with some triptan medication
For the next four months, I became a shell of my former self. I lost 7kg in 5wks, I slept 18hrs a day and couldnt stay awake for more than 2hrs at a time. My HR wouldn't drop below 100 at rest and could peak at 175 climbing a single flight of stairs, I couldn't stand for more than 10 min, I had a non stop tremor in my left hand side and weakness so profound i could no longer carry my young son. I saw the GP weekly, and had 9 panels of bloods including a myeloma screening. I was signed off, and ultimately had to quit my job because I couldn't even manage a reduced shift of 3 hrs.
Then late Jan a final blood panel was done, and an 8am cortisol was added on the hunch of a GP. I started hydrocortisone the very next day, 20mg (10/5/5) and within 48hrs it felt like the power was being switched back on.
SST was done in Feb, and I met my consultant late March. I've had two crisis' (mid April and another just 5 days ago) both needing paramedics and my IM shot. 1 week ago it was discovered that the October migraine may actually have been a stroke in my thalamus so I'm under going an urgent referral to neurology for further investigation as it explains both my left hand side weakness and tremor, as well as SAI
Does anyone here have a similar onset? All the reading i am doing is suggesting that a tertiary cause like a stroke is quite rare, so im feeling a bit alone in all this. My endocrine team are honestly rubbish, and I have been left alone to manage my condition since March, despite my two crisis and am awaiting a routine appt for my next review
Going from a completely independent, healthy mum of a 3.5yr old old, to someone who cant stand up for more 10 min, is reliant on a walking stick and needs a nap in the car after visiting the supermarket has been a total mental rollercoaster.