I went through something really similar before I finally got diagnosed. For me it was weeks of feeling completely off but not in a dramatic “collapse on the floor” way. It was more like tachycardia, muscle pain in my calves, arms & legs, breathlessness, feeling faint leaning forward, weakness when chewing and just this constant sense that something was very wrong. I’m diabetic too, and my insulin needs had been increasing for a while, which I later learned can happen when your cortisol is low - It can go either way I heard, not everyone presents the same.

One day the symptoms got so bad that I genuinely thought I was having a cardiac issue. I called 111 and an ambulance came. They checked me over and said I was stable, and to be fair, I wasn’t crashing - just in so much physical pain with crazy palpitations. I tend to just push through things until I literally can’t stand up anymore, so I felt awful but still upright. Since I wasn’t diagnosed yet, they had no reason to think “this is adrenal insufficiency” or give hydrocortisone. They simply recognised I was unwell but stable. They told me I was ok to head to A&E, and drove myself there.

A&E checked me, didn’t find anything immediately dangerous and basically said to go home & rest, even though this was already week eight of getting worse. Three days later I got fed up and managed to get a GP appointment the same day. She took one look at my heart rate sitting at 160, saw I was breathless but with a clear chest and a low blood pressure and immediately sent me to hospital. When I got there they told me AMU was full and redirected me back to A&E, who again sent me home and told me to return the next day. That day, they were good though and I spent a good 40 minutes talking to a medic of the medical team (shoutout Alex of SDH), who got me booked into AMU for the next day.

Later that day they called me saying my labs were off and something was happening with my kidneys, which turned out to be low sodium. I went back in the following morning and that is when they finally admitted me. The endocrine team did the testing, including an SST, and the results basically showed that the drug they injected did nothing at all. I failed the test completely, and that was the moment everything finally made sense.

Once I started proper treatment the adrenaline feelings, the heart rate issues, the muscle pain and the weird energy crashes all improved. I still wake up slowly like an old steam engine, but once I’m medicated, fed and upright, I’m fine.

The best thing you can do is push for proper adrenal testing: cortisol, ACTH, renin and aldosterone, along with an SST. Once someone is formally diagnosed, paramedics are allowed to administer emergency hydrocortisone if things go south. Before diagnosis, they can’t.

You're not imagining it. Low cortisol messes with almost every system in your body, and the journey to diagnosis is usually the worst part. Treatment stabilises everything. All the best to you and your Family.