Secondary Adrenal Insufficiency 101

Following my surgery (the adrenalectomy and tumor removal), Secondary Adrenal Insufficiency is almost always present (particularly the longer Cushing Syndrome went on undiagnosed, me 10+ years...). Endocrinologist 1 did not diagnose this - again, more to come when the time is appropriate. But in July 2025, I was diagnosed postoperatively with SAI. And because I was underdosed April - July, I was also diagnosed at the time with Severe Glucocorticoid Withdrawal Syndrome. Basically, the dosage I was on was just enough to keep me alive, nothing more and I was suffering, hard.

The Core Concepts of SAI:

Secondary Adrenal Insufficiency is the result of removing the tumor. That tumor had been overriding the HPA axis and suppressing my adrenal glands and pituitary gland for years. During that time, both glands physically shrunk (atrophy) - so not only were they not functioning for years, but they were actually smaller, too. When the source of the cortisol production was removed (tumor), it took with it all cortisol production.

Side note: The tumor was removed because the levels of cortisol were SKY HIGH - details on my pre-diagnosis, later. Letting it grow would have eventually killed me (stroke or cardiac arrest). So, while this recovery period is SO MUCH WORSE than when I did have active Cushing Syndrome in - I couldn't avoid the removal.

So two things to know about SAI:

(1)I am steroid dependent for survival until my HPA axis regains function.

(2) If there is any reason that pill cannot be absorbed (vomiting, severe diarrhea) or there is some traumatic situation that requires additional cortisol beyond the medication my body can't produce (car accident, severe emotional distress) - I am at risk of going into adrenal crisis.

Adrenal Crisis: a noun, something I would not wish on my worst enemy

I had ChatGPT help me explain it.

Then I asked ChatGPT: How can I explain the severity of an adrenal crisis?

If an adrenal crisis is not treated with emergency steroids — either an injection (solu-cortef) or IV hydrocortisone — it becomes life-threatening and will be fatal. The rate of decline varies: some people deteriorate within a few hours, while others may survive 1–2 days, but the end result is the same — without cortisol, the body cannot sustain blood pressure, blood sugar, or circulation. Untreated adrenal crisis is not survivable. The only question is how fast someone will collapse, not if they will. This is why medical guidelines emphasize immediate steroid treatment at the first sign of crisis: delaying treatment is dangerous and potentially fatal.

To learn about it in more detail, Adrenal Insufficiency United is amazing resource, and this explains it very comprehensively: Information: Adrenal Insufficiency – Adrenal Insufficiency United.

---

Football Analogy

I am not entirely sure this will make sense (outside of my brain), but for my football brain - it helps me keep perspective.

Say the starting quarterback is 2007 Tom Brady and every game in the season is against teams like the 2008 Detroit Lions. Tom Brady (the tumor) completely dominated everything - the backup quarterback never had to play because they had Tom. But then, Tom Brady was removed overnight (you can choose the reason LOL), and the season wasn’t over.

Kurt Warner (my HPA Axis) had once been a great quarterback, but he was replaced by a quarterback that produced FAR more than he could (Tom Brady/tumor). But, with Tom removed, the team needed Kurt to step up. He was super out of practice as it had been years since his successful days and he knew the challenges that would lay ahead, but he accepted. And just to make it more challenging, the rest of the season's schedule was no longer against teams like 2008 Detroit Lions, but the 2017 Eagles or 2024 ;).

That’s where I am, essentially. Kurt Warner = my HPA Axis. Coming back online after quite some time off. Strong before - but needs to rebuild to get back to that state. The first couple games would be rough, understandably, he knew he would need patience, research, and practice.

But Kurt came back and so will my HPA axis.

---

I would love comments if this made sense to anyone else LOL; side note Go Birds & sorry Tom, it just fit!

Next up: Adrenal Crisis #1 and my hellacious emergency department & ICU experience.

Thank you for reading!