ECS & SAI: Current Treatments

Quick Reminder:

ECS = Endogenous Cushing Syndrome (my initial diagnosis)

SAI = Secondary Adrenal Insufficiency (my postoperative diagnosis)

So, what is my plan for recovery?

First, I'll start with what the current prescribed treatment process looks like. ECS treatment is very straight forward - surgery (adrenalectomy and tumor removal). On April 21, 2025, I had my surgery while my sister and brother-in-law so generously flew out so my husband could stay with me in the hospital. The surgery itself was just a bit over 3 hours and was done laparoscopically with a robot assist. I have five small incision scars on the right side of my stomach. I would recommend my surgeon a million times over and would have traveled across the country to have her (please contact me if interested) on the contact submission form.

The surgery went well, no complications (the tumor which appeared to be 3.5cm on the ct scan turned out to be 4.8cm). Yes sir, waking up did hurt, it's surgery - but it was manageable and I only needed the hard drugs while in the hospital and then 2ish days once discharged. Beyond that, Advil sufficed. I took 3 weeks off from working and then in about 6 weeks the surgical pain subsided. I experienced a standard recovery (although having an baby (8 months at the time) didn't make things easier. To note - it was not because of him, it was the difficulty (and at first inability) to lift him. He's great - and one of the biggest reasons I am okay (along with my husband!). Hell was only beginning though, and I had no idea (but more to come on that later).

Anyway, once surgery is complete; to put into perspective in case you missed it, I explain what happened to my body post-surgery: (remember my football analogy). To sum up that entire thing - the tumor was bypassing my normal system of producing cortisol (at least 10 years). So, the source of my body being flooded with cortisol was removed and I was left with a remaining adrenal gland that hadn't produced cortisol in years. While in the hospital, an AM cortisol and an ACTH test confirmed that my body was not making cortisol on its own (very expected). I was sent home with a hydrocortisone taper schedule with instructions to follow up with my endocrinologist for medication management.

As mentioned, when the time is right, I will share a post of post-op April 2025 to July 2025.

For now, let's fast-forward to July 2025, when I started with my qualified provider, and I was postoperatively diagnosed with Secondary Adrenal Insufficiency (based on bloodwork and clinical manifestations). The studies vary greatly and a lot of it depends on how long Cushing's was present and undiagnosed. Overall, of the published studies I have read, they report that about 20–45% of patients experience postoperative adrenal insufficiency after adrenalectomy.

Here is where we get to the meat of all of this. The treatment for SAI is a pill steroid (hydrocortisone or prednisone) that is gradually tapered off as the remaining adrenal gland "wakes up" and produces cortisol on its own. Until then, you "wait". During my 2nd appointment when I asked, "how can I "wake up" my left adrenal gland?" The answer was you can't, you can just stay as healthy as you can and you have to wait, it takes time.

I have absolutely no patience (if you know me, you know that), but this isn't about impatience. It's dangerous and it's petrifying. The steroid that I take is providing a synthetic version of what my body cannot make (like a type 1 diabetic who cannot make insulin). I have zero side effects from it, it keeps me alive; if there wasn't risk of long-term usage, I wouldn't mind taking it forever.

The problem - is 'waiting' means you are sitting duck.

Football analogy: a quarterback without an offensive line. And, as I've mentioned, I got that lack offensive lineman hit TWICE (read post on hit #1).

And after the second one, NO SAYS I.

That is where all of this comes in. My mom used to always say, "you can't complain about the headache if you haven't taken the Advil". Which, that line itself isn't great because a ton of Advil isn't great LOL. But the concept always stuck with me. If you have a solution to fix a problem, don't complain about the problem - do something about it.

Since I started my short-term disability at work (after crisis #2 on Oct 21, 2025), I have been taking the Advil.

The Advil in this case has been a week straight of doing nothing, but research (and ongoing); followed by implementation.

Next up: My Recovery Plan - what the research told me and what I am doing during my halftime to prepare for the third & fourth quarters.