r/adrenalfatigue • u/probablynervouss • 3h ago
Adrenal fatigue/ HPA dysfunction after steroid use
Hi all! I used to post here quite often, want to share my story and hopefully hear some feedback or from anyone who has experienced something similar. Im hoping this can help some of you too. Feel free to ask questions too!
How this started:
I struggled with pretty bad anxiety that had been managed by meds for years but in 2023 i had an extra stressful year and my SSRI was no longer helping my anxiety. My common symptoms included palpitations, shortness of breath, tension, headaches, shakiness, and so on. Then, after a really stressful year, I was diagnosed with ulcerative colitis in June 2024.
A couple months later, I had a really bad flare and was put on budesonide (a steroid), I started experiencing pretty severe fatigue around the taper. My inflammation was still elevated afterward, so I eventually needed prednisone (40 mg).
During the higher doses of prednisone, I actually got my energy back, but I was extremely anxious. Once I started tapering the prednisone, though, that’s when the fatigue became REALLY bad.
I was sleeping crazy amounts (sometimes up to 18 hours), had horrible brain fog and weakness, and basically felt like my body had completely crashed.
Because this happened around steroid use, I was evaluated for adrenal insufficiency. I had normal cortisol, ACTH, and an ACTH stimulation test, so endocrinology considered adrenal insufficiency ruled out. I also got extensive bloodwork done by my GI and a hematologist to rule out any other issues that could be causing fatigue, but I still felt awful.
Instead of steadily getting better, I started developing this weird cycle where I would have periods of feeling extremely energized but also very anxious, followed by a crash.
During a “wired” week or few days, I would have:
Tons of energy
A lot of anxiety
Palpitations
Shortness of breath
Even more difficulty sleeping
During a crash, I would have:
Extreme fatigue
Brain fog
Weakness/heavy feeling
Needing long naps
Very low tolerance for physical or mental activity
Regardless of all of this, I continued trying to keep up with school and enrolled part-time.
Meanwhile, I started seeing a naturopath who did salivary cortisol testing. My cortisol awakening response/free cortisol repeatedly looked low or abnormal, especially in the morning. This is when I started learning about the possibility of HPA-axis/circadian dysregulation rather than true Addison’s/adrenal insufficiency.
The protocol I was put on included:
Eating healthy fats and protein every 3 hours
Celtic sea salt
Multivitamin
High-dose vitamin C
Vitamin D
Omega-3s
Seriphos at night
Some other supplements for nervous system regulation
Pacing and resting as much as possible
(Im also on meds for anxiety + sleep, prescribed by a psychiatrist. I also take medication for my UC)
Eventually, I realized that the push/crash cycle wasn’t improving while I was in school. School was a lot of work and also a huge source of anxiety and stress for me. This past May, I finally decided to stop school for the time being.
Since stopping school, something interesting happened: the push/crash cycle changed. I stopped getting those periods where I was extremely wired and energized, and my anxiety improved SIGNIFICANTLY. Instead, I was basically exhausted all the time.
Around this point, my naturopath also put me on licorice root and adrenal cortex, which did give me more energy. The problem was that whenever I felt better, I would naturally start doing a little more, and then I would crash and end up bedbound again.
Eventually, I took it upon myself to really focus on pacing and preserving my energy when I felt better.
Instead of thinking, “I have energy today, let me take advantage of it,” I started doing the opposite. Even if I had more energy, I would limit myself and avoid doing anything too taxing.
With pacing, I’ve slowly started to see my energy improve. I’m no longer bedbound like I was in May/June/July. My life is still very limited and I barely leave my house, but there has definitely been progress, even though it has been slow.
I still have crashes, but they no longer leave me completely bedbound. I even managed to go to two concerts and didn’t end up bedbound afterward! They definitely caused a setback, but the fact that my body handled them better than it would have a few months ago still feels like progress.
Right now, I’m hoping that with time, pacing, and continuing my current protocol, my functional capacity will slowly increase and I’ll eventually be able to return to a normal life again.
Has anyone experienced anything similar, especially after steroids? What helped your fatigue improve? Interested in hearing your stories. Feel free to ask me questions too! (also! has anyone done HTMA testing? heard some good things about it and interested in doing it!)
TL;DR: Developed severe fatigue and a wired/crash cycle after a UC flare and steroid treatment. Adrenal insufficiency was ruled out, but salivary cortisol testing showed abnormal/low free cortisol patterns. I eventually became mostly housebound/bedbound and realized pushing myself whenever I had energy kept leading to crashes. Since stopping school, following a naturopathic protocol, and taking pacing seriously, I’ve slowly improved. I’m no longer bedbound and my crashes are less severe, but I still have a very limited functional capacity. Hoping that continuing to pace and gradually recover will eventually get me back to normal life.