From Surviving to Thriving - Understanding Addison's

What happens when someone with Addison’s disease is told they are “stable,” but still does not feel truly well?

In this episode, Jake and Rachel explore a My Adrenal Life topic that many people with Primary adrenal insufficiency (Addison’s disease) quietly struggle with: the difference between surviving and thriving.

Standard treatment for Addison’s focuses on replacing the two hormones considered most essential for survival: cortisoland aldosterone. These replacements are lifesaving and remain the foundation of care. But this conversation looks at an important question many patients ask: if the labs look good and the medication is correct, why do so many people still feel flat, tired, or unlike themselves?

Jake and Rachel unpack the idea that the adrenal glands do more than produce cortisol and aldosterone alone. They discuss two areas that may help explain why some patients continue to struggle even when they are considered medically stable:

1. Adrenal androgens, especially DHEA
The episode explores how DHEA, an adrenal androgen precursor, drops to very low levels in primary adrenal insufficiency. This may matter especially for women, since the adrenal glands are an important source of androgen production. The discussion looks at how low DHEA may contribute to symptoms some patients describe, including:

• low drive or “loss of spark”

• reduced libido

• low motivation

• difficulty building or maintaining strength

• a sense of emotional flatness

Jake and Rachel also review why DHEA remains a debated topic in endocrinology. Some studies have shown meaningful benefits in mood, energy, and sexual well-being, while others have shown more mixed results. The episode explains why DHEA is not routine for every patient, but may still be worth discussing with a knowledgeable endocrinologist in the right context.

2. The overlooked cortisol-adrenaline connection
The episode also explores a lesser-known physiologic issue: the relationship between cortisol production in the adrenal cortex and adrenaline production in the adrenal medulla.

Because blood flows through the adrenal gland in a very specific way, the inner adrenaline-producing cells are normally exposed to very high local concentrations of cortisol. In Addison’s disease, that internal environment is lost. Even when oral hydrocortisone is replaced through medication, it cannot fully recreate the same local adrenal chemistry.

Jake and Rachel explain how this may help account for symptoms patients describe such as:

• feeling easily overwhelmed by minor stress

• delayed or blunted recovery after stress

• reduced resilience

• “flat” stress response

• feeling like the body has less reserve than it used to

The episode also discusses why this can be so psychologically confusing. Many people with Addison’s are told they are doing well because their treatment is keeping them out of adrenal crisis. But being medically stable does not always mean feeling fully restored.

At its core, this conversation is about the gap between life-saving hormone replacement and full physiologic replacement. Modern treatment has transformed Addison’s from a fatal illness into a manageable one. But some patients still experience a quieter kind of loss — not always dramatic enough to show up clearly on labs, but significant enough to affect quality of life.

This episode offers language for that experience, along with a compassionate reminder that feeling “off” despite good lab work is not a personal failure.

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