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Surviving a Near-Coma Level Endocrine Emergency: Why My Incontinence Wasn't a Personal Failure
I finally got my official June ER lab records today, and seeing the raw machine data on the screen completely rewrote my understanding of my own body.
For months, I thought my acute collapse this past summer was bad. But the actual numbers show a level of systemic failure that leaves me stunned I was even awake. My Thyroid Stimulating Hormone (TSH) didn’t just spike—it reached an astronomical 478 uIU/mL (with a normal range being 0.4 to 4.0). My Free T4 was critically low at 0.11 ng/dL, meaning my bloodstream was carrying virtually zero circulating thyroid hormone.
To have your metabolic engine completely bottom out like that is terrifying. It means my cells were operating in a state of severe hibernation. It completely validates every single scary physical breakdown I’ve endured since then.
Without thyroid hormone, my peripheral nerves lost their signaling power, causing debilitating left-arm numbness that mimicked a stroke. My gastrointestinal smooth muscles were literally paralyzed, causing profound slow-transit constipation that alternated with sudden, high-volume overflow leaks. My autonomic nervous system completely lost control of my bladder and bowel sphincter lines.
Because adult incontinence carries such intense societal shame, it’s a relief to have the hard machine data prove it wasn't a personal failure or a lack of willpower—it was a literal, mechanical consequence of a near-coma level endocrine emergency.
My primary care clinic appointment today was a mixed bag. The doctor was busy, distracted, and nonchalantly asked if my symptoms were "all in my head" before slapping a generic "depression" label on my chart and dipping out. She had no idea my system was surviving on zero hormone just three months ago because the hospital records never forwarded.
But I pushed back, I spoke up, and I held my ground. My current TSH is down near 4.5. We are adjusting my Levothyroxine, adding a twice-daily active T3 medication (Liothyronine) to jumpstart my cells, and trying a non-stimulant ADHD med (Qelbree) to help anchor my severe brain fog and executive dysfunction.
The best news is I successfully unlocked an affordable $10-per-visit care pipeline to Nashville General Hospital, bypassing the clinic gatekeepers to get direct access to the experts who can actually help me build my state adult disability case: an Endocrinologist, a Psychologist, a Neurologist, and a Physical Therapist.
This recovery process is going to move at a much slower, more glacial pace than I originally anticipated. My chronic fatigue, joint pain, migraines, and interoception gaps still decimate my daily spoons, and my independent living landscape is incredibly high-friction. But today, I hold the absolute laboratory truth of my condition in my hands. My symptoms are real, my history is verified, and I am moving forward one mechanical step at a time.
#IdiopathicHypersomnia #HashimotosThyroiditis #NeurogenicBladder #adultautism #ADHD #AutismSpectrumDisorder #ChronicFatigue #Incontinence #selfadvocacy #ChronicPain
#MightyTogether #Nashville #Migraine #Hope
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