Nichole’s health journey: rapid weight loss, severe GI dysfunction, POTS/IST, stage IV endometriosis, PET scan red flags. A zebra territory medical mystery.
2015–2020: Subtle Hints
- 2015: CT abdomen/pelvis noted a retroaortic left renal vein and spinal pars defects. At the time, incidental.
- She was healthy, working full-time as a nurse, with no idea how drastically life would change.
2021: Surgery & New Risks
- Nov: Bilateral salpingectomy + right oophorectomy for benign ovarian tumor. Complicated by uterine perforation during attempted D&C.
- Afterward, she developed ischemic colitis — it resolved, but marked the first surgical trauma.
2023: First Major Shifts
- Jan: COVID-19 infection with lingering cardiac and respiratory symptoms.
- Aug: Her periods stopped abruptly (amenorrhea) — long before she lost weight.
2024: Subtle Findings, Mounting Symptoms
- Feb: She had to quit working as a nurse because of severe autonomic dysfunction, cardiac symptoms, fatigue, post-exertional malaise (PEM), MCAS-like flushing, and nightly low-grade fevers.
- Jul: Abdominal ultrasound showed a stable gallbladder polyp; CT enterography suggested ileal fold prominence.
- Sep: CT chest: apical 7 mm lung nodule + bibasilar atelectasis/collapse.
- Thyroid US: 7 mm thyroid nodule first discovered.
- Dec: Chest CT confirmed stable lung nodule.
2025: Rapid Unraveling
January
- PET/CT: Reported “no malignancy,” but revealed FDG-avid lesions in pelvis, spine, ± skull base. Never biopsied.
- Thyroid US: Nodule grew to 1 cm TR4 and new nodules appeared.
- Brain MRI: Minimal mastoid effusion.
February
- Colonoscopy: normal, except for 2 tiny benign polyps.
March
- Pelvic MRI: Stage IV endometriosis + adenomyosis.
Spring – Summer
- Autonomic testing: Diagnosed dysautonomia with IST and POTS.
- Provocation angiogram: Showed endothelial dysfunction.
- Neurology: Diagnosed with cervical dystonia.
- Symptoms worsened: dizziness, flushing, presyncope, cognitive decline.
July
- Weight: 131.5 lb (7/18).
- Began high-fat diet prep for testing → bowel habits flipped from daily loose stools to sudden constipation.
August
- Aug 8 ER: Stool burden, weight down to 123.5 lb.
- Labs: anemia, low protein, metabolic acidosis.
- EGD (Aug 21): Mild narrowing, biopsies benign.
- Prior manometry: Ineffective Esophageal Motility (IEM).
- Symptoms: early satiety, greasy/oily stools, flushing, sweats, weakness.
September
- Sep 4 ER: CT → large stool burden + new transverse colon wall thickening.
- Sep 7 X-ray: Stool throughout colon; nondilated → colonic inertia pattern.
- Weight plummeted: 113.1 lb (9/10) → 108 lb (9/15).
- ASPEN criteria for severe malnutrition met.
- Labs: ANA positive ×4 (3 patterns), NT-proBNP 774 pg/mL, CCL2 218 pg/mL, low protein.
- Daily life: 200–500 calories/day, 24–32 oz water, nightly sweats, flushing, bruising, cognitive decline, weakness, presyncope.
Now: Fall 2025
- Weight: 108 lb and falling.
- Surgery scheduled 10/30/25: hysterectomy + excision of endometriosis.
- But: PET-avid lesions remain unexplained, thyroid nodules enlarging, lung and breast findings concerning.
- She has crossed into “Zebra Territory” 🦓 — the realm of rare and complex conditions — and still remains a medical mystery.
🚩 Red Flags
- 20 lb unintentional weight loss in 2 months.
- Severe malnutrition (ASPEN).
- Night sweats, flushing, bruising, cognitive decline.
- PET-avid lesions never biopsied.
- ANA positive ×4.
- Multisystem dysfunction (GI, endocrine, autonomic, neuro, immune).
