"Low normal" results are a red flag in hEDS

Here are the labs that hEDS folks routinely get told are “low-normal” or “nothing to worry about”… but in our bodies actually cause real symptoms and often need treating. Doctors who don’t know the EDS world will dismiss them every single time.

1. Serum sodium
   “Normal” = 135–145 mmol/L
   EDS red flag zone: 130–134 → brain fog, headache, POTS crashes, near-syncope (check out the SIADH post for more info)

2. Ferritin (iron stores)
   Lab normal: >15–30 ng/mL (depends on lab)
   EDS reality: most of us feel awful under 70–100. Hair loss, crushing fatigue, restless legs, ice-chewing, tachycardia that won’t calm down until ferritin is at least 50–70+.

3. Vitamin D
   Lab normal: >30 ng/mL
   EDS reality: you usually need 50–80+ to stop the deep bone pain, muscle weakness, and frequent infections. Levels of 30–40 feel like flu season 24/7.

4. B12
   Lab normal: >200–300 pg/mL
   EDS reality: neurological symptoms (numbness, burning feet, brain fog, balance issues) often start below 500–600. Many need 800–1200 to function.

5. Folate
   Lab normal: >3–4 ng/mL
   EDS reality: anything under 10–12 can worsen fatigue, mood swings, and MCAS flares.

6. Magnesium (serum)
   Lab normal: 1.7–2.2 mg/dL
   EDS reality: serum mag lies. Almost all of us are low inside the cells. Cramps, palpitations, migraines, and insomnia often vanish once RBC magnesium is mid-range or higher.

7. Total blood volume / hematocrit
   Women “normal” hematocrit: 36–46%
   EDS reality: many  run 30–34% chronically (mild anaemia of chronic disease + POTS-related plasma volume contraction). You’ll be dizzy and freezing cold until it’s at least 36–38.

8. Morning cortisol
   Lab normal: 6–23 µg/dL
   EDS reality: 8–12 is common and feels like adrenal fatigue. Waking up exhausted, salt cravings, and crashing at 2 pm — all improve once it’s solidly >15.

9. IGF-1 (growth hormone marker)
   Lab normal: varies by age
   EDS reality: routinely low or low-normal → poor tissue repair, muscle wasting, feeling “90 years old” at 30.

If you’ve ever been told “your labs are fine” while barely able to get out of bed… it’s probably one (or six) of the above. 

Print this list and take it to your next appointment - the good doctors will actually listen. You’re not crazy, you’re just a zebra with zebra labs 🦓

Quick-win things that help MOST hEDS folks feel 30–70 % better (even when labs are “normal”)

1. Salt + electrolytes the zebra way
   5–8 g sodium/day (not just a pinch). Many need Liquid IV, NormaLyte, Vitassium, LMNT, or homemade (½ tsp salt + ¼ tsp Lite Salt in 500 ml water + splash lemon). Start low and titrate up.

2. Compression that actually works
   Waist-high 30–40 mmHg medical-grade (not the cute Amazon ones). Add abdominal binder if you have a floppy belly or bad POTS crashes.

3. Sleep propped up 15–30° (wedge pillow or adjustable bed)
   Stops blood pooling in the torso overnight and cuts morning headaches dramatically.

4. Gentle manual therapy for neck & jaw
   5–10 min of light cranial or upper cervical work from a physio who understands CCI/Chiari can change your life. Avoid aggressive chiropractic.

5. Low-dose naltrexone (LDN) 1–4.5 mg
   Game-changer for pain, MCAS, and brain fog in a huge number of us. Takes 6–12 weeks to kick in.

6. Mast cell support (even if you’re not “diagnosed” with MCAS)
   H1 blocker (cetirizine or fexofenadine) + H2 blocker (famotidine) + quercetin or DAO enzyme before meals. Cuts random flushing, GI hell, and weird reactions.

7. Ribose + CoQ10
   5 g D-ribose 2–3×/day + 200–400 mg ubiquinol. Helps the mitochondria that EDS seems to break.

8. POTS “cocktail” that actually works:

- Extra salt
- Compression
- 2–3 L fluids (unless you have active SIADH!)
- Raising the head of the bed

9. Stop chasing “perfect” posture
   Hypermobile necks hate being held in one position. Gentle movement and supportive pillows > forcing yourself upright.

10. One-page “zebra letter” for the ER
    Keep it in your phone/notes: diagnosis list, current meds, allergies, what has worked in past admissions, and the line “I can seize or become obtunded with sodium <135; please do not fluid bolus without checking labs.” It saves lives.

You’ve already done the hardest part: believing yourself when everyone else said “it’s fine.” Everything else is just stacking small wins until you get a day that feels almost normal.