The Hidden Reasons for Hair Loss in EDS and MCAS (And a Strategic Path Forward)

If you live with Ehlers-Danlos Syndrome (EDS) or Mast Cell Activation Syndrome (MCAS), you’ve probably spent a lifetime connecting the dots. Chronic joint pain, fatigue, stomach issues, allergic flares—and sometimes, to your surprise, hair loss. Many of us notice hair that once grew thick and strong now shedding excessively or thinning at the front of the scalp. It’s frustrating and confusing, and doctors don’t always have clear answers.

The truth is, there is no single direct pathway from EDS or MCAS to hair loss. But there are many interconnected, indirect paths. When we map them out, the picture starts to make sense. This isn't about a magic bullet; it's about understanding the cascade of small imbalances and addressing them systematically.

1. The Foundation: Collagen, Nutrients, and Circulation

EDS is a connective tissue disorder rooted in faulty collagen. This affects not only joints and skin but potentially the entire body's infrastructure. It's plausible that the integrity of small blood vessels, including those that nourish the scalp, could be compromised, potentially impacting the efficient delivery of oxygen and nutrients to hair follicles.

Combine this with the gastrointestinal issues common in both EDS and MCAS, and you have a recipe for chronic nutrient deficiencies. Iron and zinc are frequently low and are absolutely essential for strong hair growth. Furthermore, amino acids like lysine and glycine—the building blocks of collagen—can run low in bodies with high collagen turnover. Lysine also plays a key role in iron absorption. When these fundamentals are lacking, hair health is one of the first things to suffer.

2. The Inflammation Engine: MCAS and Absorption Issues

Mast cells release histamine and a cocktail of inflammatory molecules that can damage the gut lining. This means even if you eat a nutrient-rich diet, absorption may be poor. Key minerals for hair and thyroid health—like iron, selenium, and copper—can become deficient.

Beyond the gut, this systemic inflammation directly stresses the body. High levels of inflammatory mediators can disrupt the natural hair growth cycle, pushing a significant number of follicles into the shedding phase. This widespread hair loss is clinically known as telogen effluvium, a common response to physiological stress, which includes chronic inflammation.

3. The Thyroid Connection: An Indirect Victim

EDS and MCAS don’t directly cause thyroid disease, but they create an environment where thyroid function can easily falter.

• Low Iron is critical: Iron is a cofactor for thyroid peroxidase, the enzyme needed to produce thyroid hormones. Without enough iron, production slows down.

• Low Selenium impairs the conversion of the inactive thyroid hormone (T4) into the active form (T3) that your cells (including hair follicles) need.

• Chronic Inflammation can make the thyroid gland more vulnerable to autoimmune attacks, such as Hashimoto's thyroiditis.

A underactive thyroid (hypothyroidism) directly leads to hair changes: diffuse thinning, dry and coarse hair, and dramatically slowed regrowth.

4. Medication Side Effects: A Double-Edged Sword

Medications essential for managing MCAS or EDS symptoms can have unintended consequences. It's vital to understand these connections so you can be proactive, not fearful. Never stop a prescribed medication without consulting your doctor.

• Acid Reducers (H2 Blockers, PPIs): Long-term use can lower stomach acid, impairing the absorption of Iron, Zinc, and Vitamin B12.

• Other Medications: Beta-blockers (for POTS) and SSRIs (for mood) have rare but reported links to hair shedding. The benefits usually outweigh the risks, but it's a factor to discuss with your doctor if hair loss is significant.

• Important Note: Antihistamines (H1 blockers) and mast cell stabilizers are generally not associated with hair loss and are crucial for controlling MCAS.

5. Puberty and Hormonal Shifts: A Common Turning Point

Many people with EDS or MCAS notice their symptoms intensify after puberty. This hormonal surge increases collagen demand and can heighten androgen sensitivity in hair follicles. If nutrient stores are already borderline, this new hormonal demand can push the system over the edge, triggering hair thinning that often follows a female-pattern (front and top of the scalp).

How Common Is This?

While large-scale studies are absent, anecdotal reports and patient community surveys consistently suggest that significant hair changes affect a substantial portion—perhaps 20–40%—of individuals with EDS or MCAS. It's not universal, but it's far too common to be a coincidence.

A Strategic, Multi-System Management Plan

Addressing this type of hair loss requires a methodical, patient approach. Always discuss these steps with your healthcare team before making changes.

Phase 1: Investigate and Replenish from the Inside

• Comprehensive Lab Work: Don’t just accept "normal" ranges. Ask for specific numbers and aim for optimal levels for hair growth.

  • Ferritin (Iron Stores): Ideal for hair growth is often >50-70 ng/mL.

  • Zinc & Copper: Check levels, as they need to be in balance.

  • Selenium, Vitamin D, B12: Crucial for thyroid function and cellular health.

  • Thyroid Panel: Request TSH, Free T4, Free T3, and Thyroid Antibodies (TPO).

• Strategic Supplementation:

  • Iron/Zinc: Supplement based on lab results and under medical guidance. Vitamin C can enhance iron absorption.

  • Building Blocks: Consider L-Lysine (aids iron absorption) and Glycine, or a high-quality hydrolyzed collagen peptide powder.

  • Antioxidant Support: N-Acetylcysteine (NAC) can help boost glutathione to combat oxidative stress. Introduce carefully, as some with MCAS may react.

  • Caution: Avoid high-dose Vitamin A or Selenium without deficiency, as excess can cause hair loss.

Phase 2: Gentle External Care and Scalp Support

Your scalp is sensitive skin. Treat it with care to minimize breakage and inflammation.

• Gentle Hair Care:

  • Brushing: Use a wide-tooth comb on wet hair. Start from the ends and work up.

  • Styling: Avoid tight ponytails and braids to prevent traction alopecia. Use soft, coil-style hair ties.

  • Products: Choose fragrance-free, hypoallergenic shampoos. Ingredients like aloe vera or oat extract can be calming.

• Scalp Massage: Use the pads of your fingers (not nails) for a few minutes of gentle, circular massage to increase blood flow. Be cautious if you have neck instability.

Phase 3: Calm the Entire System

• Diet & Gut Health: Focus on an anti-inflammatory, well-tolerated diet. Bone broth (if tolerated), well-cooked vegetables, and lean proteins can be healing.

• Stress & Sleep Management: Prioritize sleep hygiene and gentle nervous system practices like paced breathing or meditation.

• Balanced Movement: Gentle activities like swimming or physical therapy can improve circulation without causing injury.

• Review Overall Load: Consider other stressors. For example, ADHD stimulant medications can suppress appetite; ensuring adequate calorie and protein intake is essential to avoid malnutrition-related shedding.

Final Thoughts

Hair loss in EDS and MCAS is a signal—a distress call from a body dealing with a cascade of imbalances: fragile infrastructure, poor absorption, systemic inflammation, and hormonal vulnerabilities.

The path to improvement is rarely linear. It requires patience and a holistic view. By methodically nourishing your body with the right building blocks, protecting your thyroid, correcting deficiencies, and adopting gentle hair care habits, you create a stable foundation. This isn't just about growing hair; it's about supporting your entire body so that health, and consequently hair, can thrive again.

Have you experienced hair loss with EDS or MCAS? What strategies have helped you on your journey? Share your insights in the comments to support others in our community.

At ParaMotion, we believe in combining science with practical strategies: movement therapy to boost circulation, holistic nutrition to restore balance, and knowledge to empower you. Hair loss may be a signal—not just of what’s happening on your scalp, but throughout your body. Let’s listen to it together and respond with understanding, not panic.👉 [Book your Free 15 mn call here!!] 

Disclaimer: This article is for informational purposes only and does not constitute medical advice. The information is based on current scientific understanding and patient community experiences. Please consult with your physician or a qualified healthcare professional for any health concerns or before starting any new supplement, treatment, or making changes to your medication regimen.