As someone who has dealt with chronic TE for the past five years, I really empathize with how scary and traumatic this condition is to one’s psyche and self-esteem. I lost about 40% of my hair. I used to have so much that I’d ask stylists to thin it out with sheers. My TE was brought on by an extremely stressful job. I stuck it out for 4 years because it was my dream job. But at some point, I could no longer ignore what it was doing to my mental and physical health. It had been over a year since I quit my job and the shedding wasn’t slowing down. I went to many dermatologists over the years, but I decided I wasn’t going to be passive about their treatment plans anymore. I got a lot of “TE is really difficult to treat.” I moved on until I found a proactive dermatologist.
I’ll list out the things I did to get a proper diagnosis and the treatments tried. I’ll put an asterisk next to the ones that worked:
DIAGNOSTIC AND PREVIOUS TREATMENTS - 3 Comprehensive Blood Panels: To check for deficiencies or under lying health problems like auto-immune disorders (Everything came back good) - Scalp Biopsy: To determine if I had scarring of the follicles, i.e. Alopecia, etc. (Came back normal. Pathologist suggested it may be TE but it’s not something you can conclusively diagnose with a biopsy. Purpose was to rule other conditions out.) - Hair and Nail Biotin Gummies: (3 Months. Nope) - Topical Minoxidil: (I couldn’t do it because my hair is too long. It was a sticky mess that made my hair super tangled, making the hair loss worse when I had to brush/detangle it)
WHAT’S WORKING NOW: - PRP Injections - (2 sessions of 4, so far. They are extremely painful during the injections and for days afterward. Think the worst and deepest headache of your life, plus the unreal soreness caused by your head being punched with needles hundreds of times. The sessions are also stupid expensive and insurance doesn’t cover it. But I was at my wits’ end. Luckily, the shedding has dramatically slowed down since my 2nd session. I’m scheduled to have 4 of them in total - 4-6 weeks apart. After which, I’ll probably need 1-2 maintenance sessions a year)
-Spironolactone - Over the years, I started with 25mg, then 50mg, then 100mg… and now I’m on 150mg/day* (My hair started growing back, but I can’t single out if upping the dosage was the main cause. It is commonly used in conjunction with oral minoxidil though.)
CONCLUSION Because I started the oral minoxidil, upped the spironolactone dosage and began PRP treatments at the same time, it’s hard to parse out what is driving the rapid hair growth. But I don’t care. It’s the first time in five years I’ve seen any hair growth at all and I’m happy. I posted this novel in case someone else has been diagnosed with TE and is feeling hopefulness. It’s not by any means meant to replace a proper diagnosis by a doctor!
Know that you will get better! It will take time but just try to be as kind and patient to your body as possible. It’s been through hell. But please do get checked out by a doctor so you can rule out all other causes.