Help Is Not Coming

My path to coping with female hair loss and what I learned along the way

I’m sitting at my desk running my hand through my hair again and again. Every time I do, I have a bunch of loose hairs in my hand, and my chest tightens. I’m looking for reassurance, but all I find is confirmation: I’m losing my hair and a little bit of my mind with it.

I first noticed that something was off in September 2019. It felt like my hair had stopped growing, but I didn’t worry at the time. I knew nothing about female hair loss and didn’t realize that this was the beginning of mine. 

Two months later, I had the first clumps of hair in my hands. Now I was concerned. At first, I blamed a new hair care product, then I thought it might be stress at work. After I had spent a few months trying to figure it out myself, I decided that it was time to ask for help. I made an appointment with my primary care doctor, who suggested some blood work. When my labs showed that my thyroid hormones were off, we thought we’d found the culprit. My doctor referred me to an endocrinologist, who diagnosed me with Graves’ Disease, an autoimmune disorder that can cause hair loss. After a round of antithyroid meds, my labs were normal again, but my hair kept falling out, and I felt increasingly worried. My endocrinologist assured me that my now controlled Graves’ wasn’t to blame, so my primary care doctor referred me to my first dermatologist. 

I drove to her office in Beverly Hills on a sunny afternoon in May, eager for her expertise and guidance. She spent most of our time in a high chair with her back to me, staring at what looked like a medical search engine on her screen. From time to time, she read a paragraph out loud, nodding to herself. After a while, she got up, walked to my left, and pulled on some of my hair. As she threw a few loose strands in the trash, she whispered: “Oh yes, you are experiencing hair loss.” She sat back in her chair, opened a drawer, and gave me a nondescript brochure about different types of hair loss. Then she ordered a blood test, shook my hand, and left. When my labs came back, she diagnosed me with low ferritin and prescribed an iron supplement, because she thought “that was probably it.” Two refills later, my hair had become visibly thin and kept falling out, unfazed by the boost in iron.

I, however, was very much fazed, and it was hard for me to process what was happening, or talk about it with my family and friends. I never had great hair and grew up as the smart one, not the pretty one, so I was embarrassed by how bothered I was by my hair loss. I didn’t want to make a big deal out of it. “It’s just hair, so what if it all falls out, I’ll wear cool wigs and normalize the female buzz cut.” But that’s not how I felt. I felt terrorized by all the hair everywhere all the time–on the floor, on the couch, on the bed, on my clothes, on my back, in my hand, in the vacuum cleaner, and in our dog’s poop for crying out loud–constantly reminding me that I was literally and figuratively losing it. I lost so much hair that I didn’t understand how I could have a single strand left. And no matter what product, diet change, supplement, or stress-reducing technique I tried, it just didn’t stop.

I felt alone and impatient for answers, so I researched the best dermatologist in the Coachella Valley. We had recently bought our first home here and didn’t know anyone yet, so I relied on rating platforms. The dermatologist’s reviews were stellar, and according to his website, he was a hair loss expert. I walked into his Palm Springs office, confident that I was finally going to find answers and support. I was sitting in a small treatment room when he rushed in, dressed in scrubs. He moved and spoke fast, made intense eye contact, and kept interrupting me like he had little time and even less patience. Without warning, he tilted the chair I was sitting in back and said: “Are you ready?” “For what?” I asked. He laughed and said that was a good question. He said that he was about to “scrape some skin off my scalp.” I felt a small sting on the top of my head and became a little woozy. When I saw him lift a needle with a blue thread above my head, I felt the nurse's hand on my arm: “Are you okay?” she asked. He adjusted my chair, so I wouldn’t pass out. I asked what he was doing, and he told me not to worry. He was pulling the skin together in a tight knot, so no one would be able to tell. I was surprised that he thought that I was worried about the cosmetics and asked him again. He told me that he had taken a scalp biopsy and headed for the door. I asked if I could see it, as I was still not sure what had happened. The nurse hesitated and looked at him. He nodded. She showed me a small red and white cylinder, about a half inch long and a quarter of an inch wide, which they had stamped out of my scalp. As the nurse was tending to the tucked-up hole in my head, I asked her if it was normal for people to get light-headed during this procedure and she said: “Yes, sometimes, if they are nervous.” I told her that I wasn’t nervous, but that I would have appreciated a heads-up. I was not aware that they would punch a piece out of my scalp and that I would need stitches. She sounded genuine when she said: “Aww, I’m sorry.” 

I knew that I wouldn’t go back to his office, but I wanted to know the results of the biopsy. I didn’t hear from the doctor, so I called several times to follow up, but he was never available. Eventually the receptionist–out of pity or annoyance–read me the results over the phone: “Telogen effluvium, consider metabolic, hormonal, or genetic causes.” The Coachella Valley’s best dermatologist never got back to me.

On a Sunday morning, back in 2019, I followed through on a promise I had made to my husband ten years earlier: I told him that he had a visible bald spot on the back of his head. 15 minutes later, we sent pictures of his new buzz cut to my sister and her husband who responded with hearts and flames. And that was it. Since then, my husband has been rocking a buzz. Sure, his hair loss had been a source of insecurity, and he’d still prefer a full head of hair given the choice, but every other Sunday he asks me to touch his freshly shaved head with a boyish excitement that tells me that he’s okay. No doctor’s visits, no anxiety, no shame, no tears, no products or supplements. Why was it not like that for me? Why was he fine after 15 minutes and I’m going on three years being nowhere near fine? Why do I know so many men who are open about their hair loss, but not a single woman? Why do I think a buzz cut will make me look weird and unattractive? Why are my doctors not helping me? And why is something that I thought would never bother me–I don’t care that much about my hair and could do without it–bothering me so much?

My third dermatologist didn’t know why I was losing my hair and said she had no interest in finding out; that wasn’t her job. She recommended a B12 steroid shot, an anti-hair loss shampoo and conditioner, a hair growth supplement, and my first platelet-rich plasma injection. Yes, several may be required–at $2,000 a session–and none of this was covered by insurance. “Any questions?” she asked. When I told her that I would like a diagnosis before starting treatment, she got out an old magazine with herself on the cover. She gave it to me and said: “I am the expert,” making it clear that questioning her was foolish. I suddenly noticed that I was sitting a lot lower than her and that she was looking down on me. She pulled the corners of her mouth into a smile and said: “Don’t wait too long. You may lose all your hair and not be able to grow it back.”

I walked out of her office into the desert heat, bewildered but also strangely amused. What was wrong with these doctors? The first one pulled on my hair without explanation, the second one punched a hole in my head without telling me, and the third one flat out told me that she didn’t care to diagnose me, but got all worked up about me not buying her products or her status. It had been 2.5 years since I held those first clumps of hair in my hands, and I had seen a lot of doctors since then. I sat in their offices, anxious and ashamed, asking for a diagnosis and their help, something that I thought was indeed their job. What I got instead felt dismissive at best and negligent at worst. I was tired of doctors who didn’t seem to care, listen or explain. I wanted to understand why I was losing my hair and what, if anything, I could do to stop it.  My doctors weren’t interested in looking for answers, so I decided to look for them myself.

The next morning, I went on PubMed, a search engine that covers more than 34 million academic journal articles on the latest peer-reviewed research in medicine, healthcare, and other life sciences. I typed female hair loss into the search box, filtered for freely available, secondary research, and hit Search. 229 results. I clicked on the first link and felt a sense of excitement and relief. I didn’t understand my hair loss, but maybe that was about to change. 

I spent the next few weeks reading research papers and trying to learn as much as I could about different hair loss conditions and their causes, symptoms, diagnosis, and treatments. Once I had made my way through 30 papers (see references below), I was able to identify two hair loss conditions that closely matched my symptoms: androgenetic alopecia and telogen effluvium. 

Androgenetic alopecia in women, also known as female pattern hair loss, isn’t fully understood but seems to be caused by a combination of genetic predisposition and a sensitivity of the hair follicles to the hormone dihydrotestosterone. Both are suspected to contribute to the miniaturization of hair follicles and the shortening of the growth phase of the hair. Female pattern hair loss generally appears as gradual, diffuse, and progressive hair thinning on top of the head, from the hair’s midline outward. 

Telogen effluvium is caused by an increased amount of hair moving from the growing to the resting phase. Normally only about 10% of scalp hairs are resting, but physiological or emotional stress, medical conditions, nutritional deficiencies, or certain medications can send an increased amount of hair into the resting phase, which leads to excessive shedding two to three months later. Telogen effluvium can be acute or chronic and appears as sudden, diffuse, and excessive hair loss. Unlike female pattern hair loss, telogen effluvium is not necessarily limited to the scalp and can affect other areas of the body as well.

My hair loss started suddenly, about 2.5 years ago. Since then, my hair has been shedding excessively all over my head–including my eyebrows and eyelashes. My dad started struggling with hair loss in his 30s and has been sporting a zero buzz cut since his early 40s, so I do have a family history of hair loss. My scalp biopsy didn’t show any hair follicle miniaturization, but a premature shift of hair from the growing to the resting phase.

Combining my hair loss history and symptoms with what I had learned about hair loss from research led me to a conclusion: I was experiencing chronic telogen effluvium.

I was excited to finally have an answer and thought that now that I knew what was causing my hair loss, figuring out how to stop it would be easier. The key to successfully treating chronic telogen effluvium is to identify and address the underlying trigger. So I went through all the potential causes that I had learned about–physiological or emotional stress, medical conditions, nutritional deficiencies, and medications–but I couldn’t find a match. I hadn’t experienced any stressful events in the months leading up to when I first noticed my hair loss. My Graves’ Disease was well managed, and I had no symptoms of any other medical conditions. I had my iron, ferritin, biotin, zinc, vitamin D and B12, testosterone, dihydrotestosterone, estrogen, and progesterone levels tested, and I didn’t have a hormonal imbalance or nutritional deficiency that could have been causing my hair loss. I stopped my migraine prevention meds–the only medication I’m taking regularly–for three months, but my hair loss didn’t improve.

After almost three years of trying to understand and resolve my hair loss, I’m finding myself in pretty much the same place I started this journey: I’m losing my hair and I don’t know how to stop it. I’ve asked myself the same questions over and over again: Why me, why this, what is this, and why does it matter so much? Who can help? Why will no one help? Are doctors incompetent? Is it because I’m a woman? Should I be this upset? Should I be more upset? Why isn’t anyone else upset? Who says I need hair? Do I need hair? Who’s the problem? Am I the problem? Am I going crazy? Will my husband still love me? What will my family and friends think? Will they think I’m broken? Am I broken? Is this ever going to stop?

Over the past three years, I have thought a lot about hair. What I learned about hair growing up and what I know and believe about it today. What it means to have hair and what it means to not have it. What it means to a man and what it says about a woman. I thought about health and the medical system. Most of the time, I wondered what and who to blame–my body, my health, our healthcare system, our culture, our values, the people with hair, the people without hair. But recently, I find myself less interested in what I have been taught about hair, or what others think about it, how my gender or culture relate to it, or if my doctors should have done a better job helping me. While these questions are all valid, answering them doesn’t feel helpful anymore in my hair loss journey.

For a long time, I thought I just needed the right expert to fix it. Then I thought I just needed the right knowledge. When I realized that neither may be able to stop my hair loss, I shifted my focus to what a balding head would mean and I was terrified. At first, I thought I was scared of people’s judgment, then I thought that I didn’t want their pity. And then I finally realized that what caused all the pain was not how others saw me but how I saw myself, and what the loss of my hair meant to me. It wasn’t about hair at all, it meant something deeper, something more subtle to me. A loss of control and possibility. Another door closing. An ending. A letting go of something or someone. Just another small thing to give up on and get used to as my life continues to move from what could be to what was. This time it’s my hair, eventually, it will be me.

I don’t know how to stop my hair loss, but I’m done trying to make it stop. I’m ready to lose it: my hair as well as my fixation on it. I’m letting go. I bought some hats and turbans, researched wigs, and I’ve started talking openly about my hair loss with my family and friends. I’m brushing and washing my hair regularly again, something I avoided for a while because I thought it was making my hair loss worse (research taught me that’s not the case). I’ve found a way to style my bio hair that covers my hair loss and makes me feel comfortable for now. The moment that changes, I’ll pull up the list of favorite wigs I put together, drive to the wig store I found and buy myself my first wig. And I’ll wear it and I’ll own it.

A few weeks ago I asked my husband if he would still love me if I were a worm. His emphatic “Absolutely!” gave me confidence that we will be both okay with a hairless me. 

If you are interested in the research I reviewed, you can find all of it linked in the references below. If you prefer to read or listen to a summary, here’s mine. If you are looking for a more interactive approach, I partnered with my software engineer husband to create a free app called Halo (iPhone | Android). Halo will ask you 15 multiple choice questions on the most common hair loss symptoms–as defined in the research I reviewed. Based on your answers it will provide you with a summary of your symptoms–just like mine you read above–and a list of hair loss conditions that match those symptoms, so you can discuss them with your healthcare provider. All hair loss conditions in Halo (iPhone | Android) are linked to peer-reviewed research papers, so you can dig in on your own if you’d like.

I hope that my research, my story and Halo can help you find what you need to understand, resolve, or let go of your hair loss. 

Disclaimer

Any and all content provided within or through this article is for informational purposes only and should not be taken as medical or healthcare advice. It is not intended or implied to be a substitute for professional medical advice, diagnosis, or treatment. 

Always seek advice from a qualified healthcare provider for any questions you may have regarding medical conditions, diagnosis and treatment, and never disregard professional medical advice or delay seeking it because of anything you have read within or through this article.

I make no representation and assume no responsibility for the accuracy of information provided within or through this article and such information is subject to change without notice. 

I don’t recommend, endorse, or make any representation about the efficacy, appropriateness or suitability of any specific tests, products, procedures, treatments, services, opinions, healthcare providers, or other information that may be contained within or available through this article.

I am not a doctor, nurse, or other healthcare professional, and reliance in any way on any information provided within or through this article is solely at your own risk.

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