Some posts from Jenny and others in the old Facebook support group - now moved to Circle, join us!
Hey! I’m new here. I just cracked open No Period Now What this morning and got to Chapter 3. I wanted to share a little bit of my story, since I’ve been inspired by reading a lot of yours.
I am a lifelong runner and I’ve been dealing with HA for the better part of the last 10 years. I ran competitively in high school then went on to run at the D1 level, where it was widely accepted to not have a period for months (or years), and I was actually told that this was a normal and acceptable thing.
I’ve been navigating the recovery on my own the last 5 months after finally going to see an endocrinologist to get to bottom of my issues.
The reason I finally decided to go in and get help was not that I’m ready to have a child. I’m 23 years old, and about a year ago, I started losing my hair.
It doesn’t come out in chunks, and I don’t find strands on my pillow in the morning. It’s been a slow process of overall thinning, with large thinning areas on the top of my head (the front of my scalp). I never expected to deal with hair loss/receding hair line, especially not at the age of 22.
At first I was panicked, but it was also not noticeable enough for anyone to really see it or acknowledge that I wasn’t crazy. But now, my hair is noticeably gone in areas on top of my head. Here are a couple photos.
When I went to the endocrinologist last winter, we found that my reproductive hormones were extremely low. We also did a bone density scan to see if my bones had improved since college.
I assumed that they would because I hadn’t been running as hard (but I was “triathlon training” and would exercise 3-4 hours a day with a lot of intensity). My bone density actually worsened since college, putting me in the osteopenia zone. My doctor urged me to gain weight and lessen my exercise. She thinks that in solving my hormone issues, I will solve my amenorrhea and my hair loss. I’m hoping this is true.
I guess my hair loss is somewhat of a blessing because it has forced me into action. I want to improve my bone density now so I can run later in life, as well as address my issues with gaining weight. So at the beginning of 2017, I tried to change things. I stopped doing cardio and starting weightlifting instead. I started eating way more calories.
But the stress of trying to navigate this change on my own, in addition to rapid weight gain, was so much that I was only able to sleep about 5 hours per night – not great.
I’m a type A sort of person that has to do things perfectly, and I also genetically have low estrogen. Women in my family (if they exercise or not) always have trouble with maintaining a normal cycle, so I assume that my cycle is pretty sensitive to things like over-exercising and under-eating.
It’s only been until the last few weeks when another runner, Tina Muir shared her amenorrhea story and talked about this book that I’m learning what it takes to really recover. Which for me, will include stopping my exercise for now and drastically reducing my stress. (Being 23 is stressful, believe it or not!) So I’m going doing my best to go “all in” for recovery of my period, my bones, my hair, and my health.
Has anyone else dealt with hair loss or thinning at the top of your head as a symptom of your HA? Any thoughts on addressing this issue aside from my overall recovery?
And now, a few comments from other members of the group:
Erika: Welcome! And Yes. My hair came out in clumps. Looked really similar to what yours looks like. I was misdiagnosed with PCOS at first but told to bring BMI up to a healthy weight. I think my hair loss mostly slowed or stopped by then. In pictures from that time I have visible new growth around my face. Once I got correctly diagnosed and went all in, my hair growth had been pretty good. It’s not quite back to its full lion status, but it’s getting there. Tried to take a pic, but I just look super creepy in all of them!! My weight also came on quick, but then leveled out. I think it’s really great that you’re doing something at 23!!
Here is a before pic. I thought it was mostly around the cowlick, but just sort of looks thin all the way around.
You can see all the new growth around my face after I started working on recovery, here:
Here’s a better view of my hair. So it’s pretty wavy today and looks bigger just because of that… but you can eat least get a good shot of how the baby hairs filled in on the left side.
Lindsay: Hi Jenny, your story is SO similar to mine. I was a serious runner starting from the end of high school all the way until I recovered from HA last year (at age 30). This issue is SO common among runners and it’s really terrible how normal and acceptable it is perceived for female runners to not get their periods. There is an utter lack of understanding, even among doctors, of how big of a health issue this is, and it needs to change.
My hair came out too. And my skin was dry & dull. I feel like when you have HA, there are some big things in your body that aren’t functioning properly (like your fertility and your bone health!) but also countless small things. Your mood, your energy, your digestion, your “glow.”
I’m really glad that you’re taking action for recovery. I will share that for me, I needed to give up ALL exercise, even weightlifting, in order to recover. This was hard but remember that during recovery you are trying to add enough body fat and rest so that your body feels like it is safe to ovulate again. Weightlifting is counterproductive towards that goal. The faster you recover, the faster you will be able to return to normal activity!
Oh I forgot to say one thing! At my last haircut, my hairdresser’s jaw dropped open and she said “What in the world have you been doing, your hair looks so much thicker and healthier!” And I was like, “well, I stopped running.”
Natalie: So i am not recovered yet but have gone from significantly "underweight" in June last year to low "normal" currently. Last year a big bit of hair literally snapped off. I have curly hair and atm its the thickest it has been in years 🙂 xxx
Here I am when I was not yet working on recovery:
And after some weight gain 🙂
xxx not particularly long but I’ve found my hair type, i.e., curly, tends to grow outwards not long hehe xxx
And this is the piece that had snapped to 1-2 inches!!!!
So basically there is hope! I am probably one of a few on here who have been very, very unwell. I still hold out hope for periods to return (edit a few years later - Natalie worked really hard on recovery, responded to oral medications, and got pregnant) but little bits like hair growing thicker keep me going because my body IS capable of repairing damage just like yours will be too hun 😍😍😍 Oh and those glasses in the original pic? Yep I haven’t needed them at all in months because my eyesight has improved. Sorry for the waffle and hope it helps 🙂 xxx
Nadia: Great job on taking the steps to recover from HA. I also had A LOT of hair loss from HA. I also had subclinical hypothyroidism but it was directly related to HA. Recovery improved my hair immensely. It takes a long time to grow back, but it does come back.
Clarice: Yes that exactly what my hairline looked like… I would definitely suggest lowering exercise and upping your food as much as you can…. Maybe start looking into the fact you may be holding on to some other emotions around food and exercise… Working with someone can be helpful in the transition! Also maybe check thyroid levels…
Florence: See these weird bangs? This is the hair i was denying myself to have by never eating enough! Pretty much same location as yours right? It took a while but as soon as you’ll start fueling properly, it WILL grow back!
Anna: I have those weird bangs too and never even thought about that being one of the many positive side effects of recovery!!! I used to always have these weird short little hairs on my left side that would never grow. And I just assumed those are non-growing hairs lol But a few months ago I noticed they’re getting longer…
Nicole: Here’s some hair growth after reaching a "fertile" BMI!!! See those hairs sticking up? I have a few sections of those through my head, granted I didn’t have bald spots, but seems like more follicles (hair and other 😉 are waking up).
Shanta: Yes. I kept my hair short because it was so thin. Even so I was getting bald patches.
Thank you for reaching out. This is a very hard process to do on your own. If you can find a counselor or group for eating disorder recovery it may help. Honestly though for me this group was the most effective help.
The journey from type A to type play, the journey from control to love, is often rocky. But it is, ultimately, exactly that: a journey to love, and the end result is as good as that sounds and better than any love story you will ever watch/ read. What is more, you deserve that amount of love and joy, you always have, and the world will be a little more right every step you take towards it. Many women here come from an eating disorder background, and we all have each other's back. You can do this.
Jenny responds: Thank you so much for sharing. I’ve struggled to reach out to get help but this seems like a great place to do it. It’s reassuring to find others that have dealt with the mental struggle of hair loss. I appreciate the support.
As you can see, hair loss is not uncommon with HA – but like so much of the other damage done to our bodies through underfueling, overexercising, stress – whatever your personal combination may be – the effects tend to be reversible.