Hi Everyone,

I am 34 years old  and I lost my eyebrows over the course of a year or two and have now been without them for nearly a year. I had my thyroid tested about a year ago and everything was normal. I saw a dermatologist approximately 2 months ago who essentially termed it generic alopecia and didn't offer too much in the way of a prognosis. At the time, she asked if my hair was thinning, and I told her that I didn't think so, but wasn't sure. I explained that for a long time I thought my eyebrow loss was just my imagination, and it was only when nearly half of them had disappeared that I was sure they were definitely falling out. So, I felt a little paranoid about my hair, but I wasn't sure it was thinning. I explained that most of the hair on my arms had disappeared too, but I had only noticed it recently since my arms weren't very hairy to begin with. I also told her I thought my eyelashes were starting to thin, and she prescribed generic Latisse (my eyelashes are now pretty amazing, but nothing with the brows).

Having said that, at the time, I had noticed the edges of my hair around my temples had started looking a little frazzled. My boyfriend pointed out a couple stray hairs in my "sideburn" area that were there by themselves and looked out of place. The hair around my temples looked thin, but I couldn't be sure if it had always looked that way, and I was only noticing now because I was looking for it. I also noticed a couple of patches in the same area where the hair follicles were kind of pinkish-reddish/a little bumpy, and the skin around my temples also seemed to look whiter. I'm not sure why I didn't point this out to the dermatologist. I guess I thought maybe my scalp was irritated by my overreliance on dry shampoo.

After going to the doctor, I started paying more attention to my hair-taking pictures from different angles and comparing to past pictures. I also took pictures of the top of my head, and I have come to suspect that my hair is thinning on top as well. My paternal Aunt and Grandma have female pattern hair loss, so I realize that could be a separate issue. I bought Rogaine, but have been reluctant to start using it because it is a lifetime commitment, and until very recently, I think I was trying to convince myself this was something that would magically fix itself.

Less than a week ago, I was researching using Minoxidil on eyebrows when I came across a description of FFA that included the symptoms of "moth eaten" edges of hair, whiteness of the skin, and reddish follicles, as well as the potential for total loss of eyebrows either before or after head hair loss. I had to read and reread what it was saying. I felt a little panicky as I realized this was exactly what I have been noticing. I never thought my eyebrow loss matched any of the other types of alopecia, as my loss was slow and systemic, rather than sudden. As I've read more, I'm fairly convinced this is what is happening to me. I have been researching eyebrow loss for well over a year now, and I think I kept overlooking FFA because of the pictures of advanced hair loss and the description of losing "the band of hair" around the hairline. If I have this, I think I am in the early stages (first few years), and so when I saw things pertaining to FFA, I thought, "nope, not me."

I am now hoping to get a diagnosis. I have been on the CARF referral page, but the closest doctor to me is 4 hours away, and when I looked up his information, it said he specialized in hair restoration and didn't mention anything specifically about FFA. I have called the dermatologist's office I previously went to, and they said they do have experience with scaring alopecia and that while my notes stated there were no signs of scaring (they were referring to my eyebrows), they would be willing to do a biopsy (I think they are under the impression I want them to biopsy my eyebrows, which is not the case). I also called another dermatologist about an hour away who specializes in female pattern baldness, and I was told he does have experience with FFA. I think because I've read it's rather rare, I'm skeptical that both of these offices have experience diagnosing and treating FFA. I worry that when the receptionist/medical assistant hears the word "alopecia," they just say "yeah, we treat that."

So my question is: Do I need to travel to an FFA specialist to get an accurate diagnosis? Also, does anyone know how the referral list on CARF is compiled? I just found it odd that information about the doctor I looked at online didn't say anything about FFA.

Sorry this is so long, and thanks in advance for any help.