Hello All,

I am reaching out to the AU people out there... just wondering a bit about your stories. I have been presenting with diffuse scalp loss for more than 2 years, about 6 months ago I noticed thinning brows and lashes (the rest of my body hair is easily plucked). Endo says possible UA, not sure though. I have had all the lab work and everything is normal except low ferritin and deficient Vit D. From everything I have read research wise, AU typically presents very rapidly. My loss seems to be slower, lost more than half of my hair in this time frame, can see my scalp and I am thinking about supplemental hair. Still have brows and lashes, but they are getting patchy. Anyone out there with some insight to how AU presents? I know it is different for everyone, I guess I am looking for a similar story to mine.

Thanks,

Jen

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Have been having diffuse hair loss since sept. 2014. Starting in mid nov. 2014, my lashes, brows, and nose hairs started falling out. All diffuse type. I have seen some regrowth in all areas but have been shedding non stop for 10 months. So my growth can't keep up with my shedding. Just touching any hair - it falls out. Still have hair all over the rest of my body though. Went back to my alopecia specialist (derm) and she said since I am still having this shedding she strongly believes I have diffuse alopecia areata. I didn't get a biopsy but she was pretty confine especially because my eyelashes have a bald spot. Have you regrown any hair that you have lost?
Sorry it took me so long to respond. So, I went to a specialist in December and got a scalp biopsy. There was absolutely no inflammation, so the doc was sure I did not have areata. I was positive for the hair pull test (duh) and the biopsy showed mild FPB. She thinks that my chronic TE triggered FPB. Still unsure what triggered the TE. The scalp shedding started really slowing down in January, I went from >200 per day to less than 50. In December I started Ferrous Fumarate and low dose synthroid. My thyroid function was borderline (TSH 2.39) she said and since I was symptomatic she wanted to try the synthroid. maybe the combo helped slow the shed?? It has been about 6 months since the shedding has slowed and I have a ton of regrowth, but it is not really adding any volume and my hair is still very thin. I am sure it is going to take a while for any growth to be noticeable as I lost >50% of my hair. I am contemplating using the new 5% rogaine for women as I now have FBP but I fear the "dread shed" that everyone talks about.

As for the lashes and brows, I began using Latisse per my docs recommendation. I have been using it for about 4 months and it has worked well for the lashes (btw, I also had a spot or break in my bottom lashes). My brows have continued to thin, I lose more than 5-6 per day. I also have mild sebhorreic dermatitis in my brows and they have been inflammed and very flaky for a while (before I started latisse). My derm just prescribed ketoconazole cream and steroid cream which I started last Monday, so hopefully once the inflammation is under control the brows will have a healthy environment to grow. The brow loss is diffuse, no spots-just like my scalp loss presented. Also, my arm and pubic hair is still easily plucked.

It is very frustrating that I still have no answers, all I know is that my scalp and body hair is thinning for a reason and I up know there is an underlying issue. I feel as if I have been tested for everything to no avail. The only remarkable labs have been my ferritin and vit D. But, the new iron I am taking seems to be doing great. I went from a 7 to a 39 in around three months.

So, I wish I had more answers or a better report for you. I take it day by day, this has really done a number on my confidence!
Just sent you s friend request with my number. But I feel like I'm talking to myself when I read your story.

I went through a huge trauma in which my family could have died and 3 months later my hair started falling out in clumps. I thought it was my thyroid but all numbers came back fine. (however my numbers are still higher than yours so I'm wondering if I should ask to get my medicine increased to 50mcg?!?). So I then went to derm and we figured out it was telogen effluvium from the psychological trauma I endured. Well in November I started losing eyebrows, eyelashes, nose hairs and pubic hair - all diffuse shedding- and this prompted a panic attack or 2. I was scared of losing all my hair and thinking it was AU. So come jan my shedding slowed down to less than 100 a day and come feb it kicked back up again bad. So I had a panic attack and actually fainted from it. So scary. It was this that made me start talking to a therapist. I continued by meditation and I keep a journal. It stayed high for a month then dropped down again but end of May kicked up and hasn't come down again. I also have sebborhric dermatitis on my scalp. So I use clobex for that and nizoral shampoo. I also just noted this past month where it would Have to shave my legs and underarms every other day I now only have to shave once every 4 days. And some of my leg hairs ( once they're long enough) are easily pluck able too.

Each derm says to try the rogsine but just like you I'm so scared of the dread shed! So I am not ready for that yet. Agree completely that this totally driven down my self confidence.

I am just so happy to know that we are going through this together bc it is so lonely out there. I've probably lost about 25% of my scalp hair. But it's only been going on for 11 months.

I am thinking I have chronic TE as well. I did get nervous when I saw my leg and underarms weren't growing in as fast that it was AU. But I think it's all related to cte. And the funniest thing is that the derm I went to who is supposed to be a hair specialist told me that TE is only in scalp hair snd that I wouldn't have hair loss anywhere else. I have many reputable websites that prove her wrong.

Also on all my reading in cte - low ferrit and low vit D are 2 main reasons why telogen effluvium happens. I'm sure that was your trigger. Keep upping your ferritin to over 70 which is optimal for hair growth but don't go too high bc it can be dangerous.

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