Can't find anybody else who seems to have the same type of hair loss

Hi guys.

This is my first post and it's terrifying me that I'm here, making a post in an alopecia forum. God only knows why this devastating, emotionally crippling disease has happened to me. I'm sure most people here feel that way.

I have a complicated story with too many nuances. But the long and the short of it is, I've been losing my eyebrow hair since June 2013, and my eyelashes/scalp hair since October 2013. I dealt with a number of strange medical complications last year, adverse reactions to a steroid taper, and withdrawals every month from tapering off Celexa (which I've still yet to come off completely) since January 2013. I deal with pretty bad anticipatory anxiety/have hypochondriacal tendencies but it wasn't until a week long steroid taper that everything really went wrong. I had every reaction in the book, but the constant panic attacks, sweating, insomnia, and never-ending racing heart were the worst parts. I was housebound for THREE MONTHS from this awful stuff and have never fully recovered. My anxiety is much worse than it ever was before the taper, and since then, I've been tapering off Celexa every month (stopping with last August) which causes its own awful withdrawal symptoms.

My skin, which was never great (had Seborrheic Dermatitis since forever and mild acne) has since gone berserk. I've never seen it with so many clogged pores/acne. My eyes began to bother me and I noticed that my eyelids were swollen and I had a dry, gritty feeling in them. This came in September, when my eyelashes/scalp hair started to fall out. Everything is incredibly inflamed and  sensitive, including my horribly tender scalp, which has been tender and painful since the hair began to shed.

My hair loss (and other) symptoms do not seem to match up with pretty much anybody I've read about. It is COMPLETELY diffuse, there are no bald patches anywhere, and it's incredibly slow...I would say I lose 200-250 hairs per day, though I could never imagine counting them since they are always all over the place (mostly on my clothes). It has been falling out at the same pace since it began, but is becoming more noticeable now. My hair was my absolute best feature, thick eyelashes and eyebrows....I am devastated.

I realize that I am all over the place, but I honestly didn't know how to organize my thoughts. Everything is still normal looking to the outside world (except perhaps my crappy sparse eyelashes) and I am able to fill my eyebrows in with makeup. I still have a substantial amount of hair, since I started with much more than most people. But it is not slowing down and i do not know what i am dealing with. I was told that it was Telogen Effluvium when it began last year, and after seeing three completely useless derms, I can't imagine that the diagnosis could be correct. None of them would do a biopsy, instead telling me to go to a 400$ hair specialist to get one done, which I simply can't afford. So the diagnosis is not definitive. To me, the symptoms seem more in line with diffuse alopecia, because I have not read about TE causing eyebrows/lashes to shed. My baby hairs are very thin when they used to be just as thick as the rest of my hair. My hairline is being affected, because that's where the baby hairs are. I also have had a few stark white hairs since I'm 18 that i used to pluck out, and now it seems like I have many. I am only 24 and do not have a family history of hair loss or early graying.

My scalp has also developed some acne, which is strange, and often times when i scratch it, hairs will come out with balls of sebum attached to the shaft. Could the heightening seb derm cause hair loss? I also have it in my eyebrows/all over my face.

I'm not really sure what to do with myself. I have waited and waited and been to countless doctors, all of my blood work is normal, my colonoscpy (I also suffer from IBS-D and have lost a little weight recently) was normal. Everything keeps coming back normal. The only thing I tested positive for was ANA. I don't understand what is happening to be or why, but I am so low, so depressed, I have visions of me in a wig with tattooed on eyebrows at my brother's Jamaican wedding this December. I cannot handle this. I don't know what to do. I need help badly, but since my symptoms don't seem familiar to anybody, I feel completely isolated. Is there anybody out there who could shed some light? I have also been to a rheumatologist. The only "hope" I have left is the endocrinologist, and if she can't find anything, then I don't know where else to search.

I am praying that somebody reads this and can offer some insight. My name is Kate and I am 24 years old. Please...help! I have attached a bunch of pictures for reference. I went from modelling to having my hair fall out. this is truly unbearable...and how far will it go?

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Permalink Reply by katiekins198 on April 17, 2014 at 11:06pm

and here are a few "before" pictures. i realize it could be much worse, but it's the not knowing how much worse it'll get that's killing me. i would say i have lost 55% lashes, 50% brows, and 45% scalp volume. it's also worth mentioning that my nails (which are always rock solid) have some flaking which started around the time my eyebrows began to shed

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Permalink Reply by michelle on April 18, 2014 at 12:03am

Hi There,

You are not alone!!! You will find that those on this site will be very understanding and supportive.  It sounds like you have been through a lot...outside your hair loss.  It sounds like you are doing all of the right things....doing the blood work which will rule out other possibilities for hair loss.  It is not for me to diagnose your hair loss but I will tell you my story and what I know with all the research I have done.  I have Alopecia Universalis.  I am 51 ( a little older then you ;)) and just like you had long wavy dark hair, dark eyebrows and dark long eyelashes.  About 3 years ago I started to lost my hair.  I was sitting on the couch and touched that back of my hair and it was gone!!  Within a year my scalp hair was gone..then eye brows, lashes and the rest of my body hair..all within 2 years.  It was a very scary time.  I like you had all the blood tests, which all came back normal.  I saw two dermatologists and 2 rhuematologists.. I was diagnosed in 2007 with Post Traumatic Fibromyalgia after a car accident.  Some of my symptoms mimic other diseases.  Everything has come back normal...which is a good thing.  Alopecia is an autoimmune disease where our immune system attacks the hair follicles thinking its a foreign body.  The big thing with this autoimmune disease is that currently there is NO known cause....There are different degrees of the disease Alopecia Areta..thinning and patches of hair loss on scalp...Alopecia Totalis...total scalp loss...Alopecia Universalis the more severe of the disease..total body hair loss (thats me).  There is no cure for this disease but their are some known treatments that have helped some..i.e., steroid creams, steroid shots, etc.  This is best to go over with your dermatologist.  The one thing to know about alopecia is it is unpredictable. For some hair comes back on its own...you won't know why or what to do to continue.  When I say there is no known cause..there isn't.  You will have those that will say...its stress...or something else.  There is nothing you could do to prevent this disease.  You are also allowed to be sad at the loss of your hair.   There is a group on this site for 'new diagnoses' that I think you will find helpful.   Please take it one day at a time.  Michelle 

Permalink Reply by katiekins198 on April 18, 2014 at 11:10am

Thank you for replying, Michelle. Unfortunately the three derms I have visited have left me frustrated and have been completely unhelpful, refusing to do a hair biopsy because they are incompetent at their jobs. I feel like if I don't know what I am dealing with, I cannot move on with my life. I only have half a year left on my parents' health insurance, and it is weighing on me that I need to find a full time job with benefits. But I'm not sure how I could possibly put forth my best face when I am losing all of my hair. I work in the PR industry, which is all about stress, long hours, and being attractive. How can I work in a field where looks are so important? Everything is just too much for me to deal with. My entire future hangs in the balance because of my freaking hair. It is so infuriating and I am so, SO angry at the world for doing this to me. Who will love me if I am ugly? Who will want to hire me for a job if I look freakish? Who will want to have children with someone who could pass on this disgusting disease? And what am I even dealing with? These questions have haunted me every day for a year and I can't ever get my mind off of them, especially since hair loss is literally in-your-face and I have scalp pain from it. This is not what I want my life to be....

Permalink Reply by michelle on April 18, 2014 at 8:15pm

There is no doubt that this is a crappy disease. I grieved the loss of my hair.  Then the question comes do I want to be defined by my hair?  My skills, knowledge, personality didn't change with the loss of my hair.  Physically do I look different?  Sure. Wigs are not my thing so I wear hats scarfs and go bald most of the time.  I chose to live with Alopecia and to enjoy my life.

My worry when I read your words is the length of time you have been struggling.  I would strongly suggest seeking some counselling with this.  You are deserving to have all the support you can.

take good care,   Michelle

Permalink Reply by katiekins198 on April 19, 2014 at 12:39am

Thank you so much, Michelle. I agree that it is too much time to be letting this run my life. Anticipatory anxiety is a bitch on it's own, but now dealing with an unpredictable and chronic disease...It's just doing me in. Every time I am happy for even a minute, I revert back to, "you're losing your hair, nothing else matters."

I definitely need to be in therapy. Unfortunately I haven't found anybody yet that I connected with. I will keep trying. Thank you again for your kind words and I admire your strength and positivity :)

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