Kewpie’s Hair Loss Story

by admin on March 18, 2008

Kewpie's Hair Loss StoryJust to reiterate what many other women have said, this website is a wonderful and empowering resource. Here’s my story:

I noticed a lot of hair in my tent while camping for 5 days last summer. At the time, I was not on birth control although I’ve been on and off it for 11 years (I’m 27). I got on Apri shortly after for its intended purpose and didn’t notice any change with the hair loss. I didn’t really think much of it until it didn’t stop. I freaked out while on the phone with my mom around Thanksgiving (my family all lives in Connecticut; I moved to Seattle about 2 years ago for my job). I went to my general practitioner and she basically told me, “See a dermatologist, and if its happening there’s not much you can do”. When I saw my family at Christmas they said I looked the same and I shouldn’t be so freaked out; everybody loses hair.

Let me tell you about my hair on a good day: I’ve always had baby-fine hair! I was bald until I was 2 and have never had long or thick hair. My mom and her sister have fine hair too. I’ve always gotten good cuts and color. My dad is balding; he’s 52…but I feel like many, many guys are balding. My uncles are mostly bald but no women in my family are. I can accept thin hair, that’s what I’m used to. It’s just excruciating to lose what already few hairs I have. I don’t have hair to spare!

The dermatologist I visited got an abnormal hair pull and diagnosed me with Telogen Effluvium. He essentially said, use Rogaine, eat an iron supplement and grin and bare it. All my blood work came back fine (whatever that means). I felt relieved for a few days but then decided that I was underwhelmed with his diagnosis and I couldn’t just sit here shedding hair all over the place, so I made an appointment with a female derm to get a second opinion. It’d been going on for 5 months. Believe me I wracked my brain trying to figure out what it could be. I had no major trauma or dietary change. I eat pretty well, exercise, etc. The female dermatologist was a bit more sensitive and her hair pull test was “normal”. She inspected my scalp and said it looks healthy and there is no scarring. She told me the shedding was probably just my body readjusting to the change in bcp (although I’ve gone off and on before and have never had a noticeable problem).

The weird thing is, two girlfriends I met when I moved here had hair loss issues. They both moved abroad last summer and when I emailed them asking about it, they also said, You’re fine, it’s hereditary or stress related. They’d laugh you out of the hair loss clinic. Try Rogaine. Two hair stylists I went to said they couldn’t believe how many women were approaching them with hair loss issues. It makes me wonder if it isn’t something environmental. [click to continue…]


A Bittersweet Light At The End Of The Tunnel? Anrea's Hair Loss StoryHi girls,

I wanted to write with regard to all the women on this forum, and specifically because of a recent post I read from Rosalinda. Her story sounds similar to mine, and I recently had an eye-opening dermatologist appointment that I haven’t had time to write about until now.

Let me start out with my hair loss story:

I first noticed my hair loss when I was 18 years old, 4 months after I started taking ortho-tricyclen lo. My hair had been coming out quite a bit in the shower but I didn’t think anything of it because I had incredibly thick hair. You know, hair so thick it makes the hairdressers cringe when they have to blow dry and style it because they know it will take like, an hour. I wish more than anything I could say the same about my hair today! One night as we were about to go out my boyfriend said he was a little concerned that he could see parts of my scalp through my hair, and asked whether it could be due to my pill. Well I became alarmed by my hair loss and began researching it extensively. I got bloodwork done at two different clinics with everything being normal, but I asked them to switch my pill anyway. I picked Yasmin because it is supposed to have anti-androgenic effects. That was 3 years ago. The hair loss never stopped, and my diffuse thinning kept progressing. I have probably lost 2/3 of the hair I used to have… when I put my hair in a ponytail it is barely the size of a sharpie marker. I have been hesitant to quit my pill altogether because I’m afraid I will go through the “dread shed” telogen effluvium and lose even MORE hair. I also get terrible cramps, heavy, long periods, and acne (my face is pristine when I’m on the pill though). However, I’m not really sure if it was my pill that caused it because I do distinctly remember mentioning in the past that my hair felt thinner and easier to manage than usual (this was when I was about 17, as I was getting ready for a homecoming dance). It is all so confusing and difficult to pinpoint. As trivial as most people think hair is, this has been the most traumatic and challenging experience of my life. Sometimes I have to stop myself and thank my lucky stars that I am healthy and I have a good life and my hair isn’t everything. But some days, hair really does feel like everything.

This month, I hit a major turning point. I had a scalp biopsy done by my dermatologist, expecting nothing to turn up. When I walked into his office 2 weeks later for the results I got a diagnosis I had never dreamed of or never researched. Scarring alopecia, due to Lichen planopilaris. My heart hit the floor. SCARRING… seemed so final, like the death sentence for my hair. My dermatologist seemed a little more optimistic though. He said it’s an infection of the scalp, no one knows how you acquire it, it’s just kind of a freak occurrence (why me??). My scalp hadn’t looked inflamed at all, but he said it showed mild inflammation under the skin when the biopsy was analyzed. Even weirder, lichen planopilaris normally presents itself as a patch of hair loss, rather than diffuse. I am still a little skeptical about my diagnosis, but I am following the protocol: antibiotic (minocycline) and topical steroid (olux foam). Together these are supposed to reduce the inflammation under my skin and help stop the hair loss. My derm also said I could try the Rogaine 5% once per day to try and revive some of my recently attacked follicles. He wasn’t sure if it would work though because I don’t have androgenic alopecia. We shall see. When I left the dermatologists office I just broke down and started bawling. Partly out of relief that I could possibly control the fate of the rest of my hair, and partly out of extreme frustration. I had been shouting from the mountaintops about my hair loss to every doctor that would ever listen, and none of them did anything until now. I shudder to think this could have been prevented.
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Schoolgirl Struck By Alopecia Loses All Her Hair - In Three DaysBy: Liz Hull

A schoolgirl has described how she went bald in three days after developing an extreme form of alopecia.

Jordana Seville, 15, spotted the first bare patch among her thick blonde locks last Wednesday.

The same day further large clumps of hair started falling out. Within 72 hours she had lost nearly all the hair on her head.

“It was really scary when my hair just started coming out for no reason,” she said.

“At first I could cover the front with a bandana, but then the back started falling out too so I had to shave it off.

“People have been really shocked to see me but people have reacted much better to it than I thought.

“Last week I had a full head of hair and now I have none.”

It is not clear why Jordana developed alopecia although it can be triggered in teenage girls by hormonal changes or stress.

Jordana’s mother, Ashley, 43, took her to see their GP who has referred her to a specialist dermatologist.

“I’m a qualified hairdresser so as soon as Jordana showed me the bald patch I knew to take her to a doctor,” said the mother-of-three from Poulton-le-Fylde in Lancashire.

“At this stage we don’t know whether or not her hair will grow back, but I have to say I’m very proud of the way she has coped.

“I actually think her new look is quite striking. Many people have commented that it looks nice.”

Jordana, who has been off school since her hair loss began, said: “I’m a bit worried about going back. A lot of my friends have long hair like I had, so I’m not sure what people will say.

“I wanted to speak out because alopecia is more common than people think and often occurs in teenage girls.

“It isn’t all that bad, the doctor has been brilliant and I have looked into the possibility of wigs.” [click to continue…]


Jeni’s Hair Loss Story

by admin on October 14, 2007

Jeni runs a great blog on beauty and skincare called “Savvy Skin” and has contributed several comments on The Women’s Hair Loss Project. Now she is sharing her story. Here it is:

I’m 28, and I used to have really thick curly hair up until recently, and now I have probably half as much hair as before. I first started noticing that my part was really thinning back in September and I freaked out. After doing research, I first assumed that it was from the pill (ortho tri-cyclen) and I stopped taking it shortly after. I had been off and on it for over 10 years, but never really noticed any hair thinning before, or even the few times I went off it. I always lose a ton of hair (people always comment about my hair falling out all over the place), and I guess my hair has decreased over the years, but I never saw any baldness before Sept. My dad’s hair is thin on top, and my mom’s hair is thin now (but she has diabetes, is hypothyroid, takes a lot of medications, and eats terribly, so I don’t know if hers is AGA).

I first went to a dermatologist who said it could be AGA but couldn’t tell, and he just recommended Nizoral since he saw dandruff. Then I went to a general doctor who had no idea about anything, but she determined I was depressed, and suggested anti-depressants. I actually was really depressed (even before the hair loss), so I started taking anti-depressants, even though I was afraid it could make my hair worse. She claimed my hair loss was probably just because I was depressed and that it would grow back. I asked for all the various blood tests, and everything appeared normal. I started using Nioxin shampoo, Nizoral weekly, started taking a better multi-vitamin, attempted to eat better, including more iron and protein. For several months I‚ve also been taking Evening Primrose Oil, Vitamin C, Vitamin E, Iron, & Flaxseed on my food.

Things not getting better, I saw Dermatologist Dr. Richard Strick at UCLA in Los Angeles because he supposedly specializes in hair loss. He looked at my scalp and said I definitely have TE (telogen effluvium) and that things should just get better eventually. He said I could use Rogaine to speed up the regrowth, or just wait it out. He seemed pretty sure of himself and didn’t suggest anything else. The cause of the TE remained elusive.

A few months had passed and it was time for a visit to the endocrinologist because now I was sure I had a low thyroid [click to continue…]


On The Bright Side – Hair Loss Story

by admin on October 1, 2007

On The Bright Side - Hair Loss StoryMost of you will smile when you read this, I hope! We all need to keep smiling, no matter what. My hair loss story began in August 2007 when I rubbed the left side of my head, through the hair (I have very long dark hair that I wear up in an “old-lady” bun. I immediately had the never before experienced sensation of feeling absolutely bald scalp on my own head! I didn’t panic, but I went to the mirror to see what was up. Well, what was out, not up, was the hair that had covered about a 5- inch square area of my scalp! Absolutely bald. I really don’t know when it fell out, for sure. I’m not much of a self-absorbed person vis-à-vis my hair, etc., and with it being so long, I just wash, dry, brush, and pin up.

Anyway, I did ask my doctor about it. She did a thyroid test- all OK- and recommended that I see a dermatologist, which I did NOT do. I read about alopecia online, and decided that there was no effective treatment. I have enough trouble being a woman and now a partially bald woman- without being a guinea pig too. Of course, the fact that my long hair and the style I wore kept others from seeing my problem helped in my decision. Perhaps lazy, perhaps stupid. I don’t know.

Over the past year, I developed an extension of the bald patch to the rear a little, not a lot, and also what seems to be an attempt by my hair to establish a bald patch right at the hairline. That will be a big problem if it continues. We’ll have to see.

Meanwhile, earlier this year, I decided to purchase a wig- just in case I woke up with NO hair at all! I got a dark auburn bob-style inexpensive wig, and it didn’t look too bad- although it didn’t look like “me,” either. Well, I hadn’t warned my husband, and when he came into the kitchen door, I was standing in plain view in the den, facing sideways to him. He opens the door, takes one look, and says, “What the hell is going on here?” He really thought some strange woman had invaded our home! After he got over the shock, he still didn’t like it, so I haven’t worn it- but I have kept it just in case. The good news is that about two weeks ago I noticed that the original patch now has some hair – about 1 inch long- repopulating portions of it. So that gives me some hope.

The best news is that I may be partially bald, but I’m healthy and not bald from the effects of treatment for some deadly disease. So I give thanks. It could be worse.

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Endocrinologist or Dermatologist - Which doctor whould I see for my hair loss?I must first clarify and make it known that I am NOT a doctor and cannot provide medical advice, the following post is merely my opinion based on my own experiences.

In answer to which doctor should I see for my hair loss, my opinion is that you should probably see both. Most doctors don’t know enough about hair loss as it is, so seeing doctors in different specialties may actually help you get a better, more accurate diagnosis. I am sure there are various conditions of hair loss that might be better served by seeing one more than the other. Perhaps a dermatologist would be better suited in determining if the cause was an infectious skin condition such as ringworm or scaring alopecia, and an endocrinologist may be better at diagnosing hormone related hair loss. The truth is, any doctor whether it is an endocrinologist, dermatologist, or general practitioner with a strong interest and knowledge in hair loss can make a proper diagnosis and work with you on the the treatment they think will produce the best results. The operative words here are “interest and knowledge.”

Try and find a doctor that seems to care about women’s hair loss, and understands the emotional devastation it causes. I don’t want my doctor to dismiss my hair loss, and I don’t want him/her to tell me it’s no big deal. It is a big deal and if your doctor makes you feel uncomfortable in any way, they he/she is not for you. If possible try and speak with the doctor by phone (believe it or not some doctors will talk to you on the phone first) and if the rules of the office don’t permit this then try and ask as many questions to the receptionist, such as, does Dr. X see a lot of women for hair loss? Does he order blood work? What does he usually prescribe for treatment? The reality of that last question is that their is no “usual treatment” every woman is different and hopefully the receptionist tells you something to that effect. I don’t want to see a doctor that prescribes Rogaine as his/her first line of defense even before making a proper diagnosis with blood work or any other necessary tests. I firmly believe you should not be walking out with a bottle of Rogaine the first day of your appointment. Sure the doctor can probably be able to tell if your hair is experiencing miniaturization, but what about the blood work to determine the causes? Rogaine may be the right treatment for you, but I’d like to know why. [click to continue…]