hair loss story

Helping Another

by Rebecca on March 1, 2009

This beautiful story of inspiration, strength and understanding  was written by Becca, a member of The Women’s Hair Loss Project Network.

Yesterday started like one of those days that you don’t even want to get out of bed for me. Tuesday, my 2 year old and I both had the stomach flu, so between her vomiting anything that went in and me having a mind numbing headache, we survived. My husband decided that he would take the day off yesterday to help us recooperate and maybe do the five loads of vomit laundry that we accumulated. I had to get my normal bloodwork done, I have it done every two weeks because of my hypothyroidism, so we had to find a lab that would accept my new insurance. I had some bad experiences in the past with waiting in the lobby of these places, till they actually forgot I was there and turned out all the lights. I didn’t want another experience like that, especially being sicker than I normally am.

I reluctantly put on a wig, it was colder here so no bald head outside, and we left the house. Once we got to the labcorp building I just wanted to go home and lay in bed with a bucket. After registering with what I thought was just a receptionist, she informed me she does the whole shebang, registery, bloodwork, and follow-up. While she was entering all my new information, she turned around and said, “Ya know, I was just diagnosed with what you are getting bloodwork for.” I laughed a little and said good luck! Here is a woman in her early 50’s, very put together, almost looking defeated when I said that. I realized how it came across and I explained to her that what I have is a very rare form of the disease and all my symptoms are extremely heightened. She asked me about some of the symptoms, like my hands and feet fall asleep, my joints ache, exhaustion constantly, etc. And then she mentioned hair loss. I’m not one to get embarrassed, so I just told her, “Yeah, mine is so bad, I shaved my head a few weeks ago.” She just looked at me and then told me that she too, is having hair loss in quarter sized patches and it scares her. I thought of all you ladies immediately!! I could see in her face this look of upsetedness and sympathy. I knew what I had to do for her and the hairlossproject. I told her how devastating it was for me at first and how I found support with you ladies. I told her how I cried all the time at first and really felt alone. I told her that acceptance will come, no matter what happens with her hair. [click to continue…]

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Hi, I’m a 19 year old girl who has suffered major hair thinning. I’ve just discovered about this community/project a few days ago. Uptil now, this seems to be probably the most resourceful place I’ve seen.

I’ve been pretty desperate for answers.

As a child, my hair was extremely thick. However, as I grew up, my hair become progressively thinner. Two years go, I went on an unhealthy diet and I started to really notice that my hair was extremely thin (also, my hair was falling out like crazy). I thought that it was due to the fact that I didn’t get enough vitamins, so I started to eat healthily again. Unfortunately or maybe fortunately, my hair only stopped shedding like crazy, but no new hair grew back to replace those I lost.

It has been 2 years, and my hair is still quite thin. Most people can’t see it, but I definitely can – especially when my hair is greasy or when I tie it in a ponytail (you can see my scalp very clearly).

I’ve read as much as I could on women hair loss, and nothing seems to really fit my symptoms. I took a blood test and it showed that my levels were perfectly fine.

After reading as much as I could, there were really only 2 diseases that sort of fit my simptoms.

1. Hypothyroidism – my mother has that
2. Androgenetic alopecia – my hair is thin all over my head and my hairline is not receeding.

However, the only thing that doesn’t seem to quite “fit” is the falling of my hair. My hair does not seem thinner than it was 2 years ago. I do not lose an excessive amount of hair (contrary to the many testimonies I’ve read). When I comb my hair after a shower, I would loose maybe 5-10 strands. In some ways, my hair loss seems proportionnal to the amount of hair I have.

I often get depressed because of the state of my hair – especially when I see my friends with thick hair and get to choose different styles of haircuts while I’m stuck to one. I can’t confirm with 100% certainty that my situation hasn’t worsen. From what I can see, it seems to have stabilized. But sometimes, when I look at old pictures, I start believing that it did in fact get worse. Afterwards, I panick and can’t sleep at night.

Questions:
Does androgenetic alopecia have different “levels” of hair loss? I haven’t taken any medication to help, but I know for sure that I do not lose a crazy amount of hair. However, I am also certain that this is certainly not normal for a teenage girl to have so little hair (I now have less than 50% of the hair I used to have as a child, and from the top of my head, my scalp is pretty visible). From what I can see, I do, in fact, have new hair that grow, but not many.

I am so desperate for answers. Although you may not have any precise answers for me, I’d greatly appreciate your point of view on my situation.

Thank you,
Linda

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Dear Linda,

Thanks for writing me and I’m sorry to hear that you are struggling with this. First things first, stop.. take a deep breath, let it all out and take a moment to reflect on how lucky you are that your hair loss has stabilized for the past two years. Losing 5 -10 hairs after a shower is remarkable, you’ll be the envy of all my readers :)

Having said that, I do understand your concerns and pain in having to deal with less hair than you had before. I must state upfront that I am not a physician and cannot provide medical information or diagnosis, anything I write is really just my opinion and knowledge gained from living with hair loss myself for the past 9 years (yikes that sounds like a lot). With that disclaimer out of the way I can continue on. [click to continue…]

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My Life With Hair Loss

by admin on July 16, 2008

My Life With Hair LossWhen I was younger I never ever could have imagined that my destiny was to be a woman with hair loss. The thick mane (clearly on loan) that I was born with was only a temporary gift. Over the last 9 years I’ve suffered a lot, but I’ve also learned a lot. I’ve become a stronger individual and also someone is more compassionate, forgiving and understanding of others around me. I suppose depending on your religious standpoint one could argue that God had wanted to challenge me, test me and make me a better person. I’ve searched for answers high and low, a deeper understanding of why, why me? For myself to live and stay sane, I have to personally believe that there is a “reason” that this was thrust upon me at 21 years of age. So I go with that, whatever helps you sleep at night right? I practically slept through my 20’s feeling sadness and despair for the future… what will be tomorrow. I feel such a heaviness and sadness when I write that, a get a lump in my throat and my eyes begin to well up with tears. I feel a sadness for yesterday even though it’s gone and far behind. Almost like I’m mourning the years I’ve left behind, the years of hair loss. I look back and I realize it was so needless to stay in bed and hide from the world. All along the way I had enough hair to get by and not have the world know my dark little secret.

I would really like to drum that message into the minds of the women who are waking up today and realizing they are losing their hair. You still have A LOT of hair, more than you know and the world isn’t staring at it, only you are. Someone once asked me what I would do differently looking back on the years I’ve dealt with hair loss… I would have lived more. I would have said yes to more dinners and social gatherings, parties and quiet get togethers, I would have let my hair down instead of trying to hide what was only visible to myself. After all during all that time, I still had enough, but I was too focused on the worry of tomorrow to appreciate what I had today.

I am 30 years old now and don’t want to make that same mistake. There is no doubt my coping skills have far advanced over the years and I can snap out of a “down time” a lot faster. I still struggle with things like talking about my hair loss, letting others into my world. I still have a long way to go (hopefully with hair still on my head) in self acceptance, but I’m pretty proud at how far I’ve come. I still run away from mirrors and turn off lights, it is all apart of how I’ve learned to cope. I hope one day I’ll be able to stare at myself in a store window or leave the harsh lights on in the bathroom, look at my reflection and love what is looking back at me. This is me, this is who I am, I have female pattern hair loss… the hand has been dealt and now it’s is up to me to either learn from the past or guarantee myself future regrets.

~Y

http://community.womenshairlossproject.com/womenshairlossproject/

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Synthroid & Hair Loss – Leah’s Story

by admin on June 23, 2008

Synthroid & Hair Loss - Leah's Hair Loss StoryFirst let me say, you are in my thoughts and prayers and I am so sorry you are feeling so sad about your recent shed. I really do understand and I know how much sorrow hair loss causes. I just wanted to share my experience regarding synthroid and tell you that you might consider synthroid as the cause of your hair loss. I have been experiencing hair loss now for about 5 years; it has been one of the hardest things that I have ever had to deal with. My hair loss started immediately after I began yasmin (yes, I know it’s supposed to be low androgenetic but for some reason it caused my hormones to go crazy). Immediately after taking it, I started loosing my hair, my back became overrun with cystic acne and I started growing excess hair on my back. Up to then, I had never experience any kind of acne or imbalance in my system. I got off the pill, but my hair loss never stopped, my scalp started burning and my hair steadily thinned. Of course I went to the Dermatologist who suggested Rogaine, my doctor said I could start spiro (I wasn’t there yet), I read Geoffrey Redmonds book “The Hormonally Vulnerable Women“. At the time, I was trying to get pregnant, but I decided I would try to go back on the pill when the time came. Fast forward a few years later, after stopping breastfeeding, my hair shed started up again. I decided to go on Yaz this time and I have to say, a week later my hair loss stopped and had been stable for 6 months.

During the years that my hair had started to thin, I promised myself when I saved up the money I would go see an Endocrinologist who might be able to give me insight on my hair loss. I made an appointment with a respected Endo in Dallas and I was excited that he might be able to at least tell me why I was loosing my hair, although I suspect AA since my hairs are not coming back. He ran $2,000 worth of bloodwork and found nothing significant. My thyroid was a slightly elevated at 2.8 and I was a little anemic – my androgens were fine, probably because of the Yaz I was taking. He gave me a prescription for synthroid and spiro. Several days after I started taking synthroid my hair started falling out, several months later, it started heavily coming out and I was right back where I was four years earlier, panicked and very depressed. I went back three months after starting the synthroid and he ran $500 worth of more test to make sure he didn’t have me on too high a dose of synthroid ( I was only taking 50mg). My thyroid came back 1.7, everything seemed to be great. [click to continue…]

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More About Spironolactone - Success StoryI got an email from Tracy regarding a post she found on another website about a woman writing about her success with Spironolactone, so I’m posting it here for all of you. Thanks Tracy for this great find!

Hey Y,

I read the new story on the front page on the website asking a question on the effectiveness of spiro. I came across this blog entry by someone on soulcysters.com which you might want to post:

I just want to post my SUCCESS STORY here regarding PCOS and hairloss. I know this is something that is so devastating to many of us PCOS women and seems to respond slowest to treatment, so here’s my story….

On December 4, 2003 I went to get highlights and my hairdresser told me I was “thinning” on top. I had no idea. My hair was always long and thick, my pride & joy. Now thinning? Huh??? Sure enough after examining it under bright lights, the crown showed signs of diffuse thinning… I was DEVASTATED. I had the good sense acknowledge that thinning hair on a woman is not NORMAL, and thus there must be an underlying medical condition with was causing the loss. I researched and researched until my fingers were raw, and everything kept coming back to me saying “PCOS unmasked by coming off the BCP” .

I went to many doctors and none could confirm my self-diagnosis. After 4 months, I had gone from “thinning” to downright “Balding”. My self-esteem hit rock bottom, and my weight ballooned by 30 lbs. I was devastated. I was having anxiety and depression which I have NEVER experienced before in my life, and it stemmed from my hairloss. Having great hair had always been my crutch if I was feeling too fat or too zitty, oh well, at least I had this really great hair, right???? Luckily my husband and mother intervened at this point, and to make a long story short, I got into an Endocrinologist who said PCOS right away and started me on aggressive treatment. That was March 29, 2004. [click to continue…]

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Words Can Hurt Revisted - Debbie's Hair Loss StoryI am 51 years old and dealing with hair loss since I was 19. I am an identical twin, and we both experienced hair loss at the same time in our lives, which seems to support the hereditary link. There were and are no other relatives that we know about who experienced this. After 31 years of dealing with this issue, there have been many cruel and insensitive comments. I remember every one. I think every boyfriend I ever had has asked at one time about my hair loss and some asked in a cruel manner. I was recently married and the day after my wedding an old friend visited for a post wedding celebration. I hadn’t seen her for a long time (mind you she is a grown woman). She sat in my kitchen, in a roomful of people and described running into an old, longtime forgotten mutual friend. She told this woman that she was going to be traveling to my wedding and “of course you remember Debbie, you know, the woman with the really thin hair”. Then she said, “I told her how could you forget Debbie, I mean, she has the thinnest hair I have ever seen!” This she said in my kitchen, in front of my new husband, other guests and the day after my wedding!!!! I was appalled, sad, ashamed, etc. Thankfully others were not listening intently, engaged in their own conversations, but nevertheless, the words hung there for eternity for me.

There is a woman in my neighborhood that I avoid, because she gazes absently above my forehead when I am speaking to her (my loss is due to male pattern baldness). She doesn’t look in my eyes when I speak. I don’t know if she does this absently or on purpose.

Going to the hair stylist is always stressful, especially if the chair I am sitting is not private enough. Usually the stylists are empathetic and they tell me that they see hair loss often. It’s the other customers who absently gaze at my head while they themselves are being serviced. I have left good stylists just because their salons do not offer privacy.

My aging mother who has never had this problem, is now losing her hair to the aging process. She still has more hair that my sister and I. Her comment? “I am devastated. My hair is beginning to look like you girls (meaning my sister and I).

There have been so many other words that hurt. I have a beautiful 18 year old daughter who has not experienced this kind of hair loss yet and I am worried about her. I don’t want her to suffer as I have and my sister. She is on the pill for lack of a period (Nortrel, which I have never seen mentioned here). So far, no hair loss thankfully. [click to continue…]

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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…]

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Welcoming Female Guest Hair Loss Bloggers

by admin on March 17, 2008

Welcome Female Guest Hair Loss BloggersThe Women’s Hair Loss Project is looking for creative, passionate and knowledgeable volunteer hair loss writers to write original articles for our blog. You must have a good command of the English language and be able to effectively communicate your thoughts through words. You don’t have to be a professional writer by any means, just need to be passionate and with a desire to help other women and write articles that other female hair loss sufferers can relate to and learn from.

The hair loss world is much bigger than my thoughts and views and I am looking to provide women with a greater hair loss perspective outside of my own. I’ve seen the blog writings of many women in our network and realize that so many others have so much to contribute. I’ve already reposted a couple of writings written by Dottie and Kathyloulu, members of the Women’s Hair Loss Project Network.

What Type of Articles Are You Looking For?

Pretty much anything that would be of value to another woman going through hair loss. Some example topics of interest could be:

Tips and suggestions for coping and dealing with hair loss

Thyroid and hair loss

How to emotionally deal with hair loss.

Making the decision to wear hair

Adjusting to wearing hair ( If you are a hair wearer you definitely have something to contribute here)

How to find a reputable hair loss replacement provider

Hair loss treatments (the real ones only used by medical professionals) Rogaine, Aldactone (spironolactone) and oral contraceptives. Vitamins and nutritional supplements are good too expand upon.

Help finding the right doctor.

How to avoid getting scammed by the online hair loss predators

PCOS and hair loss

Hair loss news commentary

Etc Etc. The list could go on forever.

By opening the blog up to other writers I am probably going to get a swarm of people interested in only writing a fluff article to embed a million links back to their own site. So here our my over protective rules.

Guidelines and Rules

Since I am looking for only sincere people I have to get a bit creative. All articles written will contain the author credit at the top and bottom of the article. [click to continue…]

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Robin's Hair Loss Story - The Mind & Body Connection Is The First Step To RecoveryBefore I share my story, I would like to thank this site for opening the door to a world of hope, understanding, and amazing strength. You are truly a remarkable young lady with a tremendously huge heart. Your words and intellectual spirit speak volumes about the very fibers of your being. Having this site, is a delight…… for sometimes, we have all been in a very dark and desperate place. Again, Thank You So Much!!!!!

I thought it was time to share some inspiration and background to my hair loss experience. I will tell you at times…. There where moments when I didn’t want to see the light from the sun, peer through my windows. The very thought of getting out of bed was a chore, a dreaded routine that was both exhausting and draining. At the age of 45 I have suffered with hair loss for well over 20 years. At first … it wasn’t that noticeable, after all, I was younger and had a busy schedule. Although it reared its ugly head I can honestly tell you I really didn’t put it all together until some 10 years later.

It was a slow process and more then likely I just ignored the signs… Back then I saw several doctors, truthfully… If I may be honest…. THEY SUCKED! The only thing they made sure of was my insurance numbers and mailing address were correct. Years of doctors and empty pockets, I realized that the traditional medical society for the most part reminded me of lawyers… They prey on your hardships and suck you dry! Years ago, doctors cared about following there passions in helping cure the sickly awhile tending to the needy with compassion and love. Today, while I am sure there’s a handful….. It is a commodity at best! I can tell you that worrying and obsessing over those things you cannot control only fuels the aging process as well as any illnesses you may have, The mind and body connection is real, and once you work with your body and not against it you will begin to see some beautiful things happen. [click to continue…]

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Why Me ? Why Not Me? ShanLaree's Hair Loss StoryI finally decided that I would go see Dr. Roberts, a dermatologist in Portland, Or. She specializes in hair loss for women. I Just wanted to make sure that there were no real issues. I was hoping that it was all in my head. You see, I have always had extra thick curly hair. Stylists would tell me how lucky I was to have such thick curly hair. I would always say, “I wish I had straight hair”. Anyway- I decided that the shedding was not normal and the thinning didn’t seem normal. So, I decided I would go get checked out. I got checked once before and that was/is a bad memory and did not want to go through that again. I was 9 months pregnant and a Kaiser dermatologist said “You have Male Pattern Baldness disorder and it is hereditary”. He just looked at me and not anything else, no special scope was used or hair strand tested. I was in his office for 10 min. I went home and cried. I told my OBGYN at my next appointment and she said it was from the hormones and since I was about to have a baby that this sometimes happens and I should expect my old hair back. I did accepted it and then my hair was fine again (my hair did go straight while I was pregnant). Well that was in 2001. Now it is happening again and I had my last and final son in 2003.

So, 2 years ago I noticed my hair starting to shed again or thin a bit. I was kinda glad that my extra thick hair decided to become a little less thick and much more manageble. Then it kept thinning and I thought. ” Hmmm- what if this doesn’t stop?” Then I thought that everything would be fine and not to think about it. Then this past summer it started to shed and just thin and my scalp itched. I didn’t want to think about it. Except for I did think about it, every time I had to try to style my hair or get ready to go meet a client or go meet with consultants.

Oh no- it was now much harder and harder to style my hair like I usually do. Oh S–t! What am I going to do if this does not stop? I thought, I am not my hair. I am not my hair …I am more. [click to continue…]

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