I’m 19 Years Old and Have Suffered Major Hair Loss and Thinning – Linda’s Story

by Y on August 28, 2008

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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Hair Envy – A Female Hair Loss Nightmare

by Y on August 12, 2008

So I just read a story on The Bald Truth website that sparked a touchy nerve for myself. The guy wrote he had “hair envy.” Oh my, how I can very much relate. I find I’ve lost countless seconds, minutes and hours of my life lusting after other women’s hair. If I ever witness a crime, I won’t be able to offer much other than a complete description of every hair follicle, of each woman who was in the room. Color, length, density, soft, dry… whatever, you name and I’ve taken note of it.

I am frequently absent from conversations of the company I am around because I’m too busy having wandering eyes for women’s hair. In the past it wasn’t uncommon for an entire day to be ruined because I saw what appeared to be a 90 year old woman with crazy, rich, silver, thick hair that could surely land her smack right in the middle of a Pantene commercial. How unfair! I started losing my hair at 21 and she STILL has ALL her hair. But as my mom always used to say “Life isn’t fair.” How true. Nine years of hair loss has shown me how unfair life can be to people, and I am talking about more than hair. Mental note to self… I got a raw deal, no two ways about it, no one should ever lose their hair at 21 or 30 or 40 for that matter. But, be thankful that I have my health, a wonderful partner, a great family and a pretty darn good life aside from this “hair thing.”

I never appreciated my thick hair when I had it, I wish I had. Everything we have can technically be “on loan” so we have to try so hard, even on those days when the shedding has us scraping the floor, to appreciate what we have today. I am reminded of the song “Everybody’s Free” by Baz Luhrmann. In the song he says, “Don’t worry about the future. Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4 p.m. on some idle Tuesday.” and then he goes on to say “Do one thing every day that scares you.” and I’m thinking, uh I DO.. I SHOWER and COMB what’s left of my hair. 🙂

Just for kicks, here is the video of the song “Everybody’s Free!”

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Thyroid Hair Loss Success Story

by Y on August 11, 2008

This Story was sent in by Angel, you can visit her profile page on the network here.

Hi. I wanted to share my story. It may help someone else. I had my fourth child in April 2007. I had a major hair fall after stopping breastfeeding. At some point after that it really started thinning, but I guess I really didn’t notice until my mother made mention of it. I started back on Desogen (low androgenic) pill for about 3 months and my hair fall was normal. I then had decided I no longer wanted to use synthetic hormones and stopped. After that, my hair starting falling out in droves. I went to an internist to have my thyroid checked. I was told that all my labwork was normal. I would just find myself in tears some days b/c it just wouldn’t stop. One day, I was speaking with a friend of mine who has been a raw food dieter for about 10 years. She had been having some problems with her skin and told me that she had been seeing a natural pharmacist. I made an appointment to see him one day (I also am a pharmacist). I went with my labwork and about 5 days worth of taking my oral temperature (regular thermometer) which averaged 97.4 degrees—optimal 98.8-99.2. My thyroid panel that my internist ran was only a TSH level and a total T4. He gave me a list of labs to have done at my second doctor’s office (my ob/gyn), which included Vitamin D, B12, DHEA-S, Free T3 and Free T4. The pharmacist that day muscle tested me (sounds crazy, but it works!) and put me on a couple of supplements like Vit D, Iodine/Iodide and a couple of things for adrenals. His gut feeling was, even though my TSH was normal, my temperature was too low and for some reason my thyroid was not being utilized appropriately. (I also complained of fatigue and low libido). [click to continue…]

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My Life With Hair Loss

by Y 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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Women’s Hair Loss Support Chat Wed. July 9th 6:30pm-7:30pm PST

by Y on July 2, 2008

Hi everyone, I just wanted to announce that we will be holding a women’s hair loss support chat next Wednesday July 9, 2008 at 6:30pm – 7:30pm  PST

The chat will be taking place in our network. To to sign up for the event go to: http://community.womenshairlossproject.com and login to your account, or sign up for an account if you haven’t already (it only takes a minute and it’s of course free). Once you are logged in, click on “Events” in the top navigation toolbar, and then click on “Browse Events.” You will see “Women’s Hair Loss Support Chat” listed there.  Click on the link to view the event and the women who will be attending, you can then click on “attend this event” to add yourself to the group of women already participating.

Join the Women’s Hair Loss Support Chat to learn, share, and lend support to another woman with hair loss. Hope to see you there!

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Little Things That Make Me Sad

by Y on June 29, 2008

So I got an email today from a friend I sort of have lost touch with over this last year. This is a person I never confided to about my hair loss and the more severe and less able to hide that my hair loss got, the more I distanced myself. I make up reasons why I can’t get together, work this or that… and she just emailed putting out an open invitation out there to meet up with her and another friend I lost touch with as well. I just burst out into tears and started crying uncontrollably. I cried because of how I must make others feel by avoiding their invitations for get togethers, I must seem like a flake. I cried for my inability to tell them “this is why.” I know they’d understand but I don’t want to be scrutinized I don’t really want any questions and I just prefer to hide and keep to myself. I cry for myself, for the torment that hair loss has caused me, and for any pain it has caused me to most likely cause others by my actions.

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Synthroid & Hair Loss – Leah’s Story

by Y 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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Through Tears I Write My Hair Loss Struggles

by Y on June 8, 2008

As most of you have probably already noticed I haven’t written very much lately. I’ve just been sort of trying to refocus my energy to get through this really really tough time. As I write I have to pause as I cannot see the screen though all my tears that keep falling like water out of a facet. I cannot be certain as to why I am going through another very bad shed, I should know by now that I probably should just stop asking why and move on.

For the most part I get through my day, but with a sadness and awareness each time I touch my head or see my reflection. I avoid all mirrors even the ones in grocery stores. I run past store windows for fear I’ll catch that glimpse that will ruin my day. That is how I’ve worked to be able to main a quasi productive day and to live my life… avoid my reflection, turn off the bathroom lights before entering, wear my hair up in a ponytail type bun so that I do not feel the lack of hair I have and to avoid having to be reminded every second of the day that I’m losing my hair as another strand falls on my arm, shoulders or back.

I just took a shower and washed my hair, it pretty much is dried already by the time I take a comb to it, thats how thin it is now. I comb through, saying any words of comfort to myself, a prayer, the alphabet, anything to keep myself busy while I get through the toughest part of my day. The hair falls out so easy like gobs of spaghetti. I consider taking the razor to my head right then and there and just being done with it, but I decide against it for the moment. I’m usually much stronger than this when dealing with my hair but I’ve felt so sad and weak lately. I remind myself it is only hair, and if this is the worst thing that ever happens to me then I probably should consider myself lucky. I feel so sad right now, a heaviness that just sits on me. It’s 4:35pm do you think it is too early for a glass of wine? 🙂 I think not.

P.S. Forgive me if you’ve written to me and I have not answered yet, I will definitely get back to you. I’m just trying to piece myself back together right now.

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More About Spironolactone – Success Story

by Y on May 7, 2008

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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Questions About Spironolactone – Ame

by Y on April 15, 2008

Questions About Spironolactone - AmeSo I went to a new derm, who diagnosed me with telogen efluvium AND androgenetic alopecia, for which he is going to prescribe me Spiro (sorry can’t spell the full name) and Minoxidil, however I told him about my misfortune with taking Minoxidil previously and he said well then just take the Spiro, 50mg (IMO I need 200, because I have less than a fifth of my original hair left). I appreciate that there is already a lot of info in this site with regards to Spiro, but can anyone specifically answer me these questions please?

1. Providing that it helped at all, how long did it take before it started
to work?
2. How well did it work/is it working?
3. Were there any unpleasant side effects?

Thanks
Ame

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Hi Ame,

I do take 200mg Aldactone (brand name for Spironolactone) so I can speak from my own experience having been taking it for about 8 years now. I think the easiest of the three questions for me to answer is the last one. The only side effect I noticed from taking the drug was that I seemed to get a little light headed, especially when I would stand up from a chair. The doctor told me that could be related to perhaps not enough sodium in my diet. Since Spironolactone is also a diuretic you do loose extra electrolytes since you go to the bathroom more frequently. I found that eating a pickle or sucking on a ketchup packet would instantly make me feel better. Actually as I am typing this I do remember being tired a lot as well, but taking in that extra sodium seemed to always do the trick and bring me back to life again. I speak in the past tense because I no longer experience any of these side effects and haven’t for many years. [click to continue…]

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