Women’s Hair Loss Project

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.

First 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. (more…)

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.

I 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. (more…)

So 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

*******************
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. (more…)

I’ve finally set up the time to have our first Women’s Hair Loss Support Chat. The date is Thursday April 10, 2008 at 6:30pm -7:30pm PST. I’m hoping that this time and date works out for the women who are interested in participating.  I am very much looking forward to getting to chat and interact real time with the women of The Women’s Hair Loss Project so stop by to say hi! I will do my best to answer any hair loss questions you may have, and of course share with you my experience with various hair loss treatments.

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!

A Blog Post By Kathyloulu

One New Year’s Eve a few years ago we had some friends over for a little get together. After one of our friends described how she had been upset over a comment that was made to her and how her husband responded in the “wrong” way, we joked that we should establish and website and 1-800 number to help men with what they should say to their wives in difficult situations. We decided we should call it: 1-800-HELP-MEN or 1800helpmen.com

So… if the man in your life were to call this hypothetical hotline, I’d give him this 12-step program to help him help you deal with your hair loss — and to help them know the correct “wig etiquette.” Even if your partner is not a man, much of the program still applies. Read on…

1) Acknowledge that she is losing her hair. Don’t pretend that she looks the same because she knows she doesn’t and she needs your support and encouragement. However, just as with every other “appearance issue,” use discretion in how you give an honest answer. For example, she might say, “Do I look weird?” And you might think that a simple “Yes” or “no” will do. Might I recommend that you use a few more, but carefully-selected, words? Try this, “Honey, I fell in love with you, not your hair, and I think you are so strong for the way you are dealing with this.” See? You didn’t even have to actually answer her question, but instead validated her real underlying need to know that she is OK and that you are OK with her.

2) Tell her that you love her no matter how she looks. Tell her often and in a variety of ways. Here are some ideas: notes, cards, phone calls, favors, whispers, kisses, sex, gifts, etc. – but not necessarily listed in order of importance. Note on the sex thing… If she is having self-esteem issues with her hair loss (which most of us do), let her turn the lights off if that makes her more comfortable. Whatever your normal routine is in that regard – lights on or lights off, or, heck, hair on or off – let her make the call as to what she is most comfortable with. Personally, I have a hard time with this because I generally take off my wig, but then I’m distracted when Eric looks at me because I think that “how can he make love to me when I look like this?” Of course, I am also aware that once a man is in bed with a naked woman, her hair is way down on the list of things he’s interested in. (more…)

I get a lot of emails regarding the specific androgen index of birth control pills. I haven’t found the full and complete definitive list available online, however, the American Hair Loss Association lists a small number of pills from lowest androgen index to highest. The list is as follows:

Desogen, Ortho-Cept, Ortho-Cyclen, Ortho Tri-Cyclen, Micronor, Nor-Q D, Ovcon-35, Brevicon/Modicon, Ortho Norvum 7/7/7, Ortho Novum 10-11, Tri-Norinyl, Norinyl and Ortho 1/35, Demulen 1/35, Triphasil/Tri-Levien, Nordette, Lo/Ovral, Ovrette, Ovral, Loestrin1/20, Loestrin 1.5/30.

Of course very last you’ll see Loestrin listed has one of the highest androgen pills. It wasn’t until recently it all clicked, loestrin sounds like LOW ESTROGEN. That is the pill of doom that I took that started this whole hair loss process for me. I suppose it is all luck of the draw. Many women have probably taken that pill and never had the hair loss troubles I have been dealing with for the past 8 years. But there is no denying the hair loss birth control pill connection, messing with hormones can results in some unpleasant occurrences. Depending on the doctor, some will openly admit that hair loss can occur from taking the pill, others will dismiss it as merely coincidence. The packet insert of all the pills that I have seen clearly state it as a possible side effect. Women of all ages need to be aware of this before considering taking any pill, don’t expect to hear that little tid bit of information from the doctor prescribing it to you.

Low androgen birth control pills are also commonly prescribed with the anti androgen spironolactone as a treatment for women losing their hair.

I would love to find a complete listing of all birth control pills and their androgen index. If anyone knows of any please send me an email so I can post it on the site.

Just 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. (more…)

The 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. (more…)