Women’s Hair Loss Project

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. Continue reading…

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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. Continue reading…

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So I am starting to go through a bit of a shed once again. Still not terrible and much better than the last 2 years, but a shed none-the-less. Here is my lemon into lemonade update. As most everyone probably knows who has followed my story, I lowered my synthroid dosage awhile back since I felt it was contributing to my excessive shedding. The shedding slowed down dramatically and I’ve been trying to enjoy each day that I don’t see a gazillion hairs laying in the sink after a comb through.

It has been probably a couple weeks now where I’ve noticed my hair starting to shed more and more. But I’m still doing okay, why? Because the hairs that are shedding are full length, long and strong terminal hairs. This is such an improvement for me. In the midst of my most horrible shedding time, my hair would shed all different lengths of hairs, one inch long, two inch, four inch, six inch, 1/2 inch and some that even looked the size of arm hairs. That would depress me to no end because I felt my poor hairs were not getting even the slightest chance at a decent hair life cycle. They were exiting my scalp way too prematurely, so any new growth would just fall out. Shedding long hairs, while not pleasant either, means that my overall hair cycle is improving and stabilizing. I least that is how I have decided to interpret it! It keeps my mind healthy and strong, and allows me to continue on with my days. So whether it is true or not matters very little, all that matters is what my mind believes.

Be positive, be positive, be positive.

Also, just a reminder, tomorrow (Thursday April 10th) is our first women’s hair loss support chat meeting at 6:30pm - 7:30pm PST. If you are interested in joining us, sign up in advance for an account in the network. http://community.womenshairlossproject.com/

You’ll need to login to your account tomorrow at that time and click on the “Chat” link in the top navigation bar. Hope to see you there!

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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!

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I 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. Continue reading…

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Yesterday I was talking to my mom on the phone and she was telling me about a little girl she saw at the store that reminded her of me as a kid. She said “the little girl had really really thick auburn hair, lots and lots of hair, very long and pretty.” She also reminded me how I used to lay my head on her lap and she would brush my long thick hair. *sigh* That is certainly a harmless comment, except I no longer have that super thick hair, and haven’t for quite sometime, so it still hurt me and brought me down ever so briefly. I used to have that insanely thick hair, even as a 3 year old my bangs were thicker than all of the hair I have today. Oddly enough at around age 3 I had red hair even though there are no red heads in my family. That color changed over the years, until I dyed it fire engine red when I was 18. I’m glad I did that and enjoyed my hair during the those years. Looking back at old pictures of my firey red hair, I feel sadness and loss, but I take a deep breath and say “that is then, this is now, moving forward.”

I’m a different person today because of my hair loss, I’m more understanding, compassionate, non judgmental and more patient. I’ve pondered the meaning of beauty and of strength. I’ve come to realize I can’t control everything, but what I can control is my outlook, and how I let “uncontrollable” things affect me. It’s a work in progress

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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. Continue reading…

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The other day I posted the listing of certain birth control pills androgen index which I found on The American Hair Loss Association website. Later that day I received an email from Gracie pointing me to a great resource that provides more in depth knowledge about the hormonal components of various birth control pills. She also mentioned that in her own research she found out that most women seem to have more problems on lower estrogen pills, i.e. 20mg. I didn’t ask, but I think she meant mcgm (micrograms). Glancing over at the list I am about to provide you with, I found that the pill I took, Loestrin FE is among the lowest estrogen pills, listing at 20mcgm along with Aleese, Levlite, Micrette, and Ortho Evra patch. The pill I take now, Ortho-Tri Cyclen is 35/35/35 mcgm with a different type of Progestin (norgestimate) than the one used for Loestrin (norethindrone acetate).

The pills listed as likely to cause worse acne and hair growth side effects (obviously not hair on the head, but perhaps your chin) are those pills high in androgenicity and low in estrogen content.

Such pills might include:
Loestrin® 1.5/30
Loestrin® 1/20 Fe
Estrostep® Fe
Levlen®
Alesse®
Ovral®
Norlestrin® 1/50
Continue reading…

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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.

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One of our members in the network wrote a blog post about being proactive and wrote that she was recommended the book “The Power of Now” by Ekhart Tolle. Another member emailed me and told me the book made a huge difference in her life as well. That is enough convincing for me, I will definitely be ordering myself a copy from Amazon.com. I just looked it up and this is what is says about the book:

Ekhart Tolle’s message is simple: living in the now is the truest path to happiness and enlightenment. And while this message may not seem stunningly original or fresh, Tolle’s clear writing, supportive voice, and enthusiasm make this an excellent manual for anyone who’s ever wondered what exactly “living in the now” means. Foremost, Tolle is a world-class teacher, able to explain complicated concepts in concrete language. More importantly, within a chapter of reading this book, readers are already holding the world in a different container–more conscious of how thoughts and emotions get in the way of their ability to live in genuine peace and happiness.

I noticed this author has a written a bunch of other books that look quite interesting as well, so I guess I’ll be doing a little shopping today :)  Thanks for the tip Tracy and Chari!

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