hair loss

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

*******************
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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Women’s Hair Loss Support Chat Thursday April 10th 6:30 – 7:30 PST

by Y on April 4, 2008

Women's Hair Loss Support Chat Thursday April 10th 6:30pm - 7:30pm PSTI’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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1-800-HELP-MEN — to help your man help you!

by Y on March 28, 2008

1-800-Help-Men -- To help your man help you!

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. [click to continue…]

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American Hair Loss Association Androgen Index List of Birth Control Pills

by Y on March 24, 2008

American Hair Loss Association Androgen Index List of Birth Control PillsI 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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Kewpie’s Hair Loss Story

by Y 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 Y 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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Test Your Hormones When YOU Want – The Canary Club

by Y on March 14, 2008

Test Your Hormones When YOU wantI cannot believe I have not written about this before. So many women want to be able to test their hormones for imbalances, but either cannot get their doctor to do it, or cannot get it does as frequently as they would like. There is an online service called The Canary Club which provides at home saliva test kits to test for specific hormones. I was recommended this site by a thyroid doctor I had a phone consultation with, Dr. Richard Shames. Who by the way, was a wonderful, caring and understanding doctor. Sort of a rarity these days. I had consulted with him over my suspicions that my dosage of synthroid could be causing my extremely exacerbated state of hair loss far beyond my androgenetic alopecia. After looking over my previous test results he told me it would be fine to go back down to the dosage I was doing best on, which was 88mcg and that is the dosage I am on today. I am doing MUCH better at this level as opposed to the 112mcg.

I ordered the test from the company and it arrived shortly after. However, I still have not done the test, it has been sitting on my desk for quite some time now. I seem to never remember to take it during the times they specify, which they state in the instructions “Menstruating women should do this saliva sample testing on day nineteen, twenty or twenty-one of their cycle. Day one is the first day you notice bleeding” and I also drink coffee every morning which kills that day as a test day.

The test comes with a whole list of instructions on what to avoid on the day of the test.

Do Not Eat: chocolate, onion, garlic, cabbage, cauliflower/broccoli.

Do Not Drink: coffee, tea, or caffeinated drinks (ex.coke, guarana)

Do Not Use: sublingual hormones or troches as of the night before collection. Avoid antacids, bismuth medications or mouth washes.

According to my order panel form, it tests for: Progesterone, Testosterone, Estradiol, Cortisol 6am-8am, cortisol 11am-noon, cortisol 4pm-5pm, cortisol 10pm- midnight, DHEA+DHEA(s) pool, Free T4, Free T3, TSH, and Thyroid Antiboides [click to continue…]

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The First Time – Seeing a Women With Male Pattern Hair Loss

by Y on March 4, 2008

Seeing A Woman With Male Pattern Hair Loss For The First Time A Blog Post By Dottie

Last week … for the very first time… I saw a women with male pattern baldness. Not just the diffuse all over loss that I am used to seeing, but completely bald on top with hair on the side and in the back (just like those Propecia commericals on You Tube). The lady was probably in her late 60s with gray hair. The surprising thing for me was that the hair she had on the sides and back was still quite thick! I was impressed by the fact that she was out in public without a wig or hair covering of any type. This wasn’t a woman who doesn’t care about her appearance because she had taken the time to put on her makeup and dress nicely.She passed by me so quickly that I only had time to register her hair loss and glance at her face before she was gone. After she was out of my line of vision I actually found myself wondering if she could possibly be a cross dresser or transsexual. My mind simply could not wrap itself around the idea that a woman could really have that type of hair loss.I know that this lady was not in my line of vision long enough that looking at her could have been considered staring, but I know that if she had not walked away from me that I would have definitely tried to get a closer look. I like to think that I would have found something kind to say or some way to pay her a compliment.

I sometimes wish that I had little WomensHairLossProject business cards to hand to women I meet… but then I have to remind myself that many of these women might still be in a place that having someone notice their loss may be insulting. I feel as if this website has made me more open and accepting of my own hair loss. I think I should remind myself more frequently that not everyone is ready to discuss this condition openly with people they have never met ;o)

About the author: Dottie is a community member of the Women’s Hair loss Project. To learn more about her and read her other blog posts, visit her profile: http://community.womenshairlossproject.com/Dottie/

Here is one of those propecia commercials Dottie was making reference to.

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The Hair Loss Crystal Ball

by Y on March 2, 2008

The Hair Loss Crystal BallIf you had a test that would tell you with some degree of certainty whether or not you were destined to lose your hair, would you take it? We don’t really have to make that decision because it isn’t available for women, however, men now have that choice. There has been much buzz surrounding the new genetic test called, “Hair DX.” According to their website, ” HairDX reports about a genetic variant found in more than 95% of bald men. Scientists found that people with this genetic variant are at 60% risk of going bald by the age of 40. HairDX also reports about a less common genetic variant of the same gene, that if present indicates a greater than 85% likelihood of not going bald before the age of 40. ”

The at home genetic test is like a hair loss crystal ball, a $149 crystal ball. I imagine there will be at least some men that are not going to want to take the test, probably likening it to the drastic comparison of knowing the date of your own death, but there is real value in a test like this. The first benefit that comes to mind is that it would probably shorten the denial phase, and allow men to take hair loss treatment action earlier rather than waiting years and years.

The HairDx genetic test is not currently available for women and who knows if it will ever be. Most everyone probably already knows women’s hair loss is so much more complicated than that of men. I also think that there isn’t enough research being done about female hair loss. Perhaps it isn’t perceived as being that big of a deal or perhaps the fault lies in lack of awareness. The reality is that this is a very real devastating problem that millions of women are forced to deal and live with in their lives. [click to continue…]

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