androgenetic alopecia

So I’m sure many ladies have already run up against the issue of having difficulty in getting Aldactone (brand name for Spironolactone) prescribed to them. Not all doctors are aware that this drug is used to treat androgenetic alopecia, and most of the ones I have met refuse to prescribe it at all, or in a dosage sufficient to actually potentially be of any help.

After a recent visit to a local dermatologist I left feeling smaller than slug, completely deflated, misunderstood and humiliated. My current prescribing physician is not local, and I was hoping to find someone close to home that would provide me with the prescription I need to help keep my hair from falling out of my head.

A few months ago my fiance went to a local dermatologist, and while there he thought to ask if he prescribes Aldactone to female patients with hair loss.  The doctor stated a resounding “Yes,” and seemed to be fully aware of the potential benefits of it for hair loss and for hirsutism. So knowing this, I make a visit there in the hopes of leaving with a prescription for 200mg (100mg/ 2x day) of Aldactone, that is after all what I currently take. I even went to the appointment armed with my existing prescription bottle to prove that I am in fact currently taking this.

To make a long story short, the nurse and the doctor were completely shocked at the dosage, telling me “That is way too much!” and that they only prescribe 25mg, or tops 50mg. What? They then proceeded to ask me if I’ve ever had any blood work to determine what is causing my hair loss. Well gosh darn, why didn’t I ever think of that? I’ve only had every blood test known to man done a 100 times over. The doctor then continues to tell me that this is the culprit of my dry skin, when in reality I’ve had eczema and dry skin my entire life. I try and explain my situation, my 11 years of hair loss and that for 10 of those I’ve been taking Aldactone and that ceasing to take it now would cause a tremendous hair shedding, and at the thinness where it is now, that would leave me with basically no hair. I’m the first to admit that I don’t like taking this drug, I hate it, in fact I’ve written on numerous occasions that I feel like a prisoner to it. My saving grace is knowing that once I make the choice to wear a bonded lace hair system that I’ll ditch the meds and be done with it, but that time isn’t now.

The doctor then suggested we try 100mg. 100mg? I let the doctor know at that dosage my hair will shed. How do I know this? Last year I tried to wean myself off the Aldactone and guess what? My hair shed.. a lot. I guess I probably looked super pathetic and desperate in that doctor’s room since he decided to go ahead and have the nurse write me a prescription for it. The doctor leaves and a short while later the nurse who is in the room with me still, says “I don’t care what you say, you have to get off that, it’s not good for you” and she didn’t say it in a caring way, it was a stern rude way. Of course this is coming from the woman who is probably in her 50’s and has never lost a hair in her life. How easy to judge when you sit there with a full head of perfectly coifed hair. And my favorite part of the whole conversation comes next, she then says to me, “Well, what do you think is causing your hair loss?” Yes you read that right, that is exactly what she asked me in her cold harsh way. Well lets see, hummmm bad genetics? the Loestrin FE pill? A curse? You take your pick. I just told her it’s genetic, that’s it, nothing more to it. I can treat it, glue it, or let it fall out. Those are my options.

I could feel my face getting red, and my eyes feeling like the ocean was about to pour out of them. I couldn’t get out of there fast enough, once I got to my car I burst out into hysterical tears.

That day was just another reminder of how much suffering hair loss has caused me, it’s not bad enough that this is happening, but I have constantly been confronted with doctors that have no compassion or understanding and who fail to do one simple thing… LISTEN. On multiple occassions I have asked the various doctors I have seen to prescribe me the Aldactone and they all look at me like I was asking them for crack. Actually it probably would have elicited less of a reaction if I’d asked for crack. The doctors are usually aghast that I would be taking such a dosage, their reactions make me feel like I am taking arsenic.

Anyways this rant is something I had to get off my chest. I would love to get a list of doctors together that do prescribe Aldactone at the higher dosage levels of 100mg – 200mg / day. Does your doctor prescribe it? If so, please share the name and location of your doctor because I know I am not alone in my struggles to find a doctor that can support my hair loss treatment decisions without making me feel like a piece of garbage in the process.

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Bonnie has been a member of The Women’s Hair Loss Project since Nov. 2008. Yesterday she wrote the most incredible blog in the network, declaring victory in her war with hair loss. Myself and so many others are beyond thrilled over her recent news. So with her permission, I am posting it here for everyone to read.

Here is the post:

I’ve been thinking about writing this blog for a long time, hoping that my success with regrowth would continue and that I would have great news to share. It’s weird but I guess I was sort of waiting it out to make sure I wasn’t hallucinating or waiting for the other shoe to drop… the universe saying HAHA! and my hair to start falling out again, but I think I can now say that I feel like I’m in the clear. I think I have finally won this war. Wow.

It’s been such a challenging year and half with all of this and I still cant imagine how uncluttered my brain must have been before all of this happened. It has been such a life-changing thing that it’s VERY hard to get past it. I know all of you understand this.

Slowly, slowly, since I shaved my head on 6/1, things have been improving. My shedding stopped a couple of weeks after the buzz (I stopped Spiro the same day) and it began filling in little by little. I really had some particularly thin spots and used A LOT of Toppik for a while, but I slowly stopped using that, quit the Xanax (I do not know how I would have gotten through 2009 without Xanax!), kept going with my supplements (fish oil, flax oil, vitamins and iron) and tried to exercise real patience and it has actually worked. My thin spots have slowly filled in and they KEEP filling in and I dare say that I think my hair is back to normal. Sigh and a big deep breath! For the first time in a very long time, I can now actually say that my hair looks good. it has taken me a LONG time to be able to say that and mean it.

I am still a product junkie (maybe now more than ever) and I still take detours by every mirror to check my hair out a zillion times a day. I think I will probably always.

I’m ready for a cleansing ritual for getting past this. Today I am going to go back to the wig salon and ask them about donating the beautiful wig that I bought there (and never actually wore) and maybe even the Gremlin wig too if they’ll take it. Yeah, the pictures of that are scary but KatKat did a perfectly AMAZING job of taming that beast. I’m going to see if I can donate the wig(s) to another woman that is suffering with hair loss and can’t afford to get something that will make her feel more comfortable.

I just wanted to update all of you. I have found such amazing support here and I truly cannot imagine how I would have gotten through this battle without WHLP. it has literally been a lifesaver for me.

I wish all of us more hair than we know what to do with (only on our heads). MUAH!

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Finding Peace, Strength and Friendship

by admin on January 24, 2010

As most everyone who frequents this network knows, I started this site in 2007 during one of my darkest and loneliest times. At that point, I had already been dealing with hair loss for 8 years, but things had taken a drastic downward turn and down I fell into the hole of isolation.

That was then.

Since that time I have had the chance to interact with so many women that have touched my life in such profound ways. I have discovered just how strong women really are, and I have learned so much.

By being able to unite women with hair loss, and helping them to find support and understanding, I have found just that for myself… understanding and support, and I no longer feel alone.  I have met a few women from the network, in California and New York, and each time it has been a truly wonderful and amazing experience.

I just wanted to say Thank You to Everyone. Thank you for helping me to find some inner peace, a strength I never thought existed, and friendship that is pure and true.

You have changed my life.

It’s a new dawn, it’s a new day, it’s a new life.. and I’m feeling good
~Nina Simone

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Hair Pieces Demystified – Q & A with Cara

by Cara on September 28, 2009

Many of you have expressed interest in hairpiece options and many have posed the same questions so bear with me as I attempt to provide some answers.

How Do I Know If a Topper or Full Wig Is Right For Me? What Are The Estimated Costs For Hair Replacement?

A topper will work if your remaining hair is in good condition on the sides and in the back. If you have diffuse thinning you should consider a full piece.  The costs of toppers will range anywhere from $450 to $1,500 and a full piece can fit into that range as well. The average cost of tapes or glue will be about fifteen dollars a month . There are so many materials these pieces can be made of. The advantage of a lace piece is that once it is pressed into tape or glue it will disappear into the skin providing a natural look that is ideal for those who do not want to wear bangs at all.

Can I Shower or Swim In a Bonded Hair Piece?

Yes, you can shower and swim in a bonded hairpiece. Most medical grade tapes and glues hold up just fine. If you know you will be swimming certain adhesives will hold up better than others and I’m happy to fill you in on all that if you are planning on doing so. As for showering…not a problem. It is a different feeling/experience when you first start showering in a hairpiece but you get used to it. Once you are out of the shower, it is very difficult to tell your hair isn’t real.  You style it just as you would your own. If you have hair underneath it may take a little extra time to dry it but that’s really as complicated as it gets.

Daily bonding with tape should take very little time  (5 minutes). For longer periods of bonding you will take more time of course, but the longest it should take is 45 minutes. It does take practice though.

What About The Bedroom?

As for the “mattress mambo” (sorry, but many of you asked)…yes it’s all good. Even on the wildest nights you should be fine:) if your hair is bonded. Again, it may take a bit to adjust to the feel of the hair, but trust me, you will feel one thousand times sexier with hair than how you do with thinning hair in my opinion. For those of you who rock the bald look, now that can be just as sexy though! Okay…enough of this subject, hope I didn’t offend anyone:)

Wearing a bonded piece to bed is a small adjustment as well, you will be aware that it’s there but you’ll get used to it quickly.

Waking up in the morning to a full head of hair is a great way to start your day!

Sleeping with it in a low ponytail is sometimes preferred. Sleeping on a satin or silk pillowcase will help reduce damage while sleeping also. [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

***************************

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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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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Questions About Spironolactone – Ame

by admin 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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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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Words That Hurt, Even When It Is UnintentionalYesterday 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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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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