female pattern baldness

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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I’ve always been a private person, definitely more of an introverted personality. I find happiness and solace just being all by myself, never really feeling the need to have to be out and about and socializing. Well, hair loss added to that in a negative way. What once felt like a personal preference now seemed like a prerequisite to my life… solitude and isolation.

There were two monumental, emotionally catastrophic times caused by my hair loss. One was when this began in 1999, and the other crash came in 2007. I was losing my hair the whole time and having bouts of depression the whole way through, but those points mark times where I just sat constantly feeling helpless and completely without any motivation to live life. It’s definitely no coincidence that I created this site in 2007, it was an extremely sad time for me, and if you read my earlier posts you will likely feel the sadness and pain I was going through. I was withdrawn, I submerged myself into the comfort of my keyboard and I began to pour my heart out onto electronic paper. The more I typed, the more I shared, the more I started to feel better. Sharing is incredibly healing; I say it all the time.

During this time, I started to avoid my friends; I was ashamed of how much worse my hair was starting to look. It was thin before, but after having experienced a nonstop massive shedding from the 2 years prior, it was now a complete hopeless mess, and seemingly progressing each day. I didn’t want anyone to see me this way. I hid. In every sense of the word. I hid. I started avoiding phone calls, text messages and even started to skip the “reply” part of an email I would receive. It was just easier to push that part away (socializing) and focus on communicating and writing to women I met online, women who I knew understood what I was going through, that felt a whole lot safer.

As time passed I started to feel guilty for abandoning the friendships, and I started to feel empty.  I was saddened that I had pushed everyone away just so I wouldn’t have to share my secret and have them see me a way that I didn’t even want to see myself.

I wanted to reconnect, but how? So much time has passed. What do you say? Where do you pick up? “Hi, how are you… I’ve been balding for over a decade and it’s made me miserably depressed, sorry I didn’t call you back,” that just didn’t have the flow or direction I was hoping for.

I wrote emails, apologizing and explaining what has transpired in my life, or more appropriately put… what took over my life. I went out to lunch with someone else, and burst into tears over my jambalaya. I was scared, I felt vulnerable, but I was received with such love and understanding. I wasn’t judged. All that I had built up in my head of how no one would understand, was really just in my head. I also think when you share such a deeply personal part of your life with others; it can deepen and grow your friendship.

Make no mistake, this is still very much a secret of my life, but I told a few people I very much care about, and I don’t regret it. I know in writing with lots of women on this site, that others have also lost touch with their friends, and in some cases family, and I want to tell you… Your friends, your REAL friends, are still there, waiting for you to reach out. If you want to reconnect, make the choice, and decide how you feel most comfortable – phone, in person, email, telegram :) and do it.

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It’s been quite some time since I’ve written a blog post. Now all at once I have several things I want to write about, but I’ll separate them into different posts, and play catch up that way.

Something I find myself confronted with from time to time, is balancing the things and activities in my life that I deem to be normal, with the reality of how my hair loss colors almost every situation.

Examples

A Run Is Not Just a Run

Running… turns out I love to run! Over the last few months as my asthma was improving I took to the streets with my running shoes and started pounding the pavement (quite literally) and realized, hog diggity dog, I LOVE RUNNING. I’m a slow runner, and I do have asthma, but I love it just the same. What I don’t love is being outdoors with sweat pouring out of my head highlighting how thin my hair really CAN look. So my solution is wearing a nike running headband, which is excellent at absorbing sweat and hiding the hairline and top of head. I also use a wide array of different sporty adidas and nike caps. I guess hair loss has caused me to be a tad bit more stylish out of necessity. :) I’d love to run sans anything on my head from time to time, but I wouldn’t be feeling the wind blowing through my hair, it would be more of a draft penetrating my scalp. So, no thanks.

Dinner Is Not Just Dinner

I’ve danced around tables at restaurants, playing musical chairs, grabbing the one that has the least overhead lighting. I’ve nearly knocked over waiters diving for the chosen one, the one that will least likely show to others that I’m losing my hair. I’ve enlisted my fiancé in this process as well, so he’s on the hunt for picking me a good one too, always asking me if I’m okay with the seat. I’ve changed tables at restaurants several times over, looking like a nut, because each table seemingly had more overhead light than the one prior. It’s dinner, it should be dark… really dark, like I want someone to put a flashlight to my menu. Ha ha.

Buying Clothes Is An Exercise In Visual Discipline

I’ve perfected the art of trying on clothes in dressing rooms without actually looking at my face. Neck down only. Unless it’s the Gap, god bless the Gap, whoever designed their dressing rooms definitely has hair loss.
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The list can go on and on, but I suppose my point is, in time we learn to adapt. In an effort to maintain our sanity, our minds adjust to a new “normal.” We have to adapt and learn to work with the hand we have been dealt. I know in time my hair loss cards will include glue, tape, a hair piece, and possibly a razor, but I’m not there just yet. When I am, it will take time to adjust, as every step always has, but history has taught me that we are so much stronger than we give ourselves credit for, and I’ll be okay. Make no mistake, I still get sad, I still have my down days, I shed more today than I have been lately, and it all does affect me… but the length of time it affects me is so much shorter, my turn over period is much quicker. Thank Goodness!

Several things have happened since I last wrote, including a 3rd trip to see Dr. Greco for PRP therapy, I’ll be writing about all that soon.

I wish you all a wonderful and beautiful Sunday! Get out there and live your life, don’t let your hair loss rob you of that. Make adjustments as necessary, there will always be those for sure, but after pretty much losing out on my entire 20’s I want to encourage others to not make that same mistake. Those years, I’ll never get back.

Cheers to moving forward ( I have my glass of wine, do you have yours?)

XOXO

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My Life With Hair Loss

by admin 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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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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Yesterday I woke up with pain on my scalp, a soreness I hadn’t felt for quite sometime. I know what it’s called, Trichodyia. I dread it because in my experience it always seems to correlate with a impending hair shed. I’ve been doing okay so far, since I’ve reduced my synthyroid dosage and my hair loss has improved and seems more stable. But now this, why now? I certainly don’t tie my hair tight in a ponytail, it always fairly loose because if it’s tight I can feel every single follicle tugging. Why now? Even though nothing has changed today and yesterday, I just feel a great sadness. The thought of the possibility of enduring yet another shed brings me to tears. I’ve been in hazy lack luster state since this began, paralyzed by fear thinking I won’t be strong enough to take anymore… my hair can’t take anymore. I feel like I’m one shed away from being entirely bald. Eight years of dealing with this, I know that isn’t true, I know even with all the shedding I somehow manage to make it through and get by, but I still feel the sadness and the pain. I type this though tear obscured eyes. The possible impending shed isn’t even here and may never come yet the pain on the scalp was enough to made me incredibly sad. Like any other conditioned response, my hair loss as conditioned me to feel pain and sadness.~Y

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So Sorry That I Took My Hair For Granted - Amber's Hair Loss StoryHello Everyone. I am so happy to know that I am not alone in my hair loss devastation. I am a 28 year old mother of four. I’ve been experiencing heavy hair loss and extreme changes in the texture of my hair since the pregnancy with my daughter 5 years ago. Much to my dismay, my doctors were telling me that I was pulling my hair back too often or that my hormones just needed to get back to normal or that the straightening process I had done had caused the loss. So for five years I have watched my very thick, very curly hair become thin and straight thinking that one day it would magically reappear. It was two weeks ago that I had a scalp biopsy and was diagnosed with andogenetic alopecia. To boot, I am losing it from all over my head, not just the top. My dermatologist is pretty cruel and just chuckled and said “There’s nothing you can really do. Use Rogaine.” I am devastated. My daughter has hair just like mine used to be and I’m actually jealous of her. I’m debating whether to have the fifth child that my husband and I wanted but I don’t want to spark any excess shedding episodes. I have started Rogaine as it is the only FDA approved medication for women but I am feeling very lightheaded and somewhat dizzy so I’ll probably have to stop. I realize like many of you that this has quickly become an obsession. I know that I am not my hair. But let me tell you, after four children, my body is beat. My hair is the only attribute I have left and I’m losing that now too. I’m at an incredible loss. I can’t imagine what it will look like when I’m 40. Please give me any feedback you can and I hope this post helps someone feel not so alone as this site has helped me tremendously.
Thank you,
Amber

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Dear Amber,

You are not alone in your feelings and struggles. I wish I knew why most doctors are so insensitive and callus toward the women who seek out help for their hair loss. I can’t explain why they do it, but it is an unfortunate very common occurrence. Was your dermatologist by any chance a man? They seem to be the least understanding.Just like the birth control pills can somethings kick in the onset of androgenetic alopecia early so can the hormone shift of having children, sometimes there is just no rhyme or reason, but undoubtedly we are never prepared. There are other “treatments” used to treat women’s hair loss such as low androgen index birth control pills and aldactone (spironolactone). All hair loss treatments carry the risk of possibly igniting some extra shedding at first. It’s the whole, “has to get worse better it gets better type thing.” It’s all a very personal decision what a woman chooses to use to treat herself, and she has to fully understand the postives vs. the negatives. Hopefully in time there will be more studies done to figure out what exactly causes women’s hair loss and then with any luck a real solution for women’s hair loss will follow. [click to continue…]

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Desire To Be Bald - Gosia's Hair Loss StoryThe title may seem to be surprising.. but, actually, when analyzed accurately.. it is not. I have been an AGA sufferer for a few years now. and I AM SICK OF THIS SITUACION. What I want now is only “to have this situation solved one way or another. Either grow back or fall out completely. So that I can resolve it and move forward.” Based on my prior experience I know that grow back is impossible. You may say I gave up. Yes, I did. Because there is no point trying to fight with anenemy you don’t understand and one you are blind and deaf against. You will only go through better and worse times, being moody so that people around will not stand you anymore. Curing uncurable puts you in a perpetual state of false hope. You neither have decent hair nor a good replacement; You’re betwixt and between.I have had enough. Finished medical treatment and wait for so little hair to shave it off. Be beautiful for myself when totally bald. I can accept it. And being beautiful to people around who have no idea, when wearing the best available vacuum wig. Just hard times for me when the final hair loss comes. Wish me strength. I hope I manage.”I am literally a shell of my old self and I am quite frightened. Sometimes I just want to shave my head and get a full best quality undetectable wig so I don’t have to see anymore hair in the shower drain, sink, bathroom floor, back of my shirt, etc. I don’t want to have a partial replacement system on a clip, as it is just inconvenient.I don’t want to have a partial replacement system based on adhesives as I would never accept my looks with severe typical men’s baldness. I want to shave my head and become beautiful again. And I will.Nobody can understand me. But I do not care. This is only my life and my best times (I am 24)

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Dear Gosia,

Thank you so much for writing your story. Your thoughts are my thoughts. Your feelings are my feelings. On more occasions than I can count I have wished for there to be some finality to this never ending hair loss nightmare. Some closure…anything. I’ve felt the torture, the decline and slow death of my self esteem tear away minute by minute, day by day and year after year. You reach a point where you throw your hands up in the air and say “if I’m going to be bald then fine let it happen all now and let me get on with my life, because this strand by strand thing is eating me alive.” [click to continue…]

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Losing Hair At 27, My Hair Loss Story By SarahI started to notice a loss of hair density when I was 19 years old. At first, I thought it was because I moved to a dry climate, but after time passed, I realized that this was not the case. I had thick, natural curly, wavy hair when I was young. My hair loss has been very gradual, but I feel as though it has accelerated in the last three years. I don’t notice my part getting bigger I just feel loss of density all over my head. I’ve been to three dermatologists and have taken all the tests. Everything comes back normal except for my iron. (Side note: I was diagnosed with anemia back in 2002 and went on iron supplements back then.) My dermatologist advised me to go on iron supplements and spirnolactone. She said I won’t notice a difference in hair density for at least a year after taking the supplements. So far, it has been almost 4 months since I started taking the iron supplements and I haven’t noticed a difference. I don’t shed as much during the day or while I take a shower. However, I lose a lot of hair when I brush. I’d say 150+ hairs. She said that if the iron doesn’t work, that I probably have androgenetic alopecia and because I’m losing hair all over my head, hair replacement surgery is not an option. I haven’t had a scalp biopsy done. I’d like to, but my dermatologist didn’t think it was necessary.

I feel I should also mention my family history. My mother has a full head of hair and she is 63. My dad is just now at age 62, losing his hair, but it could be due to his thyroid condition. My bother is losing hair and he is 33. My grandmother on my mom’s side has hair, my grandfather, however had hair loss. My grandmother on my dad’s side had thin, fine hair, but my dad said he couldn’t recall seeing her scalp. My other grandfather had a full head of hair. So, hair loss is in my family.

With all this said, I’ve gone through a wave of emotions. [click to continue…]

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What Can Women Do To Stop Hair Loss - Dr. Judith ReichmanAn article came out today on MSNBC.com discussing women’s hair loss. I think the article provides a good overview of hair loss so I’m posting it here. The question asked to Today Show medical contributor, Dr. Judith Reichman was, “I’m in my early 40s and I’ve noticed sudden hair loss. I’m devastated. Why is this happening and what can I do?” (The original article can be found here) Here is her reply:

Women don’t expect to lose their hair (unlike men), so when it happens it’s extraordinarily traumatic. We normally have, on average, 100,000 hairs on our scalp. And as evinced by our changing hair lengths, roots and visits to our hairdressers, those hairs grow; in fact, 90 percent of our hair is actively growing at any given time. Hair is the second fastest growing tissue in our body after (I’d love for you to guess) … bone marrow. To keep its place on your head, your hair needs the right conditions. (Note I didn’t say conditioner.) You may find that you’re unexpectedly losing hair if you impose restrictions on hair growth or if your genes are such that continued hair growth is not in your destiny.

There’s a simple test you can do to help determine whether you are losing hair, it’s just thinning or you are damaging it by abusive hair products or pulling it too tight (which can occur with braiding). Pull on several strands of your hair — do they come out easily at the root? If so, it suggests that the hairs are indeed “shedding” and have gone into what we call an excess telogen phase.

To explain this telogen phenomenon, I must first go into hair physiology 101. As hair actively grows, it’s in the anagen phase. Each hair is connected to a hair shaft (or follicle), which remains in its secure position in the scalp for three to seven years before falling out and being replaced by a new follicle. Once the anagen phase naturally runs its course, there’s a two-week catagen phase, in which the hair follicle dies. The hair then goes into the telogen phase for the next three months, during which time it falls out. Normally we lose 100 telogen hairs a day, but in certain cases (and this sounds like your situation), many, if not most, of the hairs go into the telogen phase. This causes alopecia (balding). The condition of overwhelming telogen loss is termed telogen effluvium; the anagen to telogen ratio has gone from its normal 90:10 to 70:30 or less. If I do the math correctly, this means you lose at least 300 hairs a day, compared to 100 hairs. [click to continue…]

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