Women’s Hair Loss Project

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

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Hi Ame,

I do take 200mg Aldactone (brand name for Spironolactone) so I can speak from my own experience having been taking it for about 8 years now. I think the easiest of the three questions for me to answer is the last one. The only side effect I noticed from taking the drug was that I seemed to get a little light headed, especially when I would stand up from a chair. The doctor told me that could be related to perhaps not enough sodium in my diet. Since Spironolactone is also a diuretic you do loose extra electrolytes since you go to the bathroom more frequently. I found that eating a pickle or sucking on a ketchup packet would instantly make me feel better. Actually as I am typing this I do remember being tired a lot as well, but taking in that extra sodium seemed to always do the trick and bring me back to life again. I speak in the past tense because I no longer experience any of these side effects and haven’t for many years. (more…)

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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. (more…)

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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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Just to reiterate what many other women have said, this website is a wonderful and empowering resource. Here’s my story:

I noticed a lot of hair in my tent while camping for 5 days last summer. At the time, I was not on birth control although I’ve been on and off it for 11 years (I’m 27). I got on Apri shortly after for its intended purpose and didn’t notice any change with the hair loss. I didn’t really think much of it until it didn’t stop. I freaked out while on the phone with my mom around Thanksgiving (my family all lives in Connecticut; I moved to Seattle about 2 years ago for my job). I went to my general practitioner and she basically told me, “See a dermatologist, and if its happening there’s not much you can do”. When I saw my family at Christmas they said I looked the same and I shouldn’t be so freaked out; everybody loses hair.

Let me tell you about my hair on a good day: I’ve always had baby-fine hair! I was bald until I was 2 and have never had long or thick hair. My mom and her sister have fine hair too. I’ve always gotten good cuts and color. My dad is balding; he’s 52…but I feel like many, many guys are balding. My uncles are mostly bald but no women in my family are. I can accept thin hair, that’s what I’m used to. It’s just excruciating to lose what already few hairs I have. I don’t have hair to spare!

The dermatologist I visited got an abnormal hair pull and diagnosed me with Telogen Effluvium. He essentially said, use Rogaine, eat an iron supplement and grin and bare it. All my blood work came back fine (whatever that means). I felt relieved for a few days but then decided that I was underwhelmed with his diagnosis and I couldn’t just sit here shedding hair all over the place, so I made an appointment with a female derm to get a second opinion. It’d been going on for 5 months. Believe me I wracked my brain trying to figure out what it could be. I had no major trauma or dietary change. I eat pretty well, exercise, etc. The female dermatologist was a bit more sensitive and her hair pull test was “normal”. She inspected my scalp and said it looks healthy and there is no scarring. She told me the shedding was probably just my body readjusting to the change in bcp (although I’ve gone off and on before and have never had a noticeable problem).

The weird thing is, two girlfriends I met when I moved here had hair loss issues. They both moved abroad last summer and when I emailed them asking about it, they also said, You’re fine, it’s hereditary or stress related. They’d laugh you out of the hair loss clinic. Try Rogaine. Two hair stylists I went to said they couldn’t believe how many women were approaching them with hair loss issues. It makes me wonder if it isn’t something environmental. (more…)

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A Blog Post By Dottie

Hey y’all,

I noticed that we use a lot of abbreviations when we talk about our histories & diagnoses here. I thought a simple index might help alleviate some confusion for the newbies. I included some basic information because I know that it took me awhile to figure some of this out, and I’m an RN! So here it goes…

AGA - Androgenetic Alopecia (AKA Androgenic Alopecia) is a common form of hair loss in both men and women. In men, this condition is also known as male-pattern baldness. The pattern of hair loss in women differs from male-pattern baldness. In women, the hair becomes thinner all over the head, and the hairline does not recede. Androgenetic alopecia in women rarely leads to total baldness. A variety of genetic and environmental factors likely play a role in causing androgenetic alopecia. Although researchers are studying risk factors that may contribute to this condition, most of these factors remain unknown. Researchers have determined that this form of hair loss is related to hormones called androgens.

Spiro - Spironolactone is a diuretic commonly prescribed for treatment of high blood pressure, but due to its anti-androgen properties may also be prescribed for hair loss.

AA- Alopecia Areata is a form of hair loss from areas of the body, usually from the scalp. Because it causes bald spots on the head, especially in the first stages, it is sometimes called spot baldness. In 1%–2% of cases, the condition can spread to the entire scalp (AAT-Alopecia totalis) or to the entire body (AAU- Alopecia universalis). Alopecia Areata occurs more frequently in people who have affected family members, suggesting that heredity may be a factor. In addition, it is slightly more likely to occur in people who have relatives with autoimmune diseases.

TE- Telogen effluvium is characterized by sudden, diffuse hair loss caused by an interruption in the normal hair growth cycle. A typical example of telogen effluvium is seen after pregnancy. In this condition women lose a significant amount of hair a few months after delivery when the protective effect of estrogen is removed. This shedding usually stops spontaneously and these patients will (generally) re-grow hair after 3 months.

Basics of hair cycles: In a normal healthy person’s scalp about 85% of the hair follicles are actively growing hair (anagen hair) and 15% are resting hair (telogen hair). A hair follicle usually grows anagen hair for 4 years or so, then rests for about 4 months. The resting or telogen hair has a club or bulb at the tip. A new anagen hair begins to grow under the resting telogen hair and pushes it out. Thus, it is normal to lose up to about 100 hairs a day on one’s comb, brush, in the basin or on the pillow, as a result of the normal scalp hair cycle.

PCOS- Polycystic Ovarian Syndrome is an endocrine disorder that affects approximately one in ten women. It occurs amongst all races and nationalities, is the most common hormonal disorder among women of reproductive age, and is a leading cause of infertility. The principal features are weight problems, lack of regular ovulation and/or menstruation, and excessive amounts or effects of androgenic (masculinizing) hormones. The symptoms and severity of the syndrome vary greatly between women. While the causes are unknown, insulin resistance, diabetes and obesity are all strongly correlated with PCOS. Common symptoms of PCOS include irregular, few, or absent menstrual periods, infertility, unwanted body hair, acne, and androgenetic alopecia.

I am not a physician, nor do I claim to know everything about female hair loss… I just hope that someone might find this helpful! I wish that there had been an easy “one stop” place for me to look for answers 20 years ago when I started loosing my hair. Maybe this information can help someone out there find answers.

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/

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Hello 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. (more…)

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I 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. (more…)

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Well, in my situation, my family doctor first ordered blood work to look for an underying hair loss cause and found nothing. So she referred me to a dermatologist and on my own I sought out an endocrinologist because I have other symptoms. An endocrinologist is now looking into a possible underactive adrenal gland now because my cortisol level was borderline low. At the same time, my dermatologist did a biopsy of my scalp and found telogen effluvium AND androgenetic alopecia. SHOCK! No women in my family have this problem. So, I am wondering if you’ve heard of any possibility that this could be a false -positive for the androgenetic alopecia. Can anything else mimic alopecia? There’s no way to tell how much of my hair loss is due to TE or how much is due to AA, but as a result I have been advised to start using Rogaine for Women. I was told Men’s Rogaine is too strong while not helping any more than the women’s Rogaine. I also am going to use Nizoral 1%(doctor suggested) for dandruff that I already have and that may get worse with Rogaine. I just pray the Rogaine works. I don’t want to waste time and hair.

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Hi, welcome to the site! I’m not a doctor and I don’t have a lot of first hand experience with scalp biopsies so I’m hoping that perhaps Andrea or another women who has actually had this test performed, can help in providing greater insight. I’m also sending your question over to The American Hair Loss Association so that it can be answered by an actual physician because I want to make sure you get the right information. I wish I could answer your question about whether or not scalp biopsies can return results that are false positives for androgenetic alopecia. Logically I think that it is always possible in any test. I am curious to know if any other women have received the same results as you, being diagnosed with both telogen effluvium and androgenetic alopecia. If I was concerned about the resulting diagnosis I probably would consider having the test be redone by a different physician. Doctors are people too and they do make mistakes.

When I was first diagnosed with androgenetic alopecia back when I as 21/22 years of age I was told to take the Mens Rogaine and that it was perfectly safe and would be more effective. I know that a lot of doctors do tell their female patients to go ahead with the stronger dose as well, but you have to do what you feel comfortable with. You can always go for the higher strength Men’s Rogaine at a later time should you choose to do so. Also, a few women on this blog have been saying that the Rogaine Foam is easier to use and eliminates some of the problems that the regular Rogaine can sometimes cause, such as greasiness and itchiness, since it doesn’t have the propylene glycol. Although currently the Rogaine Foam is only available in the 5% minoxidil Men’s version. You can read the comment Gretchen wrote about it here.

I used to use Nizoral myself because I read somewhere that the active ingredient Ketoconazole actually had some mild anti-androgen properties that would help in hair loss. (more…)

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I came across this article today while doing some hair loss research on the internet, and I thought it covered a lot of questions that women have about hair loss. The article is about both male and female pattern hair loss and provides a good overview. It was published on medscape from ACP Medicine Online. Here it is:

David A. Whiting, M.D.

Androgenetic alopecia is the common type of nonscarring hair loss affecting the crown. It results from a genetically determined end-organ sensitivity to androgens. It is often referred to as common baldness, male-pattern alopecia, and female-pattern alopecia.

Epidemiology and Pathogenesis

Androgenetic alopecia affects at least 50% of men by 50 years of age and 50% of women by 60 years of age.^6,7 Males have more androgen than females and therefore are usually affected earlier and more severely. Male-pattern alopecia often starts between 15 and 25 years of age. Male-pattern alopecia has two characteristic components, bitemporal recession and vertex balding [see Figure 1 — omitted], which in pronounced cases can progress to complete balding of the crown.^6,7 Female-pattern alopecia is more likely to start between 25 and 30 years of age (or sometimes later, after menopause). It is characterized by an intact frontal hairline and an oval area of diffuse thinning over the crown [see Figure 2 — omitted]. Bitemporal recession in women is much less obvious than it typically is in men, or it can be nonexistent. In general, androgenetic alopecia in women progresses to mild, moderate, or severe thinning but not to complete baldness. The best predictor of outcome is the degree of progression in affected relatives.

Androgenetic alopecia is an autosomal dominant disorder with variable penetrance. Susceptible hairs on the crown are predisposed to miniaturize under the influence of androgens, notably dihydrotestosterone. In both sexes, miniaturization results from a shortening of the anagen cycle, from years to months or weeks. Miniaturized hairs are characterized by reduced length and diameter; this accounts for the appearance of hair loss.⁸ Androgenetic alopecia largely spares the back and sides of the scalp.

Diagnosis

The diagnosis of androgenetic alopecia is usually obvious from the clinical pattern of hair loss from the top of the head.⁹ In some men, a female pattern of alopecia (see above) causes diagnostic confusion but has no other significance. In women, a male pattern of alopecia (i.e., bitemporal recession and vertex balding) occurring with menstrual irregularities, acne, hirsutism, and a deep voice is significant. The virilism indicates significant hyperandrogenism, the cause of which must be identified and treated [see 3:IV The Adrenal — omitted].

Scalp biopsies are rarely necessary to diagnose androgenetic alopecia. Biopsies cut horizontally are sometimes useful, however, in differentiating female-pattern alopecia from chronic telogen effluvium (see below). (more…)

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I found this study really interesting as it cites low iron stores as a possible contributing cause of women’s hair loss. I know one of the first things that usually gets tested when a woman complains of hair loss is the iron levels. Of course there is such a huge range of what is considered normal its hard to tell the optimal level for our body.

Here it is:

European Journal of Dermatology. Volume 17, Number 6, 507-12, November-December 2007, Investigative report

*Abstract

Author(s) : Claire Deloche, Philippe Bastien, Stéphanie Chadoutaud, Pilar Galan, Sandrine Bertrais, Serge Hercberg, Olivier de Lacharrière

Summary : Iron deficiency has been suspected to represent one of the possible causes of excessive hair loss in women. The aim of our study was to assess this relationship in a very large population of 5110 women aged between 35 and 60 years. Hair loss was evaluated using a standardized questionnaire sent to all volunteers. The iron status was assessed by a serum ferritin assay carried out in each volunteer. Multivariate analysis allowed us to identify three categories: “absence of hair loss” (43%), “moderate hair loss” (48%) and “excessive hair loss” (9%). Among the women affected by excessive hair loss, a larger proportion of women (59%) had low iron stores (<\; 40 µg/L) compared to the remainder of the population (48%). Analysis of variance and logistic regression show that a low iron store represents a risk factor for hair loss in non-menopausal women.

The article is broken down into the following areas

Introduction

Materials and Methods

• Volunteers
• Hair Loss Assessment
• Biochemical Measurements
• Statistical Analysis

Results

• Hair Loss Quantification
• Link Between Hair Loss And Serum Ferritin Levels

Discussion

This study, carried out for the first time on a very large cohort of women, provides strong arguments in favor of an association between depleted iron stores and hair loss, particularly excessive hair loss in women before menopause. (more…)

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