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.

Since my two dermatology visits I’ve been getting acupuncture (which makes me feel good but I don’t think it’s reducing the shedding), saw a naturopath (who I didn’t feel super confident in), and a therapist because I’m driving myself crazy being worried and scared about losing my hair. I am obsessed and not in a good way. All of my friends and my boyfriend say they do not notice a difference, but I do and I feel that something is off balance, I just don’t know what. I feel fine otherwise. Sometimes I feel like I want to shave my head and get it over with because every morning I dread showering and brushing my hair and picking hairs up around me all day. It feels like a slow painful death (I know that sounds dramatic). I am overwhelmed by the many possible causes and no diagnosis. It may be TE but it’s been going on for 7 months with no signs of stopping. I’m taking Chinese herbal supplements, iron, and biotin, with no noticeable change. I also used Rogaine a couple times and thought it made my hair look greasy. I use some products by Phyto for thinning hair as well.

This week I have a consultation with William Collier Design, a hair loss salon that styles and outfits people with various hair systems. My mom offered to fly out and go with me to get a wig if I want her too. She is practical and supportive, as are the rest of my friends and family. I just need to feel proactive and to know what my options are if it gets worse. I’m active and don’t want my life to be negatively affected i.e. if I get fake hair I want to be able to run in it. I’m on a Tri-Sprintec, a generic brand of Ortho Tri Cyclen. I wonder if I should go off and use a diaphram just to let my body do its own hormonal thing. I also want to see an endocrinologist and maybe an internist.

I just want to feel positive and hopeful and I don’t want to be consumed by this anymore. Sometimes I’m able to be positive. I think, Well I never really loved my hair anyway. My parents nicknamed me Kewpie when I was little because I was bald and had big eyes (we looked alike). Maybe I wasn’t destined to have natural, luscious hair. Maybe I will just embrace the “wigness” and have fun with that. My life is great otherwise…and my boyfriend is balding too, so at least I have him 😉

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Dear Kewpie ( love that nickname)

Thank you for writing and sharing your story. Believe me you don’t sound dramatic when you say your hair loss has been like a slow painful death. I know that feeling well, and also the feeling of just wanting to shave it off and be done with it already. I was shocked, and not so shocked about your first dermatologist appointment, I simply don’t understand why don’t doctors don’t aspire to become more educated about women’s hair loss and it’s various causes. They should also consider offering Compassion 101 at the medical schools.

We always notice our hair loss before anyone else. I was more open about speaking about my hair loss early on to my family and friends. I even had my boyfriend at the time inspect my scalp for any new possible hair growth, magnifying glass and all! But everyone always told me I “looked fine.” That is so incredibly frustrating when you are trying to find help and essentially someone who will believe you. I had several dermatologists tell me there was nothing wrong and I had plenty of hair. Maybe I should go back and make an appointment with them today and see if they would keep that same opinion.

As female hair loss sufferers we have to be our own detectives and arm ourselves with as much information as possible. A part of that is finding a doctor who is willing to… LISTEN. Doctors don’t know everything and a good one will be willing to listen to your findings about what could be causing it.

As far as getting off Tri-Sprintec… for me it is a bit of a double edged sword. The Tri-Sprintec possibly could be a contributing factor in your hair loss, or it could be helping you to not lose as much hair. Even though birth control pills can cause hair loss from going on or off them, they also can offer protective hair measures in women with androgenetic alopecia, depending on the person of course. This is why a popular standard treatment for female pattern hair loss is Spironolactone (brand: aldactone) in conjunction with a low androgen index birth control pill. For myself, Loestrin FE caused my hair loss, I like to refer to it as the “devil pill,” but it was recommended to be some years ago that getting back on may help to stabilize my hormones, so I did. I’ve been on Ortho Tri Cyclen for about 7-8 years now. I did start regretting that decision because my hair loss started to kick into super overdrive over the last couple years, and I began to wonder if I would have been better off just leaving everything alone. In fact if I could back in time, I probably would do that. But I must live in the present! I just wanted to put that out there so you understood all sides of the equation to getting off the pill.

I think you are doing all the right things, being proactive helps us to regain some control over a very seemingly uncontrollable situation. Acupuncture is great for providing and overall sense of well being which in my opinion creates a healthy healing environment and that can’t be bad. I have not yet seen a therapist through I’ve certainly considered it on more than one occasion. Do you feel it has helped you speaking with a professional about your feelings? I would be interested in knowing any insight the therapist may have provided.

I am unfamiliar with William Collier Design, but would love to hear your experience with them. Its always good to be aware of great hair replacement services providers out there for women. Knowing they exist and knowing we can wear hair that looks completely natural is extremely comforting.

Thank you so much for sharing your story!

Best,

~Y

{ 35 comments… read them below or add one }

Angela March 18, 2008 at 10:57 am

Kewpie,

I have a very similar story to yours. I have been on and off the BCP since I was 16-17. I am 23 now. I noticed a decrease in hair volume throughout the years but nothing alarming until 2006 when I stopped it for three months. I had shedding that lasted almost a year, and now it has stabalized but it is not growing back to make up for the deficit. I am currently still on the BCP because at the time I didnt know it was the cause. So now I dread getting off of it again… because I am pretty sure the shedding will occur again. Although, like you, stopping the pill previous to the last time did not cause noticible shedding. So I still can’t figure out why now and not then… I was a vegetarian for 10 years and have now incorporated meat into my diet in order to get adequate protein and iron (I hate it soo much). And I am taking an iron supplement that seems to make the shedding after washing my hair a lot less. Are you taking the iron your doctor recommended? If not I would. I use Vitron-C which is 200 mg (I take it once a day) and for the first two weeks it did not agree with my body but now it is alright. Just make sure to eat plums and other digestive helper fruits:)

I can’t be much help but just wanted to let you know we are in the same boat! And my bf is balding too:) He shaves his head and I think he looks even better with no hair. I always joke that he might have a mini-me soon. Keep your spirits up and I hope that our hair gets better.

Take care,
Angela

kika March 20, 2008 at 3:12 pm

Oh my, Your story is my story… and I live in Seattle! Can you share any doctor’s names that you found to be useful? Thanks for making me not feel so alone…..

Kewpie March 21, 2008 at 5:45 pm

I did not have much success with the therapist. I don’t think he had a clue what it feels like to be a young woman with an emotional issue related to a physical problem. I just didn’t feel like it was a good match and decided to choose someone else. But, finding a good doctor- any kind- is quite like dating. You just gotta keep trying till you find one that suits you!

Kika, I saw Michelle Heath at Group Health. She didn’t seem alarmed by my hair loss and I don’t think she specializes in it, but she was kind and took more than 5 minutes talking to me. She didn’t recommend a specialist.

I went to William Collier Design today (in Seattle) and that visit provided me with the most hope yet. I’d recommend looking up his salon online. He custom makes human hair systems (partial, full, etc) and his staff does cuts and color for women with hair loss to optimize what you have. It just provided me assurance that if things worsen I can get a hot lookin’ hair piece and still live my life. It made me feel much better.

Miriam May 6, 2008 at 7:05 am

I am a 40 year old mother of 3 children two of whom are girls. I started losing my hair when I was around 13 years old. I had put myself on a severe diet and when my hair started falling out I thougt it was because of the diet so I started eating again but my hair did not stop falling. At the same time I noticed that thick dark hair was growing on my face. I went to see several dermatologists who all told me that it must be genetic since tests were not showing any abnormalities. Finally an endocrinologist said there was some hormonal imbalance and put me on spirinolactone as well as minoxidol. She also told me to grin and bear it which I have done since then.
I have an aunt who also has very thin hair and a cousin who has Alopecea so I definately think there is a hereditary factor.
My concern now is for my two daughters. I am so worried that this might happen to them and I don’t want them to have to deal with hair loss like I did. Yes, in the big picture it is not terminal and no one dies from it but it certainly affects our psychology and therefore our lives. I find I feel so constrained by my lack of hair – just being outside on a windy day, doing any activity where my hair will be blown around, going swimming with my kids or going to an evening function where everyone’s hair is done up, it seems to affect me daily in one way or another.
My question is if anyone who has children has seen it being passed on to them and are there any preventative measures we can take to ensure this does not happen to our daughters.
I recenly did take my 8 year old daughter to an endocrinologist and explained my concern but he seemed to be on another planet and totally missed the point.I would love to hear of the experiences of others with regards to your own kids.
Miriam

Lydia July 7, 2008 at 3:42 pm

I have had hair loss diagnosed as effluveum telogen also. My hair started falling out four years ago and I used rogaine and took prescription aldactone with no success. I also have taken Wellbutrin for depression for several years and I recently discontinued it. I noticed that my hair started growing back a bit once I stopped taking Wellbutrin so I will be interested in seeing if my hair grows back.

Jenny August 4, 2008 at 6:39 pm

Hi,
I came across this website from the AHLC site. It’s been comforting to read about others who have shared my experience. I started to lose my hair in my early 20’s and it was emotionally devastating. As the only blonde in my family and a very attractive woman, my hair was part of my identity and I took great pride in it. I am now in my early 40’s and have been wearing different types of hair pieces for over 10 years now. Mostly for vanity reasons, I admit but I also suffered from terrible sunburn on my scalp in the summer months and as an active person, hats were a nusance. About 6 years ago, I found a local salon that custom creates, cuts and fits hair pieces for women who suffer from hair loss. The name of the company is Versacchi in Baltimore, MD and they have been extremely compassionate, professional and helpful to me in finding the right type of hair system. As I mentioned, I am very active and athletic and needed something that wouldn’t hinder my lifestyle (tennis, skiing, swimming, etc). I currently wear a semi-permanent piece at the crown of my head which is blended with some of my real hair on the sides. The downside is that I need to go for maintenace every 4-5 weeks (like going for a haircut) and it’s costly but it changed my life for the better because it’s the most natural looking and feeling hair I have ever worn and I have worn many different types of wigs. It has helped with my raising my confidence level and anxiety that I had because of my hair loss. I am very comfortable with my hair system for the most part and the hair is so natural and undetectable that it makes me sometimes forget it’s not my real hair! The one major problem I am struggling with is that I haven’t told many people about my problem – only my parents, sister and a few close friends. Everyone else thinks its my hair and no one would ever know to ask if it is a hair piece. Due in part to my hair loss, I have been seeing a therapist for many years and my hair problem was initially the reason I went into therapy but have come a long way emotionally. However, I am still struggling with my hair loss and how it directly relates to my inability to become close and intimate with a man. I’ve had many boyfriends over the past 20 years but never felt close enough to tell any of them about my hair which I’m sure is one of the main reasons I am still single. Right now, I’m dating someone who I really like and we are still getting to know one another but since it’s early in the relationship, I don’t know if, when or how to tell him about my hair piece. I fear that he may discover it when we are intimate but I’m terrified that if I tell him, he will reject me. On one hand, it may be good to come clean about my hair replacement early on in the relationship but on the other hand, I want someone to get to know me as a person, not just my looks. After all, most people don’t talk about their entire life story or problems early in the relationship, that usually comes with time and trust must first be established which again, takes time. I’m very conflicted and really struggling because I feel like I am being dishonest by not telling the person I’m dating about my hair piece yet, being an open book too early in a relationship isn’t always wise either. I feel like if he really gets to know me and develops strong feelings for me, as a person, perhaps my wig won’t be an issue but if I tell him too early in the relationship, he may not stick around to get to know me, as a person, not just my looks. So, my question is, what are other people’s experiences with this issue, if any? I want to continue to get to know the man I am dating but part of me is afraid of rejection if I tell him now but I am also feeling guilty for not sharing this information about me. On the other hand, I feel that very personal or intimate details about oneself should be earned which comes with trust and a deeper bond after the relationship has had time to develop and grow.

Teresa September 12, 2008 at 11:00 am

Just wondering – I am taking Prempro (for hormone replacement) and have noticed that my hair seems to be thinning on the top. Has anyone experienced the same thing?

Vicki September 17, 2008 at 2:53 am

In trying to diagnose my hair loss (doctor’s have settled on androgenetic alopecia and very slight hypothyroidism based on all test results being normal), one subject that was never brought up was birth control pills. I was on lo-ovral for 18 years. My hair loss didn’t begin till 2 1/2 years after I stopped. Could it be a factor after that long?

Tish October 21, 2008 at 5:34 am

Hi Jenny…. I understand your dating dilemma, but at least you’re able to date. I have such thin hair that wearing a hair piece doesn’t help, and with my hot flashes at age 51, a wig is out of the question. I think it’s awfully early in the game to have to feel as though my life is over, but as Oprah always says, “your hair is your crowning glory”, and I don’t have more than a few wisps anymore. What man will even give me a first look, nevermind a second one. At least the men you date will have the chance to get to know you, as you say. Once they realize how wonderful you are, the hair won’t really matter. I would say the time to tell him is when you’ve come to have close enough feelings for him that it’s the right time to become intimate. Explain that the reason you’re hesitant to have a physical relationship is because you fear he’ll react badly to your hair. When he give you that confused look, that’s the time to tell him. Believe me, if he truly has feelings for you that warrant your giving him this affection, the hair won’t matter. Believe in yourself and be happy!

nikki November 9, 2008 at 12:04 pm

Hey, I’m on Tri-Sprintec as well and I believe I’ve been losing a lot of my hair since I’ve switched and it’s still falling out, I don’t know what to do!!!! I’m going to my gyno to ask her if that’s normal..

My stylist also said that a thyroid problem can cause hairloss, so I’m getting bloodwork done..

I know how you feel, I have very thin/fine hair as well..

Stacie January 31, 2009 at 12:23 pm

I just came across this website while searching for an endocrinologist. I just wanted to say that my story is seriously identical to yours. It was so nice hearing that someone is sharing the same frustrations as me, not that I would wish this upon anyone. I don’t think anyone knows how I feel because not too many people can notice the difference (although some have). I’ve had blodd work done to test my thyroid, iron levels, and auto-immune disorders and everything came back normal. I have an sppointment with a dermatologist and I am looking for an endo now. Just recently I read about hair loss as a rare side effect for the hepatitis B vaccine. I did get that vaccine a little over a year before my hair loss started. Anyone else get vaccinated around the time of your loss?

Julia November 19, 2009 at 10:19 am

GET OFF THE BIRTH CONTROL. I just got back from a dermatologist (having the same problems you have) and he told me Tri-Sprintec is the reason why my hair is falling out. Now I’m home freaking out because I don’t know what me and my partner are going to do. But yeah it can directly cause hair loss.

KC January 7, 2010 at 12:23 am

Omg– I totally feel like this is a Seattle thing. I have been losing hair 1 year after giving birth and it is horribly disfiguring. I look like Gollum from LOTR. My scalp is shining through my hair and when I part it down the middle it is fading into baldness. It’s horrible and getting worse.

Some of my symptoms are:
1. Pillowcase pulling strands. This is when I first noticed the hairloss.
2. Blisters and pus scabs on my scalp where the hair used to be.
3. Severe scalp itchiness and greasy hair and skin.
4. Really sticky boogers in my nose.
5. Staph infections consistently.

Please let me know if any of you are experiencing this. I am a normal 33 year old and I eat organic, excercise regularly, and use Mirena as b.control. I’m so frustrated docs are baffled, there’s no hormone/blood problems. What could it be???

B. February 11, 2010 at 8:37 am

I’m in Australia and I am in a similar boat. My hair loss started during the end of 2009. I went through a stressfull 3 years though and have only just finished university. My blood tests came back fine…and have just purchased a wig after wearing clip in extensions…My dermotologist has assumed i also believes i have “Telogen Effluvium” but i don’t know =(

I feel like my hair just have no folicles to keep it in my scalp…and sadly my seb. dermatitis doesn’t help myu condition and the irritation on the scalp makes it difficult not to itchy/scratch….

I’m on the birth control pill and am now taking supplements…what makes it even more difficult is that i have curly hair so combing is difficult due to nots and what not.

I am pretty new to this…so I really appreciate you all writing about eveything you are all going through cause over here i feel like i am the only one going through this.

Bobbie February 17, 2010 at 12:14 pm

I have been on Tri-Sprintec for about 1 year now, and about 6 months ago I noticed my hairbrush had more and more hair in it — alot. I am 40+ and have taken birth control pills forever, I have never had anything like this on any other brand. I believe the Tri-Sprintec is what is causing my hair loss. I have very thin, fine, straight strawberry blonde (all natural) hair. No one else seems to be able to tell, but I can, especially here lately. The polytail holders do not fit as tight. I am going off the pill for good at the end of this month. I just hope the hair loss thing will stop and regrowth will begin once I have off this drug.

Colleen May 29, 2010 at 3:41 pm

I am 40 and for the last few years I’ve noticed my hair has thinned on the sides to the point where I only have a few strands. I’ve been to my doctor and endocrinologist. My blood work and tests were normal. I mentioned that I’ve been a vegetarian for the last 2 years but neither doctor seems to think it has anything to do with my hair loss. I haven’t been on birth control in years so I have no idea what is causing the shedding. The respsonses from other women have been comforting because I now realize that I’m not alone. If anyone finds a “cure” please let me know.

S November 2, 2010 at 8:58 pm

Kewpie,

Has anything worked for you yet? My story is the same as yours and I have never take BCP.

Thanks

Mel February 28, 2011 at 4:43 am

I have been losing hair since my first child almost 10 years ago. Not long after my first child was born, I had my hair coloured for the first time. I think the hairdresser left the dye in for too long. I went back very unhappy with the colour and then they put a toner in my hair. Not long after, my hair started falling out in clumps. When I told the hairdresser that I thought it was from the dye, she said that it would be because I just had a baby. My doctor agreed. Since then, my hair has not grown back the same. Just recently I have started losing hair at increased rate. I can see shiny scalp and people are starting to notice the thinning. I have had a number of blood tests done over the past 9 or so years and have been told that my iron has been on the low side, but the most recent test showed that everything is normal. I have been under a lot of stress lately, so I’m thinking it could be that, but then again, I have had irregular periods for quite a few years, and I was reading that this could mean a hormonal imbalance and hair loss is a site affect. I was reading on the internet that there are certain blood test the doctor can do to check for hair loss reasons. They are: Total & Free Testosterone, DHEA Sulfate, Prolactin, CBC, Serum Iron, T3, T4, TSH, ANA, STS. I am going to request that they run these tests on my next visit. If these come up normal, my next step will be to visit a dermatologist. I was reading that it could be as simple as a skin fungle which can be treated with an antibiotic. I am finding it quite scary at the amount of women losing their hair at such a young age. I was reading another womans comments saying that maybe it is something environmental and I agree. Maybe it is in the pesticides they use on our fruit and vegetables, who knows. I just hope we can all find a way to regrow our hair, without transplants etc. Good luck to you all.

Christina March 10, 2011 at 11:42 pm

nikki, I’m 23 and have been on tri-sprintec for probably at least a year. My previous birth control was yasmin, which I did not have any known side effects with but I chose to change for personal reasons. I started taking birth control at 19 and have never been off it. I have been noticing that my hair seems thinner but I don’t know if tri-sprintec or stress is to blame. I have been under major stress after my move from Colorado to Ohio with my husband (we moved in August 2010). I have also been going to school online for a few months and have been stressing about keeping straight A’s. I don’t get enough sleep most of the time and sometimes my diet suffers. I weigh only about 120 lbs which seems much less than a year or two ago when I weighed 15 more lbs. I think my hair loss could be coming from birth control, stress, and diet. I’m just not sure which is the major cause. I have a new doctor and am starting a new birth control in a week. I’m hoping that this change will help ease my mind.

pip April 7, 2011 at 7:15 pm

Oh boy,
I have not had a chance to read all the post but enough to chime in.
I also live in Seattle (almost 37). Been dealing with this from the age of 24. Last 2-3 years has taken a drastic turn for the worse.
Slow death is right. Dr’s Don’t care is right. Friends and family saying it’s fine, you can’t tell, it’s normal for everyone-is right.
Everything you have explained and more.
It is a very scary and dark place to be and very lonely.
I am wearing a hat everyday now, which is just depressing. I have called William Collier, but still in denial I think and have hopes that some morocco will happen and I won’t need to worry about it.
Now my eyebrows have started to fall out in patches, fir a much more fantastic look. I did find a very good, caring ND that spent no less than 2 hours with me
when I went in. She finally suggested some therapy. I do honestly think she cared and wanted to figure it out, but could see it was killing me and knew I needed more help in the inside over it. I have not gone, but have been slowly coming to grips with this and at least can leave the house and stand in line at starbucks (with a hat) and go to work to forget about it. Everyone tells you to lower the stress in your life. They don’t understand that looking in the mirror, picking up hair everywhere and taking a shower are super stressful and I dint really think that you can stop how you feel during any if those things.
Shave it off and get it over with SO crosses my mind every day!
I just cut a chunk out of the back so the “pieces” being picked up and swept up were not as long. I no longer get my hair done because there is no need.
I hate it that anyone needs to experience this but it helps to know there are others out there.
Thank you so much for sharing!

teresa j. June 2, 2011 at 9:45 am

I feel your pain… thanks for sharing all these stories….I’m not alone!! Im 27 and have always had thin, baby-fine hair my whole life. But probably when I was 18-19, it really started to thin more around the temples, front, and the back/crown of my head. I think i still have a substantial amount of hair, but it takes ALOT of WORK to get it to look decent & full of life, but i ALWAYS worry that people can see my “beginning-of-baldness” area on the crown of my head…quite frustrating & everyone always says they love my hair, but i can see whats really there….i wear a cute hat most of the time just so i don’t have to worry about it in hopes that whatever im doing i’ll enjoy it more not worrying about that darned thin spot…and now the front is also starting to thin more too….but I HAVE TO FIX my hair almost everyday, b/c if i don’t, it looks awful or limp & greasy. I keep it fairly short to help give it more life, but im worried all the blow drying & heat irons are really hurting it, but i always try to protect it w/ styling products….I just wish I had more hair :-(

Oh, and I’ve never been on birth control ever….. but I am a smoker & I know that’s not helping either (definitely planning on quitting very soon though, just gotta find that willpower) I take my women’s one-a-day & hair-skin-nail vitamins….what gives? guess it’s just genetics & the smoking??

Iris September 1, 2011 at 10:40 pm

I’ve always had thick long dark hair, always. I always woke up with an afro of hair and then a month ago i noticed, after dying my hair black, a huge huge amount started coming out. I got worried and started taking biotin. I had started taking biotin before but the moment i did my hair started falling out and my nails got really bad. However since no one had this kind of reaction to it i decided it must have been something else and i started it again. It’s been a full month since i started losing hair. I cut my hair really short and constantly wear it up. My friends say they dont notice a difference but i feel so bald! 3 months ago my ex blamed me for wanting to commite suicide because he found out i went out on one date (yes one) and i also lost 20 pounds that month, and then the month it started i became the most hated person on my apartment complex because of a false rumor! I had become so depressed by the start of the month that i joked ‘im surprised i still have my hair’ :( Im goin to stop taking the biotin and see if that works again. I’ve always loved my hair, always. Its who i was, it was the only thing about me i could control. If i lost it i dont know what i’d do :( It blows.

Heartsick Mom September 6, 2011 at 8:02 pm

My 37 year old daughter is devasted by her hair loss. She recently had bloodwork done that came back within the normal range. Like others have said, it consumes her day and keeps her awake at night. Not only am I heartsick over her pain but I’m worried that the worry and stress (in addition to a stressful job) that keeps her awake at night and takes the joy out of her life is going to seriously affect her health. She is extremely health minded with diet and exercise but I worry that her stress may bring on health problems. Has anyone found a Seattle area doctor who has helped? I miss my daughter’s smile.

Massachusetts December 7, 2011 at 9:49 am

Well as it may seem that this is a Seattle issue it is not. I live in MA and I am 26 years old. Ive been having hair loss issues for approximately 2 years. Its so nice to read and relate to all of you have posted and not feel like I am crazy. My GYN referred me to a dermatologist and I saw him for about a year and was unsuccessful. He told me I had effluveum telogen and put me on rogaine and that has helped with the regrowth but not the actual hairloss. I agree that the rogaine is greasy and a pain to use. I now have a ton of small hairs that are so noticeable and I worry that all my hair will fall out and this is what I will be left with. I had knee surgery in October 2010 and was told my hair loss was “stress related” because of my body changes and it trying to heal. I also recently got married so that was a common answer again its “stress. Well my knee healed in 2 weeks and Im not planning a wedding anymore and my hair is still falling out in ridiculous amounts. Ive done so many tests — bloodwork, thyroid, iron, adrenals, ovaries, hormones — and everything is normal. Finally my dermatologist referred me to another specialist. He too inspected my scalp, eyebrows, hairline, etc. and told me everything was normal. Said I didnt have any issues that fall into a disease category which is good but still again whats wrong with me? Specialist after specialist and co-pays and time off from work for nothing. It is frustrating especially when you know yourself and know something just isnt right. Another thing I take regularly is Miralax for constipation and irregularity. Does anyone else take that? I think thats safe and I know they prescribe it to pregnant woman. But after reading all of the blogs I couldnt believe that everyone takes Tri-Sprintec. Ive been on birth control for 10 years… 5 years on Sprintec. I dont know if its different from Tri-Sprintec or not but this can not be a coincidence. I have one week left and im off of it. It does worry me that I could increase hair loss and that Ive been on this pill for 5 years and have only had hair loss for 2 but I think its worth a shot. I will report back in a couple months and let everyone know my status. Again, thanks for sharing your stories. We are all beautiful….BELIEVE.

Susan March 23, 2012 at 5:48 pm

Hi. I’m 64 and on Bio-identical hormones: DHEA, Testosterone, Progesterone and Bi-est, as well as Desiccated Thyroid. I have noticed considerable hair loss at my temples and a noticeable change in the texture of my hair. The hair itself seems thinner and it is much frizzier than it used to be. Has anyone else experienced changes from Bio-identical hormones or Thyroid?

Nicole June 30, 2012 at 11:54 pm

It is the damned tri-sprintec! I am 37 never On pills before 2 months ago. I have always had thick healthy hair. After 3 weeks of taking the pill hair shedding started and I have stopped the pill for a month now but the hair loss has not stopped yet! Do not take this pill!

Michele September 24, 2012 at 1:07 pm

I had thyroid cancer and thyroidectomy. Am taking Armor thyroid. Hair loss has been terrible since thyroidectomy. Cannot tolerate Synthroid or Levothyroxin. Don’t know what to tell you. Just scheduled a new Derm appointment. Was told that they don’t specialize in hair loss. So, I guess we knwo where this will go.

liz December 4, 2012 at 10:33 am

I am 57 and started losing hair about two years ago. Went for tests, and discovered I have hypothyroidism. Started taking NatureThroid, a natural dessicated thyroid drug. I did get my thyroid levels back in the normal range. My hair loss did slow down my but it was still falling out. Recently I had my bone density test – went from osteopenia to osteoporosis, so my doctor cut back my dosage of NatureThroid and now my hair loss has returned full force. My hair has also stopped growing, and I have hair breakage at my hairline above my forehead. I get sick & stressed out everytime I shampoo my hair or comb it. I am waiting to see a dermatologist at Yale who understands hair loss. Stay tuned.

CT January 21, 2013 at 11:06 pm

Thanks everyone for sharing your stories. I definitely hope you decide to update once you solve your problems and let us know what your solution turned out to be!

Just had a couple of comments/questions for a couple previous posters…

Massachusetts – I have been taking Miralax too and was wondering if it could be responsible for the hair loss that’s been getting worse for me over the last couple months. The only problem is I’ve also been taking a number of other things, most of which were started in the past year, so it’s hard to separate the variables. I’m going to try to figure out some systematic way of doing this though and will repost if I figure out the culprit.

Liz – Would you mind sharing the name of the derm at Yale who understands hair loss? I live in the area and would love to see him/her!

KP May 7, 2014 at 11:24 am

I know I’m a little late posting on this forum. I’m a licensed cosmetologist and I just acquired a client who, I’m pretty sure has Androgenetic Alopecia; so I always like to research and see if there are any new effective things out there, and I came across this blog.
After reading many of the comments, there seems to be a common theme with hair loss: birth control pills.

When I was 18 I started BCP to regulate my periods. At first I had no real problems but then a whole slew of issues began. I had bad migraines, bad chest pains, I developed Melasma (sometimes called pregnancy mask), and to top it all off my hair was falling out big time. Like a lot of ladies have been saying, you are usually the first to notice and everyone else thinks you are crazy. I had my thyroid checked and it was in normal range (I want to expand on this though, so I’ll add a paragraph at the bottom). More time passed and it was only getting worse. I started taking pictures and documenting the whole thing cuz I was tired of people thinking I was nuts.

I went to Santa Monica and saw a Dr. there who told me I was suffering from telogen effluvium and it was my BCP pills (I was on Ortho-tri cyclen lo)
I went back to my gyno who put me on Lo Ogestrel. I stayed on that for a few months and saw no improvement, so I said I’m done with these people. I quit the BCP pills (was on those for about 5 years), started using Murad shampoo/conditioner that has the DHT blocker in it, started taking a hair supplement with biotin, laid off permanent hair dye, and slowly but surely my hair is as close to normal (what it was previously) as I could ever have hoped for. And I am no longer using that shampoo or those biotin pills.
It took about a year for my hair to return. And now it’s been about 3-4 years I have been off those BC pills.

In my honest opinion, I truly believe that most hair loss is able to be treated. As long as you catch it early enough. The crappy part is that there are a lot of doctors out there that, for lack of a better word, are just bad. Do your research and don’t be afraid of second or third or fourth or twenty-th opinions.
I’m a big believer in the shampoos that have the DHT blockers (along with Saw Palmetto) so like Murad and Bosley. I’ve seen results with my clients. Of course it isn’t a miracle product but it does help a little bit.

The last thing I wanted to touch on was: you should go see an endocrinologist for your thyroid to be checked. If you see a regular MD, even if you are higher in range they will tell you you are good. I think this assumption with range is potentially dangerous. Not to mention they don’t check certain TSH levels, which can be miss leading. And as most of you know, thyroid is directly related to hair loss.

I wish everyone the best of luck! Keep your chin up, things get better.

Ronell May 23, 2014 at 5:52 am

Hi, I am a 51 year old woman from SA and have struggled with hairloss, since I was a teen! I really tried everything, even a wig, which was a huge disaster! Reading all the letters, I would like to make a few pointers:
When you stop using a birthcontrol pil, chances are that you might experience hair loss, if you have Alopecia androgenetica, I also had all the blood tests over the years, apparently nothing wrong, but last year a golf ball developed in my throat, tests revealed I had hypo Thyroidism. This is what I now know. If you are on the “Pil” , and experience hair loss, go back. Apparently Diane is the best birthcontrol pil available in SA which has the anti-androgenic hormones, (but is bad for breast cancer). I went on Ditroxin, and I think if you have a slight underactivity, and experience hair loss, you might just as well start using Ditroxin, I used Eltroxin 12 years ago and it helped a lot, the doctor that I then had, said I should use it for the rest of my life. Apparently doctors know little about the parathyroid, and it is not possible to detect through tests if their is a dysfunction, hairloss is a symptom. So your tests may come out clean, but your parathyroid might not be working. That is why I am using Ditroxin, and will use it for the rest of my life. (4 years ago, after moving, I went to a new doctor, he did not want to prescribe me the Ditroxin, without tests. I knew I have been for so many tests, which came out clean, that I was not prepared to waste the money, and went without. My hair loss were terrible, and last year almost every hair fell out with the hypothyroidism.) This is now a year later and the hair loss stabilised, but the new hair has’nt grown back. Currently I am using Spiractin, only 50mg. Lenamet, which I drink in the morning, it is also anti-androgenic, especially if you are A blood type, it helps with the accidity and Ditroxin, Iron, Hairsupplements and B5Niacin, which gives blood to the skin, (all these hair lotions that you put onto your scalp is suppose to help the blood flow to the follicle, Solals Vit B5 brings blood to the skin instantly) Folic acid. If you want to know more I would gladly answer any questions

liz November 20, 2015 at 9:43 pm

The Yale dermatologist was a complete waste of time. No blood work, no scalp tests – absolutely nothing! She took one quick look at me and said I have female pattern baldness and to try rogaine – thank you for coming, have a nice day! I waited 6 months for an appointment which lasted all of five minutes. I have recently stopped my NaturThroid , with my doctors permission, to see if that is the cause. Too soon to tell.

tina December 1, 2015 at 9:14 am

Liz,
I’m interested as well in the NaturThroid being an issue. I went on it in May of this year and from then until August I had major thinning. I too went off it and I’m waiting to see if it helps. How are you making out so far?

tina December 1, 2015 at 9:14 am

how long were you on it? and what dose?

liz December 14, 2015 at 5:06 pm

Tina,
I just had a complete lab work done to check DHA, ferriten, iodine, vitamin D, estrogen etc, and all came back okay. So now I can rule out some more possible causes. I am still not taking Naturthroid (1 gram). So far I feel wonderful, but have gained a couple of pounds – BUT – the shedding has slowed down! I wash my hair once a week and put all of the hair which falls out after combing in baggies which I have numbered week 1, week 2, etc. and I can definitely see an improvement. I am also going to give the laser treatment a try. Just purchased the IGrow helmet, and waiting for it to arrive. I am also seriously considering the PRP therapy.

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