I’ve been battling female hair loss for about 10 years now, and the nightmare is never-ending. The nightmare has become progressively worse the last few months, and what’s so frustrating is that no matter what I do, nothing has helped so far. I’ve been researching female hair loss for so many years now, because I still want to find a cure for me, as well as other women. This post is more of a rant than anything else because the last few months have been horrible, and none of my friends or family can really relate at all, but I know hundreds of thousands of women in the world are experiencing the same thing as me.
What sucks for me is that I’ve been fixated on hair since I was like 12, and I only have one great fear in life – losing my hair. And now my biggest fear is a reality. Talk about bad luck. I have started to wonder if I’m conjuring up hair loss – where what you focus on most ends up happening - like “The Secret.”
Androgenetic Alopecia – genetic female hair loss
Yesterday I got dealt a life sentence – a diagnosis of Androgenetic Alopecia – genetic hair loss. As you can read in my hair loss story (which I haven’t updated in a few years), countless doctors have told me I have Telogen Effluvium, which is a “temporary” hair loss condition, where you hair sheds like crazy due to a temporary issue. Common causes of Telogen Effluvium include going on or off birth control pills, giving birth, having surgery, going on a crash diet, having Hypothyroid, having low iron, etc. The shedding usually starts a few months after the causal event, and it stops, in theory, once the event is over. I seriously thought I had Chronic Telogen Effluvium for the last 10 years from some yet to be diagnosed hidden problem, because my hair sheds hundreds of hairs a day, and it never ends.
The most recent hair loss diagnosis
I’m 35 now, and earlier this year the hair on my temples started receding and the hair in front started looking sparser and thinner in diameter, so I knew I was probably showing signs of Androgenetic Alopecia. My dad is pretty bald, and my mom’s hair is now thin, so it’s really no surprise – I had just hoped the past 8 doctors were all correct in their diagnosis of Telogen Effluvium that “would resolve on its own.” Anyway, yesterday I went to a Dermatologist that has studied hair loss for years, and my Endocrinologist called him “the hair guy” in Vegas. The last few weeks my hair shedding has doubled (possibly as a side effect of the Rogaine I started using a month or two ago), and it’s looking thinner every week! The doctor took one look at my head, and coupled with the fact my parents both have thin hair, he diagnosed me with Androgenetic Alopecia. My hair is becoming miniaturized in the front, which furthered his diagnosis. A scalp biopsy was unnecessary, because it was plain as day what was going on! His suggestion was to keep up with the Rogaine, and there’s nothing else to do – it’s only hair – get over it. Thanks. I had heard he wasn’t a sympathetic guy, so I was prepared. He wouldn’t write me prescriptions for anything (like Spironlactone), which I will probably try soon, if I can find yet another doctor to see that will prescribe it.
Going Crazy
As devastated as I am, I am so tired of people (namely my friends and family) telling me I’m crazy, and that my hair isn’t falling out. Giant clumps fall out everywhere everyday, and people claim I am just pulling my hair out. People tell me my hair looks fine, even though in the same sentence they claim I’ve done something to make it go from super curly to limp and straight now (that’s what happens when you hardly have any hair left). The shedding is driving me insane, and all I want to do is chop my hair off like Emma Watson, so that I won’t see hairs everywhere. Every hair that falls out makes me slightly more crazy. Then I am told that women don’t look good with short hair because it’s not attractive. My boyfriend has said on several occasions that I won’t look good with short hair, and that I will hate it (which I probably will). Finally, I’m told that my female relatives that have thinning hair look “awful.” WTF?
Society sucks
Usually I don’t care what people think about me, and if people laugh at something I’m wearing, fine. But I’m sensitive about my hair loss, because it’s something that is embarrassing to me and something that I haven’t been able to control. Even though it’s natural, like aging, female hair loss is deemed “unacceptable” in our society. That’s what really kills me. Women with shaved heads are mocked, and even wigs, extensions, and weaves are joked about, even though they can look great. I know enough not to take jabs personally, but it’s still painful to see how people are treated. I don’t know what my future hair plans will be if it gets a lot worse. I am pretty low maintenance, and that’s another reason this scares me so much – I don’t want to limit my activities if I’m wearing hair, and I am nervous to walk around bald! I already tried on one wig last week, and I’m going to visit a hair store soon to learn my options.
Future steps
Last year, I was diagnosed with possible Hypothyroid, and a year of medication (Armour) didn’t help my hair at all, and the hyper side effects from the medication made me think I didn’t really have the disease. I still have low ferritin levels, so I continue to take iron pills and monitor that. I’ve had sooo many blood tests, and will be having more. I take tons of vitamins, eat healthy(ish), do yoga, and do a lot of the things that you’re “supposed” to do to grow hair. I have lousy health insurance, so I spend thousands of dollars a year trying to manage my hair loss, and I wonder if I’m just wasting my money. If I was rich, I’d be doing even more tests, though!
Finally, since hair loss is my worst nightmare come true, and the worst thing that’s happened to me in my entire life, I am hoping it will help alleviate my overall anxiety (if it doesn’t first give me a heart attack). I guess I watch too much of the show “Obsessed” but by exposing myself to my biggest fear, I feel like all of my other fears have vanished. And I know “it’s only hair” and there are so many worse things out there, but I would guess 90% of women would be just as devastated if it happened to them too.
Please visit my new blog Hair Loss Hell.
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August 18th, 2010 at 3:48 am
My hair has been thinning for a years now too – I know how it feels – like you said, it sucks!
August 18th, 2010 at 9:37 am
I don’t know how seriously you’ll take a relatively anonymous comment on your blog.. I just wanted to say, I know what you’re going through. For me it turned out to be a problem with wheat primarily and grains and beans in general secondarily. I’ve done the research on it and it makes sense. It seems most of the problems stem from natural compounds called lectins that are present in large amounts (and the wrong types) in these foods. My hypothyroid is healing, and my hair is getting thicker, since I’ve bumped them out of my diet. Send me an e-mail if you are interested in talking with me about it.
August 19th, 2010 at 2:35 am
I am very sorry to hear about your “friends” and family not believing you. Reminds me of people with normal skin teling me my skin wouldn’t look good because I did too much with it, not enough with it, ate the wrong things, whatever… People just can’t imagine that someone else might have problems with things they never even thought about.
I bet you can find a really nice and natural-looking wig. It sucks that it’s not your own hair, but at least it might be easier to style and look good all the time. :)
August 19th, 2010 at 11:56 am
I have heard that saw palmetto might help somewhat, as it is a DHT blocker. I’m not sure DHT is a factor in your case though, but it is worth a shot.
August 19th, 2010 at 3:14 pm
Pam,
I’ve been taking saw palmetto for the last year. I don’t think it’s done anything, but I take it just in case. I’m sure DHT is a problem in my case since my hair problem is probably mostly genetic.
August 19th, 2010 at 3:23 pm
Ellie,
I’m glad you found your problem and were able to fix it! I have been cutting down on gluten for the past year (but I haven’t totally eliminated it, or food with lectin). I know a lot of people with hypothyroid have a gluten intolerance. I went on an elimination diet and cut out all gluten, but I didn’t notice any difference when I reintroduced it. I don’t have any stomach problems, or a lot of the common signs of gluten intolerance. I didn’t go on the diet for 3 months though, and I would estimate it would take at least that long to see if it would help my hair.
August 23rd, 2010 at 10:53 am
I was also diagnosed with Androgenetic Alopecia by an unsympathetic dermatologist (maybe being a jerk is a requirement for the specialty) when I was about 25. His diagnosis didn’t make sense to me because both of my parents had full heads of hair and none of my five siblings (I am number five of six) were experiencing problems. I was just told that someone in my family had it and was made to feel like an idiot. I was also told I could try Rogaine if I wanted to but there was really nothing I could do………
I later went to another dermatologist. I had found out that hair loss is a problem associated with PCOS, which I had been diagnosed with when I was about 20. I started using Rogaine (full strength) and wanted to let you know that I did see a marked improvement after about a year of use. I used it for a couple years and my hair only looked thin in the front center (I had been thing all along the top of my head). You do have to continue using it otherwise you will experience loss again, just as you might have heard. I stopped using it six months before I wanted to try having a baby and have now returned to having very thin hair after disuse for about three years now.
Keep up with the Rogaine, hopefully you will see results soon (it did take a while)! After about six months I was beginning to see very fine hairs growing on my head and even my hair dresser commented on them, which was very encouraging.
The dermatologist I was going to stated that Rogaine would only do so much for me and really pushed for me to go on Spironolactone but I was reluctant because I was hoping to have kids and didn’t want that in my system.
The point of this long comment is to give you hope and let you know that I am one more person out there who feels your pain! I am a teacher and work with teenagers so you can imagine the comments I have heard about my hair from some of these little “angels”. I also had people tell me that my hair wasn’t “that bad” but photos can’t lie and when you can see your scalp in photos you know the truth.
Feel free to email me if you need to “talk”, etc.
August 25th, 2010 at 10:49 am
Im sorry that your having to go through this. Maybe its just god’s way of testing your strength. There are def alot of good wigs out there that are made of real hair and actually look like real hair when worn. Try not to stress out even though thats the only thing on your mind right now. Stressing can cause more hairloss. Yoga is good and deep breathing exercises.
August 29th, 2010 at 9:18 am
I’ve had thin hair on top since my teens, noticed bangs make it look worse, washed and combed out my hair upside down for years because I thought I was stressing out the top that was thin, tried Rogaine for years, (don’t know if it really helped or not)
Few years ago started getting highlights on the top of my head and my thin hair seemed to thicken where it was bleached, started getting my entire head blonde and my hair never felt thicker. Went back to dark hair and oh my god there is my scalp showing through again on the top unless I clip my hair to the side.
I’m back to blonde highlights, and back to thicker ‘looking’ hair.
August 29th, 2010 at 9:18 am
I can’t tell you how many times I’ve photoshopped my scalp in photos of me with dark hair lol
September 8th, 2010 at 4:18 pm
I was losing my hair for a long time. And after all of the false diagnosis that I have concluded, I found out about Human Demodex Mites. (research on web)
September 8th, 2010 at 11:07 pm
Maybe try Skin Biology copper peptides. The product is called Folligen. The website has a ton of info.
September 9th, 2010 at 12:10 pm
I was so sorry to read about your thinning hair problems. My neighbor experienced hair thinning and shedding and I didn’t believe her until she showed me the difference in a recent and two year old photo. Have you looked at Latisse? Its now being used on both lashes and eyebrows and I wonder if its being used on problem areas like the front hairline or temples.
September 13th, 2010 at 2:01 pm
I really feel your pain. I am also suffering from hair loss. I lost a lot of weight very quickly back in February and, my hair started falling out 2 months later. I had no idea that poor diet could cause hair loss otherwise I would have been more careful about eating and keeping my weight up. I was just too sick to care at the time. My thinning is diffuse and not noticeable, but I still freak out because after two months of eating well I’m still shedding. I have been told it could take six months before it stops, and I am going crazy waiting. I can’t imagine going through 10 years of what I have only been going through for a few months. It drives me nuts. You are very very brave and must have a lot of inner strenth to deal with what you have been dealing with.
September 28th, 2010 at 12:52 am
This is so terrible. Hair loss is such a hard issue to deal with, I try sleeping on a silk pillowcase, & hair scarves. They are really great hypo allergenic & gentle on your hair & skin ESSENCEOFSILK.com has the best products.
September 30th, 2010 at 2:01 am
Hey there. I stumbled across your blog here while I was looking up info on mineral makeups. But! I can empathize with this problem.
I’m a 36 year old woman, and when I was 21, my hair fell out. It started with just a few strands, and then in short order, I was losing great chunks of my (initially) very thick, wavy, bright auburn hair. I was devastated, to say the very least. At the time, I didn’t have the money to go to doctors (no insurance, part-time work, etc…). My family and ONE of my friends stuck by me; everyone else treated me like I had something contagious. I don’t understand that mindset, even now.
Later on, I had unhelpful doctors, unsympathetic dermatologists (one of whom offered me collagen injections–
“But the amount you’d need would have you blind in a few years”), and a distinct sense of alienation from most of the human race because of something I was unable to control.
Fortunately, I now have a loving and very supportive spouse, a few tight friends who see beyond the baldness, and a slightly tougher hide. I won’t lie– it still stings a little if someone sees me without one of my wigs and assumes that I’ve got a disease, or yell sexual slurs at me. But, you know how it is. You persevere, because the alternative is far worse.
October 18th, 2010 at 12:58 pm
In response to Rhi, did you lose all of your hair? I am headed that way. I have a doctors appointment this week so I will start the dreaded process of trying to figure things out. I was looking at wigs last night because I feel I am very close to needing one. Thankfully I have a loving husband who supports me completely. He asked if I was going to get different wigs and change up :) I think he will have a little fun with the idea :) Anyway, it is still depressing and sad and then I look up causes and come up with Lupus, thyroid etc. etc. So, then you think about the possibility of other health issues. Well, like you said you persevere and my faith holds me together. God knew me before I was born and He knows my last day, so I am okay with whatever happens to me. Thankfully, I can at least put a wig on if I need too so that I can live somewhat a normal life. Thank you for sharing your positive attitude sure does help others see that life goes on.. God Bless.
October 29th, 2010 at 7:09 pm
Hello.I’m a 29 year old female with complete hair loss on the scalp due to alopecia areata,an autoimmune disorder. I’ve been dealing with this since i was 4. I know from experience that people can be really nasty, but like they say what does’nt kill you makes you stronger.There are lots of nice wigs out there-one of my favorite brands is Forever Young. You could also try lace front wigs,they look really natural. Just some suggestions :)
November 12th, 2010 at 5:36 pm
I know wikipedia isn’t a completely reliable source, but I read on there that a side effect of using differin gel(adapalene) can be hair loss. Just thought I might mention this b/c I know Some have used it for their acne/wrinkle regimen.
November 12th, 2010 at 8:05 pm
TC,
Yeah I’ve heard that hair loss can be a side effect from Differin or Retin-A, etc. My hair loss started before I ever used either of those products. However I do use Differin and Renova, so I got paranoid and haven’t used either of them in about 4 months to see if it has an effect on my hair loss. I really don’t think it does in my case, but I am planning on writing about them on my hair loss blog. And taking too much non-beta carotene Vitamin A can cause hair loss, as well as Accutane.
March 24th, 2011 at 4:24 pm
I am 31 now and have noticed my hair thinning for over a decade. I have been wanting to talk to my Dr. about this, but I just haven’t brought it up. I do get my blood looked at every year, and the levels are always normal. It upsets me when I see these women on TV with long thick hair. I remind myself that it’s all extensions. I have been in the army for 13 years, and have to pull my hair back everyday. So I have a lot of brakeage. I have cut my hair short so I wouldn’t have to pull it back, but I also have curly hair, so either I would have to straighten it, or get “hat head” from having a frow then putting a hat on. So anyway, it’s just easier to just pull it back. Have you ever looked at Morrocco Method? I have been using for 7 months. My sister is a hair dresser, so she’s the one that cuts my hair. She said that she can feel that my hair is thicker and can see more hair growing in the front and temple area. It was weird to use at first because it doesn’t foam like regular shampoos.
May 8th, 2011 at 8:23 pm
If it helps, you are not the only one. I don’t use conditioner, I don’t color my hair and I have been trying to stop the folling with rogaine, vitamines, tea, etc, but nothing works. I cry when I shower and see that it gets worse every year and no doctor seems to have a real cure for it :(