More About Spironolactone – Success Story

by admin on May 7, 2008

More About Spironolactone - Success StoryI got an email from Tracy regarding a post she found on another website about a woman writing about her success with Spironolactone, so I’m posting it here for all of you. Thanks Tracy for this great find!

Hey Y,

I read the new story on the front page on the website asking a question on the effectiveness of spiro. I came across this blog entry by someone on soulcysters.com which you might want to post:

I just want to post my SUCCESS STORY here regarding PCOS and hairloss. I know this is something that is so devastating to many of us PCOS women and seems to respond slowest to treatment, so here’s my story….

On December 4, 2003 I went to get highlights and my hairdresser told me I was “thinning” on top. I had no idea. My hair was always long and thick, my pride & joy. Now thinning? Huh??? Sure enough after examining it under bright lights, the crown showed signs of diffuse thinning… I was DEVASTATED. I had the good sense acknowledge that thinning hair on a woman is not NORMAL, and thus there must be an underlying medical condition with was causing the loss. I researched and researched until my fingers were raw, and everything kept coming back to me saying “PCOS unmasked by coming off the BCP” .

I went to many doctors and none could confirm my self-diagnosis. After 4 months, I had gone from “thinning” to downright “Balding”. My self-esteem hit rock bottom, and my weight ballooned by 30 lbs. I was devastated. I was having anxiety and depression which I have NEVER experienced before in my life, and it stemmed from my hairloss. Having great hair had always been my crutch if I was feeling too fat or too zitty, oh well, at least I had this really great hair, right???? Luckily my husband and mother intervened at this point, and to make a long story short, I got into an Endocrinologist who said PCOS right away and started me on aggressive treatment. That was March 29, 2004.

I am quickly approaching my 2-year mark of treatment. I take 200 mg of Spironolactone, 1500 mg of Metformin and I use Nizoral 2% Shampoo every day as a scalp treatment. For anyone reading this who does not know why I add the Nizoral shampoo as a “medication”, I will tell you because I know it has been a part of my success….

OK, so as we know, the excess testosterone that we PCOS’ers make in our body is what causes us to lose hair on our scalps… well, in part it is. That testosterone makes DHT, and when DHT hits the follicles on our heads, it causes our hair to fall out and grow back thinner and thinner until it does not grow back at all (That’s the quick Mickey Mouse version of what happens anyway). On the same token, this DHT is also what causes the fine, vellous hairs on our face and body to start to grow in darker and more “manly”, so what happens on our skin is the exact opposite of what happens on our scalp and DHT is the cause…. are you all with me so far?

OK, so we know that by regulating our IR with Metformin, diet and exercise will lower testosterone in a round about way, and that’s good, but then we can add Spironolactone to help even more, and that’s FABULOUS, but we are STILL going to have SOME DHT on our scalps and on our skin – we can’t avoid that, there is no way to get rid of it completely, so that’s where the Nizoral Shampoo comes in…. OK, so clinical studies have shown that Nizoral will kill surface DHT by 98%, so if you lower it with meds internally and then snuff our any that sneaks past EXTERNALLY, you pretty much remove the causation of the hairloss. So that was my plan. Also, some studies have shown Nizoral to have as much regrowth potential as 2% minox!!! Wow, you can’t argue with those studies!!! Remove the cause and stimulate regrowth. Uh Huh, sigh me up for that!!!!

I have stuck to my plan and my meds for the past 2 years (as at March 29, 2006) and I have been able to regrow 90-95 % of my hair and I am SOOOOOOOO HAPPY!!!!!!

I should have come on here sooner, but I was way caught up on the Spironolactone forum of HairSite, so please excuse this Success Story, as I know most post when they need help at the START of their journey and I’m posting at the END of mine.

On top of growing back my hair, I have lost 25 lbs and have 10 to go, I have completely cleared up all my acne/oily skin, I have regular periods and I feel AMAZING!!!! It took over a year for me to really feel that my hair was back to its normal old self, and now at the 2-year mark, I am CONFIDENT again!!!

(On top of those meds, there was a lot of prayer!!!!)

So if you are feeling really discouraged and think this PCOS is going to get the better of you, PLEASE do not give up on yourself. The meds take a long time to work, and I had some really nasty side effects with the Spiro (nausea, vomiting, diarrhea, bed-spins, dry eyes, extreme fatigue, etc) but the side effects eventually wear off and you will start to have energy and feel good abut yourself.

As an aside note, most studies I have seen indicate that 200 mg of Spironolactone is necessary to effect REGROWTH, and let’s face it Sistas, that’s what we’re all hoping for!!!!! Spiro’s absorption rare in increased by 80% when taken WITH food, so take 100 mg at breakfast (7:00 a.m.) and your next 100mg dose evenly spaced 12 hours apart (7:00 p.m.) with your dinner so you have a CONSTANT, STEADY stream of meds in your system.

Have a good weekend. Tracy

{ 135 comments… read them below or add one }

Jennifer May 8, 2008 at 3:53 pm

Tracy,
Do you take the generic or brand name Spirolactone? I have been on spirolactone for a month and a half 100 mg a day. I also begin using rogaine 5% foam. I had to beg my doc to put me on this drug. Do you think I should ask for a stronger dose? Where do you get that shampoo at?
Thanks

JHayle May 18, 2008 at 5:43 am

I’ve read that Spirolactone causes tumors in rats? How safe is it, especially if it causes all those side effects? Is the concern about cancer causing tumors the bigger one?

Marianne May 20, 2008 at 5:52 pm

I have been on Spironolactone for a year and a half and I do find it helps maintain the amount of hair on my head (rather than encourage regrowth) which I would be happy with if it was safe. I also read that it has been found to cause tumors when tested on rats, and as I have a history of breast cancer in my family, I am considering coming off it. I am also thinking about trying for a baby and I’m worried that it will affect that too. If anyone has any advice on pregnancy and side effects of Spironolactone I would be really grateful.

Amber Lyn May 23, 2008 at 6:33 am

Just a thought ladies. I am on topical spirolactone. I did not want the internal effects from the pill form and I plan on having more babies. The internal spiro can cause genital malformations in male fetuses. I use it in combination with Rogaine. I’ve been on treatment for about 4 months now. The only improvement that I’ve noted so far is that the texture of the hair around my face is returning to normal. I do not feel any increased thickness yet. Anyhow, there used to be a Dr. Lee on the internet that would prescribe it for women all over but he only takes women in this California area now. My dermatologist had not heard of it so I informed her and she prescribed it for me. You just have to find a pharmacist that can mix it for you. Wellness pharmacies can. I hope this helps.

Leah K June 18, 2008 at 11:16 am

My endo gave me spiro for my hair loss. He started me on 50mg a day. I don’t know why I am so sensitive, but it gave my heart palpitations which completely scared me. I would wake up in the middle of the night thinking my heart was going to come out of my chest and then other times I would have chest pains and feel like I couldn’t breath. Weird! My endo said to take 15mg for two weeks and then up my dose to 25mg a day. My question is, should I even bother? I hear it takes 200 mg to help with androgenetic alopecia. I fear I might have a heart attack at that dose. Or, do you think since I am sensitive to it a lower dose might be effective.

Lisa Turner July 8, 2008 at 5:50 pm

I could not take spironolactone at first either, but I started at 15mg and work my up to 200mg over the next few months. I am now on 200mg and it does not bother me at all. I am just wondering how long it takes to help your hair, I have been on it for 3 months and my hair is still falling out.

Lisa

Su July 24, 2008 at 8:27 am

Hi,

I am really excited about this post, I have been on Aldactone, great improvement in my skin but my hair was not improving at all, I miss my hair, it used to be so thick…I will probably up my dose, but i have been off of it for a while now 7 to 8 days and I noticed so much bloating and weight gain…I am very worried about that, as i lost so much weight last year and i do not want to gain it back…also was considering having children…in any case, the reason for my post is to find out why Tracy was on Metformin…what does that take care of…what is IR, would like to learn if I need to add more to my treatment…I plan on adding Nizoral as well to stop DHT in the scalp as she said with the increased aldactone… hope it helps.

Lisa Bowling August 4, 2008 at 6:45 am

Can you follow the same treatment that Tracy follows if you have Androgenetic Alopecia. Where do you find the shampoo Nizoral… Thabk you

Paula August 12, 2008 at 9:36 am

Girls, Spiro can take a long time to kick in so be patient! 4-6 mos is not unheard of and in some women it’s longer.

Chelle November 14, 2008 at 12:31 pm

I was on blood pressure medication dyazide (hydrochlorothiazide and triamterene) for 2 yrs and lost almost all of my hair. I researched alternative meds and found Spiro. I asked my doctor if I could switch meds and have been on Spiro (25mg) for 6 months and my hair has grown to shoulder length and the thinning that I had on the top of my head is filling in, but I still don’t have my hair back 100%. I did have side effects (nausea, diarrhea, major fatigue) which bothered me at first, but the nausea and diarrhea subsided and I started taking a multivitamin which helped eliminate the fatigue. One other thing that I found was that Spiro eliminated my bloating and breast tenderness during my cycle. I read that the med helps clear up acne, but I have not experienced that yet. I still have problems with acne and I’m in my 40′s.

Tammy Thomas November 24, 2008 at 7:37 pm

I have been on Spiro, 100 mg for 3 weeks. My doc also put me on men’s rogaine twice a day and a prenatal vitamin. My skin looks great but hair is still falling out. Sounds like I need to add Nizoral to my plan. This shampoo is available at Walmart or any drug store. Hopefully that will help too. I had to have my electolytes checked when he prescribed it and I have to go back in December to have the checked again. So far I’m having mild to no side effects.

nichoel January 28, 2009 at 5:16 am

ok, so im in germany for the next 3 yrs due to my husbands job and i went to see my dermy about my hair falling out and he ran a root test on my hair and now is telling me i have male patteren baldness which is i guess the same as female baldness? he told me to start using rogaine for women. can anyone tell me if i can use rogaine for men, its cheaper! at this point my hair is just falling out near my temples so i wanted to ask my dr if spiro will help along with the rogaine. now about that shampoo, where do i find that at in germany!!!!!!

Meagan February 17, 2009 at 6:44 am

I’ve been on 200 mg of Spiro for over 2 years, and it does slow my hair falling out, but it doesn’t seem to help stop the thinning or promote regrowth. After reading this about 2 weeks ago I started on the Nizoral 2% shampoo, but I feel like my hair is just thinner! I noticed a bald spot 3 days ago on the very top of my head! I’m only 21 and I’d like to have hair on my wedding day! I’m starting to really worry and wonder if there is a cure.

shar February 20, 2009 at 6:29 am

This is an inspiring story. I started losing my hair in my early 30′s due to undiagnosed thyroid issues. My hair had always been REALLY thick (couldn’t use a banana comb because it would pop open). It took 5 years before the thyroid tests showed a problem and by then my hair was THIN. I am not a PCOS sufferer, but had endometriosis for years before having a hysterectomy which seemed to then accelerate the hair loss. Hair kept thinning and thinning. Today I am in my 50′s and I wear an integrated hair piece to hide the thin hair on top of my head. About 3 months ago, my doctor prescribed Rogaine 5% and Spiro for me AFTER I found the information on the Internet. Spiro is at 100 mg./day. I am noticing a slight regrowth of my hair. Not enough to stop wearing my hair piece yet, but I am hopeful. I’m going to look for the Nizoral shampoo and suggest in increase in the dose of the spiro the next time I go to the doctor. Thanks for sharing that post.

Bonnie February 20, 2009 at 10:40 pm

I read this post and was happy to hear about this success story as I had much the same story and I wish I could read more of them. When I went off of my pill at 37, almost 9 years ago I suffered a massive hair loss. At first I thought it was just telogen effluvium (TE) and it would resolve in a few months….it did not. It went on for over a year and I had lost 50-60% of my hair and it was still falling out ..plus the new hairs were growing in very fine, but my hairloss was diffuse like TE so I went to a dermatologist and had a biopsy and the diagnosis was AGA or female pattern hairloss .

As upset as I was to hear that I new I had to act fast so I seeked out help from an endocrinologist. Since it was a hormonal thing that started the loss I knew it would take something hormonally related to stop it or control it. Anyway to make a long story short – 200mg spironolactone, Dianne 35 and 5% rogaine (2X a day) and guess what? 95-100% regrowth and at 46 I have the nicest hair I have ever had. Long and thick like it was in my 20s I never dream that this would have been possible. This is what I have learned form my experience:
1. Treat your condition early on and be very aggressive as AGA is a very aggressive condition.
2. If you have been losing hair for over 6 months likely you have AGA and not TE.
3.The treatments work if you stick with them but they take time, it took me 2 years to fully recover.
4. Everything has side effects my were very minor but most of the stuff just had an adjustment period no side effects after 2 months.
5. Be prepared for a lot of shedding the first 2-3 months. It is a good thing as it means your hair is going in a rapid growth phase and all the resting hairs will fall out faster to make room for the new thicker hairs.

I hope this helps and even if you haven’t been aggressive to date you may still get some good recovery with these treatments or some of these treatments, if you can take them… just stick with it!!!!

Sandra Vann April 10, 2009 at 1:18 pm

Hello Bonnie,
I have had hair thinning, falling and breaking for one year now. Onset was sudden after an uri illness that lasted for six weeks and lots of antibiotics. Suspect diet and ongoing stress may have played a role also. I also have AGA which has accelerated some as well. Family history with AGA with my mother. an aunt and my grandmother. Do you know if most women who take 200 mg. of spiro experience a significant amount of shedding as you did? My dermatologist told me that 80% on part of my scalp was in a telogen or resting phase. I am extremely afraid of even more rapid shedding going on spiro. Did you consider topical spiro or know if it has the same effectiveness and side effects? Many thanks for your time and feedback. It is so greatly appreciated.
Sandy

Bonnie April 10, 2009 at 6:23 pm

Hi Sandra,

Since I was on 5% minoxidil as well it is hard to say if this massive shed was caused by minoxidil or spironlactone. If so much of your hair is in telogen (80%)then the only phase it can go to next is the antagen (the growth phase). You will shed anything in telogen in several weeks anyway. Treatment may speed up the shedding but it will also speed the recovery. It is a good time to treat as you will prevent minaturization of the follicles if you start early.

Vicky April 24, 2009 at 4:02 pm

Hello Bonnie, So great to hear of your success I am 22 years old and told I have AGA I went to see Dr redmond who put me on 200mg spiro and YAZ bc. I hope to have stabilization. I started two months ago on treatment. My question is how long before you noticed at least a decrease in hair loss? Thank you so much

Bonnie May 2, 2009 at 5:24 pm

Vicky, It took a long time stop shedding 9 months or so and another year to come back, but it will. I was on Rogaine as well and that keeps my hair growing long. If your goal is to get some volume back the YAZ and Spirolactone will work.

Vicky May 8, 2009 at 6:39 am

Thank you so much for responding back Bonnie. I just get so discouraged and I know I have to be patient, it’s just hard when I’m watching my hair fall out everyday. Also, I notice the hair loss more on my temples and slightly on my hairline. Is that how your hair loss is too or is it more on the top? Also do you take Aldactone or the generic? I’m on the generic..I have to see the doc in July and i’m hoping to be able to give him good news if not I think he may give me a BCP with more estrogen like Yasmin which has 30mg instead of the 20 mg in YAZ which may be like Dianne 35. Well thanks for giving me hope to continue on treatment. Hope to hear back from you soon.

Vicky May 8, 2009 at 6:43 am

Also, you are still on all those treatments right? I really wish for regrowth which I know takes alot of time, but first I would just be happier if I can get it to stabilize and just arrest it completely. So that at least I’ll know I’ll maintain what is on my head.

Bonnie May 19, 2009 at 7:07 pm

Vicky, I am still on my treatments except last months I swithed from Diane -35 to Yaz to lower my estrogen as I am too old (haha) for all that estrogen. I also use Rogaine which you are not one which was a huge benefit as well you need it twice a day for the fisrt 2 years and even and can go down to once a day. I am pretty confident you hair will improve treatment it is unfortunalty forever. I am very confident you will maintain your hair with your treatments. I suspect as you caught it early so you will recover hair as well. Patients is the key with hair loss treatments and sometimes it can get worst before better, mine did. Most people just give up please don’t. Anyway if you decide to try it, the Rogaine will increase shedding at first for 4-8 weeks but it also increases growth my hair grows super long with it. Spiro and Yasmin will stop the source and stop the loss. You should do very well with you program. I find 200mg a day is best with spironolactone you may be able to go to 150 or so with the Yasmin and the progesterone is it is like Spiro.

Vicky May 20, 2009 at 11:06 am

Thank you so much for responding back Bonnie, today I just had a horrible day where I’ve been crying all day and can’t get myself to stop. I just feel hopeless and I know I need more patience. Thank you again and hopefully i can post back here in a few months and see a slowing in my shedding.

Yesica May 24, 2009 at 12:29 pm

I am taking Spiro at 200 mgs daily. I have also purchased the men’s Rogaine at my dermatologist’s orders. She insists that I get on birth control. Is YAZ any better with my condition than other birth control pills? I was inspired by Tracy’s story and I went to purchase Nizoral but only found 1%. Is the 2% only available by prescription or did the store just not have any in?

Vicky May 29, 2009 at 10:32 am

Yesica do u have aga? And supposedly yaz is good because its anti androgenic and the 2% nizoral is by pres. Only. I use the 1% but have not noticed any change.

Vicky May 29, 2009 at 10:35 am

Yesica also how long have u been on spiro? Is it generic? I am at almost 3 months and no slow in shedding yet I lose like 50 hairs a day

cheryl May 30, 2009 at 1:48 pm

I have been losing my hair for about a year and a half now, and I didn’t even know it at first. It was so embaressing to have a male coworker ask me what was wrong with my hair. I looked in the mirror at the top of my scalp and almost fainting! Seriously, I still am paniced over this, because even though I have been on 5% Rogaine 2X a day for almost a year, and 100 mg. spirolactone, my hair has still seeming to thin even more. My dermatologist is very conservative, maybe that’s why he’s only prescribing me 100 mg a day. I do want to tell everybody about the only product I found that has made this condition even the least bit tolerable for me – I found a product called “Toppik” with a Google search last year, and it is a very fine powder , in different colors to match the color of your hair. It sounds weird, but honestly, when you sprinkle it on the open scalp areas of your hairs, it adheres to them and actually makes your hair not only feel much thicker, but it covers up the balding hair spots! I got it at a local wig store to sample, then I ordered it on Ebay since then. It’s truly been a lifesaver for me.

It feels good just to know there are others out there who feel the humiliation the way I do. I’m still horrified by this – worried when I’ll need a wig. I’m 49, so I feel even worse for the younger girls. Oh, I was on the BCP for 26 years prior to this occuring, and have been taken off of them since. I wish somebody would have told me about the PCP side effect of hair loss!

sana June 18, 2009 at 5:11 pm

im so happy to have found this blog!!..i have become very very upset and depressed because of the hair loss i have had since the age of 21…i am not 24 and last year i saw a dermatogolist whom prescribed me adelctone which i think is the same as spironolactone..i even went and saw the head of dermataogy in sydney a few months ago, there really is no sultion…im on this medication, pill and rogaine…i am usually in tears and have no self esteem to go out…my wedding is also coming up and cant express how upset i am…am definitely going to start washing my hair with nizroal now…would it be possible to meet one of you ladies from sydney in person to discuss our experiences? i really dont have anyone to turn to speak about my hair loss…im so desperate for some miracle, i hope my prayers are answered

Vicky June 22, 2009 at 12:32 pm

Sana how long have you been on spiro? Has it helped your shed?

CATHY August 7, 2009 at 8:08 am

Finally after 2 years of wondering why i went menopausal all of a sudden at the age of 23 I was diagnosed with PCOS. My OBG didn’t really prepare me to what might come my way. He prescribed metformin in which to my understanding was just to make me regular and that’s all. so when I saw that I was as normal as I can be every month I decided to stop the med. then my hair started thinning but I have always had thin hair so I thought it was just a bad hair day every time. I started getting concerned when ppl started pointing out my scalp with funny jokes. I saw a dermatologist and she just glanced at my scalp and said well it’s just hereditary and sent me on my way. I knew that she was wrong I don’t care that she is a doctor I know my body and hair and her diagnostic approach was just unheard-of. Granted she had a full set of hair she didn’t really care of my worries. So after intense search on the internet I decided that I should have seen an endocrinologist so he can check blood work and help me out with the hormones and all. So at this point my hair down to my lower back but very thin and the crown of my head is noticeable from a mile away literally. It’s been a week since I saw the endocrinologist so at this point it’s a waiting game while I’m balding by the hour; it’s not like I have much more to spare. I check online everyday and every moment I have a chance as if there will be a miraculous magic pill that will give me my hair back or just to reread the facts of AGA and TE. Either way I guess I can just cut it short until then but I’m sooooo mad that I have to cut it. idk what to do anymore! I’m thinking the worst; I just want to crawl under a rock and not be seen till they find a cure for us PCOS sufferers. I think that at the end of the day I just need some reassurance to some type normality. Mentally I am exhausted its just too much to accept when there is not much you can control.

Diem August 15, 2009 at 5:56 am

Sana – would it be possible if I could get your email so I can correspond with you privately? I’ve actually stumbled upon this page via google and as a 21 year old person at Sydney, experiencing intense hair loss and not really knowing why and what to do, your post interested me as I also don’t have anyone to talk about this matter and feel at complete lost and despair as what steps to take like which good dermatology center to see etc. as I feel the ones I’ve been to are unsympathetic to my situation.

Karen August 16, 2009 at 4:37 pm

I have been on Vivelle Dot , 100mg spiro and rogaine. I also have seborrheic
dermatitis. I have been using this treatment since the second week in April. My hair loss has gotten so much worse. If my body hair is also less-couldn’t the spiro be causing me to loss hair on my head too? My hair cutter said my hair is growing more slowly too.

I am so close to getting a hairpiece. I can see staying on the estrogen but can’t the spiro be making it that much worse? I am so upset-all help and info is very much appreciated!

princessadree September 25, 2009 at 2:49 pm

I am 29 years old. I first noticed my hair loss in my late teens. Around that same time was when I began to experience severe acne. At the time, I was preoccupied with clearing up my acne, I never even thought I was beginning to have a hair thinning problem.
For my acne, I was on all kinds of antibiotics and topical treatments but nothing worked. I eventually heard about Ortho-tri-cyclin and asked my dermatologist if I could try it. He ignored my request so I got an new dermatologist and the first thing he did without me ever having to ask was to put me on ortho. My skin cleared up within weeks. Like a dummy I stopped taking it thinking I was cured and that’s when I really became aware of my thinning hair and of course my acne came back, my skin was so oily it felt like someone sprayed my face with popcorn butter.
I got back on the ortho hoping to correct the situation but it no longer seemed to work on my acne and this time around I got scars. After lots of research I came across a book called THE HORMONALLY VULNERABLE WOMAN by Geoffrey Redmond, MD. This is a wonderful book that addresses all sort of problems caused by hormones. I went back to my dermatologist to ask for Spironolatone which was discussed in the book, he sent me to the gynocologist who after much pleading agreed to prescribe it for me and even upped the dosage when I appeared to not be effective enough. Within a month my face was no longer oily. I also noticed that my hair seemed to be falling out less. The book and Spiro has really changed my life.
After reading the book, for the past three years I have been following this regimine: Spiro 200 mg , otho-tri-cyclen continuously for 3 months and then break for a period. This means you only have 4 periods a year. Every time you have a period it causes your homones to fluctuate thus, causing acne outbreaks and hair loss. Less periods means less acne and less hair loss.
Now I have less than 5 pimples a year. As for my hair, the shedding has slowed down but still continues. A month ago, I started a shampoo and serum called Nisim. It’s guaranteed to slow down hair loss in a week and shows results in 4 to 6 months. You have to use the shampoo forever but the serum for about 2 years. It’s made to block DHT on the scalp that internal meds cannot throughly treat. It’s expensive but I’ve found it to be slightly cheaper on EBay. So far I’ve had a positive experience, my hair is definitely shedding less and I’m noticing short spouts all over my head. I can’t wait to see how it will look in 6 months. I will keep you updated. Feel free to ask questions.

kat September 28, 2009 at 1:23 am

Hello. I just went to my gynecologist last week and she told me i had PCOS so it made me think of this story and i told her oh so that”s why my hair is falling out then. She said no that has absolutely nothing to do with it you have enough hair your not bald or have patches (so am i suppose to let my hair get to that point before its a problem??? i felt insulted like i dont know my own body!!! and what its going through!) I was really upset after that because i knew she was wrong and she did not put me on any of the medications you wrote about instead she wanted me to go on the pill she said its the only thing she could give me to treat this (that i completely said no too). I wonder if i should go to the Endocrinologist see if i get a different response? Seriously if it wast for this site i would have just settled for what she told me . What do you think i should do?

Thanks so much for your story it motivates me to take this into my own hands and not settle for this.
Take care much love XOXO

Jen October 8, 2009 at 7:55 am

Hello Kat, as far as seeing another doc, yes by all means go. I was diagnosed with PCOS, at the age of 16, and prescribed Ortho and Spiro. Well the Ortho made me gain weight fast and in a hurry, so i obviously wanted to stop it. Then I just stopped the spiro as well since it made me dizzy. So, 8 years later, I was still having the same problems so I went back to the doc, but this time they had a new treatment called Metformin, so I got that and Ortho and spiro again. I didnt want to take the ortho, for the obvious reason so i just took the metformin and spiro. Well after 7-8 months of taking the Metformin, I notice thinning of my hair really badly, like i can see my scalp under my hair. OMG I thought so I read up on Metformin, side effects wont list hair loss, but it will tell you a vitamin B deficiency… hmmm… thats beating around the bush a little huh. So I immediately stopped taking the Metformin, but I also read that even if you stop taking it that you can continue to not absorb the vitamin because of something… I dont remember what exactly but that was frightening. Ive been taking 1,500% of biotin and B vitamins daily and its not helping. Im afraid that Im still not absorbing these vitamins properly, so I go to the Dermatologist just today and he refuses to do a hair strand test or vitamin blood test, he says the hair test is a scam and the vitamin blood test costs too much money, and they always come back normal. He says its Tologenic Alopecia, or something to that effect, caused by hormones making my hair go in to the rest/fall out stage prematurely causing all this hair to fall out. He says usually it fixes itself, but I dont want to chance it! So all he did was up my Spiro dose from 25mg twice a day to 100mg twice a day. I will have to work my way up to that amount, just being on the 25mg twice a day already makes me dizzy alot. My advice is to definietly see an endocrinologist, they know more about this than a family doctor will, in my experience.

Chrissy October 21, 2009 at 2:25 am

I want spironolactone so badly for my hair loss. I have PCOS (newly diagnosed as of September) and I’ve had hair loss for 4-5 years. My doctor, back when I had health insurance, seemed to think I was crazy and only half-heartedly sent me to the dermatologist, who also acted like me thinking my part was too wide was crazy and he prescribed me a topical steroid treatment. I’m depressed. I’m on Yaz and I’m hoping the hair loss will at least stop, but I’d be lying if I can say I’d be happy to just maintain what I have and not regrow what’s lost. I’m hoping the Yaz will work better once I get regulated because my menstrual cycle is still off. I had a 2 month period and then month one on the pill, it was great, no problems, now month 2 I’m like 2 weeks having my period yet again. I wish it would just stop already and regulate. So I’m hopeful my hair will grow back, but I’m dying for spiro, and Metformin, and I’m obsessively searching sites like Histogen, Follica, and Aderans for hope to grow my hair back. I would seriously give up an organ for donation or something equally major to get my hair back. If anyone has any positive stories with spiro, please post them, because come November I’m pushing for it because I can’t stand having my scalp show through the little bit of hair I have left. Thanks for listening to my rambling, tired post. Lol. I actually feel a little better.

Possum October 23, 2009 at 8:49 am

I was diagnosed with PCOS last year in Sept..
I *thought* that’s what I had for a year or three…but, since my period was very regular *without* being on the pill, I wasn’t certain.
I gained over 100 lbs in less that 5 years…started to grow a “beard”, and was noticing thining hair..the hairs themselves even seem thinner…

I found out that in older women..(I was 47 at time of diagnosis) can sometimes have a regular period with PCOS…you’re either not ovulating, or some other eason, but you still have a normal period (mine was very heavy as well)..

After going to several doctors, begging for help, asking about my thyroid…and being told it was what i was eating…not exercising…normal in getting older (WTF??…at 42?)
I had pretty much given up…
The researched a different gyn…and went to her (my previous was *also* a woman), and was diagnosed with PCOS and Insulin Resistance.

I *know* this is somewhat accurate, because without changing my diet (with was very healthy..I was even a vegetarian for a time in my 20′s, so, I don’t eat junk) or exercising, I have lost near 60lbs so far….
Howvere, hair is still thin texture and quantity..

I was prescribed Metformin and Yaz (actually Ocella..my insurance won’t pay for brand name on that)…
A recent visit to the gyn, she recommended I try Aldactone….
As I’m on blood pressure meds as well..I’m a little concerned, and expressed that to my gyn…
She did phone my BP doc, who said it was OK to take..

I’m uncomfortable taking meds *at all*, but realize sometimes it’s necessary (as in my IR and BP)..

But should I be worried about adding in this Alkdactone….and have you ladies noticed any side effects from it?
Thanks!

Chameika October 31, 2009 at 3:40 pm

Hi Princessadree, for Nisim where did you find the complete directions on using the shampoo forever and the serum for 2 two years. I read just using the shampoo is supposed to be effected. Help thanks

kat November 2, 2009 at 3:28 am

Hello i just wanted to ask if the topical Spiro has the same effects or if anyone has used it? I didn’t even know their was one available .

Billy November 8, 2009 at 6:33 pm

Hey y’all
I started spiro a few months ago and am looking for some advise. Apologies for the long winded background information, but this is my story. I started noticing that my hair was beginning to thin at around age 20 when my identical twin began to see it in her hair. I’d been on birth control (good ol’ orthro tri-cyclin) for about two years prior (she hadn’t), so they put her on it too. As far as genetics go, female hair loss (and hair loss in general I suppose) is in my family on my fathers side, my great aunt wore a wig for a lot of her adult life. After a few months my hair began to shred and shed at a massive rate while seeming to loose diameter in individual strands (is this my imagination?). Fine little baby hairs around my hairline became more prominent. Mostly I’m loosing hair at the top of my head and at the temples. The next time I had an annual I asked my gynocologist what could be done and she put me on a low estrogen pill, a Loestrin equivalent. In retrospect this was not the greatest idea, my hair lost only accelerated. I went back on OTC and went to see a dermatologist. She had some bloodwork done, but my thyroid and DHT came back “normal”, though iron was slightly low. I have always been anemic, even more so than my sister, though much more so when I was a teen. After a few months of regular iron and Biotin and no improvement, she put me on 100mg spirolactone, which i have been taking for about 3 months now. There was never any mention of biopsy, but my family history seems like a pretty good indicator of AA.

The current situation: I am 23 and things are in a steady state of decline. Though the rate of shedding has slowed slightly, mostly because everything that was shredding is now gone, I think, it’s still shedding at an ominously even keel. My sister’s experience is very similar (how nice it is to have control!), so this leads me to believe that any hormonal yo-yoing caused by various birth controls can be more or less ruled out. One would think that hair loss caused by sensitivity to DHT would be dramatically improved by an inhibitor, by thus far spirolactone has done little other than the initial surge in shedding that I have heard some of you talk about. I feel tired, lethargic, and my sex drive has decreased.

The question is, is 100 mg of spirolactone enough for me? Is it worth the side effects? Will I need more to affect regrowth? My iron levels remain low, but not dramatically so. Will this prevent me from re growing my hair? Is it realistic to hope for significant improvement with AA in my family? I find myself wondering if my hair will ever re grow, which is deeply troubling considering more and more of it is gone every day. If this is happening at 23 will I have anything left at 30? 40? I feel very helpless and without hope. What else can I do?

Mimzy November 15, 2009 at 12:25 pm

Spiro is not working for me!
I have been to doctors- endos-dermotologist
my estrogen is normal thyroid normal testo normal
stress normal – I dont have kids . I dont smoke
I dont use recreational drugs I am only on spiro and
estrodial. I stopped drinking diet soda and all soda
completely none for over a year now. No aspertame in my diet
at all…iron levels normal . The only health prob I have is a could
bad teeth.. I had a biopsy and the qak who did it foud nothing. His diagnoses was teglem effluvium – I am cosidering get on fludimide.
I am desperate for an answer ! nobody knows whats wrong, I feel ugly and am considering artifiacial glue on hair I am having suicidal thoughts. Hair is dry all of these doctor I see are so arrogant they get very upset when the dont know. My hair is ugly it is now just a nusance I at the end of my rope and I may shave it off and get a wig. But I dont even want to be in the same bed room as my my mate.

whitney December 7, 2009 at 3:03 am

i am 19 years old and i have had issues with hair loss since my freshman year of high school it seems like…..
i have tried ortho, that did not help. i am now on spyro and have been taking it for about 4 months, but dont see that much of a difference. i am only on 25mg though so maybe i should up my dosage?? im scared to take a high dosage, what if this medication isnt even right for me? ive noticed excessive hair in other places such as breasts and below the belly button..thats obviously not normal. is spyro the best medication to take?? i have such thin and fine hair its embarrassing and i am just hoping to find an answer soon. i am going to start using nioxin shampoo, but if there is any other suggestions out there i would really love to hear them. im just hoping for a miracle!!! ive always had somewhat fine hair, but still a full head of hair when i was much younger. like i said i was about 15 when i really started noticing the shedding. im now 19 and my hair is so thin its depressing…….any advice would be good..

Tara December 30, 2009 at 8:23 pm

Bonnie – my question is for you… in reading your story, mine is very similiar. I am 40 yrs old and stopped BCP earlier this year where my hair began falling out by the handfuls. I also thought this was TE and that it would resolve itself, but it didn’t. I went to my OBG, who put me back on BCP and also prescribed 200 mg of spiro. Based on your story, can you tell me how long it took for the spiro to work, I mean what level of decrease did you see in your hair loss, did it stop completely at some point? Just wondering as I am also using 5% Rogaine mouse 2x daily. Thank you for your response.

Christine Brown January 16, 2010 at 6:49 am

Wow, that’s a great story! I have been living with PCOS for almost ten years now, I deal with thinning hair, belly fat, EXCESSIVE facial hair ( I have to shave daily), and am absolutely emmbarrassed at 34. Like you, I couldn’t take it anymore, and started my spironolactone two days ago…..I am hoping and praying that it helps……

Jel January 29, 2010 at 4:34 pm

I just started seeing a dermatologist about my hair problem. First I’ll tell you a little about myself I am 20 yrs old, I am not experincing extreme hairloss. It is more like my hair stays one length, I have split ends almost half way through the length of my hair, so the ends of my hair break off, I haven’t colored it in almost a year because I figured it would help it, but nothing yet, and hasn’t grown in five years, and it is also very thin. I know this is not as severe as others problems but I am afraid as I age it will only get worse. Anyways my dermatologist prescribed me 25mg of spironolactone. I am going to start taking it firsts thing in the morning, but my question is do you think since In am not balding the 25mg dose should be sufficent to help my hair growth or should I do something else aswell.

Anna March 14, 2010 at 11:53 am

I feel for you Mimy. I feel the same way. I am only 32 and feel there are several contributing factors to my rapid hair loss. Taking bcp and anti depressant/anti anxiety pills is what caused my rapid hair loss 2 yrs ago. I was in such a “high” from taking anti dep’s pills even though I was shedding I didn’t have the where with all to read the fine print that came with the pills. And also dying my hair religiously every 2 months not just the roots — all my hair….no bueno. Now I am paying the price.
I have done extensive research online. Found out that maybe taking Biosil and Ultra Hair by Nature’s Plus, Vitamin B complex, Saw Palmetto…..

jo March 16, 2010 at 3:46 pm

it is devestating how much hair loss in woman can be. Every doctor i see seems unsympathetic and tell you to buy a wig.
I am depressed and dont knwo what else to do. I went to the dermatologist and put me on aldactone 100mg so im going to start with that and minoxidil and see what happenes. i really dont want to go back on the pill but if it will get my hair back ill have too. I jist wanted to have children in the next 2 yrs so i guess i will have to get off the medication and then continue after childbirth. The dermat. said it will be for life that i have to take these medications. this is detramental and soo fustrating that there isnt a cure or something else we can take that is not harmful in the long run. I wish i never started on the BCP Dianne/Yazmin. I wish someone would have told me prior to starting it what the causes would be. i really want to hear success stories, or any advice or anything that can help me or help us all.
p.s- has anyone gone to see a tricholigist?

SAli March 18, 2010 at 11:09 am

Thank you Tracy (and Bonnie) for giving me so much hope! I went to my Derm for severe acne (at 29) and he put me on 100mg of spiro right away, after one month we went to 200mg. I’m still in the 2nd month and now very hopeful. I am not doing anything else because I originally went in for acne and didn’t ask about my thinning hair (which it is)

I really hope that spiro will work. My question is did any of you make diet changes, esp for those with PCOS. I have a appt with my gyno as I have not been officially diagnosed with PCOS, not even sure that’s it. I have been losing weight but now I feel that I should switch to a low-glycemic diet. Anyone try this as well???

Also is spiro something we have to be on forever? My derm said that is sometimes is able to re-set the system, but it sounds like as soon as you go off of it the acne and hair loss continues. Ugh…

Thanks again!

sara March 18, 2010 at 4:11 pm

I have seen a trichologist- they help you understand what kind of hair loss it is but I am not sure if the treatment plan is actually that good. First of all they are very expensive to begin with- all he told me was that I have AGA and I should take Saw Palmetto. I am looking at a few other doctors- naturopath- endo and dermatologist- once i see all of them I will decide which route to take.

Suzette March 20, 2010 at 10:18 pm

Hey there, my names Suzette, I am 21 and found out I had (PCOS) when I was around 16 or 17 years old. I didn’t know that it could caused hair loss until 6 months ago I recognized my hair was getting thinner on top and to the tough. I use to have such long and thick wavy hair. Now it’s thinning on top and flat. At 21 I am losing my hair gained weight and need to get lasers done on my face for the scars acne left. So I totally feel what you went through. I have a question though. How long did it take to see that your hair was getting thicker again? How long were you on it when you noticed it? And does Metfromin help with that? Because I never had a doctor prescribe that to me or even mention it. If it plays a part in making your hair grow back and thicken again then I would for sure mention it to my doctor.

Please get back to me if you can :)

CarChickssr@yahoo.con

susan brown April 3, 2010 at 7:13 am

I thought metformin was for diabetes. I take 200 mg. spironlactone, should
it be taken a.m. and p.m. mine just says 200mg daily. My hair is still breaking and thinning.

Thanks Susan

Pilar April 4, 2010 at 5:23 pm

Does hair loss caused by PCOS happen gradually or does it cause tons and tons of hair to come out?

lina April 15, 2010 at 1:56 am

ive been thinning since i was 19. now 27 tryed rogain but it didnt help only gave me side effects. i dont know if i should try spironalactone. will it work or will it make it worse??

Jen May 13, 2010 at 8:49 am

Hello again everyone, my last post was in October 09. I have still been on my spiro 100mg up fron the original 25mg, although I only take one pill a day instead of two like prescribed. It seems to actually be working, I do still have hair fall out, but its more like the normal amount now. My hair is a little bit thicker, not much, but its growing longer, the longest it has ever been. I have taken several things, so I’ll be honest when I say I dont really k now which one worked, but I will list them for you. Keep in mind, that at first this was not doing anything… it took a while for it to start working I am living proof, patience is necessary. I started this regimen in October 09. 100mg of Spiro 1x a day. Biotin Forte(for the Folic Acid 200%, Biotin 1,667%, and Vitamin B6 1,250%, along with other vitamins all in one pill). Saw Palmetto 1x daily. A Multi-vitamin, fish oil, and vitamin D. I also took Metformin, but as I listed earlier, I think that does more harm than good, it does help you lose weight initially, but after that 20lb or so comes off, thats all you get. It doesnt help hair loss, it makes it worse, and to top it off, the whole reason I was put on it, was to make me have periods, which it did not do. The only shampoo I have been using is Mane and Tail, and Aveda almond something. So out of these things, something is working, I really suggest all of you who are experiencing hair loss, try these things. Maybe you will have the same success I have had.

Dharma May 13, 2010 at 8:01 pm

Bonnie if you are still on this board I was wondering if you’d share how you made out coming off of Diane 35 and onto a lower estrogen BCP. I too started Diane 35 and am 42 now. I realize that my doctor will only let me stay on it for a short period of time (she said 2 years) and I am worried that the hair loss will start again. I don’t use rogaine but I am on 200mg/spiro and daily nizoral 2% shampoo. I’ve recovered a lot of my hair since starting Diane35 but am wondering if I can maintain it on a low estrogen bcp. I really appreciate any feedback you can provide.

Thank you so much in advance.

Pilar May 14, 2010 at 5:50 am

Jen-

That’s awesome that you’re seeing improvement! I’ve been curious about Saw Palmetto. I’ve heard it’s similar to Spiro. How many mg’s are you taking of this?

When you were experiencing heavy hair loss, how much hair per day do you think you were losing per day? How much are you losing now? They say normal amounts are 50-100 hairs per day, but that still seems like a lot.

Thanks!
Pilar

Fadia May 15, 2010 at 9:23 pm

I was diagnosed with Pcos 4 yrs ago but my hair loss started 10 yrs ago if you see my pictures 10 yrs ago and see them now you wouldnt recognise me I have suffered from depression because of my hair and took every vitamin on the planet nothing worked. A year and half ago the doctor put me on aldactone 50mg a day and about a month ago he asked me to increased to 100mg a day and immediately noticed that my hair loss decreased a bit.
do you think that my hair will come back?
Is there any thing I need to be using with aldactone?
Is there an long term side effects.
Because I am happy to be on it as long as it takes.
Waiting for your reply anxiously.

bina July 1, 2010 at 4:18 am

Did anyone here had a problem of mentrual irregularities after taking spiro.I have PCOS and a lot of hairfall.I lose almost 150 hairs a day.I have heard spiro causes mentrual irregularities.has anyone experienced that.I have taken Diane 35 before and had many side effects.So dont want to try any bcp.Has spiro alone without a bcp helped anyone with PCOS

Tammy Cronrath July 2, 2010 at 5:19 pm

I take aldactone 200 mg and yasmin. Started 5 years ago and it took awhile for changes to come. Hair slowly decreased shedding and the terrible oilyness got much better. A total regrowth, no, but something I could live with, yes. With aldactone you must take a bcp because aldactone can mess with your cycle. Breaking the androgen problem means stopping the cycle and getting more estrogen into your system. Sadly, my aldactone stpped blocking the testosterone about a month ago. Hair shedding has returned-though not near what it was-and my hair is oily-yuck! I see Dr. Geoffrey Redmond from hormone help center and during a phone appointment yesterday, he decided that another drug should be used to block testosterone for me as the aldactone just isn’t working now. This is rare though and I am thankful that he has other options. Don’t be afraid to try to try the drugs, the are the ONLY real option for help!

jennifer July 23, 2010 at 9:19 am

i am 41 years old. i started noticing extreme shedding (700 or more hairs a day) when i was 29. doctors for the next 11 years told me it was stress related because my blood work always came back normal. i knew something was wrong and that i wasn’t stressed out. finally, i came across dr. redmond on the internet. i flew to NY. he recommended i take 200 mg of spiro a day PLUS 2.5mg FINASTERIDE (generic propecia). i noticed no one else is taking propecia. if you are not considering having more children, then it is safe to take. propecia is used for male pattern baldness. it works in females only in conjunction with spiro. for the first 7 months, i had normal amounts of shedding. i am starting to experience a slight increase in shedding now, but the dr. tells me to stick with it. i’m hoping this works. i’ve been wearing clip in hair pieces for years and would like to have a head of my own hair again! everyone should inquire about finasteride. if their doctor rejects it outright, FIND A NEW DOCTOR. also, everyone should be treated by an endocrinologist. NOT a gyno, dermatologist, or hair surgeon.
good luck to everyone.

Lisa July 29, 2010 at 3:24 pm

Hi Ladies,

I am seriously crying right now! I am 28, I have gone to about 5 different doctors and they all agree my hair is very thin. But, the only thing they say is to use Rogaine and stop getting stressed. I have gotten blood tests to check my iron, they checked my thyroid, everything is fine. (Which is actaully disappointing because I want to know WHY!) My hair got thin while between the ages of 14-19. Then at 19 it got dramatically thinner to where it actaully became apparent. At one time, it was so thin I could see almost every bit of my scalp. (about age 21) But, some grew back, I have no idea why. Now it is still pretty thin and even though my family and friends wouldn’t dare tell me that. I have a mirror and I can see parts of my scalp. Ecspecially the crown area. It drives me crazy!! It makes me feel so de-womanized and so unpretty. I had to take some the light bulbs out of my bathroom vanity just so I would not be able to scrutinize my hair obsessively. Every time I look in the mirror my eyes go straight to my scalp. Everytime I see a women I think.. gosh if only I had her hair or even a little of her hair. Whenever the sun is shining down real hard, I think, I bet my hair looks really thin right now. I think we need to support! Reading your stories really made me feel more hopeful.
I am trying to self-diagnose my self because I can’t seem to find a doctor that give two ____. I have done so much research but this about the best thing I have found. I got my period when I was nine. I think the hormonal thing makes sense. Can you get tested for this extra testosterone thing?
I am going to schedule an appointment with an endocrinologist according to you all’s advice. I am printing out his article and am going to do everything in my power to get Aldactone 200mg. I am going to the drug store now to get that shampoo.
I need any help I can get on this subject. Please, if you find anything write me. But, on another note, hairloss has caused me a great deal of depression, stress, and loss of self esteem. I believe this subject needs to be brought out to a more public platform. It is very embarrassing to talk about it and there is little information on the subject. I am sure that a lot of women that have hairloss issues that feel as hopeless as myself. So, if anyone has any ideas on how we can attack this issue I am all open ears.
I do not know you all but I love you because I know how difficult this situation is for a women and I know how strong you all are.

Thanks,
Lisa

faith August 2, 2010 at 6:22 am

I was put on spiro about 2 months ago so why is my hairline thinning???? Tons of hair loss!!!!!!!! My acne is all gone and skin looks amazing!!!!!! Anyone having thinning hair on spiro even though I have been reading people are put on it for hair growth???

Mystee August 31, 2010 at 5:49 pm

Hello, ladies. I’ve been a long time forum “lurker” but this is my first post. I just started Spiro in June. I’m 28 and noticed my hair thinning on my hairline around 4 years ago. Doctor thought it was all in my head, dermatologist said the same. After tons of research, I realize my hair thinning is not “by the book” which is even more discouraging. I’ve read so often that women very rarely lose their hairline but that’s what’s happening to me. My hairline has drastically receded and it really affects my looks. It’s thinning all over but the hairline keeps going back and it’s devastating. I finally got to see an endocrinologist in the Spring who ruled out any adrenalin problems or tumors. Is anyone else experiencing loss of hairline and has the Spiro helped. Any info would be greatly appreciated.

aneela October 17, 2010 at 12:14 am

Dear tracy,

We also have AGA in our family. I suffered from it all my life and now my beautiful 18 yr old daughter is going through it. We are also facing the reluctance of doc,s in prescribing SPIRO… the endocrinologist i spoke to advised me to stick t0 100 mg for 3 months and see results…my daughter weighs 54kg. i want to add Diane 35 to complement the ANTI DHT effect….alongwith nizo and minoxidil….

your response will be encouraging….

aneela.

Colleen November 1, 2010 at 7:41 pm

Hello,
I have been experiencing hairloss from the age of 14. I think it was stress induced. Well now I’m 28. At 24 I was pregnant with my first child and my husband insisted that I have a protein soya shake everyday twice a day. I noticed that my hair became very thick and long. I thought it was due to the pregnancy. When I was pregnant with my second child I did not take the soya protein shakes and noticed that my hair became even thinner then it was before my first pregnancy. I went to a dermatologist who put me on 5% minoxidil and on 100mg of spiro. I saw results within weeks. I went and did further research on soya and hair growth and found that there was a connection. I have added soya to my diet once again. So for those who have not had success with the medication I suggest adding soya protein. It soya contains a type of phytoestrogen which my act as a type of blocker of DHT.
Hope this helps

jenny November 5, 2010 at 7:06 am

I am new to this site, I too have been losing my hair at 32. My doc thinks i may have pcos. He is putting me on yasmin to sort out my hormones. He also thinks it may help with my hair loss. My androgen i guess are high. Does anyone have advise on this drug? Any help would be appreciated so much. I have been soo sad.

Victoria December 9, 2010 at 6:34 pm

Hello everyone. The stories here are so distressing, but yet hopeful. I’m 52 and started experiencing moderate hair loss about 3 mos. after taking the lowest dosage Prempro for hormone replacement therapy. After about 3 mos., I switched to patch Estradiol and a pill form of progesterone. A couple of mos. later, I noticed excess hair shed which wasn’t normal. It was so distressing. I don’t have unusually thick hair but it was long and looking nice. I went back on Prempro at a slightly higher dose, thinking I needed more hormones, and it got worse. I finally went to an endo. Blood work -all normal. I’ve been on spiro 25mg for about a mo. now, and my endo will slowly increase up to 100mg/day. The thing is, my hair was perfectly FINE until I went on HRT. It took about 6 mos. to really see my hair was abnormally shedding. I am so afraid to shampoo or comb my hair because I see hair coming out. After some online research, I’m wondering if it’s the progesterone that caused all this as estrogen is supposed to be so good for hair/skin. My endo will probably prescribe Propecia as I don’t have kids and am in postmenopause. I just can’t believe this is happening. I so appreciate all of your insights and feelings – we’re not alone.

Cheryl December 24, 2010 at 8:46 am

All of this sounds great, but what do you do if you took a blood test and testosterone levels were on the low side of normal? I am guessing no PCOS since I don’t have the high testosterone levels. I have tried Spiro and didn’t really notice it helped, but then again, would I actually want to lower my testosterone any further,,,I already have no sex drive. Where do I go from here. I had a biopsy of my scalp on the top where hair was really thinning, thinking it was female pattern hairloss due to high DHT. It came back as traction alopecia, I rarely pull my hair back tightly, I rarely style it, I don’t perm my hair, I color the gray with no ammonia color every 6 wks,,,,I don’t get it. And of course, I have all over hair loss too not just at the top of my head, where the regrowth is gray hair!! I seem to be an enigma, if anyone can help me figure this one out, please comment. I have tried nizoral and rogaine 5%, saw palmetto,,,you name it. Thank you!

victoria December 27, 2010 at 6:29 pm

Hi Tracy -

THANKS for the encouraging success story. Very helpful and hopeful. After 2.5 months on Spiro, my hair loss has greatly reduced. Am praying for some regrowth now. Am on 200mg and Nizoral and other local DHT blockers. Any other advice ? It’s so slow…

Pelin December 28, 2010 at 10:00 am

hi, sorry for bad english, ? am from Turkey and 33 years old. My doctor said me i am PCOS in july. My hair is shedding a lot now. I used diane 35 and androcur 2 months and have to stop because ? lost nearly 50% hair in my scalp. when ? use them i saw some regrowth but after ? quit ? didnt see any new hair. I have to stop it because i changed my doc and mey endo says dont take all my medicines. I changed my endo again with no luck :(

Now I am using 2000mg metformin and yasmin. When i use just yasmin my shedding was slowed but see no hair . After i add the spiro(aldactone). I use spiro in 200 mg in a day, After i used it my shedding is increased terribly :( when i use just yasmin i lost hair nearly 150 in a day now 200-400 in a day.

I am totally confused after i start to spiro ? have dread shed :( I dont know it is a very bad thing or not? I dont have any idea that will i see any new hair in my scalp? How much time i need to see any new hair? Or Will i loose all my hair for using spiro?

Do you have any idea for it? I appreciate for your answers.

(My doc gave me 100 mg in a day but ? used 200mg aldactone, ? know it is bad :( )

Gemini January 3, 2011 at 8:48 pm

Hello ladies,
your testimonies and struggles have given me a renewed feeling of hope . I feel as if I may find a possible treatment for my receding hairline. I’ve been loosing hair since I was 27. Over the last 13 years I’ve yet to have any treatment other than rogaine which caused me severe headaches and acne. I was prescribed spiro but never used it for fear of lowering my already low blood pressure. My mother and maternal aunt also suffers from the same hairloss pattern. I find it haunting how their hairlines are so far back. There has been times I fall into a deep depression imagining how I will eventually look to me and the rest of the world. Any of you suffer from a similiar hairloss and experience a break thru?

brittany February 2, 2011 at 11:53 pm

Hello ladies,I have read over some of the stories related to this article and I have seen a vast amount on info- I’m happy to find that there are so many women taking the issue into their own hands and doing research and going to doctors.Through research we will find a cure.
I dont care to get into my entire hairloss story here-
to keep it short it started 2 years ago,i started with very thick hair.
the cause of mine is still unkown because i havent seena doctor or dermatologist due to the cost-
but I have been self medicating and doing what i can. I feel that I probably have PCOS – I have hair coming in on my chin ,thinning all over my head and infertility.To treat the symptoms of PCOS IE HAIRLOSS I have been using supplements which include a DHT blocker.Before i was taking the DHT blocker i was trying to use a multivitamin,biotin ,flax and fish oil to solve the problem.I later heard that fish oil and flax can make you produce more androgens and testosterone so i quit taking those.I found shin men DHT blocker after scouring many reviews. I have been taking it for about 4 months now ,which is the recomended time before you see regrowth.
I noticed within the forst 10 days of using it that my shedding had decreased a lot. I was a hair counter! I went from losing about 20-50 in the shower to only about 4-5 hairs and then later on only 1-3. I’m not good about taking pills so id miss one every so often ,if i miss it more than a few doses i notice increased shedding.Anyway – Id be bald by now if it wasn’t doing something.Ive now invested in shen min faithfully in hopes that it keeps working.Im also researching stronger DHT blockers .In addition to the dht blocker i take 2-4 capsules of elements for hair and every so often take a saw palmeto extract pill which im thinking of increasing to daily use.Taking a whole food energizer multivatim and mineral is good too. I have some promising regrowth in the frontal hairline,some thick hair hairs growing where normally are baby fine velus hairs.

Maz March 13, 2011 at 3:48 pm

Hi Ladies,
I have just ordered Saw Palmetto from Holland & barrett to give that a go. I was on Dianette for 10 years and the doctor forced me to stop 2 months ago. I am so so scared that my major hair loss will come back as it is so thin already. I have PCOS since I was 15 if not before! I am trying Mycrogynon to at least get some estrogen in my body but was wondering does anyone know if it interferes and stops the BCP from working? I was thinking of asking for spiro but ideally if i can try BCP+Saw Palmetto herbs=Beyonce style hair??!!!! :O)
Its so distressing isnt it? I honestly dont think other people notice it as much as we do as it is all consuming. My Partner has never mentioned it to me. Our bedroom is very dark but i still try and make sure I wake up facing him so he doesnt have to look at my horrid bald scalp in the morning!
Please let me know how you are all getting on, you have to know it really helps me to know that others are going through this. For anyone in the UK, the Lucinda Ellery studio’s are supposed to be amazing and if I was to get married i would look into getting her extensions for a month or so as she specialises in this sort of thing.

From your experiences would you recommend Saw Palmetto or Spiro?
Like I say I have ordered the Saw palmetto but was considereing asking the doctor for Spiro..hmm…

Maz March 13, 2011 at 3:49 pm

Sorry I meant to say above does anyone know if Saw palmetto or spiro interferes with the BCP, I missed that out!!!

Carrie March 23, 2011 at 8:15 pm

Hey ladies!! I thought I’d share my story with you and hopefully this will help with your concerns. I too am losing my hair at a drastic rate and my hair was never really thick to begin with.
It all started in Jan of 2010 when my dermatologist put me on 100mg of spiro. to treat my cystic acne. Within 2-3 months I noticed a huge difference in the amount of acne on my face. YEEEAH! :-) I did notice that I was extremely tired and my daily chores were becoming more and more difficult to accomplish, but my skin was starting to look great!
I use to have weird almost, cystic like acne in my scalp as well, and that went away too. By the 5-6th month I was getting compliments on how full my hair looked and at this point never knew that Spiro was also used to treat hairloss.
By August of 2010 my hair was GORRRRGEOUS!! I have never had my hair this long and FULL!!! My hairline was lower, I noticed my eyebrows (of all things) growing back thick as well. It wasn’t until I actually did my research online about Sprio that I learned it helped in slowing down hairloss.

So, in September of 2010 I went off Sprio ladies…yes I went off it with the permission of my doctor as I told her it was making my Ulcerative Colitis flare up. I had gorgeous hair and skin, but I was bleeding a significant amount through my rectum. Again, Sprio has been known to aggrivate the bowls and in my condition (Ulcerative Colitis) I should not have been on it.

Since September 2010, my hair has been shedding drastically. I have lost about 60% of my hair and a hair specialist I went to agreed with me that there was alot of hairloss. His recommendation was…SPIRO, but because I had a bad reaction to it he suggested topical rogaine and that was it.

I am at the point where I am considering going back on SPRIO because of this hairloss. I am so depressed because of it, I feel like an ugly little troll with acne and thin hair. lol. I really think going back on SPRIO is the best thing at this point since nothing else will work and just upping my Ulcerative Colitis Meds.., because seeing my skin and hair gorgeous 6 months into taking Spiro was so worth it. I will keep you guys posted on my progress. Try Sprio at 100mg ladies. If its too much you may just need to alter the dosage with the help of your doctor.

I hope we can all feel good about ourselves finally again.

Carrie.
Vancouver, BC,
Age 32

Lina March 23, 2011 at 8:28 pm

Maz,
How much Saw Palmetto are you taking daily? Does it have the same side effects as Spiro?

If anyone has any information about Saw Palmetto, please let me know! Thanks!

Daisy April 1, 2011 at 4:46 pm

Will you need to take Spiro for the rest of your life to avoid shedding?

Vics May 21, 2011 at 3:54 am

I’m 25 and have had hair loss for the last three years, though it only became noticeable a few months ago. At that point I decided to get a hair system put in (I’m in the UK) before the hair loss became too noticeable. Even with thin hair, that looked ok as long as there wasn’t a gust of wind and if I washed it everyday and put dry hair shampoo in it, I felt too self-conscious, and did this as a preventative measure.

My doctor absolutely refused to put me on spironolactone too, and although I was on dianette for a couple of months, I found it made me extremely depressed and put on weight, and was not really worth the effort.

It’s always been my dream to go and teach abroad though, but now I feel stuck in this country because I need to have my hair system tightened every 6-8 weeks, so now I feel I need to take measures to improve this.

Does anyone buy spironolactone from an online pharmacy, without prescription?

maz May 31, 2011 at 11:35 am

Hey Lina,
Sorry about the delay I have not been on this site for a while!
I am still taking Saw Palmetto, 4 capsules a day, 2 in the morning and 2 at night and so far things have been ok.
I have noticed hair loss in the last few weeks though and am nervous the shedding is starting again since my doctor made me come off Dianette 5 months ago.
I am hoping the Saw Palmetto will work but I will go back to my doctor in a few weeks when my current contraceptive pill runs out. I think for peace of mind I would like to go on Dianette as the Microgynon is giving me bad headaches and I am struggling with weight.

Fingers crossed! If not I may try Spiro.

Lina M. May 31, 2011 at 12:44 pm

Hey guys,
I’m so glad a lot of you have seen results on spiro. I saw Dr. Redmond a month ago and he prescribed 200mg of spiro and Yaz BCP. So far I haven’t had any side effects, but its important to remember spironolactone acts as a diuretic so you need to drink lots of water to keep from feeling fatigued and dehydrated. I really recommend you all to read Dr. Redmond’s book which explains a lot of female hormonal issues including hair loss. I’ll post my progress so we can figure this thing out. Also, I noticed some of you mentioning that getting off birth control caused your shedding, thus the birth control is the culprit. I asked Dr. Redmond about this and he said that this is false. The birth control was what was helping your hair remain on your scalp, so if you hadn’t have been using the BCP you would have seen your hair shedding anyway. Moral of the story is that many women who have AGA and don’t know it get off the pill and then blame the pill for the hairloss. The large downward spike in estrogen for someone with AGA can case the shed. So actually the pill is good for your hair. I hope that made sense.

I’m 23 years old and I started noticing my hair shedding when I was 19 or 20. I have less than half of my hair left and it is devastating. I’m just holding on to hope now.

K June 1, 2011 at 6:07 am

Lina M. I do believe your dr is very wrong is advising that BCP does not cause hair loss. BCP messes with your hormones which governs your hair and everything else in your body. There is absolutely no clear cut science to hair loss especially in women. There is a huge rise in women’s hair loss and I do believe beyond a shadow of a doubt it is due to BCP. I have been to 5 doctors one a renown hair loss specialist who is incredibly passionate on the subject yet he still couldn’t diagnose my hair loss. I believe he is completely incorrect in making that statement to you. Read Jessica’s and Sara’s (another one) hair loss stories and recovery it completely contradicts his statement. This response is to his inaccurate and guessing game statement. I would not want his “theory” to influence someone unsuspecting. Thank you.

Lina M. June 1, 2011 at 8:14 am

K,
Sorry I should have been more clear. You are right that BCP can cause a hair shed, but it shouldn’t cause hair loss that over 10 or 20 years never gets better. If this happens, then its most likely its androgenic alopecia. ANY drop in estrogen (i.e. coming off the birth control pill, having a baby, perimenopause) can trigger a shed. But, if its not getting better over time, and you are losing volume because hair isn’t coming back in the places its falling, then its probably androgenic alopecia. A lot of women are misdiagnosed because their hormone levels are within the normal range.

Obviously I’m not a doctor, just a medical student now. But, who knows, this hair loss thing is tricky! Thanks for helping me clear that up!

Lina M. June 1, 2011 at 8:28 am

sorry should have said “getting off” a BCP can cause a hair shed**

Lina M. June 1, 2011 at 11:49 am

I should also add that some BCPs have a high androgen index, so that can cause hair loss too. BCPs like Yaz are anti-androgenic, so may help with androgenic alopecia.

Pilar June 2, 2011 at 12:26 pm

Hello,

K is absolutely right and thank you for clarifying Lina.

I was on Ortho Tri Cyclen Lo for 9 years, went off the pill and everything was fine. I was pill free for 2 year with the beautiful, long, thick hair I hadmy entire life. Then I tried Yaz for 2 months and due to some unpleasant side effects decided to go off. 3 months later I was losing over 300 hairs per day (and yes I was counting). My shed lasted for 10-11 with the first few months being the hardest and slowly tapering off. I did see some fluctuations but now I’ve been shedding normally for the last 6-7 months and seeing lots of re growth. ALL forms of hormonal birth control have a possibility of causing hair loss, whether it’s when you start, during or when you stop taking them. I saw a total of 7 doctors and 2 during my hair loss and ALL (except one – the dr. that prescribed the pill) agreed that the pill was the culprit. One of them was even rude enough to point out that it was clearly listed in the leaflet that came with the pill. And please remember that even though some of these pills (ie Yaz, Yasmin) are prescribed to help with AGA, there is still a possibility of a shed when starting or stopping.

Pilar

Pilar June 2, 2011 at 12:27 pm

*7 doctors and 2 Derms during my hair loss.

K June 3, 2011 at 4:49 am

Pilar, so good to hear from you! I sent you an email to the account you had given to someone on the comment list to see how your were doing about two weeks ago but figured the account was closed. Just wondering how you are. While I have tremendous growth I still shed absolutely nothing like the shed of TE the ropes, but more than I would like. Mine was triggered by severe long term allergy to hair dye. I just couldn’t put it together as to what was causing mine because the derm said the burning and itching was from the TE brought on by stress and the dye wouldn’t burn while it was on my head only did I figure it out when I realized my hair would get worse every time I dyed it by keeping a journal. Anyway my head was on fire and red, so I do believe there is long term damage. The hair specialists I’m going to now, says whatever has happened your body is trying hard to repair itself, but who knows, I’m still losing it no matter. Please let me know how you are doing.

Lina M. June 3, 2011 at 11:14 am

Ahh sorry didn’t mean to cause trouble! You are all right about BCP causing hair to fall out, what Dr. Redmond was saying is that unfortunately in some women, when they get off the pill and lose their hair, it might be more than just a drop an estrogen that’s causing it– especially if its not getting better. He has seen a lot of women like this, so I wouldn’t want anyone to wait years for it to improve, when they might have androgenic alopecia, which doesn’t get better without treatment. Since the majority of the discussion here was about spironolactone and AGA, I was just mentioning a very specific case– the problem with only looking at BCP as the reason for hair loss; could be AGA too.

K, I’m really sorry to hear about this dye allergy. Do you know of any other women who have this, or have seen improvement? Have you seen an allergy immunology doctor to see exactly which ingredient caused the damage? Because you may be using products with this same chemical in it.

I’m really glad you’ve improved Pilar! After having all these issues, and talking to inconsiderate/uncompassionate doctors, I’m seriously thinking about becoming an endocrinologist when I’m done with med. school. I think we all need more doctors who can put themselves in our shoes!

K June 3, 2011 at 12:33 pm

Lina M. believe me this has made me wish I was a derm that specialized in hair loss as I want to help every woman in the world with passion and compassion. Yes what triggered mine is PPD in hair dye (it is black rubber mix) it created sensitivity to everything. It received allergen of the year in 2006. All the derms say that dark hair dye is the harshest as it all contains this chemical and it makes you sensitive to everything. I can only use baby shampoo now and Johnson and Johnson to be exact; It is high in alkaline and I put one baby aspirin in the bottle to balance the PH and bring down the alkaline because the aspirin is acidic. I’m sure you know this from being in med school, anyway that is my story. It took me a year to figure it out all the while my head was getting worse with each color. All the hairdressers saying well we are putting the most gentle on your hair all the while me not thinking I could actually be allergic, duh! It took me a year to figure it out and it took a year for my scalp to calm down. My derm could find no treatment; it was as though my scalp was raw and every ointment they tried exacerbated the problem. And steroid shots cause atrophy a true nightmare to say the least. It just took time but there is no way that my follicles are not damaged. I would sit with ice packs on my head, run cold water on my head, etc….just to get moments of relief. They did a study on it in Italy and 4 out 7 patients suffered hair loss due to allergies to PPD. They say it is not permanent if caught in time but I would say mine wasn’t. I wish you the best and thank you for clearing things up.

tasha July 15, 2011 at 9:26 am

I jus started taking spiro I hope it helps I’m so sad all the time now and don’t like gettin up in the morning because I know ill see it fall out. I’m only 21 and I don’t wanna be sad anymore..

Jen T July 27, 2011 at 6:47 pm

Hello everyone!

It is so amazing and reassuring to hear that there are others going through the same thing as me. I just want to start by saying a huge thank you to everyone who had posted. I am a virgin to these postings but not any more!
Just to give everyone a little history on myself..To be quite honest I am not at the same stage as most of the women here. I am 25 and I used to have thick thick hair. About 3 months ago I believe it started thinning. I and others only started noticing the severity of it about a month ago. My hair has thinned to about 1/4 of what it used to be. For someone who used to have such thick hair, this is devastating (especially in such a short period of time). I just recently started looking into treatments I can do for myself when I found this site.
I was diagnosed with PCOS about 2 years ago and my endocrinologist told me the only treatment was the pill. She did not give me a specific pill to take. My GP has me on Yaz and I have been on it for about 1 year and a half.
I would like some opinions on as to whether my hair loss is due to Yaz and if I should get my doctor to switch my prescription… Please I welcome all opinions.
I am also very interested in trying the Spiro treatment. I am willing to try anything and I would like to stop the hair loss before I don’t want to socialize anymore. I am already having trouble maintaining my weight and I think it is all connected. I was wondering if Spiro is a prescribed treatment only from a doctor or if I can purchase somewhere? If I can purchase it, does anyone know where I can find it? I live in Quebec, Canada, and I am not sure how to go about finding.
I really look forward to any feedback anybody can give me. You are all such amazing women, inspiring, and motivating individuals to me. Thank you all for being a part of my support group. It is not easy to deal with a situation like this and knowing there are others going through the same thing is so reassuring.
Thank you.
P.S. Does anyone have any thoughts about getting a wig? (If it ever came down to that)

Lacie July 29, 2011 at 1:28 pm

Hi everyone!
Just letting you know this is going to be long only b/c I want you to know every detail so I can hopefully get some advice that helps! Thank you.

Wow, I would have never known how many women my age are going through the same problem with hairloss as me! I felt like I was alone with this problem for the longest time. I’m 21 and I started noticing my hairloss 2 years ago. I was on the birth control pill Yasmin since I was 15 and the reason I started taking it was because I had really bad menstral cramps and a very heavy flow. I had no problems taking Yasmin at all, it cured my horrible cramps and everything. I didnt have any hairloss from it at all. Then all of a sudden out of no where about 2 years ago when I was 19 I noticed my hair falling out alot in the shower. So after that I became paranoid and was examining my hair in the mirror for hours at a time! Thats when I noticed on the top back part of my head where Ive always had a colick (however you spell that) I could see my scalp. That freaked me out and from then on it’s just been falling out persistantly for the last 2 years. My hair is now very thin and I have noticable spots where my scalp can be seen right through my hair! I have to wear my hair up every single day to some what cover up the bald spots! I long for the day when I can wear my hair down and have it be normal again…

After I started noticing my hair falling out drastically I tried to think as hard as I could to figure out what could be causing this, and I did remember that after about 4-5 years (when I was 18/19) of being on Yasmin I went to pick up my refill from the pharmacy and noticed that it was no longer Yasmin but the generic version Ocella. A little while later I remember asking my gyno if I could switch to a lower dose of the bc pill because I thought maybe it would help me lose some weight. So I switched to I believe it was called Loestrin FE but I was only on it for about a month or less and then decided to switch back to Yasmin.

Well after deciding to switch back to Yasmin, I went to the pharmacy to pick it up and it was ANOTHER generic verson of Yasmin called Zarah. And I stayed on that for about a year and a half. And then thats when I starting noticing my hair falling out.

I didnt think anything of it (switching pills and getting different generic brands)…until now. Could this be whats been causing my hair to fall out DRASTICALLY!?

Thats what I thought was the reason but then I went to the doctor and he told me it was stress and not my bc pills. I was SO confused because I wasnt stressed at all! I couldnt think of any time that I was overly stressed or even a little stressed. I was perfectly happy and fine. The only thing that caused me to stress was the fact that MY HAIR WAS FALLING OUT! I was so upset that all he could tell me was that I was stressed. He had me get a TON of blood work done (8 viles worth!) and everything came back normal (thyroid, iron levels, full blood count, everything).

So from then on Ive felt entirely HOPLESS and was doing anything and everything I could do in my own hands to get my hair to stop falling out and to grow back. Vitamins, sulfate free shampoos, iron supplements, everything. And of course got no results and my hair is still falling out. By then I was stressing out very badly, constantly thinking about my hairloss! To the point where I have absolutley NO self confidence what so ever! Every morning I wake up for work and cry as I put my hair up and look at it in the mirror getting worse and worse every day. My hairloss has pretty much RUINED my life. I cant have any fun with my friends, Im 21 and cant go out and drink with my friends like I would love to do! I had to drop out of college because it was ruining how I felt around alot of people. I have the toughest time just going out in public period! I dont stay stuck in my house 24/7 but when I do go out and do stuff Im not happy and feel miserable. I have really bad anxiety now and I feel like everyone is starting at my hair and thinking about how hideous I am. I do not feel pretty at all anymore. I cant remember the last time I was truly HAPPY! Its so upsetting and I feel completely lost.

Recently I broke down and had a really bad panic attack and I didnt show up to work. I called my boss and balled my eyes out on the phone and told her what was going on with me and that Ive been keeping everything inside and hiding how I really felt from everyone. She understood and that same day I went to see my doctor. He then prescibed me anxiety medicine and took me out of work for a little over a month so I can get myself together and figure out whats going on with my hair. This was just about a week ago.

I do not take the anxiety medicine because I’m paranoid about side effects. I will note that when I went to the doctor the first time about my hairloss he prescribed me depression medicine called Citalopram (however you spell it) and I also did not take that because once again, I was afraid of the side effects and I didnt want to think that I needed a pill to make me feel better. I wanted to get better on my own. To this day I still havent taken any anxiety/depression meds. Im starting to wonder if its gotten to the point where I really should take them. Still dont know, just feel hopless.

**I just got back from the dermatologist and she basically looked at me real quick and said I have AGA and I should start using mens rogaine and take the med Aldactone. So came online to google the med and found this site.
Im really upset because first of all, there is no history of AGA in women on either side of my family, not my dads or my moms! My dad has balding but thats NORMAL for men. So Im totally lost and confused. I honestly DO NOT WANT TO BELIEVE that I have AGA. It literally doesnt make any sense! So now that Ive read all the results from that medicine I definetly dont want to take it. I cant afford to lose any more hair!

All in all, Im wondering if anyone is in the same boat as me? No history in the family of AGA but yet still having hairloss…Im just looking to see what I can do next. Because at this point I do not know what to do. The doctors arent helping. I just want my hair back!!!
Thank you to whoever reads this all and replies back. I would greatly appriciated it! I need any advice I can get…

Lacie July 29, 2011 at 1:39 pm

Oh, I forgot to mention that I am no longer taking any birth control pill. I’ve been off Zarah for about a month. I want to see if it will make a difference. So far I havent noticed anything, still having hair loss at the same rate.

Lacie July 29, 2011 at 2:53 pm

Colleen,
Im really interested in the soya protein shake you are talking about. What is it called? Where can I get it?
Thanks!

Linda September 26, 2011 at 2:05 am

I hit perimenopause after my third child at 43; my hair has been shedding/thinning for 5 years. I have tried lots of vitamins, hair tonics, iron tablets, progesterone cream but once the hot flushes kicked in, saw my GP who suggested I try HRT. After reading Dr Redmond’s book (which I would recommend as it is extremely informative), I asked for an estrogen patch and natural progesterone tablets. Due to research on my part, I asked them to prescribe 100mg Spironolactone, which I have now increased to 200mg. They were reluctant to comply initially saying the most they could offer was a fitting for a wig but I dug my heels in and am now 4 months into this treatment. I have definitely seen an improvement. The shedding has just started to slow down and the texture of my hair is much improved. I cannot begin to describe the relief this has given me. I feel that this combo suits me and I have my old sparkle back. Long may it continue. I plan to stay on it for at least 12 months (Spiro works over the long term) and then will re-assess from there. I would urge other women to give it a try and to not give up hope. I know how hard hair loss can be and its impact on those around us. It’s great that there are sites like this so we can share stories with other women and help one another.

Shorty September 28, 2011 at 2:33 pm

I read ur story and the meds arent helping me plus my stomach is now getting bigger it has been 4long hard yrs. It’s swollen do u have that and hurts what abt that I alittle over 200 but my stomach looks like 200 plus body weight is this normal with pcos??? I dnt think soo can u give me some advice plus the metformin made my stomach huge.

Sandra October 13, 2011 at 6:16 pm

I’ve been reading all your stories and in a way I’m happy that I’m not the only one with these struggles as it often feels that way. I have been taking Metformin for about 10 years for PCOS and it really helps regulate your cycle and at least stopped any more of my hair falling out (but it is really thin on top). I was initially put on this to help me lose weight when I was trying to get pregnant and I’ve stayed on it – you CAN take Metformin while pregnant. Prior to taking Metformin, when I went off the BCP, my cycle was pretty much non-existent. It does take your body a month or two or three to get used to it – so you might get stomach pains and other horrible affects but it is worth sticking with it for a month or two. I’ve only just started taking Spiro 25mg essentially for my blood pressure and hopefully to reduce body hair and increase head hair. I have got some some side, so it is good to see they usually subside after a while and I will have to remember to drink more. My fingers are crossed that this works for me and all of you. :)

Julia October 22, 2011 at 3:43 pm

Does anyone know if ortho tri cyclen is antiandrogenic?

Drita October 24, 2011 at 7:35 pm

All my test results are normal, with slightly elevated testosterone. I had multiple large cysts in my ovaries, and a history of acne, oily skin/hair and for the past 3-4 yrs my hair has been falling out. I saw a reproductive endronologist who put me on spirolactone 100mg twice a day, in addition to the BC i was already taking. Spiro worked like a miracle for the first 3.5 months, but for the past 3.5 months my hair is falling out again, its oily and so is my skin. It seemed to stop working! I saw a gyno who recommended metformin, however, my endocronoligst was highly against it. He recommended waiting another 4-6 months. I started crying, so he instead wanted to prescribe an anti-depressant, which I refused. He finally agreed to give me metformin, at a lower dose than the gyno recommended. Still, I was unusure about it since he wasn’t recommending it. I saw a 2nd endocronologist who prescribed me 5mg of finasteride, once a day. He said he recommended that over metformin, especially since hair loss was my main concern. Now, I’m not sure which to go with. BC+spirolactone+METFORMIN, OR BC+spirolactone+FINASTERIDE. Does anyone have recommendation of medication AFTER spirolactone STOPS working? (also, the bc im taking is natazia which i was switched to last month)

mariemartin000@hotmail.com November 25, 2011 at 3:59 pm

I just wanted to say thank you to all those that leave comments. My doctor has just emailed me about going on spironolactonet. I didnt actually go to her about thinning hair or acne. She mentioned it to me….so its great to see your world of knowledge.
Marie

Melanie December 11, 2011 at 7:21 pm

Hi, I’ve been losing my for almost 13 years. My endo put me on spiro about a month ago. I’ve been noticing EXTREME shedding for the past week 1/2. I don’t understand this I tought spiro was supposed to reduce hairloss. I’ve stopped taking it and I will call my doctor. Have you experienced the same thing. Is it possible it gets worse to get better? I also tried to take diane 35 or yaz but it makes me sick. Any suggestions? Thanks.

pat December 26, 2011 at 1:32 am

please what dosage of spiro should i take to reduce the growth of facial hair

letherbuck68 December 29, 2011 at 6:55 am

This thread has been soooo interesting and it seems to just go on and on. I have been researching hair loss for the past couple years. I am into natural health and don’t like putting any chemicals into my body. With all chemicals there are other side effects. I try to avoid them at all costs. There is a vitamin sold at most pharmacies, made by different brand names called “Hair Skin & Nails”…good to look into. I am also a firm believer in the DHT blocker Shin Min. I don’t think anyone has mentioned this but, younger and younger girls are having these problems. I believe a lot of it is what we are eating. We have changed our eating habits over the last 20-30 years. No more homecooked meals. Now we eat boxed, processed foods. All the milk and animal products we eat have growth hormones in them. We see now what that has done to our bodies and what we have passed on to our children through birth. I might give this spiro a try, but I have had pretty good luck fighting hair loss and skin issues with natural supplements. I love Shaklee and Nutrilite vitamins and supplements. The protein shakes are a great idea. Your skin needs protein to feed cells. Another great resource is the “Anti-Estrogen Diet.” A book, only about $15. Teaches you how to cleanse your system of the bad hormones and start fresh. Last year I lived by that book and had great improvements in skin and hair. Then, got lazy and went off of it for while…not a good idea. Need to get back to it!

Ely January 16, 2012 at 12:10 am

Hi, I’m new to this site. I can’t believe so many women are going through the same problem I’m dealing with. I have PCOS and was given Metformin but it only gave me bad diarrhea.
Have started using Propecia 1mg daily, have been on it since May of this year. So far I’ve noticed less shedding and a little growth. Was told by the dermatologist it takes about a year for new hair to start growing.

I am considering flying out to New York to meet with Dr. Redmond. I’ve read a couple of his books and feel he is the only one who can help me. If anyone is being treated by Dr. Redomond please let me know. Haven’t read good reviews on him or his staff.

Good luck to everyone.

Brenda February 13, 2012 at 11:16 am

Ely,

You mentioned you’re taking Propecia and you’re noticing less shedding. Did you have a dread shed when starting Propecia? I would like to start Propecia but wasn’t sure about how well it worked for women. I am 39 and been using 5% Minoxidil for 5 years. I go thru periods of shedding and regrowth most recently though just shedding and not as much regrowth my hair feels thinner. I would like to add Propecia or Spironolactone to my regimen. Has anybody tried LLLT therapy (Low Light Laser Therapy)?

Maddie February 15, 2012 at 4:11 pm

Hi there,

Does anyone have any suggestions for alopecia areata? Would you suggest the same treatment? Im desperate!

Thanks, Maddie.

Sophie April 6, 2012 at 2:41 am

Hi All,

This is Sophie.. I am 31 years old… and have been facing issues with weight gain, facial hair for past some years now but my hair and skin has always been very healthy… After I turned 30 last year… My health is all over the place.. I had severe acne breakout.. and also started losing hair like crazy !

Its encouraging to read that various medications and treatments are working for you all. I have been diagnosed with PCOS and have observed a severe thinning since past one year. My blood tests results for testosterone etc were normal but my ovaries were polycystic in the transvaginal ultrasound. I was prescribed Metformin 500 mg x 3 times a day with a multivitamin (containing biotin). My doctor told me not to go on pill because my menstrual cycle is kinda regular.. I have been using minoxidil 5% lotion once a day since past 2 months now and metformin since past 5 months now but there is absolutely no improvement in my condition. My hair loss continues and the quality of my hair is pathetic now. I am so very confused.. What else can I do ? Should I start taking contraceptives ??? Will it help??? My doctor says that there is no point in taking contraceptives if your menstrual cycle is regular… I need some serious help… I cant keep on losing my hair like this !!!!

Thanks,
Sophie

nami April 12, 2012 at 4:32 am

hi all,

i also have similar story….after leaving diane 35 ,which i took for only 3 months i started noticing hair fall…first i tried all the home remedies(im frm india)but nothing worked….when i would get up or wash my hair around 100 strands would be every where….aftr trying iron n multivitamins with which nothing changed..i started going into severe depression when i went to see an endo….she priscribed aldactone 200 n bc ..cause that causes irregular bleeding..anyways after 3 months i noticed that my hairloss was much lesser…60% lesser..but as i wanted a child i went of it…got pregnant..meanwhile the hairfall was back…..after 6 months of feeding and much lesser hair..i went back to aldactone and yasmin….but this time ..i can see hair growth..but the shedding is really bad…..im scared…all i think of is my hair..as that was the best part of me…..im always irritated….i dont want to go anywhere..i keep collecting the fallen hair…..n counting them….its been 4 months and the shedding i feel is only increasing…..i was 29…when it started n now im 32…….what will help me….

Anna April 27, 2012 at 2:29 pm

Please take into consideration that Spiro is a diuretic! That means it will make you lose vitamins and minerals BIG time. When you take it, your doctor should tell you to eat plenty of veggies and fruit and to take minerals, but you should be careful about foods with high potassium level. Spiro spares potassium and doesn’t eliminate it from the body. 200 mg of Spiro is very likely to make you dizzy because you lose huge amounts of nutrients when you urinate. Also, the lack of Magnesium, B vitamins and Calcium is undoubtedly going to make you depressed. Since Potassium will stay in your system more than usually, you should look into the side effects of that as well. I just started taking it and although everybody takes 100mg at least, I only take 25 mg daily as I do not want to mess around with my health.
Spiro is a testosterone inhibitor, therefor it will naturally make you have less “hormonal hair” on your body. Hormonal hair is facial hair, pubic hair, armpit hair, chest hair, mustache and a few other places. This means it’s not meant to make the hair on your scalp go away, nor your lashes or eyebrows. I hope this helps a few people, as Spiro seems to be a wonderful medicine, but only if you take it wisely.

Lexy June 20, 2012 at 5:18 pm

Have you guys had your ferritin checked? My hair started thinning and the doctor checked my iron and saw it was normal, but my ferritin, which is your iron stores was at a 26. He said we want to get up to at least 75-100. I read 1/3 of women have some kind of hair loss due to low ferritin. He gave me multigen plus which i believe is 150mg of elemental iron, vitamin c, b12 and folic acid. After a couple months, I got it up to at least 100 and my hair has stopped thinning and falling out.
Just a thought if you haven’t considered that. Hope its able to help someone.

Sarah K. July 9, 2012 at 4:54 pm

Hi there everyone, I feel for you. Today is an awfully difficult day…crying at work, won’t talk to anyone, and avoid conversation at all costs. I work for ‘airport security’ so wear a hat to work (baseball cap) and end up looking like a boy. Like you all, I couldn’t stand the sheading, so I buzz off my hair now, I’m not looking for constant signs of improvement all the time and wasting time in the mirror. My scalp burns, and I used to have super thick curly dark long hair my whole life up until 27 (29 now). My loss started with bumps on my scalp (was super stressed at this time and not eating right) the derm gave me pointless topical steroid ointment that did NOTHING. After the bumps showed up, I noticed my hair falling out severely by the hundreds. I noticed more loss on the left side and top, still to this day that’s how it is. The Dr.’s tested my hormones I had a little low vit. D, lowish progesterone and a little high testosterone, normal iron all the time, but low-normal. Low-normal thyroid too. Anyway, June of 2011, my scalp started burning, I tried an antibiotic for a month for the bumps too, it helped, but they come back when I’m not on them. During this time, I also had an undiagnosable sinus condition, pain and post nasal drip (still to this day) that antibiotics don’t touch, and tried a month of 25 mg. SPIRO… noticed no change. The burning kills me, I HATE it it’s been here for a year, I’ve completely changed my diet to mainly vegetables, seeds, almonds, no dairy, no grains, no gluten… acne cleared up since I’ve been on antibiotics (doxycycline, flagyl, ceftin) for suspected chronic lyme disease, but not much help in the burning or thinness areas of my head. God help us all, as I’ve been suicidal over this, pushed all friends and family away, and don’t socialize at all now… just work, home, gas station, grocery store… that’s it. I see all these other women that have the hair I used to have, and remember those days. One thing I haven’t seen mentioned is CANDIDA. I don’t know if I have PCOS, as my weight is low now, but I don’t eat any sugar or processed foods now, but do put on weight quickly if I eat more. Candida is a nasty little yeast that is normal in our digestive tracts, but gets systemic and causes many, many problems if the immune system is comprimised (as in most ppl with PCOS). It takes over, and could be the cause of some hair loss. Anyway, I’m working hard, have spent so much money on diet, doctors, naturopaths, etc. it seems endless and I want to drive off a cliff and end my life sometimes, because this is litterally hell. Now, in addition to the antibiotics, I started 50mg of Spriro. prescribed by my derm. at the University of Colorado. The scalp biopsies don’t show scarring, but that’s all… they did a microscopic hair analysis, and said the hair looks good, only 1 miniturized hair, which is normal. However, I’m left with no real reason, severe depression due to this, and bruising, and feeling alone and unwanted, etc….. it’s awful living like this. Some say, ‘be greatful for what you have’ and I just think, you have no clue… yes, we’re grateful for mobility, and bladder control, etc. but I want to be myself, an effective human being. What guy out there would want me now… I feel hiddeous, and am tired of trying. Thanks for your posts, I hope the best for you all, if I ever get improvement, I’ll post again. -Sarah.

Brenda August 15, 2012 at 8:25 am

Sarah – I know exactly how you feel as I have had this for 6 years that I was aware of it. I tried Minoxidil which worked wonders but always had periods of high shed (yearly). Please don’t feel suicidal or push away friends and family. I know I do this too. The Minoxidil started to not work so well a year and a half ago. Recently I bought my first wig and have been fitted for two human hair wigs. I am not thrilled with this but want, as you do, my life back as it was. It’s not happening with treatments as I see not everybody is too successful. Grab the bull by the horns. You’ve already done such a huge step by buzzing your hair short. Beautiful wigs can be glued on so you don’t have to think about your hair for weeks at a time. For your burning scalp I have heard Benadryl (oral medicine)and Nizoral shampoo work. I have not tried either and I do get the burning but just try to ignore it best I can. Maybe your hair will grow back maybe it won’t but either way you’re working on your future not stuck in the wait and see. You don’t have to stop treatments just keep working on it and see if you can make yourself feel better by trying wigs.

Sarah August 16, 2012 at 6:36 am

I haven’t been diagnosed with PCOS as yet, but i have an appointment with doc on monday. My story started 30yrs ago i’m 45yrs now. When i was 15yrs i basically stopped having periods, even though i had started menstruating since i was 12yrs old. My GP put me on the pill.In my late teens my hair started thinning. GP sent me to a clinic in Edgbaston. They said as my maternal grandfather lost his hair in his 20′s it was one of those things go home and have a perm to make it look thicker. I was devestated. I wouldn’t talk to anyone about it. I got married to my childhood sweetheart and a year or so after when i was 27yrs decided we wanted a baby. I came off the pill and never had a period for nearly a year. I was gived Clomid and got pregnant. Since then i’ve lost weight but still suffer acne , have 5-6 weeks between periods and am wearing a glued in hairpiece. I just about cope with how i am. But now my 16yr old daughter has been losing her hair. She has bad acne and can also go 6-7 weeks between periods. I am finding this even more devestating than my own issues. I saw an artical on PCOS and it seems to fit what we’ve been dealing with. I am desperatly hoping she can help my daughter at least before her hair gets as bad as my own.

Marie November 28, 2012 at 5:08 pm

Hey girls,
I am really hoping that someone on here might be of help. I’m 23 years old, and have experienced some devastating hair loss this year at my hair line and temples. I had terrible acne in my teenage years, and was put on accutane when I was 17, which worked miraculously. While on accutane, I was on a birth control pill for a few months. Within a few months of ending my accutane treatment, I started to notice some hair growth on my neck, and plucked out a hair or two and ignored it. Within a year and a half, it was growing enough to warrant tweezing and bleaching. These days, I pluck once a day, and I had really lost patience by about April of this year. For the first time, I was brave enough to talk to my doctor about it, and she ran some bloodwork, discovering that my free testosterone levels were a little higher than usual, and sent me to the gyno. The gyno then put me on Junel Fe birth control, and I immediately noticed some hair loss. She lowered the dosage, and I figured that I just had to wait a few months for the hair loss to subside. I hadn’t experienced any hair loss prior to going on the birth control, but my hair on top (in front, in the center) has gotten so thin that I’ve been panicking. My periods have always been fairly normal, however, and I am not obese, although weight is always a bit of a struggle. I went to an endocrinologist and dermatologist very recently and was put on spironolactone beginning a month ago- first at 25 mg 2x a day (so 50mg), and was just put on 50 mg 2x a day (so 100mg). I have an appointment to see a trichologist, but I am just terrified of what’s happening in my body. My hair (which used to be incredible thick) is just barely on the top of my head these days, and I am very frightened about what I can do when/if I lose any more. The endocrinologist thinks PCOS may be the diagnosis, but as I do not have all the classic symptoms, he has been hesitant about the diagnosis. Do you ladies have any recommendations for a birth control that is PCOs friendly? Any recommendations for hair loss and dealing with it? I am also wondering about my long-term health plan, as I was hoping to have kids someday. I can’t imagine that being on birth control and spironolactone for the rest of my life is a solution. Thank you so much to anyone who has read this far and responds.

Meghan December 3, 2012 at 2:46 pm

I too have been recently diagnosed within the last few years with PCOS after over ten years of run arounds with doctors who shrug off the hair thinning to stress. It took some real time to find a doctor to help out and listened to do blood work tests. After finally finding a doctor who at least listened to me, now retired this year. So I am back to what feels like step one all over again with new doctors, some who are now second guessing my diagnoses, which has been making me want to curl up in a ball and just cry. I am newly into trying to find solutions other than birth controls pills that haven’t help the most upsetting of the symptoms. I am starting to notice hair growing in places that it shouldn’t while shredding in places it should be. Did/does anyone else suffer from this problem and did any medicine help to at least stop the bad hair growing? I’ve been trying to find a doctor I trust, which hasn’t been easy. It’s hard to open up to talk about the hair problems that I can kind of hide when my hair thinning is becoming more noticeable. I am looking for options and was wondering if anyone has looked into Hair Transplant options? I know nothing about them, but seem to keep finding commercials for them for women.

Lexy, I noticed your post and also was just told I have low iron and was told to get a supplement but it is Ferrous Sulfate more regular iron, not Ferretin. Did your doctor say if there is a difference between them? I wanted to ask also if it took time to notice any improvements.

Kathy December 13, 2012 at 12:06 pm

Hi everyone,
I was diagnosed with PCOS when I was 18 years old. Symptoms include some vellus hair on chin and face, thin hair/male pattern hair loss; slightly overweight/difficulty losing weight. Also, I am of Asian descent.

I am now 24 years old, and I still have not accepted my thinning/loss of hair. While I’ve maintained my current weight within last 5 years, I’m still slightly overweight. I do get a couple pimples on my chin every month but I’ve gotten used to it. I think the only thing I occasionally get depression over is the hair loss.

I just wanted to say that I feel for everyone who is/did struggle with PCOS symptoms, as well as everyone else dealing with hair loss/acne/infertility etc. You are not alone and I hope that we all can find ways to cope with the stresses/struggles.

My doctor had prescribed me Spirolactone for hair loss, so I will try it out and update everyone on my experience. Best of luck to all of you.

amber January 21, 2013 at 8:49 am

Hello everyone, I’m 21 and a mother. I have been having this thinning hair problem for a very long time, since about 13 years old. It’s very stressing because of course there are spiteful woman out there that like to call names so I have been called a bald bitch more then once. Though I have hair its just very thin on the top, I don’t want my son to be embarrassed of me when he gets older. :( either way I have been on Spiro for a long time now, 200mg a day and I don’t feel like there is any improvement at all, they said it was hereditary for me but nothing seems to be working. The worst part is I see that my son who is two years old has slightly thin hair as well. So any other idea to help me out please o

John January 31, 2013 at 1:25 pm

Hello: I am going to explain my experience and hope it can help others. I am a male with standard male pattern baldness, crown then front. I have tried many products with no significant success. I am now in my 50′s and thought I would try one last thing. Since I have always known that hair loss is 99% hormone related, I believe that hair needs a certain amount of estrogen as food, or stimulation to grow. About 2 years ago I bought some Ortho tii cyclen birth control pills. I started taking a 1/8 piece of pill per day. In about 3 weeks I noticed my hair growing faster. I then increased to 1/4 pill per day. Within a month or so my hair was very noticeably thicker, and I was getting comments about how thick it was. But in about another month I started to notice inflammation in my armpits and weight gain in my mid section. I would have continued but I could hardly put my arms down without them falling asleep. I had to stop. Eventually the swelling went down to normal and may armpits are now not swollen. But I am now convinced that hormone therapy would be the answer. If a woman took a 1/8 birth control pill per day it would likely stop her hair loss and reverse it. Don’t get greedy like I did and try to increase the dosage. Just 1/8 pill per day. I don’t know what side effects it would cause but likely they would be less in a woman. I hope this information helps someone.

camille February 26, 2013 at 4:09 pm

I read this post when it first appeared and was so very hopeful. I got myself on 50/mg of Spiro daily. It’s been a while…I am pretty sure it worked. Add to it a D3 supplement and I stopped worrying about my hair. But, recently, I noticed a vision change…one that has been recorded as being possibly caused by Spiro. I’ve had to stop taking it…and am now back at square one and waiting to see if my vision returns to “normal”. But, I will tell you I hated the choice of either going blind or going bald. Now, I’ve got to try something else…and hope for the best.

Kip March 8, 2013 at 7:06 am

John thank you so much for posting your experience. I’m so sorry you experienced the bad side affects.

jen April 14, 2013 at 9:41 am

does anyone here know that Spironolactone is the generic name for Aldactone and is a diuretic for control of water retention…..

Aud June 7, 2013 at 1:40 pm

Hi Jen. Yup! My dermo, who suggested Spiro when my scalp biopsy came back positive for female-pattern baldness (my dermo takes Spiro as well!), explained to me the history of the drug. That’s why all Spiro patients should be drinking plenty of water, cutting down on foods high in potassium, and getting their potassium levels checked every few months. It’s nice that I don’t carry much water weight anymore, lol. It’s been almost a year since I started Spiro, 100mg/day with food, and my hair is growing back…slowly and not to the thickness it was prior to my major hair loss shed, but it’s growing. It’s a slow, painful process. I also have Lupus, which sometimes accelerates the hair loss (yay me!). I’m also on Rogaine 5% foam (for men) and many vitamin supplements (including iron and D3, per doctor’s orders). I also totally changed my diet and lifestyle.

I wish everyone the best, heartfelt luck on their quest to regrow their hair. I encourage people to get their iron and vit D levels checked, among others.

Pam June 8, 2013 at 7:38 pm

Greetings, I have lived with alopecia, pcos and thyroid issues for 35 years now. It is not a surprise to me that there isn’t much knowledge in the medical field and a lack of research concerning issues of female pattern baldness. So many of us are left to research our issues and suffrage; yet it is so comforting to share our issues this way knowing there is so much commonality. There is not a lot of empowerment to resolve what to me feels like an unending suffrage battle. It is an isolated secret that we live with only few knowing about the wig we wear. The hardest thing was wondering if this secret was worth so many years of keeping under wraps. There are stigmas and lack of acceptance in society. There were times I wish I could just be bald and free of trying to keep of secret. There were times I wondered how women such as Dolly Parton and others wore many different wig styles and they seem open and happy. Where I felt I had to wear the same wig, color and style to prevent others from finding out. I have grandchildren and you know I had to have private rooms and wear a hat at night for the reason of being bald. Summers were hard whisper lite wigs look unreal where the heavier wigs sported a likeness to your scalp and like some of you shared we sweat in wigs that is for sure. Wish there was a conference for women like us to build awareness and self-esteem. I have had a long time to get used to my predicament but going bald to become completely exposed in that way gives away the idea that perhaps that person has cancer. I have considered scarf head fashion but I am not sure that it is cool to wear in summer even though it offers a fashion appeal. Privacy is a real issue with me. So you see for as long as I have struggled with my issues I wonder if I will finally experience freedom?

Ellarae June 21, 2013 at 3:21 pm

Greetings, I have lived with alopecia, pcos and thyroid issues for 35 years now. It is not a surprise to me that there isn’t much knowledge in the medical field and a lack of research concerning issues of female pattern baldness. So many of us are left to research our issues and suffrage; yet it is so comforting to share our issues this way knowing there is so much commonality. There is not a lot of empowerment to resolve what to me feels like an unending suffrage battle. It is an isolated secret that we live with only few knowing about the wig we wear. The hardest thing was wondering if this secret was worth so many years of keeping under wraps. There are stigmas and lack of acceptance in society. There were times I wish I could just be bald and free of trying to keep of secret. There were times I wondered how women such as Dolly Parton and others wore many different wig styles and they seem open and happy. Where I felt I had to wear the same wig, color and style to prevent others from finding out. I have grandchildren and you know I had to have private rooms and wear a hat at night for the reason of being bald. Summers were hard whisper lite wigs look unreal where the heavier wigs sported a likeness to your scalp and like some of you shared we sweat in wigs that is for sure. Wish there was a conference for women like us to build awareness and self-esteem. I have had a long time to get used to my predicament but going bald to become completely exposed in that way gives away the idea that perhaps that person has cancer. I have considered scarf head fashion but I am not sure that it is cool to wear in summer even though it offers a fashion appeal. Privacy is a real issue with me. So you see for as long as I have struggled with my issues I wonder if I will finally experience freedom? – See more at: http://www.womenshairlossproject.com/hair-loss/spironolactone-success-story/#comment-515517

Lala August 13, 2013 at 7:44 am

Hey everyone, I just wanted to say I have PCOS and was put on 100mg Aldactone and nothing else at the age of 22. My hair has been thinning since I was a teen so imagine my joy when I saw that it’s regrowing!!! The top of the head is still thinner than other areas, but nothing like it was before. I started the meds back in July, so after 1 year of spiro, the difference is clearly seen. A friend of mine called my hair LUSH. :) I’m not saying it’ll work for anyone and I’m still scared it’ll stop helping one day, but don’t waste any more time, go to an endicronologist and get on spiro. 100mg works too, it worked for me. Good luck!

Jessica September 28, 2013 at 11:42 am

Hi I have the same symptoms and i have pcos too. I am just on 150 mg spirnolactone and i was on 1500 mg metformin but I recently just got off of it. I’m not sure if I should get back on. They also want to put me on birth control to regulate my periods. Are you on birth control too?

KB October 2, 2013 at 6:19 am

I took a lot of time reading this thread this morning. I wish I had found the site a couple of years ago. Very helpful, supportive information.
I just turned 40 and have been fighting hair loss for the last 8 years. There is a history of AGA in my family and I now know – after many years and tons of tests – that it is the major source of my hair loss, however the amount of hair I’ve lost was exacerbated by a few years of untreated hypothyroidism, which also runs in my family. Once the thyroid issue was finally addressed, the loss I’ve experienced has been steady with the quality of my hair getting progressively worse – brittle and thin.
I didn’t start aggressively treating the AGA until a year ago after seeing a hair transplant doctor for advice. I didn’t have any luck finding a GP, derm, or GYN who would even talk to me seriously about my hair loss once the thyroid was stabilized. The transplant doc wouldn’t put me on any prescription medications but recommended 5% minox foam, a special vitamin combo with saw palmetto, a topical treatment he sells to improve scalp health, and LLLT or Low Level Light Therapy. I haven’t seen any posts about this form of treatment so I thought I’d weigh in with my experience.

I was super skeptical about the LLLT but was desperate to try something and see SOME sort of improvement. I started all the above treatments at the same time and, one year later, there is significant improvement in hair quality and some increased quantity/volume as well. None of the treatments is a magic bullet and all require long-term commitment but as a combo, I did see some results. I’ll need to keep the entire regimen up in an effort to maintain. For the LLLT, I started with 4 months of twice a week appointments in his office. I purchased a Groupon which happened to pop into my email box as I was struggling to decide whether to try it or not. It helped to make the treatment affordable. After 4 months, I couldn’t keep up the appointment schedule so I purchased an in-home helmet to use. It looks ridiculous but has provided about the same results, at least helping to maintain. I have recently noticed that there is a lot of advertising for laser combs which can be used as well but seem like a lot of work.
I just started on a low-androgen index BCP, first time in my life, however I wish I had known to start earlier. I might have been able to slow my hair loss using this type of internal hormone adjustment at a younger age. Although my hair loss has been significant and I’m starting the fight too late to recover much volume at this point, I have 3 daughters and will continue to gather as much new info as possible to help in their fight. Thanks for all the experiences you’ve shared here.

a October 30, 2013 at 6:03 pm

as i am writing this, im close to ending my life. ever since my hair fall started, i lost confidence big time. i feel so unpretty, im always depressed. i don’t want to look in the mirror and get my picture taken. it made me so self conscious. all i could think of is my hair loss. ive tried all- minoxidil, almost all topical solutions, i take so many supplements, i think i have them all. complete from a to zinc. lol but nothing works!
im really close to giving up. i cant bear to see myself like this. this thread gave me a little hope though. yesterday i tried taking spiro. if this wont work, i think nothing will.

Lala November 9, 2013 at 8:22 pm

a, just keep at it. Spiro takes at least 6 months to see regrowth. Something will work, and if not, it’s not the end of the world. You can still live a long and fulfilling life, hair is not everything. Be grateful it’s not an arm or a leg.

Jaclyn November 19, 2013 at 6:26 am

I just found out I have pcos and am considering taking spiro I am 22 years old. Please feel free to email me and let me know how spiro and dealing with pcos is working for you

Sheila March 11, 2014 at 6:26 pm

It’s so nice to hear about your success story! I have also had success with Spiro. I am a 36 years old female, and have thinning hair due to genetic hair loss. I don’t have PCOS or extra testosterone in my system. Even though I have normal hormonal levels, my hair follicles are super sensitive to these hormones, so the hair on my face and body grow in thicker, and the hair on my scalp is thinning. But I’ve been on Spiro for 7 months now, and the results have been AMAZING! I started out at 50mg for the 1st month, then up to 100mg for the 2nd month, and then to 150mg which is where I’ve been for the past 5 months. It took 3-4 months to start noticing a difference. My hair hardly falls out anymore and it’s growing so fast! I used to loose around 100 hairs a day or more (which is a lot when you don’t have much to start with and you’re trying to recover some density), and now I only loose around 10 to 20 per day. It’s also growing like a weed! It’s never been this long in my life, and I am so thrilled! I stopped using Rogaine because of all the itching it caused. I use Nizoral shampoo sometimes. But I feel that Spiro is what made all the difference for me.

Vee April 21, 2014 at 9:53 pm

Hello girls its great to know im not alone. I just turned 21. I don’t know why I am losing hair. It has been going on for 5 months now and my doctor first said it was telogen effluvium. At first this was believable as I did have a lot of regrowth. But slowly the regrowth at my temples would keep falling out and growing back thinner. I take orthotricyclen (5 years) and for the 5 months I’ve been shedding I notice it is more aggravated when I start a new pill pack and slowly decreases towards my cycle and sometimes stops during my cycle. The doctor now thinks its my birth control. I went to my gyno and she suggested YAZ right away but I declined because I hear so many bad things about it (such as hairloss!) she then said I could stay on my current orthotricyclen and add Spiro which I have started today. You always hear about low androgen pills such as orthotricyclen helping hairloss but I think after 5 years of being on it that it is the cause of it. I read somewhere about too much estrogen turning into dht or something like that. I really hope the Spiro helps. On top of that I am taking Hair Revive by Ridgecrest Herbals, vitamin D3, and crill oil as well as blackstrap molasses. I wish I had never went on birth control. I would honestly rather have horrible cramps and mild acne than hairloss. My boyfriend wants me to get off the pill (not to get pregnant but for my health) but I worry about the side effects I know one day I would like to be pill free but am putting it off for now because I am scared and want to enjoy my early 20′s which I only got to do for a short amount of time before my hair started thinning. For my 21st birthday I just went out with my boyfriend but was too embarrassed to bring along a big group of friends. Some days are better than others. It just sucks and I wonder if it is karma because before this happened I was aware of how beautiful I was and was overly confident and a total snob about it. Now I am on the other side of the grass and I swore if I ever regain my looks I would not act that way

Vee April 27, 2014 at 10:29 pm

This is Vee again I have another thing to add. I see that I am thinning the same as a person with androgenic alopecia but neither me or my mother believe that I had it in my genes. My mom has thick black hair like Cher and she’s 55 and my dad has the same blonde hair texture as me but he has no receding hairline or thinning whatsoever. My dad has 3 brothers who all have their hair and my great grandma just passed away at the age of 101 with a full head of hair. I really think the birth control and possibly elevated cortisol levels has caused extra DHT to kill my follicles. also, this all happened so fast. 5 months ago my hair was beautiful. I didn’t have any type of thinning not even at my temples. I say the cortisol levels because the same thing was going on with a family friend who was getting annoyed with her husband and her cortisol was slowly building and building. she went to a hormone specialist, changed her birth control to something with LOWER estrogen, and started acupuncture. Now she has all her hair back. I experience the same thing as her but with my boyfriend. He annoys me, angers me, upsets me but I usually take a deep breath and calm myself down. I just found out that this is very unhealthy to calm yourself down when your angry or upset. It will build up cortisol levels. Your supposed to release your adrenaline if you can. Even if that means screaming at your boyfriend to shut the F up and punching a pillow and crying. If you can’t do that then you should get daily exercise which releases cortisol. the best type of exercise to do this is pilates. Running actually raises cortisol I read.

also fingers crossed for this spiro. It has been exactly 1 week now for me and I am hopeful. currently taking 50 mg and working up. I like to hear success stories about this medicine.

Anat July 17, 2014 at 10:35 am

Hi guys my name is Anat im 21 years old and I am experiencing the worst time of my life. I feel hopeless and sad and just always questioning what the hell is going on here. After my 20th birthday a couple of months in i noticed my pony tail much smaller..I didn’t think much of it. That summer though i was partying a lot and not sleeping and going to work very early the next morning. Than a couple of months went by and my hair was getting thinner and thinner. Apparently this has happened to my mom at my age as well. She got pregnant and than all her hormones went back to normal and she never had a problem again. Although at this age..i just cant get pregnant i have to finish school get a job get married and than have a baby, its not as simple as it was before. I have tried everything to everything. From creams, to hair vibrators, to even acupuncture every freaking day and nothing seems to be working. I went on birth control and spironolactone yesterday and this i feel like might be my last hope. I have high leves of androgens, but my estrogen is fine. I am very skinny and fit and the only thing i left that i feel confident about is my body. But my beautiful hair that i once had just keeps on falling away. I am glad im not the only one who wants to die. I just have no desire to do anything any more. I feel so sad all the time i feel bad for my mother who is so worried about me. Some other doctors told me to take this steroid called dextamasone, but i cant take steroids for the rest of my life. I am literally only 21 years old!!!!!!! I AM A HEALTHY GIRL

Anat July 17, 2014 at 10:37 am

Also Vee, how hsa the spiral been workin for you? Its been a couple of months now since you have written. Any progression?

Leave a Comment

Join the Women's Hair Loss Project Network to meet other women
with hair loss. Share your thoughts, comment, rant, rave, laugh, cry...communicate. Click To Join
Just Launched - Join the NEW Forum for The Women's Hair Loss Project. If you are already an existing member of the Network then you already have an account set up and will need to use the Reset Password link to enable your forum account. Click To Join

Previous post:

Next post: