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I 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
Technorati Tags: aldactone, hair loss, PCOS, spironolactone, womens hair loss
{ 29 comments… read them below or add one }
Jennifer 05.08.08 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 05.18.08 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 05.20.08 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 05.23.08 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 06.18.08 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 07.08.08 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 07.24.08 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 08.04.08 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 08.12.08 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 11.14.08 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 11.24.08 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 01.28.09 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 02.17.09 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 02.20.09 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 02.20.09 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 04.10.09 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 04.10.09 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 04.24.09 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 05.02.09 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 05.08.09 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 05.08.09 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 05.19.09 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 05.20.09 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 05.24.09 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 05.29.09 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 05.29.09 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 05.30.09 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 06.18.09 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 06.22.09 at 12:32 pm
Sana how long have you been on spiro? Has it helped your shed?