hair loss-help!!! anyone had regrowth from anything
Has any one had help with spironolactone lowering your androgens enough help hair regrow? Or is there anything out there besides spironolactone that will help?? I have been suffering from pcos for about 11 years but started losing hair about 3 years ago.
Nikki blue I am 32 and have severe hair loss from PCOS ... I have tried Spiro, Proscar, Regaine 5% and I am afraid nothign has helped me !!
I think the only thing that is proven to regrow hair is Regaine (Rogaine in the states) but you have to use it for life and its an oily mess ! ..... it doesnt help for frontal or temporal loss or diffuse shedding .... Spiro should lower the androgens so could help slow the loss but I cnt tell you if it works as I was ill on spiro.
Maybe someone here may help but a good site for hair loss sufferers is www.heralopeica.com
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Thanks for the info, I would like to hear from anyone out there who has been able to reverse their hair loss and stop hair shedding..... This is the worst sysmptom of all, I can deal with extra hair in certain places but losing my hair on my head is not acceptable!!!!
I just posted my success stroy re the hairloss a couple days ago, but I'll cut and past that post here so you can see it. I have mangaged to get my hair back, but it has been a 2 year battle, and it totally consumed my life. I was suicidal over the hairloss, and now that my hair is grown back, I want to let other women with PCOS know that it IS possible, and not to give up hope. If you want to e-mail me, please do (want2havehair@yahoo.com). I don't want to see any other woman ever sink to the point of despair that I was at. Here's the text from my previous post on the "Success Stories" forum:
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 over 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 chubby or 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-ish 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 about 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.
Why oh why didnt it work for me .. I was on Spiro, nizoral AND Proscar AND Regaine and nothing worked for me and that was over two years ago for me .. I finally quit all drugs ....
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Why oh why didnt it work for me .. I was on Spiro, nizoral AND Proscar AND Regaine and nothing worked for me and that was over two years ago for me .. I finally quit all drugs ....
For some women, it's possible to redress the hormonal balance. For others, their bodies as a whole are so tuned to a different hormonal balance that they simply can't tolerate a shifting to what would be a much more common hormonal balance for females. If that's the case, the best thing to do, imho, is to accept the hormonal balance our bodies are happiest with.
Thank you Jenp3 for all the info, There are so many differnt threads on here that it is hard to move around and see all the old info and stories.
I do have one question(s) are you currently taking bcp's? You said this started after you got off bcp's? Were your cycles normal before you began bcp's?
If that's the case, the best thing to do, imho, is to accept the hormonal balance our bodies are happiest with.
True, but that also involves and incredible amount of painful feelings sometimes. Again, this morning, I realized and got that cold feeling in my gut, "I am going to have to deal with the fact that my hair is gone for the rest of my life...."
Anguish, to say the least, and I think Sally does such an eloquent job expressing the pain.
I deal with it by moving on to hairpieces, and soon full wigs. And on a day to day basis with it, I'm OK. And have even reached the point where I realize how much better I look that I ever did with all my own hair. But truly, it turns your world upside down in a way almost nothing in my life ever has.
__________________ "I knew I had a problem when I put my underpants on backwards and they fit better..."
Age 46
Obesity, very mild hirsuitism now almost gone with age and met, seriously thinning hair. Regular cycles on met.
Diagnosed with diabetes 8/2003
I am sorry to scared sally that nothing has worked, but I am going to give the meds a try and even if they make me sick I will stay on them. I can't handle the hormone imbalance.
I got some new questions for everyone, I sure it is because of excess testosterone but does anyone have stronger b.o. like a man??? And excessive rage like a teenage boy.
And does anyone ever get so much pain in one or both ovaries that they feel like they are going to explode inside you ??? Literally.
No, I did not take a BCP after I found out I had PCOS. I was on Ortho 1/35 from the time I was 14 to 25 becasue my periods were so long and heavy, so I really don't know what they would have been like if I'd just left them to their own. When I hit aroudn 19, I stopped gettin the period osme months, but no ne ever connected that to PCOS, my GP just said I should come off the BCP, so when my husband had a vasectomy (I was 25) I stopped BCP'ing.
While off of the BCP (before PCOS diagnosis or teatments - age 25 to 33), I had HORRIBLE long, painful periods wiht lots of clotting and a heavy flow. They were sometimes more frequent than once per month,a nd if I'd had a few like that, then I might go 6 weeks before the next one would appear.
All in all, I simply did not go back on the BCP because I could not agree with my Endo as to whcih one I'd beenfti from. I had suggested Diane 35 or Yasmin and he wanted me Alesse. I refused Alesse and just decided to ride it out without the BCP. I don't regret it as my hair has come back and my periods are OK. They are not as long or heavy as they use to be, but still seem to follow the same pattern. When I first started 100 mg of Spiro I'd get them every 13 days or so, but they calmed down after a while and are now pretty much an average flow and length.
Also, there is some connection between BCP's being dangerous for women who are IR, which I am. Apparently they tend to exacerbate the condition, especially as we get older. My endo didn't want me on ANY BCP at all past age 36 and I was 33 at the time we first discussed it. I feared going on it and then having the dread-shed when I came off it in a mere 3 years. so I decided not to take it at all.
Nikki, if you click on my name, beside my posts, you can see the messages I've lest - one of them is EXACTLY about the sweating and BO- yes, this is ALL part of the PCOS experience. So is the rage. We use to have a receptionsit here at my firm who the very sight of her face, or the sound of her breathing would make me violent. That ain't normal because the woman was actually a very nice person - the problem was all mine!!!! My moodswings are GONE now, and now I can clearly see how off balance my body was - it had an effect on every aspect of my self - from sweating like a pig, to being a real ***** for no reason, to crying at the drop of a hat, to losing my hair, to gaining weight, to haing depresison and anxiety issues that came out of nowhere, to getting physically SICK all the time. All of that is gone now, but it has taken these past 2 years of very dedicated drug use, diet, exercise and some serious researching and soul searching for me to make myself better. But you know what, if I did it, so can you! Try to keep yourself positive and learn as much as you can about PCOS and how it affects YOU (it can affect us all differently).
For me, the hair loss was the kicker. Everyhting else I could live with, but the hairloss just broke me. Part of my coming to terms with that as well was also joining MSN WigSupport and seeing that heck, even if I DO lose all my hair, I can BUY me some beautiful hair and pop it on and off as I please. I can even buy it in different colors, lengths and styles if I really want to. On HairSite I suggested to everyone who was REALLY affected by the hairloss to at least look into trying some supplemental hair while they were trying the drug therapy just to cover their scalps until the meds kicked in to give regrowth. I never had that option because I never found MSN WigSupport until AFTER I had regrowth. I would have killed to buy a topper and pop it on so only I knew that there was a problem. My big thing was that I was always convinced everyone was staring at my scalp and that fear really did a number on my self esteem and it put my anxiety levels through the roof. A topper or wig would have solved that fear for me, but I had no idea they could be so pretty, modern or realistic.
It does help, I have been ignored by all of my gyno's on this issue since I first figured out something was wrong. And it was always the bcp they wanted me on and I had no problems before I started bcp in the first place and then got off on my own because of extreme weight gain. Thats when the nightmare began back in 1996. And got way worse over time. I have always firmly believed the bcp had started my problems to begin with, even though I was genectically predisposed to it from my mother. So I am very much against going back on them.
Oh god thank you, because I have quite literally thought I would kill myself somedays, and some days I would kill someone else thats how bad it is!! Right before my 30th about 6 months to a year It was super bad that was june now I am coming up on 31 and it ain't much better. On top of this I have pretty severe IBD or IBS and during all of this I had that night mare added to this nightmare. And I have HPV so I was getting the early stages of cervical cancer and let me tell you from 28 to 30 I was in pure hell. Plus a 2 years ago next month I had my gall bladder removed cause of gall stones and that pain is just as bad as the cysts. So Between PCOS, IBD, And GAllStones I was falling apart literally I thought I might bedying of somehting they couldn't find. Needless to say after being on short term disability from my job so many times they finally fired me. SO I had no income or insurance any longer to continue to get help.
I had success from Arbonne's hair line... it has been about a month and a half and I have hairs sprouting all over the top of my head. The girls at my work now call me Spike... I'll copy a post I made previously...
I went in for a consultation to get laser hair removal and the laser tech introduced me to a product line that changed my life. She recommended I get on Arbonne and the results have truly been amazing. Since January 2006 I have lost 37 lbs, I appear to be growing hair on the top of my head, my skin cleared up and I have gotten my period. I have been using the Arbonne Daily Self Adjusting Shampoo and Conditioner along with the Thermal Fusion Hair and Scalp Revitalizer. I have also been using the PhytoProlief Natural Balancing Cream. I have also been on Arbonne's Figure 8 weight loss program which is basically just a low fat/low carb vegetable protein shake with some fiber mixed in. I have also been drinking the daily detox tea which is supposed to help cleanse and eliminate toxins. I have also been taking their brand of multi-vitamin. Also, I have been using their RE9 skin care line and have noticed a remarkable difference in my skin.
This is really the only thing that I have used that has made any sort of difference. My doctor diagnosed me in December 2004 and put me on ortho-cyclin and 500 mg of Met but I never saw any results.
I don't know if this will work for anyone else but I wanted to put the word out there because for me it has been amazing. I am so glad to finally feel like I have some control. Anyways, if anyone wants more information or has any questions please feel free to ask me. Thanks!!!
hair loss-help!!! anyone had regrowth from anything 
I'll copy a post I made previously...
