Hair Loss and Medication – Vicky’s Hair Loss Story

by Y on December 11, 2007

Hair Loss And Medication- Vicky's Hair Loss StoryI’ve just discovered your site and I must say that i,m glad that it exists. This is my dilemma, I’m a 39 year old woman who is experiencing hair loss/shedding and thinning for the last year and a half. I’ve always had long thick hair so this hair loss is a BIG adjusment for me and a lot of people have noticed the change in my hair which of course is adding to my stress and my depression. What I would like to know is this, I took aldactone for a little over 2 months and had some side effects, but only really stopped it because I had an infection elsewhere and I had to get onto medication that contained potassium. The infecton has now cleared up and I’m thinking of going on aldactone again as my shedding has increased again and also I’m also having my period and its seems I shed even more during my cycle than any other time (or at least i think i do). Is it worth going on aldactone again? Is the increased shedding due to the stopping of aldactone? I was also prescribed Diane 35 and Androcur- but have read up on them and the side effects scare me. I’m also trying chinese herbs and a regrow lotion for the last 4 months which has slowed my shedding but not stopped it. I would like to keep what I have left and not take medication that in in long run will do more harm than good. Do you know anything about soya products and hair?Thanks, awaiting your reply.

Dear Vicky –

Thanks for writing. I think a huge consideration is exactly what side effects you were having from the Aldactone and that should definitely be discussed with your physician. You were on Aldactone for such a short period of time that I don’t even know if that is long enough for it to have really have had enough effect to cause shedding from getting off it. Please remember I am not a doctor and cannot give medical advice, this is just my opinion, but it makes more sense to me that the shedding at the 2 month mark could have occurred from actually getting on the pill. Most medication used to treat hair loss all have the possibility of causing increased shedding in the beginning, it can get worse before it gets better type thing and it occurs around that time frame.

When it comes to taking any medication side effects can be pretty scary, but all meds have them. For myself I try to weigh out the possibility of one of the potential side effects to the degree of distress the ailment is causing me, in this case hair loss. Hair loss for me 8 years ago was probably the worst thing in the world, no one thinks they are going to lose their hair at 21. So I was very willing to try anything I could to save it, even knowing that some trouble could occur down the line. But again I was 21. As I got older I started to worry more and more about what effects taking a blood pressure pill that isn’t necessary was having on my body long term. Same for the pill I’m on, Orthotricyclen. Each year that passes by I worry a little more, but I really feel stuck taking all of it because I am very aware that the cessation of any of these mediation could throw me into such an extreme telogen effluvium (shedding) that my mind wouldn’t be able to recover and I’d be so depressed and hiding in bed forever. Not good. That is where I am at so I continue taking the meds despite my growing concerns. In all fareness, if my hair loss had stop and was no longer shedding I probably be happy as a peach and say, “it is all worth it” all the self questioning is happening because it seems that the treatments are no longer working to the degree they did early on… so I feel shorted in some way.

Aldactone has varying degrees of effectiveness for women, for myself I do think it helped me, more so in past years. I know this because I stopped taking my prescribed 100mg of aldactone approximately 5 years ago or so thinking it was not working. I had some pretty bad shedding, as expected, but my hair never seemed to really recover so I go back on, and at a higher dosage as well 200mg. Sometimes women are actually seeing protective hair benefits from low androgen index pills and aldactone and don’t even realize it. The realization comes when they stop taking the medication for awhile and notice that they were doing better while they were on them. When you stop taking the hair loss treatments you lose any benefits your hair got from it, and that is true for every hair loss treatment including Rogaine.

I am very unfamiliar with Cyproterone acetate (Androcur) and have never tried it myself, I know it is an antiandrogenetic hormone preparation and that is about it. Do you think your hair has gotten any better while on Androcur and Diane 35? Or are you not taking them and it was just prescribed to you? Unfortunately I don’t know about soya products, so I’m hoping another reader will be able to share any experience they had with it.

I don’t discourage women from trying Aldactone because it has proven to be of some help in treating women’s hair loss and I’m all for being proactive. I just like to tell my whole story and my thoughts that occurred years later after taking the treatments. For example, for women that are going to want to have children… they cannot take aldactone while being pregnant and obviously cannot take the birth control pill. So at some point 5, 10, 15 years down the line that day will come when they will have to get off all the meds and realize the possibility exists that they’ll start shedding hair at an accelerated rate. Of course after the baby is born the woman can get back on treatments, but understanding this and accepting this is making and education decision when treating your hair loss. Doctors don’t give you a sit down and tell you all of this.

I can’t tell you if it is worth getting on aldactone again because that is a very personal decision. I think whenever we are thinking about trying new meds we have to take out the benjamin scale and start weighing. I hope some other women can offer you their perspective as well, and that will help you in making the decision that is best for you and one you can live with.

~Y

{ 22 comments… read them below or add one }

Jenny December 16, 2007 at 11:22 am

Vicky,
Can you tell us what regrow lotion you used that slowed down shedding?

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vicky December 18, 2007 at 11:36 pm

Hi Jenny

The lotion that i used is called “101 hair regain tonic” which is a blend of chinese herbs (Developed by a dermotoligist & it has been around for ages) and i also take some chinese pills as well. A friend of mine recommended it as she has hair loss over a number of years and had tried this and notice a reduction of shedding and regrowth after several months (but she has stop it now as u need to apply morning & night, so its a bit fidgety). The site is http://www.101.com.au – this is the australian site u can read up on this and make up your own mind whether it is somethig u want to try. I’m also looking into VitB12 injection – apparently it is very good for hair and stress levels, as one goes hand in hand with each other. So i will see how this goes.

Bye Vic.

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justme January 17, 2008 at 4:03 pm

Vicky, my wife was having trouble with hair loss and had been told it was probably just a side effect of her autoimmune disease, and there wasn’t much that could be done about it – other than Rogaine, which was messy and not very effective. This has been a problem for her for years, until a few months ago she saw a dermatologist for something else – and the dermatologist told her low iron can cause hair loss. Well she put her on high-strength iron supplements and after only a couple of months her hairdresser says she can already see new hairs starting to grow in on her scalp. If it get worse during your cycle maybe this is what’s causing your hair loss. Just something you might want to look into – I’m not a doctor.

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admin January 17, 2008 at 9:27 pm

Hi Justme, Welcome to the Site! Thank you for sharing your wife’s story. I’ve heard from several women now that increasing their iron dosage has helped them to some degree with their hair loss. It’s always great to hear different people’s experiences with different supplements and hair loss treatments, it really helps to figure out the path we want to take for ourselves and perhaps things we need to get tested. Thank you for sharing that!

~Y

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vicky January 22, 2008 at 5:17 am

Hi justme, its always nice to hear from the guys as my husband has also been very supportive i really do not know what i would do without him. About the iron, my iron levels were tested in May 07 and they were very low and i was put on iron supplements for approx 4 months and was retested and was told that the levels are fine now. But my hair is still shedding i think not as much now but i also dont have as much hair now as i did back in 07. But i did read another ladies story about her iron levels and she said it had to be at a particular level before it starts growing – something that i will check with mt derm.

About the Diane 35 and Androcur i was prescribed to take it but haven’t. I’m still confused about the pill as so many women on this site have taken it for years and have noticed hair loss and yet doctors prescribe different types of the “pill” for hairloss. So which one is the right one? that really is the question?

By the way my derm took 2 biopsies, so she could be sure and she told me i had FPB, as my hair had shown miniturization but what scares me is the constant shedding that is occuring i wonder if i have TE as well as FPB, i just dont know i’m going back to the derm early feb with a list of questions and some more blood work results. So i see how i go.

Vic.

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alynna April 19, 2008 at 9:36 am

Hi Vicky,

Could you tell me how your hair loss condition is now? I am experiencing thinning all over my head and I don’t know why. I am a 24 year old female.

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vicky April 21, 2008 at 3:18 pm

Hi Alynna

My journey is still continuing, it’s being approx. 19 months since i noticed my hair shedding and i’ve tried a variety of things and i’ve also resisted trying certain medication even though the dx tell u its the current way – i think your natural instincts kick or something.

My shedding has slowed down, last shower i counted “”5″” hairs a HUGH reduction from previous showers, before that 24, 20, 16, 40, 80, 100 etc etc. What have i done u propably ask? I FORCED myself to relax. I started walking, about 4-5 times a week (with a friend, i call it my FREE therapy), I am not on any pill and i feel comfortable enough, for me that is, not to go down that road, i’ve already tried aldactone(spiro), it gave me side effects i even tried saw pal. that gave me side effects as well.

I’ve done alot of research and i’m on a more natural approach. One thing that i feel that has helped with my shedding was taking an amino acidcalled “L-Lysine”, if your lacking this u tend to break out in cold sores, which i’ve done my whole life. I was on this for approx. 2 months when i noticed a change in my shedding and apparently it can also help if u are on the pill or spiro or any other medication its suppose to help it along.

I take this along with other vitamins etc and i’m also seeing a natropath who has me taking some herbal stuff (which tastes awful), don’t know if this is working yet.

Alynna, are u on any meds? and for how long? If u arn’t sometimes its just best to let your body ride it out? allow mother nature to heal itself. I know how difficult this is and how we focus all our energies on our hair, but if u can try and put your energies towards other things your body and hair will thank u for it eventually.

BTW, one my favourite hair habits is to wear a “hair net” arround the house, so i don’t see my hair all over my nice white/cream floor ( i have dark hair)- talk about being extreme, but we do what we can, every little step helps.

I send this to all the ladies who are struggling, keep searching, be gentle to your bodies, if meds is the way to go then so be it, love yourselfs and remeber we are all beautiful with or without hair. Best wishes Vic.

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CeCe July 24, 2008 at 7:50 am

Hi Vicky,

How is your progress?

I’m 32 and I’ve had thin hair pretty much since I was 18 years old. I tried Diane 35 for 4 years, and it did miracles for my skin and I had pretty healthy hair while on it, and it didn’t have much side effects other than a somewhat dampened sex drive. I came off of it a year ago after I ended a relationship and since then started having gradual hair thinning and hair loss. I also got coarse chin hairs, which I had to laser off.

Then 3 months ago, I started a new relationship and my acne flared like crazy and my hair started shedding a little more. I figured it was hormonal and went on Yasmin for 2 months and I started losing hair much worse: up to 200 to 300 strands a day. I also started gaining weight all of a sudden. My doctor told me she has never heard of anyone losing more hair on Yasmin and dismissed my concerns and told me it was a combination of stress and genetics. But the package insert says that some women experience hair loss. So I stopped it 2 weeks ago.

Anyway, it’s gotten so bad that a lot of people have noticed it and I know my new boyfriend has noticed it but he’s been too polite to say anything about it. It’s getting me pretty depressed. A family friend who is an endocrinologist recommended that I also go on both Diane 35 and Androcur, but I don’t want to lose my sex drive completely, especially at the start of a new relationship. But I’m thinking of going back on Diane 35 for a while again.

I’ve been taking a ton of vitamin supplements for the past couple of months and I was reading about Saw Palmetto as well. Can you tell me what kind of side effects you got from that? Also is there a particular shampoo you’ve found that is gentle and not contributing to excess shedding?

Thanks.

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Lisa August 7, 2008 at 7:06 pm

I was on diane 35 for many years and took a break of 6 months about 4 years ago. I went back on it due to heavy periods and acne but decided to take another break in March this year. I’m thinking that was a big mistake. After a heavy period and severe cramps in June I decided to go back on the pill and was prescribed Yasmin – big mistake. I took it for 17 days and it did not agree with me at all. I have IBS which before Yasmin I had under good control but this pill made it flare up badly which I later learned was a common side effect and then a couple of weeks later I started to notice the hair loss. I actually didn’t notice it until I had my hair done as I was wearing it tied back all the time and hadn’t noticed it getting thinner but as the hair dresser was drying it I realised it was so thin you could see through it. Anyway that was on July 23rd and it’s gradually gotten worse over the past few weeks. It’s gotten really thin on top around my parting to the point where if I sttand under a light or even in sunlight you can see my scalp through my hair. It’s horrible.

So I think that as I stopped talking Diane in March and started to notice the hair loss in July that this is probably what caused it as I’ve read that the change in hormone levels can take 3 – 4 months to show. But I don’t think the Yasmin helped at all especially as I’ve snce read lots of reports about people losing their hair both on and coming off Yasmin.

Anyway I plan to go back on Diane 35 asap and keep my fingers crossed but remember to beware of Yasmin, especially since it’s sometimes marketed as a pill to help people with hair loss!

Thanks.

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Jen March 13, 2009 at 12:42 pm

Hi all.

Diane 35 and spironolactone (100mg/day) has stopped my hair loss. I spent the last two years watching my hair fall out and now my hair is extremely thin… there was a time in my life where my hair was so thick that people commented on it… those days are over… now people comment on how thin it is. I have only been taking Diane 35 with my spiro a short time (3 cycles) but I am wondering if hair re-growth is possible?

On a side note, I have to obtain my Diane 35 illegally since for no good reason, other than apparently it is a popular drug taken for men going through a sex change procedure, Diane 35 is not FDA approved.

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Anna March 26, 2009 at 2:35 pm

Hey! I took androcur for 3 months-2 tablets 1-10 day od the cycle. It worked miracles with my acne and excessive body hair however -no change at all with my hairloss and I don’t think I could have taken it any longer because my vains became very very painful i think the dosage was way to high.Good luck with your treatment!

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Vicky May 13, 2009 at 7:13 am

Hi Jen so great to hear diane 35 and spiro stopped your hair loss. I am on 200 mg spiro and YAZ for two months and no improvement yet. I am hoping things will turn around very soon. Has your shedding stopped? Has it gotten better now since it’s been like 5 months since I assume you started? Thanks

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Vicky June 9, 2009 at 4:52 pm

Hey Y, you say you have been taking Aldactone and BCP for about 9 years but have regretted it. I wanted to ask you during those years where you said you did think it was helping, did you feel even though you still shed, your loss stabilized? or has your hair been slowing progrssively been getting thinner? Because you said going on the synthroid started the loss again but how about before that? because if it did somewhat stabilize it where it wasnt getting worse year after year, I think thats a great success even if there was no regrowth. Please let me know thank you so much.

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Annie June 10, 2009 at 3:10 pm

Hey Jen, while taking the Spiro and Diane 35 did you experience any side effects? I have been taking Spiro for 2 months now and I had to stop it for blood tests of hormones and enzymes and after a week off Spironolactone my hair is falling like never before. So, I started it again, but I am not sure when and if I will have any result. I have Diane 35 as well, but did not take it, because my dermatologist advised that will be too much…..

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Asiangal July 6, 2009 at 5:03 am

I’ve always had thin hair since young. Due to some bad hair perming, i started shedding a lot, to the extent when my scalp was painful to comb through my hair. This happened many years ago. At that time, i took this supplement called Hair Push (by Wil Harrisons & Associates) for a total of 18 months and my hair reduced shedding and regrowth was great. After almost 2 years, I had more hair than original.

I stopped taking it for many years and my hair was ok. Now, I’m 33 and starting to experience hair loss again. So recently, I took on Diane35 AND the hair supplement Hair Push. It has been just one month and things are looking good. Reduced shedding… as for regrowth, I’ll have to wait for at least 6-10 months before anything significant can be noticed.

This is my personal experience and I hope it helps others with the same problem. Also, I have heard that using alcohol such as gin or egg whiteto rub on balding areas will stimulate hair growth. Never tried this though but my mum swears by it.

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Janeviv September 16, 2009 at 12:10 am

Hi Vicky. Do you know if your hairloss is hormonal? Have you been diagnosed with polysystic overies? Aldactone or Androcur will only be helpful if hairloss is hormonal related. I began losing in my 20’s and am now 44. I was diagnosed with PCO and was given Androcur and contraceptive pill. Was great for clearing skin and any excessive facial/body hair thinned (but that wasn’t a huge problem to begin with). It didn’t regrow hair in bald patches on my head but I think it really did stop shedding. Thing is I never really thought I would shed anymore for some reason and I hadn’t for 20yrs until now. I believe that’s co’s of these drugs. Androcur made me moody and my menstral cycle was all over the place. I changed to aldactone and it has been much better but still no regrowth just prevention of shedding, until last few months. I was on 100g per day but have now gone onto 200g. After 3 weeks of upping it I think (not too excited just yet) the shedding is decreasing!!! I have also gone on iron supplements 2 days ago just in case its from low iron. I dont expect i’ll ever get all my hair back but sure don’t want to lose more. I hope this info helps you.
Take care,
Jane

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E. September 4, 2011 at 2:08 pm

Hi girls, sorry for dropping by after such a long time since the last post, but I just wanted to share my personal story.
I was prescribed Accutane for my acne in july 2010; the derm also suggested that I’d take Diane35, which would help me on the hormonal level. Anyhow, I only took three pills or something, because it made me dizzy and nauseous, could hardly hold myself on my feet, so I stopped it. Like three months later, I noticed sudden, extreme shedding of my hair, I didn’t give it too much importance back then, but I still talked to people around it, and my aesthetician told me that I should go on Diane, that she had been taking it for three years and stopped four months ago and she had no side effects and no displeasures at all. I followed her advice, got past the initial disconfort and I must say my hair stopped shedding like a week after I took the first pill, so I was really happy with the results and continued taking it. I took it for two months and then I started getting fed up with the mild depression, irritability etc that the pill would give me, and I stopped taking it. All fine and dandy for exactly four months, then again, SUDDEN shedding of my hair. I blamed it on the spring anemia and so on and ignored it, did not wanna go on Diane again. Took some natural supplements, including some pills containing L-lysine that Vicky mentioned, did not notice great improvement. Not to mention lotions and toners and stuff that promises to save your scalp, improve your blood flow and so on. I’ve cut my hair pretty short about two months ago, did not really help, but I gave it a try. Now my hair doesn’t LOOK much thinner, actually I ask my mom rather regularly about it and she says she doesnt notice anything, but I wonder how long it can go on like this without it becoming a problem. On the other hand, I notice a whole lot of regrowth around the crown, where it’s more obvious. Actually there are like many many 2-3 cm. long strands that are “sticking out” from the rest of the hair, when I have it combed back. I tried pulling them out to see if they’re in Telogen Effluvium as well, but none of them came out. I plucked one out with a tweezer and noticed it had a black root, no white end on its base, so that gives me hope as well. I read in many articles that it’s not actually the shedding that matters, but the regrowth. Even if you lose a big number of hairs a day, the follicle must continue being active AND THE NEW STRANDS MUST NOT BE AFFECTED OF TELOGEN EFFLUVIUM. So yeah, even if my hair is still falling out a lot, I’m hoping and crossing my fingers the regrowth is for serious and the new hairs will stay healthy for a long time.

Anyhow, my bottom line, after this long story, is that I really really truly regret having taken Diane. I wouldn’t do it again, and even if it has crossed my mind to restart the treatment after my shedding began, I rapidly abandoned the thought after reading other testimonials, stating that their shedding started all over after each time they stopped the pill. There are people who tried to explain the phenomenon through how Diane acts as an anti-androgen substance on the follicle, causing it to “block” androgens throughout the period of the treatment and then leaving it more sensitive to those hormones after you stop taking the pill. I’m thinking the body should be able to regulate its hormones after a while, though, so I’ll just wait. And hope that the mistake I made, which is two months of Diane treatment, didn’t really affect my hormones so harshly and that the body will heal itself on its own. Maybe I’ll take some natural estrogen promoting medicines, drink soymilk, exercise and stuff like that, but no going back on Diane. (in the meantime, I must say I’ve taken a pill called EVE, which is a new product, very light, but I don’t know if it can be found in the US, I got it in Italy. Didn’t do much for my shedding, didn’t make it get worse after stopping).

So, if anyone reads this, I really hope it’s gonna help them decide on whether take Diane or not, and I’d also be very glad to read other people’s stories (preferably success ones, he he).

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Sandy May 25, 2013 at 2:31 pm

Hello all ! SUCCESS STORY! First I’d like to begin by saying that I am 26 years old and my hair started falling out when I was 20. I immediately went to derm and got a hair biopsy which showed it was FPHL. Devastation. I wont go into detail as to what this does to us women emotionally as you are all well aware of that. Well I went to see Dr. Redmond in NY about 3 months after FPHL was confirmed. I tried various treatments with no success. Finally I went on Zovia 1/35 and androcur 50mg daily and only stopping for a period every 3 months and after about a year or so I noticed how little by little my shedding was decreased. Today I only shed between 10-20 hairs a day even on hair wash days. I’ve been on these treatments for the last 3 years. Slowly I’ve begun to decrease androcur dosage since I’d like to try to conceive in a year or so and didn’t want to shock my body by going off cold turkey. I began to cut and take the androcur in half for about 3 months then into 4 pieces so now I’m taking 12.5 mg a day with no problems with hair. I just want everyone to know that as devastating as hair loss is, just remember that this is hope in treatments but patience is key! Also please try to remind yourself that there are worse things in life and if hair loss is the only “illness” we experience in our lives, then we are truly blessed. Hope this message helped someone. Hugs.

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SabaZ January 8, 2014 at 2:08 pm

Hey I have been reading this thread. Can anyone plz tell me what FPHL is ?

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Eve January 5, 2015 at 2:29 am

FPHL means Female Pattern Hairloss.

I started shedding hair after a traumatic flight experience. The plane dropped 6 storeys and everything including my 5yr old son was on a free fall in that plane. We had to endure another 10hours in that flight to get to our destination.

At around 3 months prior to that flight experience, I stop my OCP Gynera.

1 month after that horrid flight, I noticed excessive shedding in the shower and combing throughout the day. I was freak out, fearful n depressed.

Visited a dermatologist and she asking me to go on the laser machine. After 3 months and thousands of $ spend, still shedding.

Shedding has been going on for 18 months till to date. I tried CRP/PRP at Dr Greco, chinese medicine and acupunture, Spironolactone (increased shedding by 3rd dose n I stop).

Only positive was when I started Yaz 5 months ago. Before Yaz, I was shedding 50-80 hairs a day. After Yaz, I was reduced to 30-50 hairs a day. 30 on a good day, 40 -50 on average. However, I noticed my shedding is slowly increasing again. 40-60 range. I’m thinking of switching to either Yasmin or Diana 35.

Anyone have experience with switching from Yaz for reduce shedding?
Pls share….

Hairloss n shedding is the worst nightmare and only people living in it will understand. My friends thinks that I’m making it worse than it is.

Derma diagnose me with Chronic Telogen Effunvium n FPHL as they saw hair miniurazation.

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joanna February 7, 2015 at 7:50 am

hello everyone, i too started experiencing hair loss 3 years ago and i am trying prp its been only 2 months so i cannot really comment has anyone else tried this? i am also thinking of taking androcur. i am 47 so i am probably perimenapausal as well and going through a stressful time right now so shedding a lot. my mom also experienced hair loss but it started in her 50’s. my derm diagnosed me with androgenic alopecia. i think its a combination of stress and hormones, i am in new york and looking for a second opinion so if anyone can help i would appreciate that.

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Joe January 11, 2018 at 7:33 pm

Hey for anyone reading up on this horrible health problem that is hair loss, I experienced hormone related hair loss starting 3 years ago. After denying it for a year I realized it was happening and eventually my search for help brought me to a Diane 35 prescription.

I’ve had incredible regrowth which began after 6 months of being on that pill. I never imagined the hair would actually come back on my temples. So if anyone is desperate, try it. I am aware of the serious health risks Diane has, which is bringing me to re-evaluate this problem. I’m wondering if since it worked so well, that switching to an androgen blocker like Spiro might be a safer alternative.

Good luck everyone.

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