Calling Spiro Users, Past and Present!

I know there are plenty of you out there who are using Spiro (Spironolactone) currently or who have used it in the past. I get lots of emails asking about my Spiro experience, and aside from my brief story about how Spiro affected my hairloss and PCOS, I don’t have a ton of experience with it. I do know plenty of people who have used this drug, and the experiences really seem to vary. Sooooo…if you have experience with Spiro, I was hoping you might share your story in the comments. Some things to think about:

1) Why were you prescribed Spiro?
2) Were you already experiencing hairloss? What about other PCOS-type symptoms?
3) Did Spiro cause your hair to shed at a rapid rate in the beginning? If so, when did it taper off?
4) Did you see any regrowth?
5) If you were on it for other reasons, i.e. excess body hair, acne, etc., how did it help (presuming it did)?
6) What dose were you on?

Those are just a few questions off the top of my (hairless) head. If you have anything else to add outside of that list, please feel free!

Seems there are a ton of ladies out there with questions about Spiro, so I’d be so grateful for any experiences you can share. I’m sure they will be, too!

54 thoughts on “Calling Spiro Users, Past and Present!”

  1. 1) Why were you prescribed Spiro?
    Thinning hair [alopecia]
    2) Were you already experiencing hairloss? What about other PCOS-type symptoms?
    Yes, started thinning at 19 [41 now]. A little facial hair, irregular periods [infertile, eventually lead to hysterectomy], cysts, overweight, whatever else pcos can ruin it’s ruined.
    3) Did Spiro cause your hair to shed at a rapid rate in the beginning? If so, when did it taper off?
    Was kind of rapid, then hardly nothing, then rapid again on the spiro…has stayed rapid entire time on spiro and hair loss is getting worse, making me wonder if I should discontinue [I’m not sure it’s a dread shed…as it’s been 7 months on 200mgs, and at least 4 months on lower doses].
    4) Did you see any regrowth?
    Not even close, it’s much-much worse
    5) If you were on it for other reasons, i.e. excess body hair, acne, etc., how did it help (presuming it did)?
    I did not take it for these reasons, but it has slowed the growth down drastically for facial hair [it wasn’t real bad, but noticeable]. It’s mellowed the redness on my face, not 100%…but much better. Don’t have to use cream everyday anymore-more like once every week or two in winter.
    6) What dose were you on? 200mg

  2. Hey ladies! I’m newly 20yrs old and have been dealing with hair loss since I was 18. As far as I know it’s not genetic because everyone in my family has a full head of hair minus a few men with thinning hair (old age). I have had PCOS since I was around 15 (cysts on ovaries, constant periods, off FSH:LH ratio, luckily no IR).No one that I know of has PCOS in my family either. My androgen levels have tested on the higher end (not super alarming) and so we assumed this is what has caused my hair loss because of some miniaturization. ALL other tests are normal (thyroid, vitamins, etc.) Its been shedding all over with no clear pattern for the past year and a half. I went vegan back when I was 18 and five months into it is when all this hair loss mess has happened, don’t know if that wacked out my hormones or what. Stupidly, I also took myself off Sprintec birth control a few months after my hair loss started which I believe triggered AGA (scalp biopsy revealed mild AGA) because I’ve had a massive amount of hair my entire life with no signs of thinning. I have been on Spiro for almost 3 months (not quite) now at 100mg daily but have had literally no difference in hair loss, I still shed loads, most in the shower. I see for a lot of women it takes longer, what do you think? I have been avoiding Rogaine because of trying to stay away from all these chemicals but I’m so desperate now. Any recommended testing, should I up the dosage? Any advice would be so helpful, my heart goes out to everyone! P.S. I have been eating meat again for about a year and I am also back on Sprintec (6 months).

    • My tests never revealed anything – slightly higher levels of testosterone, but well within range. I recently had a holistic assessment done so we’ll see how that all turns out.

  3. So I went to the derm I do not have pcos and convinced my obgyn to run labs (okay a couple of times) my testosterone isn’t high it was actually low I think my total serum was 13 and free was 1.1, progesterone first time was 4.2 next was 5.7 (I had a partial hysto in 2015 so I have no period) I even had my androgens checked and it was 58 and normal was 48-204… so im closer to the lower side I guess. They’ve checked my estradoil three separate times 67.5, 33, 56.8. My fsh was low 4.2, 8, and 12 so my obgyn says no way I’m in menapause. I’m so confused i mean I thought high testosterone is converted into dht? But I don’t have high.., my thyroid was fine, iron, vitamin d, b12, b6, prolactin was 14, LH was 9.9 and second time 15… I mean what is going on with me? I was given spirolactone and advised to take rogaine but I feel like that’s just the go to… I have no hot flashes no weight gain but lost libido but have lots going on so I might be distracted. Any one have same issues??

    • Most women that diagnosed with AGA ( androgenic alooecia- type women balding pattern) are within normal range on testosterone. But dermatologists typically prescribe spirolactone as an original treatment. Your testosterone could be within normal range but your hair follicular could become extra sensitive to DHT ( which sort of by- product of testosterone).

  4. Hi, realize this is an old thread. But I’m interested so I’m going to offer up my experience. Many years ago I suddenly, inexplicably starting losing my hair. I always had nice full hair and it just made no sense. Well, years later, looking back now I know that it was BCP that caused it, but back then, there really wasn’t much an an ‘internet’ and NO doctor would admit this could happen. Anyway, I went to several derms/doctors/had blood work and even a biopsy on my scalp. No one knew what was going on. Finally, i went to a really good derm, who told me that I has telogen effluvium hair loss and that my scalp was inflamed (I knew this). He gave me Ativan to calm my nerve endings, and spiro to re-grow my hair. He told me both were kinda off-label uses, but BOTH WORKED. My scalp inflammation went away… (Because ativan calms you down and at that point I was in a full blown, never ceasing panic about my hair). I don’t remember if I had a ‘dread shed’, but I do know that the following happened:

    1) My hair grew back thick, full and looking good. (It took a few months)
    2) I felt way less bloated and lost a few pounds.
    3) It curbed my appetite, though I was thin anyway
    4) I peed more
    5) My periods became irregular and eventually, after 8 months, they stopped all together)
    6) Eventually, I noticed some weight gain, discharge from my breasts and I knew something was wrong. And the spiro stopped working on my hair

    So, I went to endo, and they found out that I had a pituitary tumor (that was secreting excessive prolactin, thus messing up my hormones, making me gain weight and have discharge from breasts). They gave me bromocriptine for a few weeks and sent me on my way.

    A few years later, with my hair still in shambles, I wanted to go back on spiro, so I did, on my own. It didn’t work and I started to shred worse and my weight was off and it was just bad. I finally found a good endo and after MRI, tests, etc, he was baffled that my original doctor only gave me meds for tumor for a for a few weeks. My prolactin levels were way too high because once you have a pituitary tumor, you have it for life. The treatment is just to keep it small, not let it grow, and keep your prolactin levels low. He put me on Dostinex (cabergoline), which is a newer, more effective med than bromocriptine. He told me I’d need to be on it for life. First month weeks I was on it, i went from 126 lbs, to 116 (which is more my natural weight).. The pounds just melted off. My hair loss did not get better for a very long time though. But everything else normalized. I’ve had periods over the years where my hair seemed 100% better, no thick and great, but much better.Those were times when I was not under much stress. I’ve also had times where it was horrifyingly bad.

    I am a person that will INSTANTLY get thrown into a severe bout of TE from taking almost any medication that even as a 1% chance of hair loss… so over years I’ve battled with this. These days, I feel my hair loss is from medication and also from stress. I did try Rogaine foam for 1.5 years and it did help a bit… lots of new little hairs, but it wasn’t exceptional and eventually it made the skin on my forehead look old, wrinkly, pores got huge…and then I read that it can cause premature wrinkling and I went off it ASAP. I then lost more hair. It’s been an endless battle.

    Now, I just went back on spiro.. I figure that since I take meds for pituitary issues, maybe I’ll be okay. I guess what I’ve never been able to shake is the fact that at one time, spiro really worked wonders on my hair. I was in my mid twenties then and I’m 42 now. Who knows if it will work now. But it makes me wonder, why did it work that time? By the way, I do not have PCOS or endometriosis. I haven’t taken birth control pills since my twenties. I still take ativan for generalized anxiety and sleep, but that’s about it. I’d love to hear some detailed updates from people about how things turned out for them after taking spiro FOR HAIR LOSS. Thanks!

    • I have, for about 6 months. I came off of it to get pregnant. I didn’t notice any regrowth. Most women don’t (some do, though!), but they say it helps to keep what they have, longer.

      • Dif you shed anymore while on rogaine for the 6 months. I’m scared to try because I know this can be a side effect. And when I first started Spiro, my doctors said that hairloss was not a side effect of it nor is it mentioned as a side effect on the list.

        • Shedding is a known side effect – not sure if it’s listed or not, but it’s infuriating that doctors do not know this. A simple Google search (by them, not you!) would yield results saying so. I *think* that if you are more prone to hair loss (like me), it’s more likely.

  5. Thank you for this page. Hair loss woman seems still like a no – go topic.
    I am suffering. Day by day. I can’t imagine yet to wear a clip. I swim and do sport a lot. How I am supposed to wear this? And if I do, I agree that it is really bad.
    It hurts to see other people with full hair. I was running from Doctor to doctor. I have symptoms of PCO but it could not be confirmed 100%. I have a high testosterone level, red face and head and it is alway too hot for me.
    I did try the Spiro 200mg a day. It made me very tired and very very thirsty. Also I continued birth control pill and Rogaine. Sometimes I think its those Swiss Doctors who dont have a clue and they just try to give me everything they know about it. Well I had to stop with all of it. I got so depressend and tired and bc of every stupid thing I began to cry.
    Nowaday I am on a diet. Try to control my weight. Try to live with my hear.

    Sometimes I think it must be the psyche. Then other days I think it’s my high level of testosterone. But when I really think about it, it all began when I had the mononucleosis (kissing disease) in my teenager years.

    I hope one day, that they will find out the true reason, why we have to suffer about this 🙁

    • Our hormones are out of whack. Hormones affect EVERYTHING. Its comin to have emotional issues- anger outburts- crying spells. And then top off the unbalanced hormones with a woman dealing with hair loss- its utter heart wrenching turmoil. Weight, hair, emotions its all coming from endocrine system- as women we have such a delicate balance. Its a tough road to walk. It stole years from my life, people were very cruel- i was laughed at straight in my face so many times. I was walking around & I didnt knw I was bald. I couldnt believe Oprah experienced the same thing-lol. Get a GOOD endo- Lord knows all docs are different. First one I went to didnt give me anything foe hair loss but ridiculed me about my weight- which wasnt from eating! He put me on Metformin- I called office saying I feel like I’m dying, can u give me something else? The lady on phone actually said “No! Take that or nothing” and hung up on me. Later I found out- I was dying. I was taking Metformin & eating 3 grapefruits a day. Here in Texas they dnt have the lable warning not to take w grapefruit. I found out from friend jn Cali- they have sticker on bottle. Find a doctor rhat had compassion & can be empathetic & will work toward helping u b the best u. Obsessing over ur hair loss makes it worse. Find a way to be comfortable & confident, whether that b cute hats- wigs-weaves- ect., while finding what works. I think 200 was too much to take and taking w rogain- i do 50mg 2x a day & bcp pills. It worked b4, I pray it will work again. And also hope to find why I keep hiving up when Im without steroids. Seems like its my adrenals, I have to find out because steroids cause too many side effects esp long term. And they do not help as quickly as b4. Best of luck to u, I’m praying for everyone on this forum.

  6. Hi
    I’m 39 and I’ve been on spiro for 14 months for hair loss only, I don’t have PCOS. I started spiro (100mg once a day) during a lull in my shedding and it was 5 months in the a shed began again. It was a terrible shed, lasting 8 months and reducing my volume by 50%. I now have noticeable bald spots at the top and back of my head and my hair is impossible to style. Although the shed has backed off again I have decided to stop taking the spiro. I am stopping because of the weight I have gained, especially around my belly and hips, dry skin and breast pain. I now have a very regular stabbing pain in one breast that concerns me. I am hoping that going off spiro will not trigger a shed as my hair has not recovered from the last one. I’m interested to hear if anyone else experience weight gain on spiro? I was slim before I went on it, but have gained 5 kg since starting.

      • Did u have any diffuse thinning on top scalp after stopping spirolactone ….my shedding has reduced but have rapid diffuse thinning. I had no hairloss before taking Spiro…. I took it for mild acne which i experienced due to stress. Does hair regrow after diffuse thinning in front

  7. 1) Why were you prescribed Spiro? To treat PCOS prompted hirsutism.
    2) Were you already experiencing hairloss? What about other PCOS-type symptoms? Nope, I never experienced hair loss before starting the spiro. I had amenorrhea (no periods), cystic acne on my back, chest, neck, and face, and obscene hair growth on my legs, groin, chest, arms, face, armpits, and even my feet.
    3) Did Spiro cause your hair to shed at a rapid rate in the beginning? If so, when did it taper off? Yes. It never stopped. For over 8 months I took it, and by the end of the 7th, I could see my scalp. I gave it all the chance in the world and the hair loss just got worse and worse. The only thing that stopped the hair loss was taking a birth control pill in conjunction with the spiro, which I can’t really recommend, as sometimes birth control pills can exacerbate hair loss. But if you’ve ever been on a birth control pill that didn’t cause hair loss, you could try taking it with spiro to see if it stops the hair loss.
    4) Did you see any regrowth? No. Never.
    5) If you were on it for other reasons, i.e. excess body hair, acne, etc., how did it help (presuming it did)? It helped a TON with my acne and body hair growth, and worked relatively quickly. However, I was thirsty all the time, and I experienced pretty bad swelling in my legs and breasts, and I was often pretty tired (I suspect I had low blood pressure from the spiro).
    6) What dose were you on? Started on 25mg and moved up to 200mg, and with every 25 mg dose increase my hair dried out and fell out. It was awful.

    **Finasteride has been proven to help women with both hirsutism and hair loss. It takes a little longer to work (6 months as opposed to weeks with spiro), but it definitely works. I was on 5mg and it helped significantly, and had almost no side effects.

    • J.C., – did the hair you lost while being on the spiro grow back? I was put on spironolactone for hair loss and started very slowly – 12.5 mgs. for a few months, then 25 mgs and now 50. At 50 I am seeing hair shedding and visible thinning that wasn’t there before. 🙁

      A different dermatologist had offered me finasteride and I was leery of it but I am thinking now perhaps that is the better option.

      Did you see any extra shedding with the finasteride? Did it help hair stop shedding / regrow?

  8. First I just want to say THANK YOU for making this blog! It has been a huge comfort for me to know i am not alone!!!

    I am 23, I am not sure when my hair loss started as I always had thin hair but I noticed it 2 years ago, I was on birth control pill for over 4 years and I went off a year ago because my doctor that that may have triggered it. I dont have PCOS. I had like a million tests done and nothing conclusive other than COULD be hormonal or genetic… which is so frustrating! Thankfully mine is not so bad….yet. I am surprised i havent read anyone trying rogaine, my doctor told me to try it 6 months ago I really dont think i has done anything…other than make my hair greasy but at this point ill try anything! I started taking spirolactone 3 months ago (100mg once a day) and i didnt have any dread shead, It slowed down my hair loss ALOT so I am hoping it will grow back! I dont think i have seen any noticeable regrowth. I ve always had regular periods but since going off the pill they have been crazy short and light and my last 3 periods on sprio have been like 1 day! And I had spotting around day 14 which I have never had…So this makes me super nervous. I getting married and want to start a family in the next few years and I am terrified of what will happen when I go off spiro. I am lucky I got an amazing man who supports me but this hair loss is just so hard some days I feel like I cant talk anyone or I dont want to leave my room. I am just so thankful for this blog!!!

    • I went off the Spiro and was able to get pregnant right away. When pregnant your hormones change so much anyways that it’s hard to know if it’s the hormone swings or lack of Spiro that contributes. I’ve been off Spiro for almost two years now and my hair is no worse than it was when I started it.

  9. Hi there, do you mind if I ask to clarify…you have PCOS? I am a thin woman with PCOS and I too have hair thinning on the top of my head. Mine is a little less severe and mainly kept in check by the birth control pill (if I don’t take it my acne and hair loss gets much worse). I too can’t take Spiro or it’s cousin in the birth control pill Yasmin because both make me pee constantly (they can have a diuretic effect) and my electrolytes get out of balance making me very overtired. However, here is what could be the answer: finasteride. It is the same drug given to men that is very successful with them for balding and thinning hair. It is not usually prescribed for women, since it can cause severe birth defects in a male fetus, so you have to be sure you won’t get pregnant. But the good part is, it has 0 side effects, and after 6 months to a year hair loss is stopped and you can also see significant hair regrowth. It has an excellent success rate for thinning hair on the top of the scalp. My dermatologist has prescribed it for me. Other docs may prescribe it if you have PCOS and the resulting too high level of androgen. If you like I can send a “before” pic of me now and then an “after” in 6-12 months! (P.S. I also have two sons, a great hubby and a job. Both sons were conceived via Clomid as, like most women with PCOS I had very irregular ovulation).

    • Would love to see your before/after! Send to cornerofhopeandmane@gmail.com. Yes, I have PCOS – and I am a thin one, too. I’m currently nursing so I’m off the market for any type of meds, but I will certainly start looking into this. I may look into switching derms, too, eventually. Mine won’t prescribe anything for hair, and passes me off to the Endo. And congrats on your family – I know how hard it can be to conceive with crazy ovulation patterns!

      • Lauren for how long did you stopped taking spironolactone before conceiving? Anything you know about what would be an alternative if I stop taking spino in about a month later that when my hair started to fail down. This is a time for me to think of a pregnancy but Spino is stopping me …

        Natalia

        • I stopped it probably around 4-5 months prior. I don’t know of any alternative, unfortunately. It’s usually best to be as natural as you can while trying to conceive/while pregnant.

    • Hi I am also suffering from endometriosis and now facial hair and acne and hair thinning . Don’t know if it’s pcos as my ultrasound didn’t show that and the blood work came fine . I have iron and cut d low and am put on supplements for that . I started spiro 50 mg 8 months ago and took for 6 months . My skin and face cleared completely but my hair was thinning . I left spiro 2 months ago and am experiencing a dreadful shed and extreme hair thinking . The texture of my silky hair is also gone to dry and rough . The derm and endo docs have asked me to start spiro again . Am scared it might thin my hair further . Pl advice . Also if you can tell me how you regrew your hair . Thx

  10. So ladies, since my last post in late March I have decided to stop taking the Spiro. I was on it since September at 100 mgs a day and it was doing absolutely nothing for me, in fact I think it was making things worse and it did a number on my skin. In mid April I started reducing the dose because I was afraid to just completely stop taking it so every 5 days I would lower it by 12.5. So at first I cut up the pills and did 87.5 mgs for 5 days, then 75 mgs etc etc. It took me almost 6 weeks but now I am totally off of it and my skin looks a lot better. It just dried up my skin so bad I feel it was aging me terribly, I couldn’t take it anymore. You can always hide hair, you can’t hide your face lol.
    Also, honestly, if anything it increased my shed and I feel like the less I took, the less I shed. I know it works for many people but for some it doesn’t and it didn’t for me. I also feel it made me incredibly depressed and I just couldn’t handle it anymore. I don’t want to discourage anyone because it may work but I just want people to be aware of the possible side effects.
    On my little hair journey here, I needed to try it so I could assure myself I tried my options, and I believe I needed to get that depressed so I could say to myself enough is enough. I am still able to rock my real hair, although its thin and pin straight, and I do curl it occasionally but thanks to Lauren I have taken the leap and am wearing a topper sometimes too and loving it. So ladies, if you’re debating that decision, go for it. There will be some pitfalls but I feel 100 percent better than I did 2 months ago about myself and the future. I almost don’t care if people know or not either. I mean, obviously I want the topper to look real and natural and good!! But so many people have extensions, toppers, hair clip in things these days, I’m like “yeah, its a clip in hair thingy, so what”!! Sorry for the babbling just wanted to share and send some encouragement to those on the fence about a topper. I cried for a year straight, 12 months about my freakin’ hair, and I’m sure I’ll have some sad, frustrating days in the future about it too but I’m not wasting anymore of my tears or my life on this. Every day I woke up worried about how I was going to style this crappy hair of mine. Now I just wake up and know I have my topper and I can feel good about myself again.
    Lauren, thank you so much for this blog, your emails, and your humor. It has helped a lot of us I am sure.Have a great holiday weekend ladies.

    • I was prescribed Spirolactone as well for my hair loss. I originally started on a dose of 50 and then my Dermatologist increased my dose to 100 as I was t seeing any improvement. I felt absolutely terrible while on Spirolactone. I was dizzy, severely depressed and losing a lot more hair. My periods also became very heavy and would last all month long! I was advised by my Internal medicine doc to stop taking it. I stopped taking Spirolactone about a month and a half now and am still experiencing a lot of shedding. My hair appears a lot thinner and limp with scalp soreness. The depression has not gotten any better. In fact worse!!!!! I can’t seem to snap out of it. My periods have normalized though! I regret taking Spirolactone. Does this shedding ever stop? If so, how long does it take for the hair to stop shedding once stopped taking Spirolactone?

  11. 1) Why were you prescribed Spiro?
    I was prescribed it in November 2013 for androgenetic alopecia.

    2) Were you already experiencing hairloss? What about other PCOS-type symptoms?
    Yes, I’d been losing hair for a few years. I had excess hair, irregular periods and acne as a teenager, but they’ve all been under control since I went on the Diane 35 birth control pill at 18 (I’m 30 now).

    3) Did Spiro cause your hair to shed at a rapid rate in the beginning? If so, when did it taper off?
    No, I didn’t notice any shedding.

    4) Did you see any regrowth?
    I think my hair is shedding less now, but I haven’t seen any regrowth. A couple of weeks ago I decided to start Rogaine too.

    5) If you were on it for other reasons, i.e. excess body hair, acne, etc., how did it help (presuming it did)?
    After taking it for a couple of weeks I noticed my skin and hair were less oily, and my skin was clearer. After about four months, my body hair was noticeably finer and growing more slowly. Diane 35 was already helping a lot with these, but adding Spiro improved things even more.

    6) What dose were you on?
    I started on 100mg and increased to 200mg in January. I had some side effects in the beginning, but it wasn’t too bad and they’re mostly gone now. Occasionally I just get a little lightheaded if I stand up too quickly.

  12. Hi, I am so glad I found your site! Your positivity is inspiring. 🙂

    I took Spiro for about a year and was on 100 mg 2x a day. I don’t have PCOS and was taking it to thicken/preserve the hair I had. When I was on it, I also was on Ocella (the generic form of Yasmin). I would have crazy cravings for chips, pickles and hot sauce. Being a diuretic, this made sense for me to want the salt my body was losing.

    Despite my attempts to drink more water, I don’t think it was enough. I developed a corneal abrasion about 8 months into taking it. I woke up one morning and my eyelid must have been partially open throughout the night – that coupled with the heating vent near my bed and perhaps being dehydrated, I went through some horrific pain. I had no idea how many nerve endings are in the cornea!!
    My optometrist got me through that and then a few months later – just in time for my wedding! – I developed severe dry eyes. It was so bad I couldn’t wear my contacts! It was about a week to 10 days from my wedding and I was freaking out about having to possibly wear my glasses.
    This time, I went to an opthamologist who sorted everything out. She and my optometrist, however, never made the connection to the Spiro, but I truly feel that it is what caused the eye problems.

    Needless to say, shortly after my wedding, I went off the Spiro. That was three years ago! My hair is still the same. I can’t say that I am losing more hair or that it is thinner, but despite hair products and supplements I’ve tried, it certainly hasn’t improved. It is so fine and slick!! It never used to be like that even 5-6 years ago (I’m now 34). My husband is so sweet because it seems like every time we go out, I always complain about how I hate my hair.

    I will keep trying new “tricks” and trying to stay positive.
    Thanks for this site!

  13. Hi! I have been on 75mg day since Nov. I was prescribed spiro for androgenic alopecia. At the same time, I started using 2%rogaine. I no longer experience shedding. I have seen regrowth on the sides on my hair and slight regrowth on the top. I did experience a slight increase in shedding in the beginning but that is also do to rogaine. I don’t see myself ever not using spiro. I already have 2 kids and started ortho tri cycl lo with the spiro. Not sure if that has helped as well. Additionally, my face and hair is sooo much less oily but I do still get an occasional pimple. Hope this help! Good luck

    • That’s hard – is the regrowth from the Spiro or the Rogaine or both? Or the b.c.? It’s all such a mystery! I did like my face quite a lot when I was on Spiro, too!

    • How long did it take for spiro to stop your shedding . My shedding started after I stopped taking spiro . And now restarted but have lost 50% volume in last 4 months and hair is still shedding . I have restated spiro 50 mg since last one month but my hair shedding has not reduced .pl state how much time spiro took to stop your shedding .

  14. Hi all,

    I was prescribed Spironolactone about 5 years ago (I didn’t get my PCOS Dx until May 2013), and have taken it ever since (sort of).

    I went to a dermatology specialist because I was fed up with my adult acne (I didn’t have acne at all as a teen, it started when I was about 20), at age 27. I had tried everything at that point from Proactive to The Regimine to Accutaine. I had weird combo acne that included typical pustule pimples, giant cystic monstrosities, blackheads, and a little bit of roseacea on my upper cheeks. I also had an annoying combo of oily (forehead to mid nose) and dry (mostly entire cheeks and sometimes around my mouth) skin. The specialist evaluated my history and suggested a somewhat unknown medication (at the time) that had shown some success with off-label use for persistent (especially cystic) adult acne. I decided to give it a try.

    Before taking the first pill, I went home and did a ton a research online. I could only find a few references of its use related to acne but most seemed positive. I also read that some claimed it caused brain and other tumors and tons of other horror stories. That was scary! Because I am vain enough to be willing to risk tumors (pretty sad huh?) I decided to give it a shot.

    The 1st 2 weeks were HORRIBLE. I don’t know if it was just me, or those already prone to headaches/migraines, or if it is common but it triggered some of the worst migraines I have ever had! I stuck with it though because I had found one site that reported something similar but that they went away. It took about 2 weeks for my body to adjust and one day the headaches were gone. Also right about that time, I noticed that not only were my headaches gone but…so was my acne!

    After one month on Spiro I hadn’t had any new breakouts and all my existing acne was mostly healed. My skin also evened out (not so dry/oily in problem areas), and the blackheads (nose) mostly went away. The roseacea on my upper cheeks was gone completely. I am sure everything would have been 100% gone if I actually took the time to wash my face every night – I am embarrassingly lazy about that, but I justify it as okay by the fact that I rarely wear makeup. It is when I do wear makeup (only use Bare Minerals powder + eye makeup) that I make sure to wash at night. Also I noticed that I felt less bloated and learned that Spiro is a diuretic which can help reduce water weight and bloating. All in all, I completely loved it. I honestly don’t know what affect it had on my hair as that wasn’t a concern at the time. I have always had thin, and very baby fine hair and a wicked widows peak hairline, but it wasn’t abnormally thin at that point.

    I have been taking Spiro ever since and after about 5 years, it still works just as well. I will get an occasional breakouts (a few pimples or one solitary cystic bump), but they heal pretty quickly and I am now convinced they are a direct result of something I ate.

    I was finally diagnosed with PCOS in May of last year and it was like a switch flipped. Suddenly all of my health issues finally made sense. I cannot even begin to count how many different doctors I have seen for the many different issues, but each only tried to diagnose and treat the since symptom. Now there was finally a connections or explanation for them ALL.

    Anyhoo, after being Dx with PCOS, I did a cold turkey diet change to eating only 100% all natural ingredients (organic whenever possible), no dairy and very limited soy, and making sure to eat equal protein with any natural sugar or carbs. I included this info because I think it related to my Spiro use. I ran out about 2 weeks ago and actually haven’t had any of my old symptoms return. I think this is because of my change in diet over the last year. Now I am wondering if I need to continue taking it at all. I will give it another 2 weeks to be sure.

    It is also important to add that the few times I did cheat on my diet in the last year (pizza, ice cream, candy at the movies, soda a few times, and cheesecake), each and every time resulted in a breakout, even while on Spiro. The severity was always different. The absolute worst was when I got cocky (I had been feeling so well lately) and had candy and soda at the theater. I ended up with a raging migraine and the worst breakout I have ever had, on my entire face, on my scalp, down my neck, and a little on my back. Plus a few cystic bumps elsewhere in uncomfy places on my body. It was awful! The pimples on my face and neck actually scabbed over and looked like I had some skin disease. I went to the Dr and he have me a steroid shot and an antibiotic to help clear it up. It didn’t work. After a week of not leaving the house (vain remember?), I turned to home remedies. I found a site that recommended organic cold pressed jojoba oil and had it shipped overnight. I don’t know if this is typical or not but after rubbing it all over my face and neck before bed, by the next morning my skin was at least 50% healed. It was pretty incredible. I hate the oily feeling of the stuff but continued to use it day and night and within 3 days my face was completely healed and clear. I try to use it at night to this day whenever I remember. So this might also be contributing to why I haven’t had any breakouts since going off Spiro. I honestly don’t know.

    Finally, it is also worth noting that anytime I forgot to take the Spiro or ran out (both before and after the diet change) I get REALLY tired, like naps become necessary to function and it is still hard to stay awake kind of tired, get behind the eyes caffeine withdrawal or tension headaches, have muscle fatigue so bad it feels like it takes monumental effort just to raise my arms to brush my hair, and retain water/feel bloated. It has been just over 2 weeks this time since I ran out and though the skin issues haven’t returned, the Spiro withdrawal symptoms seem to be hanging on longer than normal. The first few days were the worst but I am still tired and have a little muscle fatigue. I am also a little bloated but have been making an effort to drink tons of water (seems so counter intuitive!) so it is slowly going away. I hope I will get my energy back soon!

    So there it is, my journey as it relates to taking Spironolactone. I hope it is helpful for someone! 🙂

    • I have almost identical story with Spironolactone. Have been taking it for over 5 years. All doctors say I would have to stop taking it at least for 6 month if I am planning to get pregnant …. I tried once to stop taking spino but about a month later got severe hair falling! Can you please share if you went back on spino or stopped it?

      • Hi! I was on Spiro and yaz for 4 years and decided to give my body a break went off of it 6 months ago and I feel like I lost around 50% of my hair- I’ve went back on Spiro in the past 2 weeks but was wondering what your experience has been?

  15. Hi!
    i’ve been reading your blog for the past few months since my shed started, and i have to say that your cheeriness makes me feel a lot better and hopeful. I started lowing an enormous amount of hair back in July 2013. 4 months after starting taking the BC pill. I stopped taking it immediately after I started shedding, which mustn’t have helped. After a long series of blood tests and visits to doctors, I was found to be slightly hyperandrogenic, which led me to go see an endocrinologist, who prescribed me 100mg once a day of Spiro. I wasn’t 100% diagnosed with PCOS, but its likely since my periods are irregular as well.. I’m on my fifth month on spiro.
    I did not really notice an increase in hair shedding with the spiro. Back in september, without the spiro, I was shedding 200-300 hairs a day. During my second month on spiro i was shedding around 30 hairs a day, but now it has bumped back up to around 50-60, and I’m praying that it stays that way.
    I am seeing some regrowth although not as much as I want to, but i’m giving my hair time to adapt.
    This hair loss has really destroyed my self-confidence. Back before July, my hair was down to my upper thigh, and while it was fine hair, I had a lot of it. I had to cut it short because I couldn’t bear seeing all that hair falling. I’m only 18 years old and I worry daily about my hair, I can’t seem to think about anything else. Hopefully everything gets better soon and I progressively become less depressed and return to my happy self.
    Again, thanks for your posts, seeing other people go through this and come out smiling really brings up my mood 🙂

  16. Hi girls!
    I’m 24 years old and I’ve been on once-daily 100mg Spiro for about a month now. I’m also taking birth control pills and a biotin supplement. I was prescribed Spiro for hair loss. I do have PCOS also though.. but no major symptoms.

    I didn’t notice hair loss until about 4 or so years ago when looking at pictures of myself from high school. I had so much hair!! And I remember how thick my braids and pony tails were. Now, braiding my hair makes me sad.. same with putting it in a pony tail. No one notices the hair loss because when my hair is down, it still looks thick because it’s curly and frizzy. But the amount of hair loss I have per day makes me cry sometimes. It never stops shedding. My hairdresser even jokingly asked me once if I’ve begun cancer treatment. It’s ridiculous. I have been under extreme stress for the last several years though, so that may be a factor as to why I’m losing so much. But who knows.

    I did not notice the “dread shed” since beginning Spiro (or any other changes actually). My hair always sheds A LOT. Luckily, Spiro didn’t increase it. I have not noticed any regrowth yet.. Still have my fingers crossed though. At this point, I’m willing to try anything to get my thick, beautiful hair back, even though that will probably never happen. I guess a more realistic hope is for it to stop falling out and maybe re-grow just a little. A girl can hope!

    Looking forward to hearing the rest of your stories! Thank you!

    • Hi I know this was a long time ago but I just stopped taking Spiro and yaz 3 months ago after being on for 5 years and am experiencing extreme hair loss and thinning – any update on your situation or any info you can share?

  17. I have been on spiro for 6 1/2 months at 100 mgs a day. My endo wants me to wait until June ( 9 mos. on) to see how it is doing before increasing to 150 mgs a day. She feels that this is the time I should start seeing an improvement and a derease in shed. However, my derm, who originally put me on it is ok with me starting the higher dose now if I want to. I am so torn as to what to do. I still feel my shed is fairly significant. Not crazy, but a lot compared to what I had prior. I almost feel its worse than before going on it and hasn’t decreased yet at all. I was prescribed it for Androgenic Alopecia only. I have no other issues with PCOS or anything like that. I am 43 1/2 years old. To look at me, you would not know this is happening but I know. My part is wider and I have diffuse thinning so my hair looks less full than it did.
    Kim,
    If you don’t mind I have some questions for you. I’m assuming I have to increase the dose to see any improvement correct? How long before it decreased your shed? Do you feel it is worth it to stay on long term and that there will be benefits if I do?
    Also, question of side effects. I have no problems with menstrual irregularities, dizziness or anything like that. I do have a bit of dry mouth and thirst but nothing unbearable. My concern is with my dry skin on my face and what could be a slight allergic reaction/rash on my face and chest. Very slight but noticable to me. Also, I have small broken capillaries on my cheeks which I never had before. My derm said that the spiro would not cause this. I don’t know if I’m just being paranoid because I’ve read on the web about it causing wrinkles or a rash in rare cases. Maybe its just this horrible winter we’ve had but I’ve never had these issues before. I take nothing else besides this except vitamins. The weird thing is this just started recently, so I would think I would have had a reaction prior to this since I’ve been on it since Sept.
    Sorry for the long post. Just wanted to address all concerns for myself and others since I’m sure we are all curious.

  18. Hi Lauren,
    I was excited when you posted these questions about Spiro because I thought you would get many posts responding about their experience! Maybe more will respond later.
    I was prescribed Spiro for androgenetic alopecia a couple months ago. I have not started taking it after reading many comments about the dread shed and other side effects on the internet.
    I am still on the fence. I prefer not to take any prescription meds and I am lucky not to have to. But after reading about all the “natural” things you can do to combat hair loss, I’m still considering starting the spiro. I was only prescribed 50 mg twice a day to start with.
    So hard to decide what, if anything, will really help.
    Thanks for the website! I enjoy reading your posts and the pictures!

  19. 1) I was prescribed Spiro for elevated testosterone levels related to my thinning hair
    2) Yes, hair loss was the only reason I wanted to go on Spiro and the trigger that sent me to the doctors. The other “pcos” symptoms I have experienced are absent/irregular menstrual cycles and high blood pressure (which I am really not sure is related to my “pcos”)
    3)I don’t think it caused a rapid shed. I have always shed, but I really don’t know if my shed is or ever was considered rapid or excessive. I have never been a strand counter so I don’t know how much I have shed on a daily basis. So no- I did not notice a major shed on or off of Spiro. I just have always shed, always have had a lot of hair strands floating around the bathroom and shower. Even while on Spiro, I still shed, though it could be a “normal” amount.
    4) Yes, I think I have seen regrowth, though nothing significant to fill in my widening part and crown. My first year on Spiro (2006-2007) is when I experienced the most “fill in”- which was at the back top of my head.
    5)No other reasons
    6) I started on 100mg twice per day (200mg total per day). Last year my OB increased the dosage at my request to 200mg twice per day (400mg per day).

    Summary- if you can stay on Spiro for an extended period of time, I think ti’s worth it. You must understand that it takes time to even potentially slow shedding. They say it can take a year, honestly it could be longer- for any potential regrowth. It may slow down your shed and help you keep what you have in less time, but IF it helps you with regrowth, it will definitely take more than a year. If you can commit to it, then it is worth it. I took it for a year and then stopped to get pregnant. I feel it was helping me prior to stopping. I was off it for nearly 2 years and then started again. It’s really hard for me to say with confidence that it’s helping me at this point. I like to believe that at the very least it is helping me to keep the hair I have. My hair is only slightly worse than it was 7 years ago. I think it’s a big more diffuse now. I can get away with using concealers, but have recently gone the topper route. I always have little short fly away annoying hairs that could be regrowth or could be new growth. I will take whatever I can get! However I am now stopping Spiro as I will be trying to conceive within the next few months.

    If anyone has any questions, feel free to ask. I will follow this thread so I will see posts.

  20. I’m at the beginning of using spironolactone – have been taking it for almost a month. I was prescribed this for Androgenic Alopecia. I have generally diffuse thinning and can tell my hairline is getting wispy with miniaturized hairs. So I saw a dermatologist who prescribed 100 mg a day (2 x 50). I’ve been concerned about a bit of an increased shed in the last week or so – the dermatologist said this was normal as the hair cycles through. I wish he could have given me a timeframe for when this will stop. I was told this will take 3 – 4 months to evaluate success, so that is still to be determined. He did say that mainly ‘terminal hairs’ are affected by the increased shed. He had me take photos of the spots I’m concerned about (ugh that was awful) so that I can compare photos in future. Hope to hear more from others further in this process, especially success stories.

    Oh, I seem to be thirstier than usual. It is also a diuretic …

    • My hair came back after a frw years on spiro. I had bern om for like 5 years. But stopped in Jan when i kept getting dizzy, read about it causing halitosis ect. Have lots of trouble with stomach pain, hiatal hernia. Gastro said if i lose weight it would help, i said I barely eat I dnt knw y Im so fat, I dropped 40lbs in like 4 months once I stopped taking spiro. I just figured y take it I’m very comfortable with a sew in weave, but it still felt WONDERFUL! to knw I had beauriful locks under the weave. Well now Im stuk on prednisone daily & the front thinned off again rather quickly. So Im back on spiro,I take bcp with that. So just 1-2 weeks back on Im eating like. Horse & am very sweaty ugh. And my period was never effected by any od these meds. But now my friend didnt visit, im not ready for menopause yet- I dnt knw as a woman I like knwong & my age Im very regular. So its a choice fat/bad breath=hair- thin/better breath=weave/wig… Cant do walkin around bald- it kills me. And even weave u need hair to braid up for the sew in. I like something thats attached & ai dnt need to take off- u can wash, swim, ect. I was fortunate though veey very hi teatosterone, still got every period, no body or facia hair, no deep voice- they said it was enough for me to have full beard. Unfortunately the call ALL cases PCOS- which 3 gynos told me “No. U cant have pcos & get monthly periods” So they jus use PCOS as umbrella term- its coming from adrenals or pituatary- hell somewhere in the endocrine system. Oh yea My heart used to beat up to 178 & 911 had to get me off the track- the spiro stopped these heart palpitarions. They didnt come back on my 8 monrhs off.

      • Please be careful with a types of clip or sew on weave they will ruin your hair and also cause baldness, search for other routes if possible. They have weave that is on clear string now that wont pull and tug at your natural hair.

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