Has anyone experienced hair loss while taking spironolactone?

June 2016 I started to notice that my hair kept parting down the middle on its own, and my mom said she noticed my previously coarse hair was turning softer/finer. I paid her no mind. I started out with so much hair that I sometimes dreamt of shaving my head. So at this point I was happy my hair was becoming a bit sleeker and more manageable. I was still getting compliments from the hair salons I went to and random strangers.

November 2016, I got out of the shower and looked at myself in the mirror, I could see the crown of my head, and I freaked out. I went to the dermatologist, she ran some blood work and told me my testosterone levels were elevated (but they were still within the “normal” range, whatever that is) and sent me to an endocrinologist.

January 2017, the endo told me the only thing that could be causing the hair loss was my higher levels of testosterone. He told me that the spiro must’ve actually been slowing the hair loss process. He said he couldn’t do anything for me but bump up my spiro prescription to 200mg per day. I trusted his judgement and have taken 200mg for a year and a half. It messed my period up, and makes me very dizzy. I have also lost weight (but I don’t know if I can attribute it to the spiro).

Fast forward to today. July 2018 – I have a very wide, white part and can barely look at the sight of my head without crying (this has been the case for almost two years now). My hair is fine, and frizzy and dry. And when I scratch my head, little baby see-through hairs come out, along with the beautiful, long dark brown ones that constantly remind me of what’s going on in my body. I have made an appointment with my derm and endo to finally address what I’ve thought all along- that spiro is causing the hair loss. I plan on completely stopping spiro and resorting to topical medications. I will still use my hormonal birth control though as I’ve been on that for many years.

Hair loss isn’t just a cosmetic issue. It’s a mental health issue. I wish I had questioned my endocrinologist sooner, but I wanted to be patient and give the spironolactone time to kick in. I’ll try to let you know what happens.

Fast forward to July 2018. My skin looks amazing (besides 1 zit every cycle) but my hair is thinning so badly. I'm developing a bald spot on my right temple but, not my left. I have always had very, very thick hair so, I haven't noticed it falling out any more than normal but, I am getting at least one bald spot & overall thinning hair. My part looks wider, too. For reference, my cycle has been completely normal (I don't take any type of BC). I get my period on time every month. I don't know what to do at this point.

I am seriously relieved I'm not the only one or else I would have assumed it was something else. I have 25mg pills so I've cut back to 75mg/day. I guess I'll keep tapering down until the acne comes back and see what happens. I'm going to go see a new derm (I've moved since I started the med) and hopefully they'll have another solution. It seems from everyone's experience the solution is really about trial and error, unfortunately.

Also, my younger sister recently turned 24 and started developing hormonal acne too. Before my hair loss, I recommended she try spiro. She started taking it a few months ago and she is getting the same bald spot! Both of our parents and grandparents have full heads of hair so, I don't think the hair loss is necessarily due to genetics in this situation. I think it's the spiro. Thank you all for sharing your experience and I hope this helps someone, too!

I'm not sure why it seems to work for a while and then stop unless the medicine itself is part to blame (affects other hormones, lowers blood pressure too much, etc.) or whatever issue I have that is causing hairloss (presumable adrogenic alopecia) is just getting worse. Although I do have a 47 y.o. brother with some moderate male pattern loss, no women or other men have any significant loss (my 75 year old dad's hair is not as thick as it once was but no balding).
It really is devastating emotionally. During the initial shedding 4 years ago, I was so anxiety ridden I lost nealy 20 pounds and am only about 115 normally (that probably added to some shedding as well). I hate when someone says it must just be genetic!! If it is the spiro, then I'd be quitting tomorrow, but my fear is that it will only get worse when I stop.

I do understand that anytime you mess with your hormones, you can have some shedding and that the hair cycle is not short and therefore it can take time to re-adjust, but...

If anyone else has successfully weaned off spironolactone and in time had their hair loss settle back down, I'd love to hear about it. It seems crazy in 2018 we dont have better answers!!

February 16, 2018: I started taking Spiro 50mg once daily. The only side effect I experienced was increased urination.
March 2018: I had a break out of 3 nodules during the 5th week of taking Spiro, I didn't let this bother me too much because I had read that other women experienced a break out at this time. I started getting my menstrual cycle every 2 weeks, which was very odd for me since my cycle is usually between 33-45 days. I started noticing hair loss at the end of March, and took the first photo of my hair part.
April 2018: My skin began to clear. Almost no acne, and no sebum, my pores looked like they shrank! I was ecstatic at the look of my skin, but by the end of April I knew something was wrong with my hair. I got my hair cut and colored on April 24th, and a few days later, it was breaking/falling out significantly more. I get my hair colored regularly since I was 19 without problems, so I'm not sure if the increased hair loss was a coincidence, or if the chemicals from hair processing pushed it a bit. I got really nervous so I started taking only 25mg of Spiro daily.
May 11, 2018: I had been taking Spiro for 12 weeks now and my skin looks great. BUT, my hair is still noticeably falling out, and plus I was feeling drowsy, dizzy, and could not perform my work outs as well as I used to.
May 14, 2018: I could now tell that my hair looked like it had thinned. I got even more nervous and called my dermatologist to schedule an appointment. I started taking spiro 25mg just once every three days.
May 24, 2018: I saw my dermatologist and he confirmed that I had telogen effluvium. We talked for awhile and concluded that it was most likely Spiro causing the TE. However, since my skin did look good, my dermatologist encouraged me to continue taking a very low dose of Spiro until September, at which time we would be able to tell if the hair loss would slow at a lower dose and if I should continue taking the medication. I am getting married in June 2019, so he knew my biggest concern was having hair at my wedding!
May 29, 2018: I had labs drawn and saw my PCP, everything was within normal range.
June 2018: I started using minoxidil (Rogaine) serum once daily because I read that it helped some people with TE. I saw that an increase in hair loss is a side effect for the first two weeks. But after three weeks using minoxidil, my hair was falling out like crazy. Big clumps in the shower, and just continual falling throughout the day. I stopped taking Spiro about 1.5 weeks ago, and stopped using the minoxidil about a week ago, and my hair is still falling out more than it ever was before. If it continues at this rate, I will be able to see my scalp in a few weeks. The worst part is that it gets very greasy very quick now. My skin still looks ok, fingers crossed that the amoxicillin will help keep it clear. The start of my last period was 45 days ago now, so I'm not sure what's up with that, pregnancy test was negative. I am contemplating starting to take half of a 25mg Spiro pill twice per week, because I'm wondering if stopping the med is why my hair has fallen out so much more. But I feel like I just need to get through this time and let my body figure it out on it's own.

Just like all of you, mentally I am having a very hard time with this. It's all I can think about and I am letting it take control of parts of my life which logically I know is so wrong. My fiance is pretty sick of hearing me complain about it and all of my friends say they can't tell a difference. Trust me, as of this week, you can. I started this medication in hopes for clear skin, and the few weeks of perfect skin were certainly not worth 1-2 years of thinned hair. My biggest fear is that I will not have hair at my wedding next spring.

I understand that everyone's experience is different, but if you are reading this and went through the same, do you mind sharing at what point in your Spiro course you started shedding, when the shedding stopped, and when you could see hair regrowth?

I used to keep my hair at shoulder length, it is now waist length because I stopped cutting it and it is thick and full. Hair falling out is an adverse reaction and it's no telling what damage it is doing to you internally.

The only difference was the new spiro meds in my routine. I'd rather have my hair back then have no pimples. The latter is the lesser of d two evils. The rate of hair fall is not keeping up w the hair regeneration. Devastating experience. Someone needs to do more research on this.

I've had to be put on topical steroids because it turns out the itching was inflammation in my scalp and it was causing the shedding. I haven't taken spiro in months but my scalp is still so sensitive that I can't even use hair products.
The topical steroids are the only reason the hair stopped shedding so profusely. I want to add that I did go through a very stressful period of my life this last year as well. I think the stress combined with the effects of spiro caused the TE. I would like to treat the androgenic alopecia with topical minoxidil but it is too harsh on my scalp and increases my shedding. I'm hoping that a good course of topical steroids will calm everything down and in a few months I can try minoxidil again. I will NEVER touch spiro again, I don't care what my dermatologist says about it NOT causing hair loss, this drug definitely did not help the hair loss and I believe it made it worse. I will deal with the cystic acne, I would rather have acne and hair than no acne and no hair. Right now I have acne and no hair, which is really depressing.
I have been taking viviscal supplements and they are making my nails grow like crazy and also my body hair. I've only been taking them for a month and a half so the verdict is still out on the hair growth.
I just wanted to put this out there for anyone else taking spiro and having hair loss and itching and burning scalp. If you stop the spiro, and it doesn't improve, ask your derm for a topical steroid. It immediately slowed my hair loss to at least 25% of what I was losing before. I wish I would have known this months ago, I could have saved a lot of my hair. I'm just hoping that eventually my scalp will return to normal and i will regrow some of what I lost. I don't feel like myself without my hair. Good luck to all of you!