Why I Stopped Propecia

Why I Stopped Propecia
May 13th, 2012

stopping PropeciaI abruptly stopped taking Propecia for my hair loss in late March because of some horrendous health problems I experienced. I had been on the medication for about 5 months, and I felt like my hair shedding was finally slowing down, and most of the side effects I initially had from it had disappeared. I don’t know if I had experienced any growth from the medication, but my hair stopped getting worse while I was on it, and if I had stuck with it just a few more months, I would have known for sure if it was working or not.

So why did I stop it? Things were going decently for me in February and March and I had started eating healthier again, I was trying to make more money, and I started up a new regimen of daily running (something I had never done before). I was feeling good about myself, and then one day I developed this bladder problem where I felt like I drank a giant Big Gulp eight hours earlier and couldn’t find a bathroom. The feeling was constant (even after I peed), and it was horrible. I never gave much thought to women that had overactive bladders, but it’s an awful feeling. I ended up in Urgent Care for the first time in my life – that’s how freaked out I was. After seeing a few doctors and testing negative for UTIs, I decided I had to go off the Propecia in case it was causing the problem. Since Propecia changes your hormones, and there are estrogen receptors in your bladder, I figured there was a chance the Propecia was the culprit. I also had been having really heavy periods for the past year (which started when I went on Spironolactone), so I thought maybe Propecia was causing a fibroid to grow (or causing some sort of hormone imbalance).

After seeing a Urologist who told me I probably had an incurable bladder inflammation disease called Interstitial Cystitis, I lost it. I went into the worst depression of my life and almost ended up in a mental hospital. The doctor told me the urgent urination problem may never go away, and between that, the fact my hair was falling out and I had to give up Propecia – my last ditch effort to save my hair, and the fact that I had no money and no idea how to get a decent job, the stress was just too much. Looking back, I know that Propecia can cause depression, but I was doing okay until the bladder issue struck, so I don’t know if Propecia had any impact on my mental state.

I went down to eating like 500 calories a day because I was so depressed, and between that, going off the Propecia, and my extreme stress and depression, my hair started shedding dramatically again. The only good news is that I finally lost the 15 pounds I’ve been trying to lose the last 5 years. The fact that I couldn’t lose weight until I nearly starved myself to death makes me think I really do have a thyroid problem, which could be making everything worse. I will soon be going to a doctor that does bio-identical hormone testing, which includes testing for thyroid issues, adrenal problems, and hormone imbalances. I’m starting to think my extreme stress has caused an adrenal problem (and maybe the running was too much for my body?), and I have had thyroid problems before that I have never able to treat successfully.

Because of the extreme depression, I was started on an antidepressant. I have been anxious and depressed for years, but was afraid to go on medication because they all potentially cause hair loss and weight gain. Of course my depression and anxiety were so bad these last few years that they probably made my hair loss worse than what any medication could do. I was initially treated with Effexor, but had a severe reaction to it (Serotonin Syndrome), which has permanently changed the vision in my left eye (after just one dose). I then started on Zoloft, and within four days I could feel it working, and now that it’s been a few weeks, I’m back to where I was emotionally before this whole nightmare began. I’m not happy – but I’m able to function. I also started counseling at a free mental health clinic (at least one thing is free, unlike the doctor bills – good grief).

Now that I know I’m going to live, I’m back to facing the fact that my hair is horrible (and it’s a lot worse than it was just two months ago). Even though I feel like this mess was a sign I should stay away from Propecia, I’m still contemplating going back on it. That’s probably a bad idea. I had a pelvic ultrasound done, and it was discovered that I do have a fibroid, and probably a uterine polyp – both of which could be causing the heavy bleeding. And both issues could have been caused by the Spironolactone (and maybe the Propecia).

My bladder problem is better – but not completely cured. There are moments, and even hours, where I feel okay. I still don’t know if I have Interstitial Cystitis or not. For the last few weeks I’ve been on an elimination diet to see if I have hidden food sensitivities that are causing the bladder problem. Since I’ve had sooo many health issues during the past twenty years, I keep wondering if all of my symptoms are caused by one thing – maybe it’s food allergies, or mercury poisoning, or a hormone imbalance, or hypothyroid, or maybe my depression and anxiety are causing most of the issues. I hope I will get some answers from the bio-identical doctor.

I have basically given up on my hair at this point because I’ve run out of hope it will ever get better. Maybe the Zoloft will help, and if I go back on the Propecia maybe that will help too. But I think I’m nearly a lost cause. I had to give up on my hair to save myself, if that makes sense. So that’s what’s been happening with me. I know my blog is frustrating because I am trying to find a cure for hair loss, and I just end up with one dead-end after another. Am I crazy to consider going back on Propecia?

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23 ResponsesLeave a comment
  • Darlene
    May 13, 2012 at 8:16 am

    Have you tried a gluten-free diet? I have a dear friend who went through a horrible period a few years back that had terrible internal and external symptoms that involved his hair and skin…he was so depressed, he couldn’t string two thoughts together, his marriage was falling apart as a result, he lost his job, he had vision issues….and then through essentially what you’re doing, he discovered that he cannot tolerate gluten or dairy. He went off of it and it changed his life. He and his wife (who went gluten/dairy/soy free) have a great blog fromcowstoquinoa dot com and you might find something helpful there. “Weldon’s Story” is his section about what he went through. It all came back to essentially that one thing….I hope you get some answers for your issues, and it’s nice to see you post again.

    • Jeni - Hair Loss Hell
      May 13, 2012 at 4:48 pm

      Yes it’s funny you mention gluten because what I didn’t mention in my post was that the month before this mess happened I started the running to lose weight, and I thought my thyroid was acting up, so I decided to go gluten-free to see if that would help with those two issues. I was off gluten for about a month, and three days after eating it again is when the bladder problem started! I didn’t notice any other changes while I wasn’t eating it. With this current elimination diet I’m on I cut out: gluten, dairy, soy, corn, tomatoes, potatoes, peppers, peanuts, caffeine, sugar, artificial sweeteners, citrus fruits, eggs, alcohol, and a few other things. I have more energy, and after a few weeks my bladder is better (but I’ve also been taking an overactive bladder medication and the Zoloft). A few days ago I started adding foods back in and testing them, and so far tomatoes are the only thing that affected my bladder negatively. Shockingly I’ve done okay with the gluten and dairy (I was sure that was the culprit).

  • tina
    May 14, 2012 at 10:19 am

    Hello Jeni!

    I’m feeling sorry for you, that everything is so bad right now. Everything comes together.
    But i wish you luck and strength to get trough this. I really like your blog, your writing so detailed. And it is brave from you and important for other women who have to handle wiht hair loss. I’m one of those women and know how bad it is, I’m 28. And i’m reading your blog from germany. Now you know why my english is not so good. Because the bladder problem, i just know that a shy bladder can also be psychological problem, as a result of stress your bladder “get the” pressure. Because of taking propecia again: I guess it doenst make no sense, if you dont trust in this product, not because of the hairgrowing-effect, but when you are always afraid of getting any illness from it, then you will always breaking it up, when something happens. and this stop and go thing will not work. I do not using propecia or rogaine, because I’m to much afraid of possible side effects.

    For now. Greetings Tina

  • zenyatta
    May 14, 2012 at 3:52 pm

    With all the terrible health problems you have had, (and I am so sorry for you!) I would advise not to go back on any hair loss products. I have resigned myself to just know that eventually I will have to shave my head and wear a wig. But for now, clip on pieces work wonders. No one has ever asked me if I were wearing a wig or fake hair. And some of my friends I haven’t told (because some people just can’t help themselves with their big mouths) who see me every week don’t notice anything different.

    I wish you good health!

  • J9840
    May 15, 2012 at 9:37 pm

    Hi Jeni,

    I’m a long-time reader of this blog as well as your skin care blog and truly hope everything works out for you and your health.

    I’m also a member of the forums at baldtruthtalk.com and just today someone posted a link to initial results from the phase 2 clinical trials of Histogen that were presented at the SID (Society for Investigative Dermatology) conference recently. It shows photos of cosmetically significant results for women even at only 6 weeks post-injection.


    While it’s still in clinical trials and likely won’t be released until 2014 (in asian countries) or 2015 (US needs more testing), it shows that there are companies out there making progress and there is hope on the horizon. Hope you feel better.

  • J
    May 19, 2012 at 12:27 am

    Hi Jeni, I love your blog! Thank you so much for having the courage to share your story. It really helps to know that I’m not alone, and that there are many options out there. I can’t advise you on the propecia – wish I had the courage to try it, but I’m not quite ready yet…

    As for thyroid problems, I went undiagnosed with Hashimoto’s autoimmune thyroid disease for many years, and in my experience most doctors are completely clueless about diagnosis and treatment. In my own case it wasn’t discovered until my thyroid gland had actually started to atrophy from so many years of being attacked by my own body! Yes, hair loss was a major symptom, but really any cell in the body can be affected, including your heart! If you think you even *might* have a thyroid problem I highly recommend Gena Lee Nolin’s facebook page, “Thyroid Sexy.” There is a ton of good info. and lots of support from everyone.

    I hope you start feeling better soon! Good luck, and please keep posting! :)

  • Hair Care Tips
    May 21, 2012 at 5:12 am

    Hey dear i was really upset due to my hair but after reading your personal experience i am thinking that i also apply these tips on my daily life thanks.

  • Anon
    June 8, 2012 at 4:50 pm

    Please try a bioidentical progesterone cream – the hormone imbalances are terrible for hair, and often cause fibroids, endometriosis, and a whole host of other problems that are all seemingly unconnected. I’ve been through some similar trials, and started a paraben free cream, my hair loss slowed down and then came to a stop. I don’t know if I’ll get new growth, but it was beyond helpful. It did more than just stop my hair from shedding. I read Dr. John Lee’s website – maybe it would be helpful to you too.

    I wanted to comment because I feel so awful about what you’re going through, and can relate to a degree. I usually just read here for comfort for my own hair issues, but maybe my comment can be of help. I don’t know, but I wish you all the best. Try to remember that we are all so much more than our hair, and you are helping all of us by writing about your experience – this world needs you!

  • clc
    June 21, 2012 at 3:40 pm

    Zoloft is bad due to being an SSRI. Serotonin is bad, not good as we’ve been told.

  • Kate
    July 20, 2012 at 2:57 am

    I stumbled across your blog when I was trawling the web looking for an answer to my own suspected AGA (many of the women on my mother’s side have terribly thin hair). Anyway – just wanted to stop by to say I think your blog is amazing – I can so relate to everything you describe – every fear, paranoia, desire, hope for the future….You are doing a great job and I am sure are a comfort to many women going through the same thing. Did you stop the propecia altogether? I hope so – the other issues sound so damaging….
    One thing I wanted to ask about is whether you have considered cutting your hair super short? I too have receding hair at the temples AND diffuse thinning all over the crown and one of the best things I ever did was get a pixie crop. Yes it is short and scary to cut but the cut disguises thinning and covers the patches at my temples and can be styled without a part. Just a thought. It is the only way I can wear my hair these days – after losing a ton recently after having had my first baby (four month mega scary shed) I was totally bald at the temples and only just noticing the hair beginning to fill in a bit in these areas. I suspect I won’t ever have as much hair as I did in the pre-pregnancy days and am struggling with even less hair than usual but still manage to leave the house most days without having a major melt-down….Just taking things one day at a time….
    Also – I went for hypnotherapy recently to help me deal with the anxiety I have about hair loss. Anecdotally stress and AGA are linked. Who knows whether or not it helps but I at least feel less distressed about the whole thing after a session and am working on obsessing less and living more! (easier said than done I know,)
    Love the blog.

    • Jeni - Hair Loss Hell
      July 22, 2012 at 4:32 am

      Thanks for reading my blog. I did stop Propecia completely. I’ve been off it since mid-March, and not a day goes by that I don’t consider going back on it. My hair has shed crazily every day during the past few months, and right before I went off it, I thought it might have just started working. I think it may have messed up my hormone levels (which are all really low now).

      Anyway, I have definitely considered getting a pixie cut and I love the look of women that have short blonde spiky-ish hair (which might not be the best, though for thinning hair). The problem is that I have a long face, and I doubt the haircut would look good on me at all. It would be like Sarah Jessica Parker getting a pixie cut. I know Liv Tyler has worn short hair before and it looked okay on her, but I have a feeling it would be awful on me. I don’t know. I could cut my hair to a bob, but that looks pretty bad on me too, cause I had that hairstyle when I was 12.

      I am always completely stressed, but since I’ve been on medication for anxiety, I am the least stressed now than I have been in years. So far my hair is shedding worse than ever, but in a few more months I will discover once and for all if my reduced anxiety has any impact on my hair. But, of course, the anxiety medication has hair loss as a possible side effect. Without the medication, I was a wreck.

      • Kate
        July 23, 2012 at 4:29 am

        Oh dear – the stress is a bit chicken and egg isn’t it? I have a bad hair day (often) and my anxiety levels go through the roof. I think it’s tough to get out of a cycle of negativity and obsessing but that’s what I am trying to do….
        As for the pixie cut – I’d say don’t rule it out – you could keep it longer at the sides and back to frame your face and short on top. Spiky is a no-no for me – if i did that I would have see-through hair and visible fuzz at my temples but with a cut that pulls hair forward from the crown (- think Michelle Williams and Agnes Deyn -) basically using longer layers from the crown right through the front to build volume into your hair – it means you can take hair from where it is a little thicker to bulk up the front. As you can see I’m a big advocate of going for the chop! I cut mine four years ago and have never looked back and until my recent pregnancy shed it has always helped to disguise the thin areas better than any other style would.
        Oh its a horrible thing to lose your hair. I hope that the shedding slows down for you. I know now from experience how much hormones play a part in the density of hair and hope your levels balance out again soon.
        As an aside, I am on daily iron supplements now which seem to be helping me. Apparently 70 percent of women with AGA also have low iron reserves and benefit from a daily dose of ferritin. I read recently that most doctors report iron levels as normal even if the level needed to grow hair was too low which I found interesting….

  • Lisa
    August 2, 2012 at 4:45 am

    You should try Rogaine for men or Minoxidil. I was once seeing my scalp and now my hair is CRAZY thick. I was scared to use it at first but have seen incredible results. I also use propecia. Dr. Bauman in Boca Raton, Florida has his own which is 6%, more than the drugstore %.
    Anyway, for what it’s worth my hair is completely restored but I do have uterine fibroids. I’m 50 years old and fear that I’m a hormonal mess but at least I have hair!

    • Jeni - Hair Loss Hell
      August 5, 2012 at 12:43 am

      Hi. I do use Rogaine. I tried the 5%, but it gave me horrible headaches, and I tried DNC Spectral (5% minox) but got the headaches from that too. For some reason I can tolerate the 5% on my hairline, and I use th 2% on the rest of my head. I don’t know if it’s really done anything at all for me. My hair still looks horrible, so it’s definitely not the miracle cure for me. That’s great that it’s worked so well for you! You are a rare case! Or maybe it was the combo of Propecia and Rogaine? I’m sorry about your fibroids:( I am a hormonal mess too!

  • Max
    August 2, 2012 at 4:52 pm

    Feel really sorry for what you have to go thrue. I do not think you are a “lost cause”
    Please do find more information about “silver colloidal” and “mms (miracle mineral solution)” . May God in Jesus Bless You.

  • Annie
    August 9, 2012 at 7:17 pm

    Hey there. Gosh, when I read your original post I was really surprised how many things we had in common. I have also been on Propecia for about 9 months. I stopped a couple of months ago after I read in the news that there are many reports and clinical resarch that shows men who are on Propecia often suffer long-term sexual problems (even when they stop the medication). That scared me, even though I’m a woman.

    After about a month, I started losing a lot more hair daily, than usual. SO, I started up taking the Propecia again. My hair is still shedding but I didnt’ do anything else different, so I’m sticking with it another month or two to see if it stablizes. I’ve been losing my hair for 2 years (in October).

    I am ALSO unemployed. I also have no money. I also have been running to deal with the stress and have felt so depressed over this hair loss, which just seems to be getting worse.

    If you are truly worried that the Propecia caused your bladder issues, please do not start taking it again. Did you totally discontinue the Spiro? I tried that for a short time and did NOT like it. It made me very tired and upset my stomach. I’ve no side effects with the Proscar/Propecia. I also have been using Minoxidil 5% for 18 months. It has helped some on the top, but I have very diffuse thinning.

    i hope you don’t stop taking your SSRI! Hang in there. Did you find a new job yet?

    • Jeni - Hair Loss Hell
      August 11, 2012 at 12:34 am

      Hi, I’m sorry you are having hair loss issues too. I got scared when they announced the permanent sexual side effects problem with Propecia too, because I wonder how many other permanent side effects it could cause. In a moment of desperation, I started back up on the Propecia several days ago. I actually finally did get a job, and my hair has been shedding worse than ever the past month (probably from stopping the Propecia, and from the extreme stress I had a few months ago). Right before I got the job, I was planning on going to LA to look for wigs to buy, but now I don’t know when I can go because of the job.

      I was diagnosed with low estrogen after going off Propecia, and I know Propecia increased my estrogen, so I thought maybe that could actually help my bladder issue, and maybe my bladder problem was unrelated to Propecia. My bladder issue has actually been better the last few days (maybe it’s the placebo effect, but it’s better nonetheless). However I know estrogen feeds fibroids (so I worry my fibroid will get worse). I haven’t run at all since the bladder problem hit me. I was afraid the running stressed my pelvic floor muscles, but I know I need to get back into exercising. I did completely discontinue the Spiro because I didn’t feel like it helped at all – the shedding I had never got better, and I didn’t see any improvement in my hair.

      I hope you are able to find a job soon! I know how daunting everything seems when you have no money, your hair is falling out, and there are just so many seemingly insurmountable obstacles in the way!

  • Ali
    October 11, 2012 at 7:03 pm

    wow I just found your blog and feel like I am reading about my own experience. How is your journey going? Noticed you haven’t posted since June. hope you are doing ok.

  • Annie
    October 14, 2012 at 12:16 pm

    Hi, Jeni! Somehow, I missed your reply to me back in August! Sorry about that! I just saw it today.

    How are things going? Are you still taking the Propecia and what about your bladder issues? I would love an update.

    I am STILL unemployed…which stinks (badly!!!) and the hair loss slowed down for a short while. It has never stopped, so don’t get me wrong, but it seems to have slowed to roughly 50 hairs per day (a guesstimate) whereas this summer it was close to 80+ hairs per day. So better, but still not great.

    I am feeling more optimistic about the job situation. That matters more to me now than the hair! Once I get a job, I can focus on being upset about my hair again! Kidding. :)

    I also take Evening Primrose Oil, which I think is helpful for HL. Have you tried that?

  • Fede
    October 22, 2012 at 4:29 am

    In Italy (I’m italian so that’s why my english is bad too) women can’t obtain propecia prescripton: it may cause fertility issues and not only, hope you’ll never restart it.
    Despite my hair-loss related everyday pain, think would be stupid to destroy other parts of my organism.
    Take care, you deserve it.

  • Chrissy
    February 23, 2013 at 9:32 pm

    Hi, I came across your blog after googling hair pieces. I just have to say, reading your blog is like reading my diary. I’ve always had thin hair but I lost a lot of it a few years ago. I too have done all the (expensive) tests and taken Spiro (stopped after a year because of the headaches) and BC (just recently stopped taking it which is why I’m losing more hair). A few years back I had major hair loss a few months after coming off of an anti-depressant (of course the act of being depressed/stress could have caused it too). I’ve ruled out PCOS, a tumor on my pituitary gland, adrenal disease and Lupus. I’ve seen two derm docs and a rheumatoid doc (due to an elevated RH factor). My iron, zinc and folic acid are all normal. Most of the testing done was by a pretty good endocrinologist. There was a test that showed elevated free-testosterone at the very beginning, but it was retested three times after that initial test and came back normal all three times. Then my endo threw in a B12 test which came back borderline def. I showed my new family physician my hair loss and she freaked out (which made me upset). I showed her my low b12 result and insisted I get a b12 shot right away and continue to do so once a month (i’ve had a few shots and i have more energy and other weird symptoms have lessened–thought i saw some new hair growth but stopping BC has changed that). She also sent me to the GI doc in case I was having a problem absorbing b12. I tested negative for celiac and for H. pylori bacteria. The GI doc also performed a test where he put a camera down into my stomach to look for gastritis and ulcers. My stomach samples came back normal for everything. He did say I have IBS and I’ve been taking probiotics and soluble fiber for about a month. I have fantasies of just shaving off all my hair, but I don’t. I constantly look at other women’s hair and can’t figure out what’s wrong with me. I thought for sure it was my thyroid but it’s not. There’s no hair loss in my family–not even dudes. I’m about to start doing a castor oil + emu oil treatment. I’m so sick of doctors telling me to go on Rogaine–like anyone can keep that up for the rest of their life! I haven’t worn my hair down in public for years and now I’m at the point where i can’t even hide my hair loss with a ponytail. It consumes my thoughts daily. Sorry for the rant, just wanted you to know that you’re not the only one going through this.

    *P.S. A note of hope, I did find out from my last derm doc that Latisse(eye lash growth gel) has been used to regrow head hair. And it could hit the pharmacy this year! I also found a dude online who bought a bunch of Latisse (tiny bottles) online. He did it himself and had some good results and maintenance was just 3 applications a week. Crossing my fingers!

  • belle
    June 20, 2013 at 9:33 am

    Hello. I hope you are out there doing well and can respond. I am struggling with hair loss due to low thyroid, low ferritin, and stress. The doctors don’t seem to be concerned abotu my hair loss or listen to my concerns. I am on T4 (Levothyroxine) for my thyroid. the doctor thinks it’s helping my thryoid levels, but many peopel say it causes them extra hairloss. I am considering trying Rogaine or somethign liek that to hold on to what I have.
    I have always been an anxious person and this hair loss makes me worse than ever. i went to a therapist, but the expense and brinign up lots of upsetting issues in my life made me feel worse. She wanted me to come more often, and she had a psychiatrist recommend medication to me. I am afraid to try anti-anxiety & anti-depressants because of side effects. I think they will make me worry more. But did you find that the lowered anxiety helped your hairloss at all?

    Please let me know.

    Your blog is great. I’ve foudn some good information in the commentys. Sometimes the articles calling out celebrities hairlines and parts makes me feel sad and self-conscious though, because I don’t want people to scrutinize me like that, and they don’t look so bad. My hair looks terrible unce rht e bathroom light and in photos. i have very white skin and dark hair so the part really shows. I also have greys, but my hair is so dry and thin I hate to dye it.

    Sigh. Anyway, I wonder if anyone has had any success. I wish I didn’t have to live with this and would rather just be hit by a bus and die instantly sometimes. Sorry, as you know, it’s so hard.

    I hope and pray we all get some comfort and improvement.

  • cindi
    August 4, 2013 at 11:16 pm

    Hi Jeni, I just discovered your website. I am a 50 year old who used to have a wonderful head of hair, fine but I had a ton of hair! At 32 I was diagnosed with stage 4 lymphoma and underwent a bone marrow transplant. The procedure saved my life but also put me into instant menopause at age 32… Well 19 years later I am still alive but i also have the hair of a 70 year old woman! It never came back as thick and has increasingly thinned ever since. For the past couple of years I’ve noticed a dramatic change and it’s really depressing me. My hair loss is all over thinning, no bald spots but on top of it this year the hair seemed to become dry and frizzy, not shiny at all. I can see through it and I totally hate looking in the mirror any more! I haven’t tried anything yet, after beating cancer I’m afraid to put any chemicals in my body. Wearing a wig sucks, been there done that during cancer treatment. I constantly look at womens hair and wonder why me??

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