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Spironolactone shed??!

Discussion in 'Women's General Hair Loss Discussions' started by sheeny, Jul 7, 2015.

  1. sheeny

    sheeny Established Member

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    Hi ladies! I've been off of the forum for a while because things had stabilized (sort of) with me. I got a biopsy report back that indicated I was in cte, although my crown & vertex seem to be the hardest areas hit. After an endo appt in June & an ultrasound of my ovaries she diagnosed me with pcos due to the vast amount of immature follicles found, plus my oily skin, scalp, prevalence of body hair in other areas. Hormones seem ok at this time although I had low estrogen on day 3 of my June cycle and my lh/ fsh ratio has fluctuated in the past few months. Anyhow, my shed in early June had been down (40-80 hairs depending on if I washed it) and I could see more of the regrowth, although nowhere near enough to catch up with the loss & cover sparse areas.
    About 3 weeks ago I began taking 12.5mg of Spironolactone and after a week started 25mg. My endo wanted me to start at 50mg but I really wanted to go slow. Almost instantly my oily skin, back acne, scalp oil reduced by 75%. My shed was lower for the first 2 weeks as well. I would only shed maybe 40 hairs after washing. Last week my shed went up just a little, but today it was huge. probably between 150/200 hairs after washing. I'm so upset. Every time I touch my hair another falls out.
    It just so happened that I had a derm appointment ( with a dr that specializes in hair loss at the Hair &Scalp Disorders clinic at UCLA) yesterday & she agreed that I was just slightly recovering from what has been a 7+month episode of TE shedding-wise & had some regrowth, but I still had a long way to go. My hair had not yet experienced the massive shed that I had today. She also said that based on my pcos, Spironolactone wouldn't be effective until I hit at least 100mg, and that 25 mg wouldn't do anything for my skin or calm a shed.
    I just feel so let down. I'm pretty sure I just kicked off another te shed by taking Spironolactone & it is such a small dose. There has been nothing else in my system that could be causing it besides the supplements that I've been taking for months.
    Anyone out there experience a shed from Spironolactone 3 weeks in? Does it get better? I'm so tempted to quit but then I'll never know if it was worth it. I would love to hear a positive success story right about now...
     
  2. Noalani

    Noalani Established Member

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    Hi sheeny,

    Sorry you're experiencing this shed. It sounds like you've been quite busy pursuing answers for yourself, so that's awesome.

    I also started Spironolactone--June 3rd, to be exact. So, I started at 25 mg/day, went to 50 mg/day after two weeks, and then just recently increased to 75 mg/day. The plan is for me to continue to increase by 25 mg every two weeks, as long as my blood pressure and labs are good. I haven't noticed any increased shed, but my hair fall seems to fluctuate on a daily basis, which I think is MY normal. I'd say I shed between 80-125. It seems like, no matter what, this is what falls! I, too, have noticed improvement in my skin and reduced oil production. I'll be sure to update you if I notice some sort of drastic increase or reduction in my hair shed. I have read that the ideal Spironolactone dosage for treating hair loss is from 100 to 200 mg per day. It seems that many professionals like to dose at least at 150 mg/day-200 mg/day. So, if you can hang in there, you may find it improves.

    I remember when you first made the appointment with this UCLA derm! How did you like her? Did she give you any other treatment ideas?

    Continued best wishes to you!
     
  3. sheeny

    sheeny Established Member

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    Hi Anne! So nice to hear from you! I'm glad at least your experience (so far) with Spironolactone hasn't been bad. Hopefully it kicks in for you soon & you can see some progress with your hair, too. I must say, although the shed is awful, it has been nice to have "normal" skin for once in my life. My skin has been oily since I was 11 years old- I was never able to control it!
    My experience with Dr. Goh was positive overall. First of all, she has alopecia so she comes from a different perspective than most doctors. UCLA os a teaching hospital which is so different from any other private practice appt I've ever been to. I had Dr. Goh, 2 residents, & a medical student in the room all discussing my scalp ;) She didn't really offer any new information, really. I do regret not going to her first instead of ALL of the other drs I went to before her. She basically summarized everything I've heard in the past 7 months all in 45 mins.
    She also is of the opinion that a scalp biopsy, no matter how credible the pathologist, is not very helpful in determining between Androgenetic Alopecia & TE because even if taken from the most visibly affected area of the scalp you don't really know what is happening with those hairs, and something completely different could be going on at the same time 2 inches over. ( but she did say a biopsy was essential for determining scarring alopecias) I'm not sure how i feel about that, but I'm not the medical expert. She thinks my loss is hormonal & basically my best bet to continue as much regrowth as possible was to work with my endo. There is nothing topical or oral that will really stop a shed once it is kicked off in your body besides remove the trigger, and she said the only time she sees a shed "stop" right away is when correcting a thyroid issue. She also recommended to move up to between 100mg & 200mg of Spironolactone but to work with my endo on that.
    She ( and the other drs) looked all over my scalp with the little microscope& saw hairs growing of various lengths & said that hair takes time to cycle through & I prob won't see significant improvement for another year.
    So that was that! I feel like I am done with doctors at this point, I've seen the best that I can see & now it's just a long wait to see if things improve. This shed has set me back though :(
    Please keep me posted on your Spironolactone experience- good & bad!!! I hope for the best for you!
     
  4. Noalani

    Noalani Established Member

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    Hi again, Sheeny,

    It's great to hear that you had a positive experience with Dr. Goh. You must've felt like quite the guinea pig! Interesting to learn what her opinion is on scalp biopsies.

    I totally hear you regarding the much-improved skin on Spironolactone. It's been a welcome relief to not have breakouts lurking beneath the skin surface or to not be a complete oil well by noon! Like you, my skin has been normalizing. That tells me that we ARE sensitive to DHT's effects on our follicles, scalp, etc.

    Tomorrow, my Spironolactone dosage will be upped to 100 mg. I just had lab tests run and everything is normal. How's your shed and what's your dose right now? Will you be trying to increase it now that you've had input from Dr. Goh? Hope all is going well and that your shed is calming down.
     
  5. sheeny

    sheeny Established Member

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    I'm so glad that your body is adjusting well to the Spironolactone!
    I have definitely noticed that if I drink tons of water I feel pretty "normal" on it. I see my endo again next Monday, so I plan on asking her about upping the dose. I don't think she will be opposed to it.
    My shed is slightly higher than it was before Spironolactone but not by much. It might just be because I'm soooo hyper aware of it now but who knows for sure.
    Have a great week & good luck with your dose increase. Please check in & keep me posted!!
    Xo
     
  6. Noalani

    Noalani Established Member

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    Hi sheeny,

    I wanted to give you further Spironolactone update. I'm at 100 mg/day dosage of the Spironolactone (since July 13), started a lower dose of 25 mg on June 3 and slowly titrated up. The last couple days I've felt that my shed has increased slightly...I'll take it as a positive sign that my telogen hairs are being shifted into the anagen phase and so they are departing my scalp!! When I pull my hair back along various parts of my scalp with a fine-tooth comb, I see signs of regrowth, so I'm going to remain hopeful.

    So far, really no side effects. I make sure to drink water regularly but I don't obsess over it. (I live in Hawaii so I have to stay hydrated anyway.) I'll go ahead and increase to 125 mg next Monday (the 27th). I'll continue to keep you posted. How are you doing with the Spironolactone?

    Best,
    Anne
     
  7. hairlosshelp

    hairlosshelp Established Member

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    Hey,

    I was just wondering do you have to go to an endo before you get a Spironolactone prescription? What kind of tests do they do on you?
     
  8. sheeny

    sheeny Established Member

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    Hi Anne!
    Great to hear from you & so, so happy that you can see some hair growing! Amazing news!
    My dr upped my dose to 100mg but I haven't started the new dose yet. I think I will on Monday- I'm nervous about it for some reason I also drink tons of water & haven't had any negative side effects so far.
    Last Saturday I started taking the supplement Fo-ti at the advice of my eastern medicine practicing acupuncturist. Since Sunday, my shed has dramatically reduced. It is about half of what it has been for the past 6-7 months. Such a relief. The great skin I'm getting from the Spironolactone coupled with the reduced shed has really been such a breath of fresh air. I feel 100xs better. I just hope it lasts!
    Hairlosshelp:
    I get Spironolactone from my endo that I see because I have pcos & thyroid nodules but my derm has offered it to me as well :)
    My endo would prefer that I started with birth control pills first, then start Spironolactone but I refused to take them & she was ok with that :)

    Anne:
    I forgot to add that I started using my 3 year old's Rosemary shampoo & my scalp has been feeling fantastic. It has been a good week as far as hair goes lol!
     
  9. Reek

    Reek New Member

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    Spironolactone experience thus far

    no need to go to an Endo, any derm can prescribe it--and basically any physician probably. the only thing is your doctor will request blood work as a baseline to make sure nothing is out of wack.
    my derm--a very conservative male derm, told me about the contraindications of pregnancy and that Spironolactone may mess with my cycle. he also told me that over the years he cannot say whether Spironolactone works or not--he could not reliably tell me if patients benefit from it. however, from my own research, it does not seem to hurt hair issues--as in not many people claim it made their hair worse, it mostly seems to not do anything or slightly improve. in my case, I am still young and have a lot of hair left and since I do not plan on having children for a while, I am willing to try anything to maintain my current locks.

    I have been on Spironolactone for 1 month (25 mg 2x per day) and will be increasing my dose soon with the goal of reaching 200mg--which is the dosage necessary for this off-label use. My hair still sheds--but I only wash my hair ever 5-6 days, so it's hard to say if my shed is "hairloss" quantity anymore. I am also using the lasercap which I also do not know if it's doing anything. there's another member on here who is using it and has had great success--and I think maybe adding minoxidil might help in my case--but I am not ready to start washing my hair so often as well as I am scared of facial hair growth (I have spent a small fortune on getting basically whole body laser hair removal--so I'm holding off on sabataging that). as far as side effects of Spironolactone--it wakes me up in the middle of the night because I have to pee :(
     
  10. sheeny

    sheeny Established Member

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    Reek-
    I hope Spironolactone makes a difference for you! You are very lucky that you can get away with only washing your hair once or twice a week! I have to wash at least every other day or my hair is a mess because I run every day.
    Yes, every dr has warned me about the possibility of birth defects if you get preg while on Spironolactone, but (fortunately?) I am done having kids so I don't need to worry about that.
     
  11. Noalani

    Noalani Established Member

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    Hi again!

    Just checking in to see if you increased to 100 mg yet? How's everything going? Hang in there!
     
  12. sheeny

    sheeny Established Member

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    Hi Anne! Thanks for checking in! I actually haven't gone up to 100mg yet. I said I would do it last Monday, but I wasn't feeling well earlier this week so didn't want to add anything else into the mix So I'm going to up my dose this coming Monday. Hopefully-lol
    How are you? Any changes?
     
  13. pollymaggoo

    pollymaggoo New Member

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    On Spironolactone for 1 month and 1 week

    I'm keeping a Spironolactone diary on my phone to remind myself of how it's going.
    I had a good day the other day where I showered and minimal hairs fell out. Thought I'm still seeing hairs every where I feel like it might be slowing down...

    It's weird how my hair is growing like mad where my neck was shaved during my last cut, but the top of the scalp has been thinning for 3 months. Trying to stay positive.
     
  14. sheeny

    sheeny Established Member

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    That's what I'm doing too- keeping a phone diary ;)
    I'm 6 weeks into Spironolactone & monday started my 100mg dose. I had 2 great weeks of lower shedding which ended around the end of last week. I'm averaging between 50/100 hairs per day depending on whether I wash or not.
    I just looked back on my phone notes & this has been the average since I started tracking my shed at the end of April. (My shed started around the very end of dec). So, I don't think Spironolactone has had a positive effect on my hair shed yet. I know it's too early to expect a change, but I'm pretty sick of this shed. Although it has greatly reduced oil on my face & scalp- so that a huge positive. At least it's kind of working.
    My other frustration is I'm not seeing a ton of great regrowth. I definitely have some but some is sickly & thin and some seems "normal". My scalp is showing more than ever. I also see a lot of super thin hairs that are about 4 inches long, some longer. Maybe 10 out of every 100 hairs I shed are these weird, long super thin hairs.
    Sigh.
     
  15. Noalani

    Noalani Established Member

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    Hi gals, I'll add to the update...I just increased to 150 mg/day of Spironolactone a couple days ago. As of today, this is my 9th week on Spironolactone, and I began at the very low dose of 25 mg/day for the first couple of weeks, moving up slowly to where I am today.

    My shed doesn't really seem to have diminished, but I have always shed a fair amount my whole life. If I don't brush/comb my hair, I shed less. Lol. I'd say I'm in the 80-125 range, maybe higher some days. It's hard for me to tell exactly because I find hair all over my wood floors during the day and I don't know which day they fell!:p (I don't know how all of you get exact hair counts...) I've had a FEW days, here and there, where I thought my shed was less than 80 and I was supremely thrilled. (But, maybe I just didn't comb my hair that day.) To add to everything, I've stopped coloring my hair and so I've got two-toned hair and of course my gray/white hairs are not as thick as my darker hairs. Aaaargh.

    Sheeny, I also shed some of those super thin, weak hairs and I figure it's my system ejecting a sickly hair and starting over with a healthier follicle with no DHT attacking it. Ha! I do see some regrowth and I guess only time will tell if these hairs will actually stick around and evolve into a bit more mass on my scalp.

    Spironolactone has most definitely made a HUGE difference on my skin and its level of oil production. It has been incredibly humid here lately and I am NOT an oil slick after a day out at the outdoor mall. Amazing. I go to work out at the gym and I am NOT an oil slick after two hours there. :D Hopefully, having increased the dose will help my hair. I remember my doctor saying that it would take a few months and everything I read online says it can take six months or longer. Also, I am still trying to get to the 200 mg/day dosage because that is the dosage that was used in the published studies I've seen.

    Continued best wishes to all....positive thoughts for all of us!
    Anne
     
  16. sheeny

    sheeny Established Member

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    Good to hear from you, Anne! You know, I think I've always shed some but not 100 hairs a day and they always got replaced without my hair thinning. I think that's my biggest issue- the hairs aren't coming back in enough and as thick as they once were. Plus, the extra shedding isn't helping any!
    I've experienced the same with my skin- it has been unseasonably humid here this summer & my skin isn't oily! I mean- it still is a little, but without the Spironolactone it would just be shiny & gross lol. It's as close as i'll get to "normal" now i think. I also go running down by the beach & it seems to hold up well :)
    My dr was finasteride with me going up to 100mg- I wonder how she would feel about going up to 200mg? I don't see her again until Oct, I don't know if i should stay at 100mg for a while and see if it helps or if I should go full force and ask for an upped dose soon? Decisions, decisions...
    Keep me posted on your journey! Take care!
     
  17. sheeny

    sheeny Established Member

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    Hi Anne! Any Spironolactone updates?? I'm up to 125mg & my shed has slowed significantly. I maybe lose 30/40 after combing out my hair post shower. Ive had a few rough patches since starting it, but I am so relieved & happy that I did. How are you doing?
     
  18. Emylou55

    Emylou55 Member

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    Hi girls
    I am 1.5 weeks into 25mg of Spironolactone and .25mg of minoxidil. My dr has also added a salt component to the tablet to help with dizziness and my BP is border line low already. I don't count my shed by I'm tipping around 200 + per day. Bit scared of the shed increasing.
     
  19. sheeny

    sheeny Established Member

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    Emylou- I have had a tough couple of months with Spironolactone but it feels like it is finally settling down. I also started with a very low dose (12.5mg) & am up to 125mg. The plan is to go up to 150 by oct when I have my next endo appt. My shed has been up & down- I have been in a te shed since jan- but it finally seems to be lower on most days. I still have some days that suck. I have some regrowth but haven't seen a difference as far as scalp coverage goes yet. I have been tempted to quit Spironolactone many times but at this point I'm happy I have stuck with it. I told myself I would give it 4-6 months then re-evaluate where I am. 2 months in I'm finally in a better place (for now). Good luck!! Keep us posted on your experience.
     
  20. Emylou55

    Emylou55 Member

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    Thanks Sheeny!
    I have been in a TE shed since Jan too! Do you also have Androgenetic Alopecia? I was diagnosed with CTE and Androgenetic Alopecia 3 months ago via a scalp biopsy. I have lost about 60% of hair now and feel like I have nothing to lose. How long after starting did you start your shed? And also with each dose increase did you shed more?
     

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