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Went off the pill and my hair fell out

Discussion in 'The Undiagnosed' started by lemongrass, Apr 12, 2011.

  1. dying curls

    dying curls Guest

    Here are a few testimonies I found..they are just testimonies so they have no real scientific values but so are ours on this board :

    "hello, this is my first time on here and thought this forum was where i belong as have been TTC for nearly 5 years. I am pretty confused though as i went a did all the tests a few months a go and was found to have polycystic ovaries but my blood work came back clear and i am really regular. Does this mean i don't have Pcos? I am a few stone over weight and do struggle to lose weight but that is the only other symptom that i can see. If not anyone know what is does mean? Have managed to find nothing via google and the doctor was so rubbish and dismisal that i wasn't able to ask. Any ideas would help me a lot!"

    "hi there
    I am 35 years old and being TTC for our first baby for 8 months now (only got married last November!)
    I have just been diagnosed with PCOS which is a surprise to me as I am not overweight, have dead on regular cycles (31 days) and have no facial hair or acne.
    The doctor picked up PCOS in both ovaries and I am going for my post ovulation blood test next week.
    Anyone else in the same boat?
    thanks" http://community.babycentre.co.uk/post/a466745/pcos_but_regular_periods

    "I had none of the typical symptoms, had my periods regularly, no facial hair, not overweight, just started to lose my hair too much, anyways went to the DR when i was not falling pregnant, after some tests she diagnosed PCOS, gave me metphormin. which has proved that it works for ovulation on me, however has done nothing to correct my hair fall or me getting pregnant "

    My educated guess is that you do have it. PCOS tends to get worse as you get older, as you gain weight, and after each pregnancy. So, it could be that as you are getting older that the symptoms are getting more noticeable. I had totally normal periods and had no trouble ttc when I was younger (no facial hair either)…but as I got older things progressively got worse. I didn’t notice any symptoms, but now that I am a little older…they are there.

    "The key things to indicate PCOS are the irregular periods and the high testosterone and insulin levels. Those two blood tests are very indicative of PCOS. Of course the facial hair is also a symptom. You have 5 symptoms…people get diagnosed with only 2 symptoms. Here’s some basic PCOS info for you."http://www.guide-to-mesothelioma.com/answers/how-likely...with-pcos-without-having-all-of-the-symptoms/

    this is an online quiz :http://www.youngwomenshealth.org/pcos_quiz.html

    i have been dx with pcos... no kid just one m/c. my ONLY symptoms is i have the tendency to be overweight... but i lose weight with no problem, LOST SIXTY POUNDS(most women with pcos have difficulties losing weight)oh and acne... i guess around my af i get like four or five pimples that turn into spots (i am 25).my af is usually 30-35 days or so but but two cycles ago i had a 46 day cycle. i am not hairy really... i get a little tiny bit on my upper lips and a few strings of or chin hair every blue moon... i NEVER have cyst pains... i cant ever recall ANY...i have NEVER had high blood sugar....i only know for certain i have pcos because i asked my obgyn to test my hormones and sure enough i had an odd fhs to lh level...pcos, but then on the pther hand i have a friend who aslo has it and her ONLY symptom are actual ovarian cyst...many at once, with severe pain...pcos...she hasnt ever been heavy...so get a hormone panel if concerned. there are many different levels of pcos.


    Do you realize that the androgen elevation of women with PCOS is still very far from the levels of males???? Of course some will experience unwanted hair but many won't!! Not all 14 years old boy have a beard or a mustache! Same for PCOS sufferers.

    There are as many types of PCOS women as women who suffer from PCOS.
  2. dying curls

    dying curls Guest

    And Marse, read again Lemongrass post..she had irregular periods..and was put on the pill for this, and contrary to you i dont bemeive she ever suffered anorexia...She was put on the pill then her periods became regular...
  3. lemongrass

    lemongrass Guest

    dyingcurls, do you have insulin resistance?

    I just wanted to clarify that I had irregular periods from 14 to 16 (the first two years of my period). I went on the pill when I was 16, not for that but because I was worried about acne and in particular scarring from it, and have been on it ever since.

    Without medication I wouldn't have acne anymore, but I wouldn't be surprised if my periods were still irregular. My mother had irregular periods too (but she also doesn't have other PCOS symptoms). It's possible we both have it.
  4. lemongrass

    lemongrass Guest

    She didn't recommend anything. It was like "I think it's PCOS. Thanks for stopping by. Have a nice life."

    It's just like derms who see hair loss, call it genetic and that's it. Except this is even worse because PCOS can have serious symptoms, none of which she discussed with me.
  5. mrm

    mrm Guest


    sorry you had such an awful visit - i saw an endo who was similar and had a mild panic attack/depression a few days afterwards...i still want to hit her! :)

    which area do you live? is redmond a possibility? i don't know if he will "improve my hair" but I think he is an excellent endo. he is helping me w/some thyroid problems that NO OTHER endo even bothered to f/u on. i know he has a "specialty" (don't know if this is the right word) for treating PCOS. just a few thoughts.

    all the best and keep us posted.

  6. Marsen

    Marsen Guest

    Since you don´t have other symptoms, there was no need to discuss them. PCOS only causes infertility issues, otherwise it´s harmless and disappears after menopause. One can have PCOS without symptoms whatesoever.

    I too am begining to realize derms are useless when it comes to hairloss. Everytime I´ve seen one, including my last one, they just theorize about stress and Androgenetic Alopecia but no real answers are given. Honestly, I can´t blame them. Hair loss is still very much a mystery.

    One thing I am beginning to understand after reading so many articles: it seems to me that most women have the hair loss gene, because mild miniaturization is very common in biopsies. It appears that a second cause is necessary to make hair actually fall out. So if a women is losing hair, most likely she has Androgenetic Alopecia, however, it´s not what´s causing hair to fall out at the time. For you, it´s coming off BCPs. For me it´s probably a lifetime of dieting and chronic stress.
  7. dying curls

    dying curls Guest


    PCOS does not only cause ifertilitiy issues, PCOS is not harmless and
    PCOS does not disappear after menopause on the contrary the symptoms can get worse after menopause!!!!

    There are milder form of PCOS, but even with a "mild form" it can cause hair loss.

    PCOS can put you at risk for many things such as diabetis, metabolic syndrome, aenemia because of heavy periods, endomietrosis and the list goes on...even cancer in some cases...

    Of course not all women with pcos will experience those problems but
    some will.

    ACNE and Irregular periods are symptoms of PCOS (it's normal forwomen to have regular periods on the bcp, most women will even if they have pcos...).
    ACNE+IRREGULAR PERIODS+HAIR LOSS= HIGH PROBILITY OF PCOS OR OTHER HORMONAL IMBALANCE... I've been diagnosed for less than that and same thing for my sister.

    Fleur keep in mind, I always had regular periods and i went on the pill rathet late (1st time from age 22 to 23, then I stoped for a year, my periods were still regular 28-30 days cycle but tended to be heavier though. I went back on the pill at 24 because of hair loss)
  8. dying curls

    dying curls Guest

    Sorry I meant Lemongrass, not Fleur.

    It's your choice anyway. Do whatever feels right to you.There are also natural routes to treat PCOS, if you are very disciplined it might work (but be aware it does not work for every body)

    Marsen, I know you mean well, but you should try to get accurate info about PCOS before stating things that does not reflect the reality of this condition.I talk from experience, and I 've tried to find every other alternative possible diagnosis for that condition... as weird as it sounds, of all hormonal imbalance women can have out there PCOS is the least evil...other imbalance can be way trickier to treat and sometimes cause much more spectacular symptoms...Taking a birth control pill to treat an imbalance, when you know most women are on the bcp, is less bothering that taking other type of medications...
  9. lemongrass

    lemongrass Guest

    Those are the types of risks I would have thought the doctor would discuss, even briefly.

    I don't know if you've been listening to me. I used to have acne when I was a teenager. I do not have it anymore, even without medication. I had irregular periods when I was 14 to 16, I don't know whether I'd have them now if I went off everything. So it's not quite "acne + irregular periods + hair loss" for me.
  10. dying curls

    dying curls Guest

    Well, lemongrass the only way for you to know is to go off the BCP.

    i do not know why you loose you hair. But if your doctor suspects PCOS, go and see another for a second opinion, and/or go of the pill for let's say 3 month to see what happens.

    You 've been on the pill since age 16...on the pill you have regular periods PCOS or not, it's normal (besides those arent real periods), being on the pill also prevent most women from having acne (unless they're on an androgenic pill).

    Hair loss is not as easy to treat with the birth control pill as the other symptoms.

    I repeat i do not know why you have hair loss, but i can see why your doctor suggested PCOS might be the cause. By age 16 most girls will have regular periods.

    You have several options :

    -discarding this diagnoses and ignore your doctor advice, and looking for alternative solutions
    - Going off the pill to see "what happens" and see if your doctor was wrong or right
    - Taking your doctor advice and go on dianette for your hair without stopping the pill

    As far as the risk i enumerated in the previous post...most doctor dont inform their patients about it, unfortunately :shakehead: ,they will say "you have pcos take this and this and come back in a few months". If you have no weight issue, they wont talk to you about diabetes for example. If you are on the pill there is no reason for you to worry about endometriosis...plus endometriosis only concerns those with PCOS with experience heavy and/or long periods not those with normal or infrequent periods.
  11. dying curls

    dying curls Guest

    Again, I also posted in this thread because I do nto want girls who only read but don't post to have misconcieved idea about PCOS...and I dont want them to waste their time, because with hair loss time is very precious. The sooner you know the cause of your hair loss the better.

    It took me 6 years to get an answer, I saw so many doctor...If i had known i had PCOS at 18 I would have a beautiful mane by now and prolly wont be on this forum. Instead of this docs were like "are you kidding me a 5,6 and 99 lbs girl with an hormonal imblance ? You have regular periods, you are a very pretty girl, get out of here and enjoy your life thanks". Same for my sister....

    If i knew there was the slightest possibility another contidions could also contribute to my hair loss, other than PCOS, I would also explore it in a heartbeat especially if a doctor suggested it to me.

    I hope you find answers very soon. Let us know whent this happens!

    I also include a link to a pic of me just before i was diagnosed with PCOS and my hair loss got worse(my hair was still a decent thickness by then even if i already had major doubt about my hair loss, i was 23 on that pic and I have been thinning very slowly since age 17. I had a good thickness to start with)...now tell me if i look like your typical PCOS...
    Well Pm for the link..i dont feel comfortable posting pic on the board...
  12. lemongrass

    lemongrass Guest

    Hey dying curls, I totally understand how frustrating your experience was and why you post about how PCOS symptoms can be so varied, but you also sometimes seem to make out like everyone has PCOS, even if they don't have any symptoms. I know it's possible but you could be worrying lots of people for no reason. So maybe temper your advice to people with something reassuring. Most women with hair loss don't have PCOS, and hair loss is present in only about 5% of women with PCOS, so it's not as clearcut a relationship as, for example, acne and PCOS.

    Anyway, I'm definitely not going back to that doctor. She was just a mean person. And I don't think she even knew that stopping BCP causes TE sometimes, whereas stopping Spironolactone doesn't. I will find another endocrinologist.

    I could go off the BCP and Spironolactone to test my hormones ... but whether the results say I have PCOS or not, I will still go back onto both BCP and Spironolactone. So why take the risk of another BCP TE?

    And my hair is getting better, so knowing for sure it's PCOS or for sure it's Androgenetic Alopecia doesn't really matter, I guess. I'd like to know though.

    At least if I had PCOS, I could try other things that aren't as suited for Androgenetic Alopecia, like d-chiro-inositol and a low GI diet. So that's the positive side of it being PCOS instead of Androgenetic Alopecia.
  13. Marsen

    Marsen Guest

    Thank you, Lemongrass!
  14. dying curls

    dying curls Guest

    I never say everyone has pcos but when a girl posts saying she has acne off the BCP on this board I say it's a possibility she has it OR another imbalance. And anyway I think PCOS is a possibility for women with Androgenetic Alopecia under the age of menopause

    Also i think it's right for you to be on the bcp and Spironolactone if it helps, going off it was only a possibility among 3 other ones.

    Also I repeat I do not know wether or not you have it!!!

    I also repeat I particularly insisted in this thread because of what Marsen says about PCOS, because she asserts a lot of things about that conditions that are really misleading.

    There are certainly a bit more thatn 5 percent women with PCOS and hair loss especially when they're under the age of menopause, even if they're a minority. And the proportion of girls under the age of menopause with Androgenetic Alopecia on this board who might have cause is certainly even higher than among girls with no hair loss.

    AGAIN i am not saying you have it and again i know i especially insist when people say ' but I/you can't have PCOS because you dont have this and this " .
  15. Sofia1980

    Sofia1980 Member

    Dec 29, 2014
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    Hi, I am having therapy of 6 months, on the pill. My hair looks much better. Hopefully the hair will not fall out once I stop the therapy.

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