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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

    Well I dread the day I ll have to come off it, ... I know my hair loss will return...
  2. Hayley

    Hayley Guest

    I come off in 3 weeks and i'm expecting the same too but i'm hoping that its the Rogaine that has caused most of my regrowth and not the Dianette. I'm sure i will miss it in some respects because i was hairy enough before i started Rogaine. Now i'm going to have to buy shares in bleaching cream!
  3. lemongrass

    lemongrass Guest

    ^ Why don't you just stay on it?

    It makes me sad to think that I triggered my Androgenetic Alopecia by starting the pill. My mother and grandmother both have it, so it would have happened eventually. Although at the time, I was about 17 and still only getting my period irregularly, like once every three months.
  4. dying curls

    dying curls Guest

    Irregular periods are a sign of hormonal imbalance...higher androgens than normal and is often the cause of Androgenetic Alopecia. You should get that checkec out.

    I will have to come off the pill eventually if i wat to have kids!
  5. Hayley

    Hayley Guest

    Lots of unwanted side effects and you cant get pregnant on it ;)
  6. lemongrass

    lemongrass Guest

    I think I missed this comment first time around.

    It definitely would be interesting, but I'm not game enough to try it just yet. Although I went off the pill for a month or two a few years ago (late 2006, I think) and I don't remember any shedding. It may have happened, but I didn't notice it.

    I'm going to an endo at the end of the month and I hope she doesn't say that she won't test me for anything until I'm off BCP or insist that I go off it for other reasons. I don't know what I'd do then.
  7. dying curls

    dying curls Guest

    Of course you dont want to go off the pill now.
    but you can tell you rendo what you experienced off the pill.

    When off the bcp do you have irregular periods?
    Do you have heavy periods?
    Heavy headaches durinig periods?
    Oily skin and hair ?
    Unwanted facial hair ?
    Acne ?
    Painful periods ?
    Do you feel tired ?
    Do you have skintags?
    do you tend to put weight arount your waist more than around your hips?
    do you have member of your family that are diabetic?
  8. lemongrass

    lemongrass Guest

    When off the bcp do you have irregular periods?
    Yes, one period every three-four months or so.

    Do you have heavy periods?
    No. In fact, it's light. One time last year I tried to have two periods two months in a row (I normally skip the inactive pills for a few months), the second period was practically non-existent.

    Heavy headaches durinig periods?
    For about a year I got migraines that might have been around my period. I haven't had one for months, so I don't know what that was about.

    Oily skin and hair ?
    When I'm off the pill, absolutely. When I'm on it, no.

    Unwanted facial hair ?
    Yes, like I've got some hair on my upper lip that I have to remove, but not huge amounts and nothing I consider abnormal.

    Acne ?
    No, but I went on the pill because of hormonal chin acne when I was a teenager. When I was off the pill for about 5 months in late 2010-early 2011, it didn't come back.

    Painful periods ?
    Yes. Very mild pain when I'm on the pill. It's worse when I'm off the pill. I assumed some pain was normal.

    Do you feel tired ?

    Do you have skintags?

    do you tend to put weight arount your waist more than around your hips?
    When I put on weight, it basically all goes to the stomach area just below my belly button. What's that part called?

    do you have member of your family that are diabetic?
  9. lemongrass

    lemongrass Guest

    What were the questions for, dying curls?
  10. aries

    aries Guest

    I can answer to yes to every question :( I think you are suggesting PCOS.
  11. lemongrass

    lemongrass Guest

    I'm sorry to hear that. I don't think I've got it.

    From the very little I know about hormones, I think the light/non-existent/infrequent periods point to low estrogen. Maybe.
  12. lemongrass

    lemongrass Guest

    I just looked up PCOS and by god, I hope I don't have it. I'm sure I'm just being paranoid. I don't have all/most of the symptoms, and some of the ones I do have are very general and not PCOS specific (tiredness, oily skin).
  13. MuttLover

    MuttLover Guest

    Lemongrass -
    That's the thing about these boards. As if you weren't already worried about your hair loss, it's very very easy to start to think you've got PCOS or something worse.
    I've been on bcp for about 12 years now, and I only went on so that I would have a more predictable cycle. I don't recall ever having infrequent or irregular periods, they came about the same time every month, a little on the heavy side for a couple of days and lasted 5-7 days. But I look at the other symptoms and I think - I am overweight! I get a couple zits in the chin/mouth area every once in a while (more so during the spring, not sure why). I'm always exhausted! ....
    During the times in my life where I've gone off the pill I don't recall more hair loss. But if it happened, it may be that I didn't notice. I didn't become worried about my hair thinning until recently, and now I obsess over every hair that comes out of my head. I wonder if I lose more hair on wash days if the day before was not a wash day. It seems like I may be losing slightly more hair than usual, but it's still not coming out in alarming rates. About 20 in the shower drain, about 20-30 during the combing process after the shower, and then I can't really estimate how many I lose during the drying/styling process but I hope it's less because hair comes out so much easier when it's wet. I hope that in total I come in under the "100 hairs a day is normal" limit.
    For me, it's just so hard to know if there will be a cap on how thin it'll get. I can't say for certain that my Androgenetic Alopecia was brought on by a high-androgenic bcp, but I suspect it was. Plus thin hair is in my family, but no one looks that bad. Then I think, yeah but my aunts were probably not ever on a bcp. So they never had that element adding to it. Does that mean mine will be worse? I'm still on Loestra, which is also high-androgenic, but I'm scared to switch to a non-androgenic pill because of the horror stories you read on boards like these. I just want to give my hair the best possible chance.

    Anyway, I'm so sorry for rambling and highjacking this thread, there is just so much running through my head right now, I want answers and am skeptical that I'll find them. I don't pray anymore for a cure and Kim Kardashian hair. I just pray that I will find a way to give my hair a fighting chance and not cause any more harm.
  14. dying curls

    dying curls Guest

    In most PCOS books, they tell you that if you answer yes to 2 of those questions, PCOS may be the problem you are facing.

    You can have only one symptom among all of those; oily skin and irregular periods can be sugestive of PCOS or another hormonal imbalance.

    Irregualr periods when you don't have reached the age of menopause is ALWAYS the sign of some hormonal imbalance. Low estrogen can be seen in PCOS women too. (in pcos progesterone is often not well balanced against estrogens, estrogen being the dominant hormone).

    There are also many other kinds of imbalance that could trigger irreglar periods.

    Most of my freinds with pcos only experience irregular periods and nothing else... i am the only one with hair loss :$
  15. lemongrass

    lemongrass Guest

    I went to an endo, who was a total bitch, and as soon as I said I had hair loss she started going through the PCOS symptoms. And as soon as I said I had irregular periods during the first two years of my period* (after which I went on the pill), she clearly decided that it was PCOS and no other factor was occurring. Every additional fact I gave her after she'd made up her mind was twisted to fit into the diagnosis. She refused to test me for pretty much everything else because she said I didn't have the other visible symptoms of those things (meanwhile, I don't have the visible symptomS of PCOS either, but she was willing to assume that I had that after 2 minutes).

    And from Wikipedia:
    In 2003 a consensus workshop sponsored by ESHRE/ASRM in Rotterdam indicated PCOS to be present if any 2 out of 3 criteria are met[4]
    * oligoovulation and/or anovulation
    * excess androgen activity
    * polycystic ovaries (by gynecologic ultrasound)

    I have two maybes according to that. The irregular periods are likely (would probably have them if I went off the pill), the hair loss being a result of excess androgen activity is uncertain. PCOS is an obvious probable diagnosis for an endo to consider, but to actually refuse to consider anything else is wrong.

    What a freaking waste of time. Calling it PCOS and leaving it as that is as much a cop out as calling it 'genetic' (ie Androgenetic Alopecia) and looking no further than that.

    I was freaked out by the possibility I had PCOS a few months ago but now I realise how meaningless the label is. It's a description of symptoms, and since I don't have most of them, who cares whether the label could be applied to me or not. I think I was mostly scared that it would mean that the others were coming, ie that I would probably end up being overweight, have acne, have insulin resistance, etc.

    It's possible that the irregular periods were caused by something else, were nothing, or that they were PCOS but the hair loss is caused by something else. I might have PCOS and something else. Hair loss as severe as I have it, if it's caused by PCOS, should be accompanied with other physical symptoms, shouldn't it? How can I have nothing except for an oily scalp (which was seb. derm.)? PCOS is most likely to be MPB or FPB (the pattern). I don't have either. IMO, there's enough doubt that it's BS to just assume it's PCOS and basically refuse to investigate or consider other possibilities when the patient asks you to.

    dyingcurls, can you recommend any good books on PCOS or hormones?

    *Menarche: the cycles after a girl's first period may be irregular for some time. It can take up to 3 years to get regular periods. http://www.epigee.org/menstruation/irre ... riods.html

    Sorry for the ranting.
  16. Bri

    Bri Guest

    Your endo sounds a bit like my Gyne, though with a completely opposite 'diagnosis' without even looking at me.

    There are ways to test for PCOS without someone simply saying your symptoms fit, because you can have a lot of the symptoms and not have it (as apparently I do!) and you could also have very few symptoms and end up having it. Get an ultrasound done if you haven't already but keep in mind that they can completely miss PCOS, even if it is quite severe. They can do a scope, but it is apparently an invasive procedure so they don't do them routinely.

    When my Mom found out she had severe damage from PCOS it came as a shock as they had only figured it out due to her combined hair loss and then fertility issues - if it were not for her trying to have my sister they would not have found out until it was too late. Her ultrasound came up clear with healthy looking ovaries.

    I think that if you ever have a doctor that ever makes you think "what a bitch" then you should find a new one. A second opinion based on some actual medicine rather than guesswork is really not to much to ask for and it is important that you feel as if your doctor is listening to you - because in the end you are the one living in your own skin so only you know what your body is telling you.

    This doctor sounds like my gyne, and rather than listening to the host of problems and descriptions and etc. you could have given her she heard that one special word and stopped listening to anything else.

    I can't really help you, but I can sympathize with how frustrating that must of been. My advice is to look into the PCOS for your own good, but to trust your instincts and see another doctor!
  17. dying curls

    dying curls Guest


    I pretty much agree with Bri.
    PCOS is a possible diagnosis but is not the only one.
    Your doctor cannot say you have it without making the proper tests
    and having excluded other causes. Of course she has to explore that possibility but need to consider the other ones. She could miss something bigger whunnos? (of course i hope it's not the case but everything is possible!)

    Make she to have the right tests done.

    There are several books out there about PCOS but none will replace a proper diagnosis.

    Ask your doctor the proper tests and if you can (I know it's expensive in the USA) get another doctor to check you up if your current one does not do her job.
  18. Marsen

    Marsen Guest

    Wow, that´s insane. So what treatments did she recommend? It does sound like just an easy label they like to slap on.

    I would get another opinion, or maybe don´t. I agree with you, if you had PCOS you´d have other symptoms like a beard and irregular periods. (Dying Curls can argue all she wants, this is my opinion and I´m sticking to it).

    Curiously, I also stopped having periods after my first period. It took a whole year for my period to return. I´m sure your doctor would have diagnosed me right away with PCOS! But if she had waited a little longer, I would have explained that I was severely anorexic during that time. But maybe she would have dismissed it anyway ;)

    Like Muttlover said, you come on these boards worried about hair loss and somehow you leave convinced that you have all these other diseases, that thyroid tests doesn´t prove anything, that derms are all dumb and don´t want to help us. It´s honestly...crazy.
  19. dying curls

    dying curls Guest

    I would get another opinion, or maybe don´t. I agree with you, if you had PCOS you´d have other symptoms like a beard and irregular periods. (Dying Curls can argue all she wants, this is my opinion and I´m sticking to it). .[/quote]

    Ok I hope other girls her will come to my rescue ;) !!!
    Marse you have no idea of the complexity of hormonal imbalances and PCOS, many girls are misdiagnosed.

    Actually irregular periods is the most common PCOS symptom. Irregular periods unless you are let's say under 16 is ALWAYS a sign of something and 95 percent of the times it is caused by an hormones imbalance.

    Not every woman with PCOS have a beard!!! I am not lying when I say my sister has abosolutely NO PCOS SYMPTOMS and yet she has PCOS, she does not even have irregular periods!! Yet she never was able to get pregnant.

    Marsen I have PCOS and I think i am in a position to confirm by experience that you can absolutely have PCOS with no external symptoms, actually there are many people who are sick and don't exeperience symptoms, that happens... A symptom is not the cause of a disease it's only a possible consequence.

    I went to see two gynecologists, a dermatologist and an endo before before being diagnosed, all said it was impossible for me t have an hormonal imbalance because they had the exact same preconcieved idea about PCOS as you. My consultations would go like this :

    "-Do you have irregular periods ?
    - No.
    - Well then you don't have an hormonal imbalance. You have a clear skin, you have regular periods plus you are skinny. It's impossible for skinny women to have PCOS (yes i heard that too)..."
    They would still check up my TSH, which was always fine and sent me back home telling me my hair issue was all in my head that I should put on weight blahblah..."

    For them irregular periods was the first criteria for PCOS and hormonal issue were irregular periods.When i complain about hair loss they said "yeah you dont have it (i was in the early stages) but even if you had it, if you dont have irregular periods it's not hormonal"...BS!! it's not only hormonal of course, but it is partly!

    Oh and for the records I never had a beard...well i started to pluck a few hair on my chin around age 18 though, i know it was due to Pcos but it was by no mean a beard. doctor discarded this when i told them. I woul pluck a couple of hair once a week. My is the least hairy girl I know. I was not diagnosed until age 24 when an endo finally consented to check up my androgens.

    Thinking that a women with PCOS will have a beard show that you dont understand the interplay between hormones and genetics...Just look at men and their pilosity system. If you take two men with similar androgen levels one will be let's say normally hairy for a man and the other one very hairy...it's because of the sensitvity of their hair follicles to androgens...so if you are not sensitive to androgens at a given place in your body you wont be that much of a hairy person...it's the same for Androgenetic Alopecia...

    I wish other girls with PCOS would help me here...PCOS is not very glamourous, but it can touch girls with normal weight, regular periods, clear skin ...apparently healthy girls. Actually most women with pcos are fine until they try to concieve and find out that even if they have regular periods their eggs are not good quality.

    Oh and hair loss can be a pcos symptoms...so hair loss plus irregular periods ....already two pcos symptoms...I am not saying for lemongrass...but 2 symptoms is more than enough to explore that route...A beard is far for being a "compulsory" symptoms...actually it's the least common!!!!

    The most common PCOS symptoms are acne, irregular symptoms and weight gain..."beard" and hair loss being the least common....
  20. dying curls

    dying curls Guest

    You can find many testimonies on the Internet of women with PCOS who do not have facial hair or/ body hair (hair on the abdomen or back are also a sign), who have regular periods, no hair loss etc and yet have PCOS and need to take meds to get pregnant because of it.

    But woment with irregular periods...irregular periods I insist are always the sign of some underlying conditionsbe it hormonal or more serious.

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