New to hair loss - am i going crazy?

Discussion in 'Looking For Advice (my story)' started by hannah85, Mar 15, 2010.

  1. hannah85

    hannah85 New Member

    Hi everyone, thanks for looking at my post. I've just found this site after trying to ignore what I think may be hair loss but I can't be sure! If you have time to read my post it would be very useful to see if anyone has had the same experience as myself.

    Let me give you some quick background info - I'm 24, I currently have long blonde hair (halfway down my back) that USED to be very thick, bouncy and wavy. I've been on the pill since I was 18 - Diane 35ED generic brand, and I'm still on it. I also have lightened my blonde hair since I was 15 - usually using home products such as L'Oreal but occasionally having it done professionally.

    Last year, I started noticing that my hair looked really flat. During this time, I was coming out of an extremely difficult financial situation that was putting a lot of stress on me, along with work and relationship problems. I also had been previously diagnosed with rosacea (skin redness condition) for which my doctor had me on low-dose antiobiotics for over 6 months. The antibiotics destroyed my gut - I had diarrhea everyday. The stress of having rosacea along with other things was leading me towards a near mental breakdown and I wasn't looking after myself.

    So; to make a long story short - I have been trying to resolve all of these issues and make myself healthy again. However, one of the things I noticed was my hair. Hairdressers have always commented on how thick my hair is and I used to try to straighten it because I thought it looked 'bouffant'. Now it is flat, seemingly thin, and I can definitely notice a lot LESS of it when I run my hands through. I've always had hair falling out all over the place, so I don't know if it's falling out more or if I'm being paranoid. The other thing is that I never used to brush my hair because it never got tangled. Now it is the complete opposite - I can brush it but an hour later there seems to be a rats nest growing in the back!

    During this time I went for a hair cut for the first time in 3-4 months (I literally hadn't been able to afford it) and told my hairdresser about it. She told me either it was stress, or that because I hadn't had my hair cut regularly I had developed split ends and hair breakage, which had cause the hairs to tear in half. She said this could be resolved by cutting it more frequently. She also said normal hair shedding was about 100 per day. :confused:

    I'm about 6 months on from this experience now; have been having my hair trimmed every 6-8 weeks, I haven't coloured it and was taking some vitamin supplements including zinc and fish oil which I have now stopped. However, I haven't noticed any improvement with my hair. Have I given it enough time or should I start to look into other possibilities or causes?

    I wonder if it's as simple as letting new healthy hair grow back now that I've removed these stressful aspects from my life, or that it has just brought out another problem?

    Thanks for reading my long-winded post. :)
  2. KVC

    KVC New Member

    Hi Hannah,
    It sounds like a case of Telogen Effluvium, brought on by a lot of stress and medication. I'm glad to hear you have made a conscious effort to get rid of these stressors, and I'm hoping that the antibiotics worked on your rosacea?

    Before I ask you any more questions though, why are you on Diane 35? Are you suffering acne also? I have such strong opinions on this pill, and would not recommend it to anyone who is NOT suffering androgenetic alopecia. I was on it from the ages of 16-20, and realized, coming off of it, that I have created a lifelong dependency on it.
    Anyways it's an unrelated issue if you have no thinning tendencies that are genetic, or if your hormones are naturally in check. I have a friend who went on it for acne and she has such thick hair that I doubt coming off it will affect her hair in any way. Some of us, with genetic hair loss tendencies, need to be extra cautious though.

    From what you have described, I really do believe it is a matter of healthy hair being given a chance to grow back in. Some cases of Telogen Effluvium last many months, and the hair is in a dormant phase for this period. Do you see it wispily growing back? I think your main priority right now is to get hold of a GOOD dermatologist, or even endocrinologist to try and rule out any hormonally induced hair loss with a blood test. By this I mean excessive testosterone/androgens. Also get things like Iron/Ferritin tested out. If you need a comprehensive list of what I would recommend to get tested, do let me know.
  3. Lisa09

    Lisa09 New Member

    Your story sounds like mine

    Hannah: your story sounds so much like mine that i couldn't help but post. Like you, I have long, wavy blonde hair. All my life, people have commented on how thick it was. My hair was always a little fine & fuzzy above "the corners" of my forehead, but I never thought of it as thinning. I've also always shed tons of hair throughout the day, so again, thought nothing of it.

    Then, almost two years ago, I was on a girls' trip to the beach and my scalp got sunburned. That had never happened before! When I looked at the pictures, I thought, "geez, when did my hair get thin like that?" Honestly, I had been going through terrible stress at that point in my life (break-up), and things only managed to get worse, stress-wise (death, loss of job). (And losing hair doesn't help with stress, either!)

    At that point, I'd been on birth control (Orthotricyclen Lo) for almost 4 years, so I don't know if that was the cause, or the stress of the losses in my life, or a combination of those things. I had other things happening with my body/skin (lots of blushing) that were new to me, so I saw a dermatologist (who I didn't like). He said I had rosacea and put me on an antibiotic. Honestly, nothing seemed to change. Most recently, I saw a different dermatologist (who I also didn't like) and he told me that the birth control bill can actually speed up hair loss if you are already genetically predisposed to it. I'm now going off the pill, so we'll see what happens. I'm petrified at the shedding that everyone says will ensue.

    Anyway, I'm only writing this to let you know that even though I hate that anyone is going through this, I'm glad I'm not alone.
  4. hannah85

    hannah85 New Member

    Thanks for your replies!

    Thank you both for replying! It's so good to know there are other people who know what you're going through.

    KVC - to answer your question regarding the pill, I had mild acne as a teenager, nothing too bad but probably exasperated by the then-undiagnosed rosacea. In that respect my skin has stayed almost pimple-free since being on the pill. The last time that I went to the doctor to get my pill renewed I asked him about changing to a pill such as Yasmin which I'd heard was more natural and I was worried about side-effects. (This is before I noticed my hair problems). He vehemently suggested I didn't - he said I'd lose any effect that was helping my skin.

    At this stage, for the first time, I was finally getting my rosacea under control (not cured) through diet, healthy eating and natural skin products/mineral makeup. There was no way I wanted to risk my skin!

    What are the problems with Diane 35 in your experience? Did it cause your hair loss? Funnily enough I have always considered the pill to really help me - besides with my skin and as a contraceptive it also helped me get my weight back to normal after I stopped bulimia in my teens (yes, another cause of my health problems).
    I haven't had my hormones or iron levels tested yet- wanted to suss out the possible causes first but that seems the easiest thing to check.

    And Lisa - wow, your story really is similar to mine! I also have had a bad experiences with a dermatologist which is why I'm hesitant again to see one. The one I saw (highly recommended supposedly) for my rosacea just looked at me (not even closely examined) and said 'Yes, you have rosacea. There's nothing you can do about it except get laser treatment.' Then she gave me a price list for the laser clinic she owned.

    BTW, I would be careful about antibiotics for rosacea (from my experience). I know this is a hair loss forum so I won't go on about it but I know a lot about it if you want anymore information.


    That aside - how do you know if you're genetically predisposed to hair loss? Just look at your parents?

    Thanks again
  5. Lisa09

    Lisa09 New Member

    From what I understand, you are supposed to look at your parents, and in particular, your dad. My dad had a full head of hair for a long time--at least until he was closer to (if not older than) 40, so I feel like this is too early to be happening to me. My mom loses hair from stress, but she always grows it back.

    Re: rosacea, the only advice that I took from either derm on the issue was to be sure to wear plenty of good sunscreen. It was the first derm I saw that prescribed me an antibiotic for the rosacea. I did complete one bottle, but I don't like taking bunches of medications, so I never refilled it. I was honestly really surprised at how easily and quickly he prescribed it. I didn't get the sense from either derm that they really cared about what was going on. I felt like they just wanted to push drug-solutions at me, which was really disconcerting!

    Anyway, it really does help to be able to talk to other people about this, doesn't it? Thank God for you guys!!!
  6. hannah85

    hannah85 New Member

    Oh dear, that's a bit worrying. My dad has been bald as I've seen him my whole life on the crown of his head. My mom - I'm not too sure - she's always had short short hair - I suppose it is thinning out now but she is 56. I've never considered that my dad's baldness could affect me as I've always assumed it's a male problem. Maybe time to really start looking into this.

    I've been researching Diane 35 since KVC mentioned it and have found some really disturbing stuff.. apparently the bcp can speed up hair loss problems but Diane is prescribed to slow it down? I'm so confused!

    I've been really thinking about changing pills for a while because of the side effects I've had including decreased libido and mild depression/anxiety but didn't want to get acne... Does it really have to be a choice between hair and skin????

    Is it not enough that I'm plagued daily trying to fight an eating disorder, depression and rosacea???? AGGGGGGHHHHHHHH
  7. KVC

    KVC New Member

    Diane 35

    Hannah,
    I began my hair loss with my first period, and then went on Diane 35 at age 16 because my testosterone levels were slightly elevated. I did not have an acne problem, I assume that the excess testosterone in the body affects people differently (my hair follicles were most sensitive, rather than my skin). Diane definitely stabilized my hair situation. I didn't notice things getting worse. Nothing grew back though. It always used to bother me that I was on such a heavy pill for what was basically just maintenance of my hair (at that point in time, early hair loss that is, you forget how precious "maintenance" actually is).

    When I was 19, I decided to slowly wean myself off the Diane. I was afraid that if I just got off it cold turkey, my hormones would go wack along with my hair loss. I was prescribed one of the lightest pills on the market called Desorelle 20 (that is the generic name here in the EU). Its components are Desogestrel and Ethinyl Estradiol if you want to find the American equivalent. I think with Diane, it is necessary to go on something lighter before coming off it completely. Yasmin is definitely not "something lighter", there are so many Yasmin hate forums that I am glad I was never prescribed it. Something like half the women who try it suffer side effects.

    Desorelle was great, especially after the Diane. The anti-androgenic properties of the Diane were still in my body I assume, which is why even being on a lighter pill worked for me. I stayed on it for about 11 months. Then about a year ago, I decided to come off the pill completely. It is only since December 09 that I have begun to see the FULL picture of coming off BCP altogether. No Diane 35, no Desorelle - just me, au naturel. Major, major diffuse hair loss.

    Everything was fine for the first 8 months - the pill's effects take a while to wear off. The last few months my hormones have been insane (hair loss has been unbelievable), and they are finally calming down and resuming normal ranges. I had one doctor even tell me that the estrogen secreted by the pill stays in your body for many months, and actually turns into hair loss-causing testosterone. I am glad I waited this period of intense shedding out and allowed my body to find its own balance. (I just got my blood results today and my testosterone is finally within normal female range! It dropped from a whopping 140 to 40.) My shedding has also decreased a significantly, though it isn't totally normal yet. I am off to get PRP treatment (read Admin's post on it) next week, in an attempt to salvage whatever hair has been lost in the past few months before it is too late.

    I was diagnosed with PCOS last month, which was masked by the BCP for all these years. The reason my hormones have been crazy for allll these years was a condition known as Insulin Resistance. So I am now starting Glucophage, which is what diabetics take (as Insulin Resistance is basically a precursor to Diabetes), which will help me balance my hormones. If I had just hopped back on a pill like Diane after noticing the awful effects of coming off the pill, I would have never discovered the underlying root of my problem - PCOS caused by insulin resistance.

    I am perfectly underweight (healthy weight rather), but simply produce too much insulin, which in turn produces excess testosterone in my ovaries. This causes cysts on my ovaries and hair loss (and acne for some). My periods, on and off the pill, have been very regular. So I never thought I could have PCOS! Do you think this might might be a possibility for you?

    I am sorry to hear you suffer from an eating disorder. That definitely doesn't help things, but I can understand how your hair loss must be making your tendencies even worse - it's a viscious cycle. I really hope you can/have addressed this because it will be the first step to your recovery.

    As far as blood tests go, there is little purpose of you getting ovarian scans or bloodwork done. You are on Diane, and any birth control pill for that matter will skew results. Only months after coming off the pill will you be able to get a clearer idea of what your body can and cannot do on its own.

    Yes, you will probably have a small shed coming off Diane, especially if your problem is indeed hormonally related. (I.e. if your body was producing too much of a particular hormone before you went on the pill, and Diane was controlling this production without you even realizing it, coming off it will have obvious effects in the short run, which may or may not be solved on their own in the long run). If you are scared of going cold turkey, try a lighter pill like the one I have suggested to slowly wean off it. The lighter pill works to keep your skin clear too, plus the effects of Diane will still be in your body for months after you quit it.

    I guess my point with this long-winded history is that: no real answers can be found out about hormonally-based hair loss, if you are on the pill. Your blood work and ovarian scans (if you decide to check for PCOS) will all look fine, when this may not be the reality of the situation. Admittedly, being on the pill is probably stabilizing your condition if it is hormonally-based (androgenic) alopecia, but by never getting off it to see the true picture, you will never know what the root of your issue is.

    If you find that you are controlling your rosacea with diet, take this chance to quit the pill. As far as I understand rosacea has little to do with acne - it looks similar but is more bacterial in nature? (Hence, the solution of anti-biotics). Diane cannot be helping your rosacea at all in that case. So I don't understand why your Doctor is telling you to stay on it for your skin.

    I hope I am shedding light on possible causes of your hair loss. Ask me any further questions you might have.
    *Also, do your reside in the States? How are you getting Diane?
  8. KVC

    KVC New Member

    BCP and Hairloss

    Also on a side note, about what you found about BCP and hairloss:

    From what I understand, it depends on your genetic tendencies. If you have a normal head of hair, get on a particular BCP (especially one which has a high-androgen index), it might kick in your preexisting dispositions to hair loss. Same goes for BCP's that are anti-androgenic (the opposite of high-androgen index brands) i.e. Yasmin, Diane 35. Women who get on these kinds for acne or whatever it may be often find that they create a lifelong dependency to it. Quitting it brings on so many problems (acne, hair loss) that they start thinking it was God's gift to them - when really, had they waited it out as teenagers and never gone on the darned pill, their own hormonal system would have sorted itself out. So many if's and maybe's, but this is strongly what I believe.

    The endocrine system is very delicate. Pumping it synthetically can cause long-term disruptions for a lot of women, which become visible when you come off these synthetic hormones. I get so angry with friends of mine who decide to get on the pill cause they feel like it, cause they want exact 28 day cycles, or want to have condom-free sex. It can trigger so many things, either when you're on it or once you get off. Don't use it unless you NEED to!

    Just as an example of the significant impact the pill does have on your body, no matter what your genetic tendencies are or how light the pill is: My best friend was on Yasmin for 5 years (16-21). She got off it last May (09), and went from a G-cup to a C-cup within a month. She has always been very slim, the type of girl whose body you envy because it's a proper hour-glass shape. But now she has a normal waist, normal hips, normal breasts, and realizes that all her old Pamela Anderson-esque features were the result of the artificial estrogen in the birth control pill.
  9. Lisa09

    Lisa09 New Member

    KVC, that's exactly what the derm told me about the bcp--if you have genetic tendencies, it can speed up the process of hair loss for you. To me, this seems like such a catch-22. On the one hand, stay on the pill, continue to watch myself lose hair b/c of being on it. On the other hand, get off the pill, go through crazy shedding, and who knows if it'll ever normalize? I really wish I had never gone on the freaking pill in the first place! :mad: If I'd had any idea that the pill could cause hairloss, I think I would have avoided it, but (like millions of other women) I never read the fine print they they include in the package. Oh well, I've made my choice. I'm coming off the pill and hopefully will normalize. They said they couldn't check my hormone levels while I was on the pill, anyway.
  10. hannah85

    hannah85 New Member

    Thank you to both of you for sharing your stories with me. I am in awe that both of you have the courage to stop the pill to try and see how your body will normalise. Do you feel different now and have your doctors said your hair will grow back?

    I completely agree with what you are saying about the pill - the more research I do, the more I am horrified that these rarely-known problems are so wide spread. I am starting to wish I never went on the pill, merely for the fact that if I want to have a baby one day I will have to make this decision and face said consequences. I live in Australia and as I remember, I went to the doctor's office when I was 18 as I had just started a serious relationship and was looking for contraception. The doctor asked me some questions and noticed my skin, which wasn't great at the time. She prescribed the Diane to help with my skin problems. After a few months on it, my pimples cleared up (not the redness though) and my weight suddenly dropped off from a 16 to a 10 over a couple of months. I'd put on this weight funnily enough because of my bulimia which really destroyed my body. So as you can imagine - I thought this little pill was a miracle, even though the weight loss could've been attributed to something else.
    Hence, my intense fear of changing what seems to keep me normal right now... until the hair loss.

    I'm really glad to hear though, KVC, that you discovered the root of your problems. I hope you are getting the right treatment for PCOS now? My younger sister has it - I believe that's why they put her on a pill when she was younger. However, they also told her she would probably never fall pregnant, with only a slim 2-year period left. So at 20 yrs old she went off the pill after her and her fiance decided to try for a baby - who is now a beautiful 6month old girl. She's getting some good help for it so I hope you can too.

    I should clear up that I don't have an active eating disorder anymore - but, I still believe it's in remission and a battle I fight daily. I am just feeling extremely frustrated that, once I feel I've gotten on top of a particular problem, the next one comes around. I'm sure everyone here feels like that.

    So thanks for your advice - I am definitely going to speak to a doctor about all of this and maybe a derm. Perhaps it is a coincidence that my hair fell out after stress and that there is a deeper problem, or that I at least need to reconsider switching pills.

    It's a good idea to spread the message to other women about the pill (Oprah, anyone?) - for some, it might be a lifesaver for some of their conditions but they should know ALL the risks in order to weigh it up. I certainly wish I had...
  11. KVC

    KVC New Member

    @ Lisa: That's awesome that you've decided to come off your pill, whether it caused your hair loss or not. Definitely give it a few months to exit your system before you do any hormonal blood work. I would say up to 6 months. I would get my blood checked monthly after quitting the pill, because I was so paranoid that my hormone levels would creep back up to their regular highs. But actually saw that things were very normal up until 8 months after coming off the pill. The longer you have been on the pill, the longer its effects take to leave you.

    Also I have found that Saw Palmetto and a phytoestrogen called Puerira Mirifica help the endocrine system to handle the huge change in hormones when you quit the pill. I wish I had started taking these when I had just quit the pill rather than 2 months ago, because I know for a fact that these two herbs brought my hormone levels to normal range.

    Saw Palmetto is a natural anti androgen (just like the pill), and prevents the testosterone in your body from turning into evil DHT.

    Puerira Mirifica is a powerful natural estrogen (it is not synthetic, but natural, and mimics the function of the estrogen we make in our bodies, and the estrogen that the stupid pill pumps us with). When you research it you will find a bunch of links taking you to "natural breast enhancement pill" sites, but trust me, the herb is good for more than that!

    @ Hannah: I don't know if I feel "different" per say. The period of intense shedding definitely made me feel like something was insanely wrong with my body, and I couldn't point out what until this recent discovery of Insulin Resistance.

    My best friend is/was bulimic through her teen years, and like you, was prescribed Diane 35 when she was in high school for her "acne". I don't know why doctors are so easy about prescribing this pill here in Europe and apparently Australia (in the US it's banned!); they should always try something lighter and then resort to Diane if nothing else works. It is such a strong pill and is primarily an anti-androgen, it's "unintended side-effect" is contraception! It's so strong that they don't want you to even take the risk of conceiving, in case your male fetus becomes subject to anti-androgenic hormones. Anyways my friend's acne cleared up, but like you, is afraid to get off it, in case it comes back. Is it helping your rosacea? Or is weight issues the reason why you want to stay on it?

    Diane for me, definitely had no beneficial effects on my weight. I didn't become fat or anything, I just always felt bloated and as though I had 10 kilos of water trapped in my stomach. Most women on Diane definitely find the opposite than you have, it upsets your natural weight rather than helping it.

    Before Diane, did you have regular periods? Or did the bulimia disrupt your cycle entirely? Perhaps going on the pill regulated everything and gave you a sense of health - one that can be achieved on any pill though, even the extremely light ones.

    What I learned from the endocrinologist this past week (before finding out that I had Insulin Resistance and would need diabetic medication rather than the Pill), was that cyproterone acetate, the anti-androgen that Diane is made of, is also found separately in a drug called Androcur (do not know the Australian equivalent). So the endo said to me that if I do decide to get back on the pill, I wouldn't need to take Diane, but a lighter pill in conjunction with Androcur would be fine. I could slowly decrease the Androcur as and when I like, and maybe eventually find that the light pill is enough on its own.

    I like the idea of being able to "control" your dosages of cyproterone acetate rather than the Diane, which you can't exactly break into two.

    Also Lisa, I know how you must feel about one problem hitting you after the other. I was sobbing to my mom the other week saying that God was perpetually beating me down with a bat every time I got up. I have just come out of a very rough period of anxiety/depression due to work/career related things, and just when I was regaining my confidence, my hair took a hit. Sometimes I feel hopeless, but then I realize how much richer a person I have become from having to deal with so much so young. I can't explain, it's this sort of emotional superiority I feel over meeting other people in their 20's. When I'm talking to people my age about everyday 20-something things, I will always be thinking in my head how much more advanced my coping mechanisms are than theirs. While friends of mine are complaining about boyfriends who don't call them enough or dresses that aren't flattering enough, I will be thinking, "Well, my boyfriend and I just had a huge argument about hair loss, and I finally think he understands where I'm coming from. And I don't care about stupid dresses! I just want my natural beauty back and it won't even matter to me if I'm wearing H&M at my wedding!"