Dismiss Notice
Welcome! Please read this announcement regarding the new Forums: Click Here"

36, Probably Androgenic Alopecia? Probably Mirena Trigger

Discussion in 'Tell Your Story' started by Thinning, Jan 3, 2019.

  1. Thinning

    Thinning New Member

    Joined:
    Jan 3, 2019
    Messages:
    10
    Likes Received:
    2
    Dislikes Received:
    0
    Update: I went to a second dermatologist today, and she confirmed miniaturization, although she said there were plenty of non-miniaturized follicles. But that confirmation was hard to hear, even though I knew it was probably going to the case.

    She gave me steroid cream and to keep using niz shampoo to get my sub derm under control, as it's pretty bad. Then come back in two months, to go over my blood work from primary care and maybe do some more/do a scalp biopsy.

    She said she thought there was 'something more' going on with me than androgenic alopecia/fphl but that seemed to be based on my relative youth, and I know people way younger than me have it, so I'm not clinging to that either.

    There's a possibility I have lichen planus, as I (TMI, sorry) have also had chronic vaginal inflammation that doesn't seem to be BV, yeast, etc. So we're going to look into autoimmune.

    IDK. I want it to be "something more" than genetic hair loss too but I feel in my heart it isn't. But it's still worth looking into all possibilities (PCOS, autoimmune, thyroid, nutrition, etc).

    Hi all! I just wanted to share my story; I've been haunting the forums and just felt the need to get this off my chest. It's been so informative hearing other people's stories, even if the lessons are hard ones.

    I've always head incredibly thick, wavy hair, layers of it, and I've always been a shedder, comically so. That's why it took my such a long time to catch on to what was happening. I guess I'm lucky because I had so much coverage (and still have some, although who knows for much longer), but in a way it's bad because it took me such a long time to figure out there was a problem.

    In 2014, I got the Mirena IUD inserted. I didn't want to do hormonal birth control, as I'd been on the pill (no longer reminder what kind) back in high school/college to control heavy, irregular periods (probably a sign of PCOS! Though I had no idea at the time). Birth control made me moody and killed my libido, so when I went off it I vowed never to return.

    But when I got in a long-term relationship with my now-husband in my 30s, I wanted some form of regular birth control, and looked into IUDs. I wanted to go non-hormonal, but the Nurse Prac sold me on the Mirena. "It's a low dose of hormones! Not at all like before!"

    I keep looking back and regretting that decision. I was swayed by convenience (five years! lighter periods!) and scared by the increased cramps and bleeding on non-hormonal options. I thought I was aware of hormone side effects (weight gain, depression, acne, increased risk of blood clots and cancer), and like many had NO IDEA of hair loss as a side-effect. I just wish I'd followed my gut.

    Like many, at first I really loved the IUD. No periods, no pills, no condoms, no fuss! Awesome.

    Like I said, I've always been a shedder. About nine months into the Mirena, I was talking to some students (a teacher), a hair fell and fluttered down on the desk. Being teenagers, of course they laughed, and at the time, I didn't think anything of it (again: big shedder), but looking back, it seems ominous.

    Almost two years in, I considered getting the Mirena taken out for other reasons, still not really freaked about hair loss. I wish that I had.

    Three and a half years in, I did start to get freaked about hair loss. I switched to a desk job, and it was a routine issue that hair would fall on the papers I was working on. Embarrassing and should only happen once in a while, even to thick-haired shedder, not be a routine issue. I also noticed my hair was thinner and flatter. Still had a ton of it but it was different. I googled "Mirena and hair loss" and oh boy, that's when I realized that yes, it's definitely a thing. Strangely, I didn't get TOO freaked out. It seemed like it stopped for a lot of women when they got it taken out, and I still had a ton of hair. I guess I just tried not to worry about it, and figured, even if my hair didn't bounce back completely, the hair loss would stop when the hormones stopped, and I could live with that. In fact, when I mentioned it to friends, they were like "It's your greatest wish! Thinner hair!" and I almost felt stupid complaining. So I got it taken out and didn't worry too much.

    That was almost a year ago. In the intervening year, it has not stopped. It's not so much that I have excessive shedding as that it's consistent, and the hair doesn't grow back.

    I got married about nine months ago, and the only thing I wasn't happy with on my wedding day was my hair. There just wasn't very...much of it. The voluminous Grecian look I've always pictured was so thin and small. Somehow, though, I was still in denial and obviously distracted by other things like getting married. Figured the Mirena had thinned it, and I was getting older, and that was just the way it was. I know women's hair thins as they age, and several friends had dealt with thinning hair post-partum and after other hormonal changes (one suggested I take vitamin D, which she said helped her). I guess "balding" never really occurred to me.

    The last couple months were incredibly stressful for other reasons (a car accident and back pain, in short). As I started to recover from that period, one morning I went to put my hair up in a clip and realized...all my hair easily fit up in a clip. Maybe that sounds stupid, but I've always had too much hair to banana clip back (always had to pony tail it first).

    It was that moment I've read about a bunch on these forums. When you suddenly 'notice' and your whole life changes. I realized that I'd lost more than 60% of my hair, which is not "thinning a bit but you still have plenty of hair". It's hair loss. I realized my part was wider at the back, with a bald spot at the top of my head. In really bright light, you can see my scalp at the back of my head.

    I went to a dermatologist, who said "yes, you do have some thinning at the temples." I'd honestly never thought about my temples before, which may sound weird, but I have layered hair and rarely wear it back, so I don't really look at my temples much. Oh boy. Yes, when you pull my hair back, the temples are receding and full of holes. She was all "You have some regrowth!" But it's light, fluffy and some of it is vellus...I didn't ask at the time, but I think it's miniaturized...so, Androgenic Alopecia. Derm didn't confirm this (didn't know to ask at the time).

    Here's the weird thing about that visit: she looked at my like I had two heads when I mentioned spironolactone and said that it could cause hair loss, and she'd only ever prescribe it for acne. But then she gave me unprompted a prescription for finesterade, which supposedly derms are reluctant to give out. She didn't even say anything about it not being for women or about birth defects -- I only knew to ask because I'd researched it! She was just "well, stop taking it if you get pregnant" AFTER I ASKED. But some doctors don't think any woman who might ever get pregnant should take it. She's said squat about the fact that it's an off-label prescription or side effects. I've really lost my faith in doctors.

    My GP order a bunch of blood tests (thyroid, vitamins, hormones) and my gyno also ordered blood tests, and I'm going to get a pelvic ultrasound to test for PCOS. Honestly, I'd be shocked if I didn't have PCOS, considering my tons of facial hair and other "odd" bodily hair, which shot up on Mirena.

    I'd never heard of PCOS until I was already on Mirena, but now I feel so foolish. Mirena is high-androgen, and with all my PCOS warning signs, I should have never gone on it.

    I know it's not a given I have PCOS (have to wait for tests) but I have a history of irregular periods, facial hair and other typical PCOS hair patterns, and now this.

    Oh? And in 2009, the FDA told Mirena they had to stop advertising it as "low dose" because it's NOT "low dose". So the low dose line my nurse prac sold me in 20 freaking 14 was seriously outdated! Which again is my fault for not looking it up!

    My husband and parents think I spend too much time on the internet, but if there's one thing I've learned is NEVER take what a doctor says for granted, and do your research. I blame myself so much for not researching Mirena more. And maybe if I'd had a more regular gyno (I bounced around), someone might have mentioned some of these considerations; I feel it's my fault for taking advice from a nurse prac at a clinic who didn't know me very well as well as not doing due research.

    I'm doing the vitamin thing (Viviscal, vitamin D, vitamin B, magnesium, fish oil, lysine and vitamin C for iron absorption). Viviscal has iron, but I'm not going to do more extra iron unless my bloodwork confirms I'm low. And I won't do any anti-androgen stuff unless it's confirmed I have high androgen/testosterone/PCOS.

    I suspect that I am low iron, as my mom had anemia in the past, and I suspect vitamin D is low, as it has been in the past. I've changed some bad habits, with far less alcohol and caffeine, and I'm trying to watch my diet (lost weight due to stress of last couple months/bad eating habits) and eat more protein and veggies. But I also suspect all these things will make no difference. I think the Mirena triggered Alopecia Areata, and that's what happening. I desperately want to cling to the thought that my body is still adjusting post-Mirena, and the stress of the last couple months worsened things, and that with the right diet, vitamins, etc. my body will recalibrate and my hair will recover. But I also feel in my heart that I am fooling myself. I look at pictures from a year ago and I can see it; looking at pictures of the last couple years is like a flip-book of slowing thinning hair if you know what to look for. So this isn't a triggered TE out of nowhere, although, who knows! I still might get a TE from all this stress on top of everything else.

    There's never been any 'massive shed' (or maybe my sense of things is off, as I always shed a bit); instead, it's been a slow, deadly, drip-drip-dip of hair loss, which seems much more consistent with androgenic alopecia.

    I've become terrified of brushing it, and thus it's also gotten tangled. My hair was always prone to terrible tangling, and my solution was always to ruthlessly brush them out, losing a ton of hair in the process. Now I'm terrified to do that (it seems also cruel that despite having way less hair, it still tangles so badly? I always thought that was due to having so much of it, but no, I guess). So I guess I have to go the hairdresser ASAP. This will be the first visit where my hairloss is obvious, and I think I'll need to get it cut shorter/bobbed. This is sad because I've always hated how I looked with shorter hair, and loved myself with longer hair.

    Looking at my wedding photos now bums me out, because I can already see the temple loss starting, and I can now, nine months later, no longer wear that hairstyle. I guess that was my "last hurrah" of wearing it pulled back. I know I'm lucky to have already had the wedding and to have a partner, but it also all sucks. The stress of last couple months and now this have taken a big toll on my relationship. I'm obsessed and frequently suicidal.

    None of the options are good ones. I'm terrified of topical minoxidil, as we have cats, and it's toxic to them. Oral has side effects. I don't know if I want to have kids (and we have to decide like NOW) and so I'm not sure about finasteride or Spironolactone, and now I'm wondering if I do have PCOS and if maybe I'm infertile.

    I'm worried about waiting too long to start something and also starting something that makes it worse and/or that I have to stay on forever. I don't want to jump into hormones, but I also suspect something is off with my hormones (my period has been regular since going off the Mirena, but it's gotten oddly short and light, which suggests low estrogen). My derm also suggested it's possible I'm going into early menopause. I know I have to wait for test results to find out, but it's frustrating to know there's no clear path forward.

    It's not yet obvious to the "naked" eye and I think the one friend I told about it genuinely thinks I have body dysmorphia. My parents and husband don't notice until I show pictures, and demonstrate before and after, then they acknowledge that "something's clearly happening." My husband is balding too, and was like "hey, we BOTH have less hair than we used to, don't know worry about it."

    I'm lucky it's not obvious yet, but I know I'm on borrowed time. If reading these forums is any indication, in a few years, I'll long for what I have now.

    It seems like the only people who end up happy are those who either recover their hair somewhat (and rogaine seems to be the only consistent thing that works) or those that accept a massive loss and wear hair. I'm not ready for that second step yet (it's not at the point where it's needed). I think being "in between" is the worst. I don't know if it's going to get worse or better, and if worse, which is most likely, then HOW MUCH worse, etc.

    Sorry for the novel! It's okay if no one responds, it's just been nice to vent and tell my story. It's been comforting to read others and feel less alone.
     
    #1 Thinning, Jan 3, 2019
    Last edited: Jan 7, 2019
  2. Thinning

    Thinning New Member

    Joined:
    Jan 3, 2019
    Messages:
    10
    Likes Received:
    2
    Dislikes Received:
    0
    Thank you for this! It means a lot. Denial is such a double edged sword, right? On the one hand, I want to go back to denial (I was happier, lol!) but on the other, the longer I wait, the less effective any treatment has the chance of being. But on the other hand, you’re right, looking back, I’ll probably realize this state isn’t so bad. If the current trajectory is any indication, the slow and steady decline will continue, so is it worth it to make myself miserable and take scary meds during my last “good hair” years? Maybe I should enjoy what I have while I have it? It’s really hard to know what to do. I’m sure stress doesn’t help, but I also think, if I’m being honest, that stress isn’t the big factor
     
  3. Thinning

    Thinning New Member

    Joined:
    Jan 3, 2019
    Messages:
    10
    Likes Received:
    2
    Dislikes Received:
    0
    "After a while I was stuck it flight mode and obessed over every little thing then I fixated on hair and started taking supplements etc and down the hill I went."

    This is me right now!!
     
  4. unefemme

    unefemme Member

    Joined:
    Apr 15, 2015
    Messages:
    67
    Likes Received:
    21
    Dislikes Received:
    0
    Please be mindful of taking Viviscal. First, if you don't have a vitamin deficiency, then it won't help at all. Second, it will likely elevate your liver enzyme levels (not good!) after a while. I took Viviscal for a few years hoping that it would save my hair - despite the fact the none of my blood tests showed any vitamin deficiencies, except for a slightly lower vitamin D level (which I then started taking). Other than making me hopeful that it would work - and that I felt that I was taking control of my hair loss in some way - it did nothing except cost me $50 for each packet and raise my liver's enzyme levels. I could see a steady rise in the enzymes during the years I was on the supplement, but didn't put 2 and 2 together until I researched the contents of it: the shark's cartilage is a definite no-no for the liver over any length of time. I stopped taking it and at my next blood test (a few months later), my enzyme levels had decreased dramatically!
     
  5. 3monkeys&me

    3monkeys&me New Member

    Joined:
    Jun 6, 2016
    Messages:
    12
    Likes Received:
    5
    Dislikes Received:
    0
    Just a quick suggestion for the tangled hair problem. I stopped combing my hair (shoulder length) a few years ago. It became wavy due to hormone change and I was losing too much when I combed (I have chronic sebopsoriasis that makes the hair very fragile). What helped me a ton with the tangles was rinsing with distilled water and light conditioning daily with John Frieda leave in conditioner (I diluted and rinsed out because it was too heavy for my thin hair). Also spraying on some diluted aloe vera/water prior to shower should soften your hair and make it bouncy and tangle free.
     
  6. Thinning

    Thinning New Member

    Joined:
    Jan 3, 2019
    Messages:
    10
    Likes Received:
    2
    Dislikes Received:
    0
    Thanks for this! The more I think about, Viviscal seems to basically be most of a pre-natal, with Biotin and some gelatin/collagen from that shark cartilage/horse tail. Seems from poking around you can get the same result much cheaper with regular vitamins. And it's not worth your liver!

    So I've decided to stop taking Viviscal, and take a pre-natal for now, along with a b-complex, vitamin D, and some gelatin. This will probably be about the same and much cheaper! I'll stop the pre-natal if it turns out my iron is fine but I'd be surprised, as it's common for women to be low.
     
  7. Thinning

    Thinning New Member

    Joined:
    Jan 3, 2019
    Messages:
    10
    Likes Received:
    2
    Dislikes Received:
    0
    This is a great tip, thanks!
     
  8. electra

    electra Established Member

    Joined:
    Sep 25, 2016
    Messages:
    87
    Likes Received:
    15
    Dislikes Received:
    0
    Thinning, thanks for sharing your story. Sounds similar to mine except I'm bit older (going through perimenopause, I'm sure it's hormonal changes that's doing it, but...).

    I'm HORRIFIED at your doctors' lack of knowledge and lack of precautions. So freaking scary how little they know, and just reaffirms the idea that we have to investigate things for ourselves, because they know SH**!

    Check out Paul Nola's blog/hair info sheet. He's a doctor in New Zealand, and I wish I could see him! If you google him, you'll find it. Lots of good info. But still hard to know what will help!!! Hang in there.
     
  9. Thinning

    Thinning New Member

    Joined:
    Jan 3, 2019
    Messages:
    10
    Likes Received:
    2
    Dislikes Received:
    0
    Yes, this whole experience has me very disillusioned with doctors! Luckily the second derm and my GP haev been really great. Thanks for the recommendation!
     

Share This Page