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LosingHope's Story - 38 TE&Androgenetic Alopecia

Discussion in 'Tell Your Story' started by LosingHope, Dec 12, 2016.

  1. LosingHope

    LosingHope New Member

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    I've cried for months...
    Today is the tipping point. I'm snapping at everyone and I can no longer pretend this horrible journey is not happening.

    Was on Yasmin for 10 years. Still had acne and got breakthrough so switched to ortho tri cyclen for 2 more year with no break in between. Hair was perfect. Full foil would take close to 4 hours and everyone told me my hair was quite the impressive lot.

    Quit OTC in June 2013 to give me body a break. Acne went nuts and SUPER ELEVATED DHEAS and 17-OH so was put on 50mg Spironolactone. Hair seemed a little lighter but could have been imagination. Still an amazing head of hair. So thick, when purposely parting you still could not see scalp.

    Feb 2015: still on 50mg Spironolactone and didn't want to get preggers so start on ortho cyclen. 3 months later the shed started in a very diffuse pattern and here I am almost 2 years later and I'm worse than ever.

    This year in trying to fix it I went to a new GYN who told me to quit Spironolactone. So, being gullible, I quit it May 2016 and stayed on Ortho cyclen and by Aug 2016 I could clearly see scalp with major thinning behind front hairline and within weeks got spider web thin hair. (I thought this took years?!) I freaked, went on Rogaine 5% back on Spironolactone, quit ortho cyclen and have worked my way past my old 50mg dose and now currently taking 150mg. Desperate, I went to Redmond in NYC and he added Yaz. It has now been 4 months back on Spironolactone and 3 months since starting rogaine and I'm worse than ever. Now I'm questioning the Yaz :(

    I've been to derms, endos, fertility drs, naturopaths, blood drs and gynos. Everyone tells you something different. All labs came back in range (says nothing) but ferritin was at 37 and vit d okay at 47. Hormones were level and fert dr said my ovaries are quite young for my age. Biopsy said minimal miniaturization consistent with Androgenetic Alopecia but I really question everything now. Father is bald and mother is fine so only thing I can think of is Spironolactone + ortho cyclen kicked off Androgenetic Alopecia or something else.

    I'm devastated. My front is receding and my part is widening. You can see my scalp through the front really well. It's thinned everywhere too - sides, temples and top.

    I'm so confused. You read Spironolactone helps and for others it hinders. Drs tell you it can't be the pill to cause it (that's crap, I'm sorry). All I know is I've had at least 4 blood tests a month for the past 5 months and still no answers. Not Lyme or Lupus or PCOS or vit a toxicity (I was on retin a for a short time but have since quit that too). I take magnesium, iron, folic acid, MSM and vit d with no results.

    At the point where I don't want to leave the house. Can't function properly and feel like whatever I choose as treatment, it is wrong. Don't know who to believe and I don't sleep nights anymore. My scalp burns from time to time (it was the worst back in Sept) and is a constant reminder that I am turning ugly.

    Any feedback helps because I feel very alone and desperate for advice on what to try next.
     
    #1 LosingHope, Dec 12, 2016
    Last edited: Dec 12, 2016
  2. Cheryl Ann

    Cheryl Ann New Member

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    ZO

    I am so sorry you're going through this. Your story mirrors mine so much! I also have Androgenetic Alopecia and TE. The frontal and temple hairloss is the worst! My bangs literally fell out of my head over the last two weeks. I've also tried every medication, shampoo and supplement out there. My hairdresser is hooking me up to a stylist that does custom toppers with human hair. Supposedly it runs around $150.00, and she will dye it to match my haircolor. This is not the route that I want to take, but I feel at this point I have no choice. I've been watching YouTube videos by blondilodks, a beautiful woman who has alopecia. She's very inspiring and has lots of tips on how to make a wig work in any situation. I hope that when I finally use supplemental hair that I can look half as good as her! If you havn't already, perhaps you can start checking on supplemental hair. Good luck on your journey, and God Bless you.
     
  3. LosingHope

    LosingHope New Member

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    Thank you for your kind words and for sharing your plan of action. I don't think I could go the topper route and it sounds silly to say but I can't see my quality of life being any better as I am an athlete and have been my whole life. How can one kickbox and roll around in jiu jitsu or take the court in basketball or snowboard on the mountain in fear of losing their fake hair? I'm not trying to sound harsh or dismissive but for me, I would be more worried about it coming off than feeling secure with it on. I also have a very corporate job and as a professional I've gone so far as to think I may have to quit because I can't wear hats to work and that is the only way I'll cover my scalp and not feel odd if it flies away. I have tried derm match and it's okay but being so thin in front, it often looks odd and fake.

    I wish you the best in your journey and hope you're bio hair decides to surprise you for Christmas. Otherwise, best of luck with the topper :)

    For me, I'm really questioning my quality of life and realizing it will not ever be the same. I am even thinking about leaving my fiancé as this has really changed my entire outlook on everything. Sorry to be a downer but I really have no hope all these pills I'm pumping in my body are going to help.
     
  4. Barbarina

    Barbarina Established Member

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    In the part of this forum where people talk about wigs etc, dont remember who exactly, but one lady mentioned that she found amazing wig to wear for sports, it doesnt move etc etc. Sorry, that is the only positive peace of information I can offer. But dont leave your fiance, he probably loves you the way you are no matter what. And sometimes (or so they say) that once we accept the unavoidable, some miracle happens and hair starts growing back. It is kind of like with women who are desperate to get pregnant and after they accept that it is not going to happen, voila - they do fall pregnant. I am also thinning since last 3 years, NO idea why. Started with stress at work...
     

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