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Alice's story

Discussion in 'Tell Your Story' started by Alice26, Sep 5, 2016.

  1. Alice26

    Alice26 New Member

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    Hi everyone,

    I am new to the forum and I wanted to introduce myself. I am so sorry that so many of you are also suffering, but I do feel less alone and less crazy reading some of your stories. It has been a hard few days and I feel so trapped by my hair loss. I hate that I am so preoccupied with it.

    I have been suffering from unrelenting hair loss/ over all thinning for 2.5 years. I don't have to tell you ladies about how devastated I feel. I have now lost about two thirds of the thickness of my ponytail. It went unnoticed by everyone but me for a long time, but now there is no hiding it. I feel ugly and I miss my old hair so much. When I see old pictures of myself with my old hair it is very hard to keep from crying. I know for my mental health I will need to learn to accept my hair loss, but right now I am not there yet.

    I have seen many doctors and tried many treatments (low level laser, supplements, PRP, regaine, Chinese herbs, noukrin, gosh so many things) and nothing seems to slow down the shedding. I am hoping to try Spironolactone soon but so far haven't had luck finding a derm to give it to me.

    I wanted to ask - can anyone give me any insight as to whether I have CTE or Androgenetic Alopecia? My hair loss started like clockwork 3 months after undergoing IVF, for which very high levels of hormones are involved. Because of this timing and the fact that I started losing it overnight, my first derm diagnosed me with CTE. But given all the hormones (androgens were involved in certain IVF cycles; I endured many) and the fact that my thinning isn't entirely uniform (much worse on sides and front hairline, moderate on top, less at back) a second derm I saw said Androgenetic Alopecia. What do you think? I don't want to take Spironolactone if I have CTE as I understand it isn't effective for that. I also sometimes have scalp pain/burning, which seems to be worse where my hair is the thinnest. I don't have shedding episodes - it started one day and hasn't stopped.

    If any of the more experienced members have any other tips for me, I'd really appreciate it.

    Alice K
     
  2. Megan M

    Megan M Established Member

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    It would seem that you have CTE. Have you had your ferritin, zinc, b-12, vitmain D tested. If you are deficient in any of these your CTE will be on going.

    Are you currently on any hormones or meds?

    My CTE is relentless and very depressing too.
     
  3. nitu1

    nitu1 Member

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    I was also thinking CTE.....
     
  4. Alice26

    Alice26 New Member

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    Thanks for the replies ladies. I saw another derm the other day and she agrees - CTE. She is very experienced with hairloss.

    I had wanted to ask for Spironolactone but her opinion was that it would probably do more harm than good in my case, given the high amounts of hormones I have taken in the past. (I'm not doing any more fertility treatments.) All bloods are currently normal (iron was low-ish in the past but I have been on mx dose supplements for 6+ months with no improvement).

    Sigh..... don't know where that leaves me. How long does CTE usually last? Megan - sorry this is getting you down too. It's hard.
     
  5. Alice26

    Alice26 New Member

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    nes - thank you for your thoughts. I have definitely been in that boat - I don't look like I have a lot of hairloss to others who don't know what my hair looked like before. Mostly because I started with A LOT of hair, and the top of my head is so much less affected. But if I make a part at the sides the hairloss is very obvious. Lots of skin shows.

    It's also considerably worse on one side than the other. Has anyone ever heard of this??

    Thank you ladies. I am glad I found this board.

    Alice
     
  6. JenVoy

    JenVoy Established Member

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    have you had iron and ferritin checked? You should also check vitamin levels. Although I personally don't think those are a determining factor. Have you had a scalp biopsy?

    I've been shedding for 14 months. I've lost a significant amount of hair. And I have some regrowth but not enough to keep up with shedding. My scalp is wider on crown, with diffuse shedding. I know my trigger. And I know there is no way in H*ll I'd have gone through this had I not taken the anxiety medication that caused this.

    I watched a YouTube a few months ago and a woman was telling her story of her CTE that went on for 3 years. She showed her pony tail before and at 3 year mark. It was the circumference of her pinky finger. So I don't agree with the theory that CTE looks consistent in density. Not true.

    I'm sorry you're going through CTE. I'm suffering too. It's truely the worst thing I've been through in my life,
     

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