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A Story of Recovery from Chronic Telogen Effluvium

Discussion in 'Tell Your Story' started by Vicky1130, Sep 10, 2014.

  1. amy123

    amy123 Guest

    hi

    Hi, bootsie, I remember you from another forum. If I remember correctly you were losing hair after using retin a, did that ever stop? i am also shedding hair after using topical retin a, and have been shedding for the last 18 months. I have a lot of regrowth but the new growth also falls out. i have been to many doctors and even though they say it is not due to using retin a, i know it is.
     
  2. Ang

    Ang New Member

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    I have been shedding now since July 2013, and it just doesn't seem to be letting up. I've just taken the decision to stop using Rogaine as it seems to have made the shedding worse.
    Without doing a biopsy, is there any way to differentiate between CTE and Adrogenic Alopecia? The hairs that I shed all have that little club of keratin on the end. The shedding started when I went to live in Ghana under extreme physical,emotional and environmental conditions. All my dermatologist says is it's stress and hormones, which is really not helpful. Hair is thinning mostly at the temples and crown.
    :(
     
  3. firefly8

    firefly8 New Member

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    To anyone who might find this info/my story helpful ---

    I'm 28 and one of those people whose hair was massively thick and curly when I was younger, to the point where I went through 3 bouts of CTE and genuinely didn't even notice (until reflecting, obsessively, on pictures from various points in my life). But, about a year ago, I noticed: my hair was about 45-50% thinner than I remembered (I later realized I'd gone through a shed in Oct/Nov 2013). I was beyond devastated -- suffered serious anxiety and depression, and couldn't pull myself out of it. I saw a terrible dermatologist who looked at my hair for 2 seconds and gave me a list of 6 options, all of which were for completely different types of hair loss. Yeah thanks, so helpful.

    Last November (2014), I was scouring the internet as usual, hoping to get some info that would console me -- and I came across Vicky's post. I noted some similarities in our stories, but more importantly the name of the dermatologist she mentioned (Jeff Donovan). I live in Montreal, so Toronto is close enough that seeing him was a possibility.

    I filed that away for later. I'd become so convinced my hair loss was permanent that I refused to see another dermatologist; I didn't want to know for sure. But finally the uncertainty became paralyzing, and I made an appointment with Dr. Donovan for last week.

    I can't even express how great this guy is. He is by far the kindest medical professional I've ever encountered; is at the forefront of hair loss research; is confident in his diagnoses; even promptly replied to an email of mine on a Friday afternoon. He patiently listened to my entire story, looked carefully at my scalp, and instantly diagnosed me with CTE (then listed five potential treatments specific to my problem AND CURL PATTERN. what. amazing.). I left his office more hopeful than I'd felt in a year; my hair loss is finally not the FIRST thing on my mind at all times.

    The point of my story: first, to thank Vicky endlessly, because if she hadn't posted her story, I would probably not have thought to look up Dr. Donovan. Secondly: everyone has a crappy dermatologist story. If you are anywhere near the Toronto area and are as upset as I was about your hair loss: make an appointment with him, stat. Though my loss is not genetic, I can only imagine he would inspire the same confidence in anyone who saw him. We all need to share our positive derm recommendations -- no more of these BS diagnoses!


    I don't know if my CTE will improve -- it has in the past, so I'm hopeful -- but I had to create an account and post this, in hopes that maybe someone else will find Dr. Donovan as helpful as I did.

    Good luck and much love everyone. Thank you for your stories. <3
     
    #23 firefly8, Mar 20, 2015
    Last edited: Mar 20, 2015
    Laura Eve likes this.
  4. Roxy711

    Roxy711 Established Member

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    Thanks so much for the encouragement firefly! Just wondering, does your hair ever short cycle or grow thin hairs that fall out? Mine does a little and I've heard this means cte and then I've heard it means Androgenetic Alopecia. So I'm confused.
     
  5. Kate10

    Kate10 Member

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    Firefly8, what were the five potential treatments he recommended ? Thank you
     
  6. firefly8

    firefly8 New Member

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    First was a laser comb (HairMax Pro), which is what I'm currently trying. Way too soon to say if it's having any effect! This is the only laser product that's been independently tested with positive results, however.
    Second was Viviscal (shark cartilage pills), which I'll try next if the laser doesn't work.
    Then minoxidil (which he actually recommended against, given that my hair is long & curly, so he thought I would have to use way more than the capful dosage).
    Then...something I don't remember...hahaha and then platelet-rich plasma therapy, which he suggested only if everything else fails (but he seemed quite confident that I would see results with time alone; I just want to speed things up).

    I also had low ferritin when all this started (14.4), and have only just raised it to 70, so that may have an effect as well ---- plus, I am 90% sure that given my CTE history, stress is my trigger. I've been SO stressed about this for the past year that I think my hair just kept falling out as a result (a vicious cycle!). I'm hopeful that now that my main stressor is assuaged, my hair can start back into its normal cycle. Fingers crossed. :)


    <3

    I usually lose very long telogen hairs (my hair goes about halfway down my back when pulled straight), but have lost some shorter ones, too (a few inches long). I've had 3 or 4 sheds in the past year, so the cycle is pretty short... haven't had any miniaturization, so the hairs are usually about the same thickness for me. BUT: I'd definitely get it checked by a trichologist; the internet is SO confusing for info like that.
     
  7. Kate10

    Kate10 Member

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    Thanks for the response firefly8, keep us posted
     
  8. Finion4

    Finion4 New Member

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    CTE

    So pleased to have found this site. After three years shedding and losing 50% hair density I thought I was going mad! Husband has been lovely but doesn't really understand how much this has affected my life. Obessesive is an understatement - counting hairs in the shower, trying not to brush my hair, not looking at my pillow ..... Finally last week I saw a Trichologist and she diagnosed CTE due to a three year period of stress. Previously went privately to see a Dermatologist, who after 5 mins exam told me glibly that o had Androgenetic Alopecia and may go bald. I always felt that I was over-reacting, I wasn't dying after all, but I never realised how much I had emotionally ties up in my hair! The Trichologist gave me some pointers but they are all common sense really. She said that the hairs she tested were dead and undernourished - despite having a good diet - and she had no way of knowing how many remaining hairs were dead and therefore would still shed. On the upside she did say it would end, but no idea when. I hope it's soon as I just don't feel like 'me'. I'm so glad to read that many of you have recovered and hope that it happens for me too. In the meantime, it's great to have support from this forum. Thank you x
     
  9. dvent1111

    dvent1111 Established Member

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    Finion4 are you shedding both long and short uncut hairs? I shed these normal thickness shorter along with long hairs which makes me so confused!
     
  10. Finion4

    Finion4 New Member

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    Both but more the long hairs - only very occasionally do I see the teeny new growth fall out too. It's the long hairs that just 'leap' off my head randomly! What's your situation?
     
  11. firefly8

    firefly8 New Member

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    It's been about 8 months, and I'm checking back into this thread!

    First, a revelation: I feel like part of the reason CTE recovery stories are so rare online isn't because they don't happen.
    If my experience is any way to gauge -- it's because we're so terrified that we're going to jinx it -- that the recovery will stop, simply because we admitted that things were going well. Well, screw it: I remember how depressed I was when I was in the midst of the terror that is constant shedding, and if I jinx myself by admitting it, well, maybe I've helped someone who was once in my position.

    So: some hope, for those of you who are scaredest and saddest, because god knows I was among you just a few months ago ---------
    My hair is growing back!!

    A few things I experienced/learned that I wish I'd been told when I was looking for help online:



    So ----
    I don't know if that will help anyone, but I know that I would have at least wanted to hear some of that when I was at my lowest.
    My hair is not perfect now. It's kind of hilarious when I try to style it 'cause of all the little hairs sticking out. It tangles easily near the root and terrifies me, because I think I'm pulling all the new growth out -- but I'm not. And with time, I know I will be calmer about that, too.

    Try to relax, my fellow CTE sufferers. I am here from the other side to tell you that it can get better. And you are beautiful, truly, whether it does or not. :heart: :heart:
     
  12. firefly8

    firefly8 New Member

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    This made my heart do little flips. So much hope and love to you; I am absolutely positive things will get better!!

    - - - Updated - - -

    Oh yay, this made me feel so fantastic!! It's so great to get solidarity from people in similar stages -- thank you so much for replying.

    Oh man I feel you about the hair standing up...my hair is really curly, so I get THIS hilarity now:
    lol.jpg


    As for the ferritin --- I'm really not sure whether it was upping my ferritin or lowering my stress levels that made the biggest difference. I'm inclined to think my stress was the biggest factor, as I think I've had low iron most of my life (vegetarian for 17 yrs) -- and I have never felt the levels of depression and anxiety that I did in 2014. I'm positive that stressing about losing my hair was actually what was causing it to fall out. BUT, the iron levels improved around the same time as my stress levels...so I'm really not sure. Will definitely be aware of both for the rest of my life!! haha <3
     
  13. hairtothere

    hairtothere Established Member

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    I'm glad you posted back with an update. I've been seeing some improvement with my TE too and it is a relief to not be quite so consumed and depressed.

    The akward regrowth is something that I am dealing with too, it is a welcome "problem" at this point. There is still a long way to go, shocking how fast your hair can fall out and change overnight, recovery is a long slow process.
     
  14. JenVoy

    JenVoy Established Member

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    Thank you for coming back and posting an update! It is always uplifting to read a recovery story. It's amazing that you were so positive about your experience. While you're currently in it however, it's harder to feel that way. I will say that I felt so depressed and hopeless when this all started I considered getting on a depression medication. I decided against it, considering I have a child to care for, and a drug was the cause of my TE to begin with. Not a wise idea to take the risk. I'm now on month 4 and while I'm still devastated that I've lost 45-50% of my hair...I've tried to deal with the hand I've been dealt.

    I was curious if you had a low ferritin, like many women on the forum have? I'm sure ferritin is a contributing factor of continued hair shed after the 6 month mark...but I'm also wondering if our bodies are just going to do what they're going to do. I also wonder if recovery varies from person to person, despite being as healthy as we can and conscious of our deficiencies. I see a few women are in recovery now with somewhat low ferritin levels. It's all very interesting.
     
  15. firefly8

    firefly8 New Member

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    Hi JenVoy --- thanks for the reply. <3
    I want to say that I so, so deeply understand what it's like to be in the depths of depression as a result of hair loss. The moment I realized what was happening with my hair (April 2014), I plunged into a near-suicidal place. I was massively depressed, full of anxiety, and felt like there was truly nothing to live for. It took me a year of therapy and a LOT of self-care to get anywhere close to okay with my situation. It's only after much time, effort, and direct intervention that I'm able to look at it in a positive way. Sometimes I still feel myself slipping into old patterns -- I'm not totally out of the woods yet, and I still have to actively intervene in the anxiety spirals from time to time. My hair loss journey has been by far the hardest thing I've had to deal with (including -- if I'm completely honest -- close family deaths, as heartless as that may sound).

    I really think cognitive behavourial therapy was what saved me -- changing my thought patterns and my ways of looking at the world. Much more permeating and lasting than depression medication (which I really feel should only be taken if you have a chemical imbalance -- which I don't have; my depression was certainly situational) -- and the bonus is that I feel like a much happier, less stressed person now, regardless of how much hair I have on my head! Dealing with the hand you've been dealt is a lot easier with CBT intervention strategies and support :)


    I did have low ferritin, which I'm positive had an effect (it was at 14.4 when I was tested in June '14). I haven't had a blood test in awhile, but I had raised it to 70-something by March '15, and I think my recovery started in June-ish. I highly recommend taking 1g of l-lysine with your iron pill --- helps absorption so much!

    I too find the differences in bodies so interesting. I think my shedding was a combination of low ferritin and high stress (as SarahS suggested up the thread), so am trying to keep a handle on both of these. Mental health has such an effect on our physical bodies, though -- that link cannot be stressed enough.

    Lots of good wishes and hope to you! <3

    - - - Updated - - -

    Oh-ho, that's so interesting --- makes so much sense!! :)
    Hair halo, yay! :)
     
  16. Momof2boys

    Momof2boys New Member

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    I too went to see Dr. Donovan in Toronto. And took the time with me as well and said not only did I have CTE but also Androgenetic Alopecia. He suggested I take Vivasal and use the laser comb. I didn't take the sups because I'm already on better quality ones through my natural doctor but I am using comb and so far I have been seeing less hair shedding. Hopefully this will be a new trend. Good luck to you
     
  17. sheeny

    sheeny Established Member

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    Momof2boys- did you have initial extra shedding when starting the comb?
     
  18. Momof2boys

    Momof2boys New Member

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    No I didn't. I'm starting to see a little bit of growth at the temple but not much in the middle. Dr. Donovan said that it would take 4 to 6 months to really see the difference. I've been on it for just under two months. He also said the comb is known to work on only 25% of the cases. Let's hope I'm in the minority!
     
  19. travi3za79

    travi3za79 New Member

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    My hairloss

    I was diagnosed with CTE in 2013 and still waiting for my hair to start growing back....so stressing seeing your hair fall a lot... I recently had 2 surgeries and I'm hoping it doesn't prolong my hair to start growing..patiently waiting
     
  20. oabab

    oabab New Member

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    Hello Firelfy!

    How are your doing now and how is your hair journey?

    I've been dealing with this issues for 3 years now, on and off, more off, is most probably CTE because of poor stress management and some hormonal issues/
     

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