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A Story of Recovery from Chronic Telogen Effluvium

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

  1. Vicky1130

    Vicky1130 Guest

    I have read countless posts on this website and finally decided to share my story of Chronic Telogen Effluvium in hopes to help anyone else suffering from the same thing.

    My hair loss began back in August 2011, exactly 2.5 months after I was hospitalized for 4 days with a bacterial virus and a fever of 40C (104F). I remember taking a shower and then brushing my hair and handfuls of hair just kept coming out.....it was shocking. I had long, black, fairly thick hair and the amount I was losing was scary....probably around 300 hairs per day. At first I thought it would stop after a few weeks but by November I began freaking out and went to see my family doctor who referred me to a dermatologist. I finally saw the derm in January 2012 and by this time I had lost around 25-30% of my hair. The derm took a look at my hair, did a pull test and told me I had telogen effluvium caused by the high fever I had back in June 2011. He assured me that it would end soon as TE lasts up to 6 months. Well, it didn't stop....I was losing so much hair so fast that I began having severe anxiety, couldn't sleep or eat well.

    I went back to the derm in April 2012....by now my hair loss was noticeable to my family and friends and I had probably lost 40% of it....my pony tail was half of what it used to be. I was also quite concerned because I was noticing short thin hairs between 1-3 inches that were shedding...on my pillow is where I would notice it the most. He said I may have Chronic Telogen Effluvium but he would refer me to a dermatologist that specialized in hair loss so that I can get a second opinion. In August 2012, I finally went to see the 2nd derm....she looked at my hair for less then 30 seconds and said "You had Telogen Effluvium which has now turned into Androgenetic Alopecia and the only thing you can do is use Rogaine." She was so cold and matter of fact....in that moment my heart just sank....

    I didn't use the rogaine and instead decided to stock up on any and all vitamins, shampoos, herbal remedies that were supposed to help with hair loss....I even tried onion juice for 2 months....nothing made a difference....I was just constantly losing hair.....my house, clothes, car, etc, was all covered in my hair....it was unreal.

    No one can understand just how devastating hair loss can be to a woman unless they have been through it. It is part of our identity and is one of the things that made me feel beautiful. My then fiancee (now husband) was so unbelievably supportive and made me feel beautiful every single day.

    I was beyond devastated....knowing I had Androgenetic Alopecia, I started looking into wigs since the future seemed bleak...I was only 31 and could not accept that this was happening to me.....my hair had always been my pride and joy. I kept analyzing my hair every day, taking pictures obsessively, and I kept noticing that I constantly had regrowth (although I was shedding a lot of it), my part was less dense but not wide and my temples were so sparse. This seemed consistent with TE or CTE. And so, I decided to give it one last shot and get a 3rd opinion....I just felt that something wasn't right with the Androgenetic Alopecia/female pattern hair loss diagnosis.

    I went back to my family doctor who referred me to another derm who then referred me to one of the best and highly regarded Dermatologists in Toronto...his name is Dr. Jeff Donovan.

    I finally saw Dr. Donovan in February 2013. He spent over an hour with me asking about my history and analyzing my hair with a magnifying tool. He was so patient and kind...I wish all hair loss doctors were more like him. Once he was done, he told me that I had Chronic TE and not Androgenetic Alopecia....he said that CTE can last anywhere from 1-7 years or more and that it was simply a waiting game. I was cautiously optimistic after my appt with him but for the first time in a while it gave me hope.

    During that year, my hair loss fluctuated quite a bit but it was never normal for me. In the summer of 2013 I was losing around 150 hairs per day instead of the 200-300 I had been losing for almost 2 years straight. Then in December 2013 I was once again hospitalized for 2 days with Influenza and a high fever. Sure enough, after 2.5 months my hair started shedding profusely.....talk about one step forward two steps back....it was hard but I just kept hanging on to the hope that I had CTE and the shedding would soon end.

    In May 2013, almost 3 years after my hair started shedding, the loss finally slowed down and I was now shedding 20-40 hairs per day (normal for me)......I was scared the first time I lost around 20 hairs in the shower because I just thought it was too good to be true. It has now been 4 months and my shedding has been normal. I don't know if I can fully put 3 years of hair loss behind me just yet but I am hopeful. Maybe my hair will start shedding again in a month or a year, maybe it wont but if it does I will try not to freak out since I know I have CTE.

    In the last 4 months my hair has thickened up by at least 10-15% and I have so much regrowth....my hair is all different lengths. I'm not totally convinced that I'm out of the woods yet but I can definitely breath a bit easier.

    Hair loss has been a very difficult journey for me and changed me in more ways than I could have ever imagined....So I wanted to share my story of CTE recovery since there are not many stories out there. I hope this post helps someone who is also suffering from CTE to know that there is an end in sight. My advice to anyone suffering from hair loss is to get a second, third or fourth opinion....you just never know if the diagnosis you received is correct or not...trust your instinct!
     
  2. Eli777

    Eli777 New Member

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    Hi Vicky,:wave:
    It is really sweet that you are posting this extremely good news to help others.
    I for one really appreciate it. Happy endings are sooo rare and far between, that success stories like yours really boosts moral:eek:nfire:.
    I’m extremely happy for you, and I hope your hair will grow stronger and stronger and stronger.
    Thanks again, and please come back and visit again anytime you like.
    Eli
     
  3. Kelly7

    Kelly7 Established Member

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    Thank you very much for sharing your story, Vicky. That is great you are shedding a normal amount of hair. :) Regarding your re-growth, did you ever notice any thinner hairs? I think I have CTE due to my high sheds and re-growth (without Rogaine), but what concerns me, are the thinner hairs amongst plenty of thick, normal hairs. I know that thin hairs can be the result of constant shedding and regrowth cycles, but they make me wonder if I have miniaturization.

    Thanks
     
  4. hairlossmaniac

    hairlossmaniac Established Member

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    Hey Kelly7 it's same with me . Amongst all my naturally thin strands of hair I find some more thinner and very few really thick strands
     
  5. Vicky1130

    Vicky1130 Guest

    Thank you for the kind words Eli...when I was going through my hair loss, all I wanted was to hear about a recovery story and could barely find any so I hope this post is helpful:

    Hi ladies....yes I began losing those short thin unhealthy looking hairs about 9 months after my hair loss began.

    I started to notice a lot of them on my pillow in the mornings and this sent me into panic mode. I also would find them stuck to my hands when I would wash my hair. They were no more than 3 inches long and so thin in diameter compared to my normal hair strands.

    I was so upset that some of my regrowth looked so unhealthy but the 3rd derm I went to assured me that these hairs were just cycling through and this can happen with CTE.

    Now that my shed is down I don't lose too much of these but I still find one or two here and there.
     
  6. LoosingItAll

    LoosingItAll Established Member

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    Thank you Vicky . I'm so Plesed to see this post... I had the swine flu January 1 st of 2014, Ironically. My monthy cycles began to mess up the same month and then Bam !! March 2014 Massive hair shed. Dr, says i have CTE as well. But I have had no biopsy . Shed stopped for 6 weeks, and now I'm sick with bronchitis and a touch of phenmoina and wow. Here comes the shed again . Keep us posted on your sucsess ! :)

    Shannon ♥
     
  7. Vicky1130

    Vicky1130 Guest

    Hi Shannon....I didn't have a biopsy either. From what I understood from my Derm was that TE or CTE can definitely be triggered by any physical stress to the body such as severe illness, surgery, or having a baby, etc. So it sounds like your swine flu triggered your shed.
     
  8. Kelly7

    Kelly7 Established Member

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    Hi Vicky, thanks for your reply regarding thinner hairs. I started losing and noticing thinner hairs after my worst shedding period in 4.5 years and once I got quite a bit of re-growth. Mine thin, unhealthy hairs are also no more than 3 inches long. Out of 100 hairs, I lose about 10. I hope your hair continues to thicken and your sheds remain low. :D Thanks again for sharing your recovery story.

    Shannon, I hope you get well soon. Hugs.
     
  9. Eli777

    Eli777 New Member

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    Shannon,
    I hope you feel better soon. Sending you lots of healing positive energy

    Eli
     
  10. LoosingItAll

    LoosingItAll Established Member

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    :)Thank you Kelly7 and Eli.... A few more days of this antibiotic and rest and I think I will survive. Washed hair tonight. I was to sick to even care about my hair ball. I have got to get back on my vitiamins. I feel so pewny and I have not been able to excersie in almost 3 weeks . I'm in a rut . Throw me rope !

    Love to all

    Shannon
     
  11. DonnaL

    DonnaL Established Member

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    Thanks for sharing your story Vicki :) My story is very similar to yours... similar age and also suffering CTE for 3 years. The only difference for me is I also have scalp pain with mine and the CTE probably uncovered Androgenetic Alopecia because I have little regrowth in my front. It's been hell. For me, I've had one trigger after another between extreme stress, infections, hypothyroid diagnosis, starting and changing thyroid meds, going off the pill and getting pregnant, losing 2 pregnancies, anemia, and getting pregnant again (and soon to give birth). I've gathered that what CAN trigger TE sheds for me WILL trigger TE sheds for me, always. Only once in this entire journey did I have recovery, and it lasted 2 whole months. It was absolute bliss. Sadly I'm back here again. I am hopeful that maybe, just maybe it will simmer back down after I've stopped breastfeeding, because I'm pretty sure CTE will continue through BF'ing (and not to mention I'll already be shedding from giving birth). Such a nightmare. At any rate, I'm glad you are in recovery and I hope it continues for you. It's great to read recovery stories and gives people hope.
     
  12. Vicky1130

    Vicky1130 Guest

    Hi Donna....first of all congratulations!

    I also had a lot of scalp pain...the pain would come and go throughout the entire time my hair was shedding but my scalp always felt tender. Now that my shed has been down I don't have scalp pain or tenderness.

    Sounds like you have had a lot of triggers ....I know how difficult it can be...the most traumatic part for me was the constant shedding.....seeing my hair come out in handfuls for almost 3 years devastated me emotionally. Blow drying my hair was the worst....or the feeling of hair creeping down on my arms still makes me cringe.

    I honestly thought at one point that my hair loss was never going to end.....but it has for now and I'm grateful and I hope the same for you.
     
  13. ema

    ema Guest

    hairloss

     
  14. sms26

    sms26 Guest

    CTE

    Thanks for sharing your story, Vicky. I am also wondering whether I have CTE. My hair loss started in October 2012 all of a sudden, and about 3 months after having high fever. I thought it was TE but it never really stopped. I lost a lot of hair in about 5 months and the derm told me it is Androgenetic Alopecia, as if Androgenetic Alopecia happens all of a sudden. Another one I saw told me it is probably TE, but it's been two years now and I keep losing a lot more hair than normal -- some days around 50-60 but some days definitely 100+ hairs. I find them on my pillow, clothes, and especially when brushing after the shower. When it first started I found out my iron, ferritin and vitamin D were all low, and I started taking iron pills and vitamin D but the shedding slowed only somewhat and it continues at faster rates periodically. First I lost hair at the crown, then on the sides, and all over, and for the past 6 months or so it's been really thinning along my front line. I always have regrowth, my hair never stopped growing, but a lot of the new hairs are thin and many of these fall out along with the older thicker ones. I don't know what supplements to take any more. I have chronic neck pain and maybe that is contributing to the issues, but it is not my hormones (I was 37 when it started) or my thyroid. I recently went to the Belgravia center -- a total waste of time - they just want to sell you expensive rogaine. They said I had lost 10-15% of my hair whereas I know it is at least 35-40 judging from the size of my ponytail. I am just worried that this keeps getting worse really fast and I am out of my wits about how to stop it. I recently went to another dermatologist who just said it is my age (39) and my hair looks better than most people at that age ?? -- again, I cannot believe how can these people can presume to diagnose you.
    P.S. I just got my bloodwork, which I hadn't had done in 10 months, and my vitamin D is very low again (21), and hemoglobin on the verge of anemia. They did not do the ferritin, which I'll do in a month, but I'm sure it is low. I basically am having another bout of TE, which keeps recurring at various intervals and degrees of intensity, because I cannot get my vit D and iron at healthy levels, despite some supplementation. It really has been proven to be the cause of female hair loss, and my hormones are completely normal. It just makes me angry again that dermatologists dismiss you as Androgenetic Alopecia without a blood test just because you're in your late 30s.
     
    #14 sms26, Oct 5, 2014
    Last edited by a moderator: Oct 16, 2014
  15. jayne

    jayne New Member

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    Vicky, was there a pattern to your loss (more on the top or front or sides?) or was it even diffuse all over shedding?
     
  16. sms26

    sms26 Guest

    Thanks for the link, Sarah! It is really informative and the articles there definitely describe my issues, but how to get the doctors to listen and perform the testing they are supposed to do is a big problem. And this is not just dermatologists, the GP and others I've had to deal with are equally uncaring. At least there is a community online where you can get help and treat yourself.
     
  17. Kristine8882002

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    Vicky,
    Thank you sooooo much for sharing your story! My life has been Hell the past year! I believe I have cte but haven't had a diagnose yet. My hair continues to grow, but sheds a ton!!! I found out that I have a hormone imbalance so I was put on the pill, even though I want a baby. No one truly understands the damage that this has done, I'm so depressed and angry. Finding a success story has really helped me, and I hope your success continues. Thank you for posting your story, and giving me the hope I need .
     
  18. Lisis

    Lisis New Member

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    9 years living with CTE

    First of all, I'd like to apologize for my English, I'm from Spain.

    Thank you Vicky for sharing your story. I haven't been that lucky this far. I have CTE too (recurrent and very severe TE, always from May to December) since 2006, and no doctor has ever been able to find a trigger; my blood test (hormornes, tyroids, ferritin...) seem to be perfect. I'm currently going through my TE number 9, which hasn't stopped even when I am 20 week pregnant. I've always heard that your hair gets beautiful and thick during pregnancy, and was looking forward to that, dreaming about 9 month of peace... Well, not for me. And (like Donna says), of course, I'm not as silly as to think I won't go thought the well-known post-delivery hairloss.

    It's not that I've lost hope, but somehow I think that hope's not doing me a favor, quite the opposite, since i hate the way my hair looks (I've lost over 70% density and volume), but, as doctors say i won't go bald, I'm standing still, doing nothing, waiting for the new recovery. A slight recovery will come, as usual, but my hair never has the time to catch up when a new shedding starts, always on time (May) and looks terrible :(

    Did you do anything special to stop the shedding or just waited?

    thank you
    Lisis
     
  19. kbay

    kbay Guest

    My Telogen Effluvium

    I had telogen effluvium ever since I was about 4 years old. The first time my hair fall out I had a fever for a few days in a row my mom noticed a lot of hair on my pillow a couple months after I was sick. It happened again a few years later I had a fever for a almost a week & again, a few months later my hair started falling out. The one thing my mom noticed that kept happening was a high fever followed by hair loss. When I was 15 I was put to sleep for a colonoscopy & endoscopy; sure enough a few months later hair started coming out by the hand full. When I was 16 I had the swine flu which made my hair fall out worse than it ever has before. When I was 17 it was finally starting to come back in when I had my wisdom teeth taken out; I had the procedure done no anesthesia, knowing it would make me lose my had. The antibiotics I had to take afterwards ended up giving me such a bad allergic reaction, my hair fell out from that.

    In 2013, I got the flu on Christmas &although I constantly stated into of my fever with Advil and what not, my hair started falling out again around April 2014. My hair was already thin so when the hair loss finally slowed down (around July or August) I had about 1/3 of my hair. I started taking a good multivitamin in June 2014 hoping it would help along with 5000 IU of vitamin D and 10mg (10,000mcg) of biotin daily! In September 2014, I had a kidney stone & had to have anesthesia for surgery. I was so heart broken since I had all my tiny little baby hairs finally poking through, about 2 cm long. I had the anesthesiologist use the smallest dose possible.

    I've never missed a day of biotin since my surgery & now, January 2015, my baby hairs are all about 4 inches/ 10cm long & I've had very minimal hair loss! I know the pain of standing in the shower with handfuls of hair everyday for months & watching your hair thin thinking nothing can be done. I also know the excitement of seeing it grow back in. I never take the new growth for granted, even when I have more short flyaways than long hairs.I suggest taking biotin because I know for sure it's the one thing that saved my hair this time around!
     
  20. Bootsie

    Bootsie New Member

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    For those of you who are going through Peri-menopause / menopause, I found this link to be helpful. I have been having hair loss fluctuations for almost five years while going through perimenopause. I have thinning but no one notices. Sometimes it looks worse than other times, but mostly no one can tell. I have on occasion thought of starting Rogaine but have not done so yet. I find that when I skip periods, my hair looks much better. I am hoping that once menopause is over, that my hormones will balance enough to keep the hair. http://menopausehealthmatters.com/symptoms-of-menopause/menopause-hair-loss
     

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