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Entering TE Recovery-Photos

Discussion in 'Success Stories and Positive Outlook' started by Wolf924, Aug 5, 2015.

  1. tula

    tula Member

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    Thank you so much to everyone who is giving some regrowth hope! I am about a year in and I am hoping my shedding is lessening... but my hair looks exactly like yours did Wolf. The wide part, thin temples, but I am very thin in front. I also have seborrheic dermatitis that I just started a medicated shampoo for about 2 weeks ago. I am waiting on an appointment with a dermatologist that specializes in hair loss.
    The worst part is I think I have TE, my current dermatologist is unsure and told me to start Rogaine. I haven't yet because I am afraid it will ruin my hair for life and I am only 33! But then I stare at my hair and don't want it to get any worse. This whole thing is just awful.

    Is a ferritin test automatically part of a CBC or is it an extra order? I don't think mine has been tested yet. My iron was 12.9, just above normal. So completely possible my ferritin is low.
    Thank you and congrats to those in recovery!
     
  2. hairtothere

    hairtothere Established Member

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    Ferritin is not included in a CBC, it has to be requested as part of an iron panel. It is important to get your exact level because "normal" is a wide range from around 15-310 with the "ideal" range for hairgrowth being 70-100
     
  3. Wolf924

    Wolf924 Experienced Member

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    Hi Everyone:

    Posting with what will likely (hopefully) be my very last update. I came back to the boards to be sure to say I am confident at this time to tell you I am completely recovered from TE. My hair looks and feels exactly as it did in 2014 before this madness began. I never got back on birth control, and I continue to take a pre-natal vitamin when I remember. Otherwise, I am 100% back to normal. I never thought I would get here.

    Wishing the best to all of you, especially those who are at the beginning of their journey and have no idea what to do. Try to stay positive! Love and light to all. <3
     
  4. hairtothere

    hairtothere Established Member

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    Yay Wolf! That makes two of us, my TE timeline is basically the same as yours, your recovery was just a slight bit ahead of mine. Your posts helped keep me hopeful and sane so THANK YOU. My hair is now back to "normal" too and my stylist is once again complaining about how long it takes to dry it.
     
  5. Ruth

    Ruth Established Member

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    Wolf, that is amazing news, I am very happy for you.
    I remember how you were convinced that you had Androgenetic Alopecia and then had the biopsy that said that you were already recovering.
    Good to hear you are fully recovered now. And thanks for coming back and letting us know.
    I do wonder how your hair looks now. Could you post a pic?
     
  6. Trinitytx

    Trinitytx New Member

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    This makes me so happy. I don't know you, but think of you occasionally. I swear we could be bizarro twins with the way we have the same hair, hair loss, and even the same thought process and anxiety. I am cautiously optimistic because I had a very long and slow tapering, but I think I am about close to normal shedding as of last month. Praying I recover as well, and praying for everyone on this board.
     
  7. mellie

    mellie Established Member

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    Thank you so much for coming back to let us know and congrats on your full recovery!

    These questions are for you and hairtothere since you both seem to have recovered:
    - did you ever think you had Androgenetic Alopecia instead of just TE? At what point did you realize it was TE?
    - for hair loss caused by stopping the bcp, do you think it's always better to stay off?

    I had TE>Androgenetic Alopecia from stopping the BCP. I went back on right away but with no success. Now I'm also on Rogaine. The next logical step is Spironolactone but I'm hesitating and wondering if the pill (Desogen) is the culprit and if I should just let my body heal itself instead of throwing more drugs at it.
     
  8. JenVoy

    JenVoy Established Member

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    Hi Mellie! It sounds like we are in similar boats. Of course I can't speak for the original poster here BUT....from what I understand her hair shed was only 11 months long. There are many women here who are on years of hair shed. I'm going on year 2 in July. I wish we had more comparison with those women who have endured 2+ years of hair shed and recovery.

    I was diagnosed by Dr. Donovan with Androgenetic Alopecia and CTE. THAT I do NOT understand, as my hair loss was from taking trazodone 2 years ago. He also told me that trazodone caused my hair loss. Anyway, I'm beyond confused, but I'm still holding onto hope that it will stop one day.

    I personally think these synthetic drugs are altering our hair cycles and causing them to go into telogen phase. It's no surprise to me that the handful of women that I've come across online have had hair loss and recovery from year 3-5. When I had asked Dr. Donovan if he had encountered women that have had recovery after year 3-7 of hair loss he looked confused and stated he had never heard of that before. Well...DUH! The anagen phase is 3-7 years homeboy!

    I have met 3 women online that have had recovery within that timeframe. It makes sense to me. Other women, aren't so lucky. I'm crossing my fingers myself and others on here might be the lucky ones! Here's to hoping!
     
  9. mellie

    mellie Established Member

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    Hi Jenvoy,
    i certainly hope that you are right! It will be 2 years for me in August as well and I feel like my life has been on hold since it started. Quick question: from the women that you talked to who recovered, was there any case where stopping the bcp was eventually beneficial? I've been back on for 2 years now and ultimately want to stop FOREVER but I'm terrified about causing another TE and also having to deal with an acne rebound. That plus the hair loss would be very difficult to go through! I just haven't come across a lot of cases or recovery from going off the pill for good.
     
  10. Wolf924

    Wolf924 Experienced Member

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    Hi Mellie:

    I came back on to check if some of the women who helped me along were experiencing recovery--and I saw your post.

    I definitely did think my loss was Androgenetic Alopecia because I had a lot of loss on my crown. I never believed it was TE until I saw massive recovery happening. Until that point I was terrified it was Androgenetic Alopecia, even after my biopsy--which I do think was helpful to me. I saw so many doctors and all of them asserted it was TE, because I had a clear trigger and they could not see any miniaturization occurring.

    As for BC, my personal opinion is that this is what caused my TE and it is responsible for the TEs of many women, and can easily kick off Androgenetic Alopecia in those who are predisposed. Any TE or CTE hair fall can 100% trigger Androgenetic Alopecia in those who are genetically predisposed, and frankly, history of family members is only part of this. I felt in my heart that it was not right for me to go back on the new BC, and so I stayed off and let me body recover. I will never EVER use any form of BC again--I told my husband its his worry now, and he agrees with me. No more BC drugs/foreign entities in my body. I also for this reason decided not to use rogaine, it was a personal decision for me.

    I know I shed for "only" 11 straight months, which is less time than many women on here, but no less traumatizing. I was completely in despair. I lost 50-60% of my hair in the first 3 months of shedding. It was horrifying. I was considering shaving my head. I am in a high profile job and I was mortified being in front of colleagues. I felt disgusting. So I do understand your pain and fear, but I want you to know that even with Androgenetic Alopecia you CAN RECOVER a large portion of your hair and you should never give up hope. I can give you my private email if you wish to speak more. <3 Much love to you.
     
  11. Trinitytx

    Trinitytx New Member

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    Wolf, i don't know how to private message you. I would like to ask a couple questions- i promise i won't harrass you lol
    Can you tell me which derm you liked and is that the one that did biopsy? I want to go to a credible place.
     
  12. Wolf924

    Wolf924 Experienced Member

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    Hi Trinitytx!

    Its not a bother--I do try to come back to scan these forums once in awhile because I recall how DESPERATE and anxious I was when I was in the midst of my massive shed. At one point I could not get out of bed or eat. I also lost so much hair in one shower my crown was suddenly shining in the light--God that was the worst day. The hair ball was the size of my fist--I brought it to my derm.

    I saw 3 derms, an endo, an internist, my primary care doctor, a trichologist and my gyno. The BEST doctor hoenstly was my primary care doctor. She ran many tests and revealed that I had chronic mono and MCV--both of which are known to cause hair fall. They she tested my sex hormones over the course of one month to see what MY baseline norm was. She believed my hair loss was a "perfect storm" of BC switch, mono and CMV. She was amazing, gave me her cell phone and shared stories about other patients of hers who had hair loss as well and were recovering. She was incredible. I say always start with your primary care doctor--they will look at the whole picture and not just your scalp.

    - - - Updated - - -

    Oh my last derm did the biopsy--she said at month 6 of shedding it was time to get one.

    - - - Updated - - -

    Dr Yolanda Holmes in DC--highly recommend.
     
  13. mellie

    mellie Established Member

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    Hi Wolf! Thanks for the reassuring words. It's definitely hard to stay hopeful sometimes. I'd love to talk more by email. Can you send it to me by PM? Thanks again!!
     
  14. Trinitytx

    Trinitytx New Member

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    Wolf, thank you sooo much. I've always wanted to visit D.C, so I am seriously considering making an appointment with her.

    My hair is exactly like yours- same texture, curls. I even have the see-through front lol. I'm in month 10 and currently lose between 65-85, sometimes more. Big improvement from peak of 400 in September. My anxiety is through the roof though, so I am sure that's feeding it. I honestly have to go back and read your posts twice a month to feel better, so thanks for that. ☺ And thanks for coming back; it's like a life line to those of us who reach dark, dark places in this ordeal.
     
  15. Lostinhairloss

    Lostinhairloss New Member

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    Wolf, you're such a babe for coming back and helping us!
    I (and my doctor) believe my hairloss was triggered by chronic mono too! Gosh, what an awful disease, not only did it make me miserable for months, it also caused hairloss, which has been ongoing for 6 months. In the last month it has been fluctuating a lot. I would go days without any noticable shedding, than, just when i'd feel like yes, this is over, i recovered, Bamm a heavy shed day comes. Not that heavy though, 40-50 hairs max. But it's soooo frustrating...and of course, on those days i switch to panic mode and i immediately think it's Androgenetic Alopecia, and my bad hair day will turn to a bad hair life...wish this was all over now :(
     
  16. jump1

    jump1 Established Member

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    Wolf did ur hair texture change? Did ut get thinner. Grow back finer. 2 years hairloss for me starting to stop i think. Hair is so fine now even hair growig back. 14 weeks after hpylori removed and hair loss doesnt seem as bad. Not falling out in chunks when it is touched. Keen to know about regrowth and if hair became finer
     
  17. Wolf924

    Wolf924 Experienced Member

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    Hi!

    I am back for another update at the request of a woman I kept in touch with--my hair is 100% the same. Its fully grown back, I have no more issues with it.

    To answer your question jump1--my texture DID change right before the massive shed--it became sort of waxy and weird. Then is shed and became very soft and limp--too silky. It never grew back finer--if anything it grew back thicker. I was just saying to my husband last night that my hair is ridiculously thick. I think I was VERY lucky.

    Still taking a pre-natal vitamin and anti-anxiety med as needed, and doing great.

    I wish you all the same luck and luscious lock victory.
     
  18. jump1

    jump1 Established Member

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    Thanks for the feedback. I am about a month into a greatly reduced shed. Nearly pre hairloss stage. My hairs that didnt fall out are all so fine. My hair growing back is fine. Very little growth and regrowth. When hair does regrow it kind of curls around on itself doesnt poke straight up in the air like a poker. My hair all over body has thinned got finer and slower growth. although shed slowed and i am happy about that i am very worried about the fineness and lack of growth
     
  19. Jammer

    Jammer Member

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    Congrats wolf! I'm hoping to start controlling my shed as well and finally get off BC, which I think triggered it. WOuld you mind sharing which prenatal vitamin you took? THanks!
     
  20. Frustrated

    Frustrated Member

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    This is so interesting to me! I started massively shedding last September, went hrough three Derms, told TE, TE and Alopecia Areata. I noticed when it all started that my roots felt waxy, my normally drying scalp was scaly and weird and the roots of my hair felt like there was some thick product on them! Painful too! Now the shed has slowed and I don't think I see re growth, but the texture is too soft, like corn silk. Bloodwork came back very low ferritin (10) and vitamin d (23) so I'm supplementing d3, iron, vit c and lysine because all of a sudden I started getting cold sores I haven't gotten in fifteen years! Perhaps this is some weird systemic thing, and hopefully that means I'll have re growth soon too fingers crossed!
     

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