Hope for women with TE

Discussion in 'Success Stories' started by kjm416, Nov 4, 2010.

  1. April

    April New Member

    What to do? What to do?

    I have been dealing with hair loss since stopping Yasmin in april 2010. I am 36 years old. Ive been reading from this site for many months & appreciate everyone's stories. There's so much i could write about how this has affected my life greatly, but will try to stick to the facts. I know all of you completely understand how it can take over your life! I first noticed a little shedding in June/July. I've never had much hair so didn't shed hardly any prior. Then, in August it really started falling out. I did find out my ferritin level was 9, but it has since raised. The texture of my hair completely changed, oily roots, fried ends, even something that looked like dandruff, but wasn't. The hair loss was through the temple areas back more than the top of my scalp. It then got better nov, dev, & Jan. I thought it was the iron & my nightmare was over. Then, in feb I started noticing the same texture change & knew it was getting ready to fall out again. Sure enough, it began soon after. My gyno has recommended I go back on the bc pill (mononessa), prescribed spironolactone, minoxidil 2%. I was already taking biotin, multi vit, & using nioxin shampoo & conditioner. I did start the spironolactone, but am hesitant to continue taking it or to go back on the bc pill or use the minoxidil. I know it's my hormones! I didn't have a period till Dec, & still am only bleeding 1-2 days. My face & back have really been broken out, but seem to be getting better. I don't know what to do. If my body is trying to get normal, why would the hair loss get better, then start again? What should I do?????????
  2. meggie

    meggie New Member

    Hi April,

    I don't know if this will help but I also had hair loss for over a year starting in May 2009 from going off estrogen (that I had taken for approx. 12 yrs.). I never imagined that this would be a side effect. I went through everything you are going through--oily, itchy scalp, dry hair, etc. After 6 months of hell, I finally went back on the estrogen and started taking Fergon (iron pill). I also took (and continue to take) Andrew Lessman's Hair, Skin & Nail vitamins (which is really high in biotin), and try to get as much protein as needed since this is also good for the hair follicules. As of last Dec. 2010, my hair started growing back in and now I actually don't have to try to hide my scalp as much. I would like to get off the estrogen but am scared to death to try it again. It's such a shame that hormones do this to a woman's body. I hope that your hair loss stops for good and that you start feeling better. I was so worried because my daughter is getting married in May and I was sure I would have to wear a wig. It has been a year and a half of pure hell. Good luck with fighting the hair loss and hopefully you will return to normal really soon!
  3. April

    April New Member

    Thanks so much Meggie for the encouraging words! I completely realize i had posted this under "success" stories. Wonder if i could move it under the correct heading "asking for advice." One saving grace was that My hair immediately started growing back after it fell out last time, but hasn't grown in enough to make up for what I'm losing now. I see my hairstylist Wednesday so she'll be able to tell whether or not it's growing back this time. I'm keeping my fingers crossed! I hope to hear from other women about their experiences with their hair loss stopping & starting again. I've seen a lot on here about those vitamins so I may get those. I've only been using the wal-mart hair, skin, & nail vitamins.
  4. Dharma2

    Dharma2 Member

    Same here

    Hi April,
    I can relate to your experience. I started using BCP due to hair loss from taking too much progesterone which depletes estrogen if not used properly and then developed a blood clot from the BCP's and now have been off of all forms of hormones for almost 8 months. I also tried spiro which in my opinion made matters much worse not better. When I 1st stopped taking the BCP's (Diane 35) I didn't notice much hair loss however 4 months later, right after the end of my cycle, I was losing handfuls and my head was burning. This lasted for a few days and then stopped. Like you, my hair started growing in rapidly and then again 4 months later (just this month) I experienced another major shed along with almost a week of burning, pink scalp. Now the shedding and burning have subsided again but my part and sides do not look so good. I can see scalp everywhere I part my hair. Every time I have a major shed I am convinced I am going to go bald then when it stops I start to see regrowth and my hope is renewed. It's a vicious cycle but I believe the only way out of it is through it. I really don't think anything we take is a solution because we can't take it forever. If I could I would be tempted to jump right back on estrogen but in a way I'm glad I can't because now I have to see this through. To put it in context...I am 42 years old and my hair has always been a huge part of my looks. I had very long, dark hair now it is just past my shoulders and not very thick. I too have texture changes especially when the burning takes place. Does anyone see a correlation between their cycles and their hair loss? Mine always seems to be when I'm ovulating. Perhaps testosterone is highest then. Also anxiety seems to play some kind of role too. The burning, pink scalp is the worst experience of all. When my scalp is inflamed it is impossible for me to get my mind off of the hair loss. It's a very distracting experience. Right now all I am doing to recover is eating well (lots of protein), drinking lots of water, and washing my hair with Nizoral 2% shampoo daily. I am going to wean off of the Nizoral by summer. I don’t think daily use is good but it does help to reduce the hair loss.

    Hang in there April my guess is we will recover. If there is no genetic link to hair loss in your family chances are it is self-induced. From everything that I have read and from talking to a natural path doctor it just takes our bodies along time to return to normal hormone levels. I have been on this road for just over 2 years now. I believe if I had of listened to the dermatologist that I went to in the beginning who told me it was TE and I had to wait it out that I would have recovered by now. I panicked and jumped on BCP’s instead of letting my body find its balance. I wish you all the best. I promise to return and post once I’m fully recovered and not having any more burning scalp or shedding.
    Dharma :>
    Last edited: Mar 15, 2011
  5. April

    April New Member

    Thank you Dharma. I have noticed my shedding is worse around ovulation and around my period. I do plan to try and wait it out at this point. Unfortunately, I never had a lot of hair so I don't have much more to lose, but it has helped so much finding out I'm not crazy nor alone in this battle. Please keep me posted if you find anything that seems to help and I will do the same. Being new to this site, I'm not sure how to navigate all around it. I would love to group all the people who have responded to me so we can continue to keep each other posted.
  6. Dharma2

    Dharma2 Member

    I will certainly let you know if I find anything natural that seems to help April. I will also definitely come back and post if I recover and stop loosing hair or notice any great improvements. Although the site is not always very active I believe that there are lots of women like you and I that read it faithfully. I usually visit once or twice a week to see if anyone has had success. I try and not read too many stories about loss and focus mainly one the recovery and success stories. I find it helps me emotionally to stay positive when I read about a women who has either regrown her hair or who has found success through acceptance. I'm not one of those women yet but I hope to be. I hope we all arrive soon.

    Dharma :>
  7. damascus

    damascus New Member

    TE - how to deal with it ?

    HI !!

    I'm so happy to find this page, you're giving me hope!!
    Im 26, about 10 months ago moved to Canada (from Europe), got married, my dear friend died, I was living in Toronto for a few montha, than moved to Halifax, than to Toronto, and now Im in Halifax. I know it's a lot.
    I noticed about 3 months ago sudden hair loss after washing hair, 300-400 hairs every day !!Everytime I touch my head my hand is full of hair.(probably TE?) My hair is normally thin, but now it looks really bad.
    Two months ago I went to my doctor. He said, that my thyroid is small, my skin was thicker than usuall and my voice was "strange". I did blood test (TSH, prolactin, estrogen, testosteron, ESR, profile) results were ok. I was suposed to take Materna, be patient and wait. So now, I'm taking Materna, Biotin and BioSil (liqiud Silicon), but my hair is still falling out, I have the feeling that it's even getting worse. My doctor said that if you take vitamins in tablets it is really hard to overdose them and it mostly causes stomach problems and not the hair.
    I have beautiful nails, no acne skin but my head looks awful and I'm depressed. I can see some hair growing up, so maybe something is happening on my scalp ?!

    I eat healthy, don't smoke, don't take any hormonal pills. This situation is very stressful for me and I don't know to do.

    I know that I shouldn't be thinking about my hair, but it is so hard, I hate looking at myself and I see everwhere hair !!

    I fell myself lonely, and really have no idea what to do.

    Joanna
    [​IMG]
  8. April

    April New Member

    Hang in There

    JoAnna,

    If I were you, I would keep trying to figure out what is causing the hair loss. You did have a lot of moves recently. Have you been under a lot of stress or is there environmental changes in the locations? Have you changed any medications? I also did a blood test which showed my hormones were in the normal range, but then when I did a Saliva Hormone test, it showed they were very abnormal. Not all Doctors believe in them though, so you have to search around. I have had to go to many Doctors to find one who cares. My hair began doing better in late Mar. which I attributed to my hormones finally regulating themselves after stopping Yasmin in Apr. 2010, but recently it has begun the process of falling out all over again. I had my iron checked and my ferritin level was still only 39 (up from 9 last Aug., but still not very good for healthy hair according to sites i've read). I have increased my iron from 150mg/day to 300mg/day and am in the waiting stage now. Have you had your iron levels checked? I also am continuing a hair, skin, and nail vitamin, calcium, vitamin d, vitamin c (which aides in the absorption of the iron), fish oil, exercising regularly, and trying to eat healthy. I also use a shampoo called Agadir that I really like and is suppose to not have any harsh chemicals. Hang in there and keep me posted if you find out anything more. I will keep you in my prayers. :) April
  9. damascus

    damascus New Member

    Dear April,

    thank you so much for your answer !! It is important for me to talk about it with someone who has the same problem :)

    Yes, I had lately a lot of stress, you know starting new life and there is a lot of new changes in my life, so it could be it. But still, I want to be sure, that it is not something else, so Im going on Monday to another doctor and to force another blood test.
    I wasn't taking any medications, any birth controll pills, really nothing.

    For a short period of time I thought it could be low thyroid. I had no energy, put on weight, thicker skin, constipations, but TSH test didn't show anything wrong. I know that hormons can be very thricky thing, so I will investige what Saliva Hormone test is, cause I've never heard about it.!
    i haven't checked my iron, or B12 or magnesium but i want to test it.
    You're right telling that a lot of doctors don't care or/and don't know what to do. That's why we have to be strong.
    Do you know Materna ? This contains all vitamis and minerals, iron 27mg. I also take Biotin and BioSil, but nothing has changed.

    I've noticed, that only log hair is falling out and without root, short hair isn't falling out, does it mean anything ?

    I'm sorry to hear that you're still having hair loss problem, but the good thing is, that you know, that is because of hormones, you can fixs it and you will have your hair back :)

    Joanna
  10. April

    April New Member

    No, I've never heard of Materna, but it sounds good. Also, don't know about the long hair question. Mine comes out at the root, but also breaks off. Although, I originally thought it was all related to hormones, now I'm thinking it may have been caused by both the low iron and hormones. Now, that my iron is low again, I'm having problems again. I'll let you know if it gets better after I have my iron checked again in 6 weeks. Hopefully you'll get some answers soon! Keep me posted.
  11. damascus

    damascus New Member

    it's slowing down !!

    Hi,

    I think my hair loss is slowing down. Last week i could see ton of my hair everywhere. But now I losse about 50-60 hair a day, so much better. I can also see new hair growing up, so it is getting better (I hope). I still want to check my iron, TSH level.

    April, how did you know that there was something going on with your hormones, and also which hormones ?

    Keep me posted if anything will change :)
    Be strong !
  12. April

    April New Member

    Sorry it has taken me so long to get back with you. I found out about my hormones through a saliva hormone test. A lot of Drs do not believe in them, but my pharmacist recommended it. How is your hair loss now? I have increased my iron to 300/mg a day, but am still losing a lot of hair. I'm going to find out my iron levels in another couple of weeks and find out if they have gone up. After that, I'm not sure where to turn.
  13. damascus

    damascus New Member

    'Hope for women with TE'

    Hi :)

    My hair loss is slowing down, that's for sure,but I'm stil losing eyebrowns and lashes. I don't know if I should be worried about it. Is 2 or 3 lashes a day a lot ?
    I eat very good, a lot of fruits and vegetables, meat almost everyday. i'm taking Materna, Fish Oil, Omega 3, Biotin, BioSil and Be Beautiful Hair&Nails. I know that's a lot but after one month I lose about 20 - 30 hair a day. So it's helping me. And there's no side effects. I also started running, everday one hour, and massage my scalp and home remedy hair mask with castor oil. You have to have time and be patient with doing this all but it's worth it.

    If you have that low iron, take not only supplements but eat meat, broccoli, spinach too. Your body takies only 15% of this 300mg, and 70 or 80% from food. Low and too high iron level can cause hair loss so be careful with it.

    I'm feeling myself now much better, I hope I will see soon new hair growing, there are areas on my head, where I can see my scalp thru my hair, so it was/is really bad.

    I've seen my doc lately and have to find another doc. I wanted to do blodd test, to check if iron level was ok, hormones once again etc. and believe or not he told me, that I look healthy to him and there is no need to do such test..... I showed him bald spots on my head and he said that well not everyone has thick hair.... I couldn't believe he was saying this. I think that a lot of docs that we're just overreacting and that this is JUST hair....

    I wish you all the best !!! If you need any help let me know !!
  14. April

    April New Member

    I don't know a lot about eyelashes. I've never had long, luxurious lashes so haven't noticed a major difference. What is Materna? With the iron, I also take a hair/skin/nail vitamin, fish oil, vit. c, vit. d, and COQ10. I also eat well, don't smoke, and exercise almost daily. I tried using tea tree oil to massage my scalp, but didn't like it. I'm most satisfied with this Agadir shampoo and conditioner. One thing that is different with my hair loss now is that my hair still appears healthy. Before when I shed a lot, my hair texture and scalp changed. This time it hasn't. My one saving grace all along has been the fact that my hair started growing back immediately after falling out. However, my hair is already thin and fine and the growing can't keep up with the shedding. I've just been fortunate that the shedding has stopped for periods of time before starting back. Thanks for the tip on the iron. I do eat red meat a few times/week, oatmeal daily, and beans (black, pinto, chick peas) almost daily.
    That's great that you're only losing 20 - 30 hairs/day. Definitely sounds like you're on the right track. Keep up the persistence! I've never counted how many hairs I've lost. I just know what used to be normal for me. I have had the same experiences with the Drs. I'm so frustrated and definitely know I will NOT see another male. I hope and pray you find someone who will listen and CARE! We'll keep each other posted. :)
  15. damascus

    damascus New Member

    'Hope for women with TE'

    I've never heard about Agadir, I don't even know, where I could buy it to try it. I also don't know what COQ10 is.

    Materna is prenatal multivitamin, contains 27 mg of iron. I've been taking 1 pill a day for 2 months.
    Since I had the feeling that my doc doesn't care about my hair loss I've been investigating a lot ! Along with vitamins that you're taking try zinc, because it's beneficial for hair (also vit. B, A. - but be careful with vit. A - to much of it causes hair loss too). I would also try biotin - if you want to speed up growing back your hair. I'm taking biotin 500mg a day - that's a lot, but there is no side effects of overdosing biotin. My hair and nail is growing like crazy.

    Lavendar, rosemary and castor oils are very beneficial for hair.

    When I was losing about 300 hairs a day they were awful, very dry, couldn't do anything with them. I was puling out tons of hair. Now they look much better, smooth and shiny, they're still very thin, but I see regrowth. Is your scalp itching ?

    I live in place where humidity goes up to 100%, it something new for me, cuz Im from Europe. I had really bad dandruff on my scalp, it could be reason why I was losing that much hair, but I didn't go to the dermatologist, cuz my doc didn't want to give me perscription!!! Next year I'll be in Europe, will to good doctor over there, that I know, and will find out, if everything is ok or not. The worst thing for me right now is not knowing what real reason for my hair was. It's slowing down but what will happen, when I will stop taking vitamins ?!

    And last thing, thinking about hair makes this bad situation worst.

    I hope I could help you :)
    Kep me posted !

    Joanna
  16. April

    April New Member

    Agadir is just a brand of shampoo and conditioner. It's suppose to be natural and gentle on your scalp and hair. I would think any hair salon could get it.
    COq10 is a supplement I take for my cholesterol, has nothing to do with my hair, but it is 1 more pill!
    Yeah, like you, I've had to do a lot of my own investigating. The hair, skin, & nail vitamin I'm taking has vit a, b, zync, and biotin (but nothing like the amount you're taking). My hair is actually growing really fast so I don't think I want to take more of that. One med the gyno prescribed (that I didn't follow her recommendation) was Spironolactone. I've been reading more on it on this site, and thinking I may start trying it; really more for my acne than my hair loss though. I'm tired of being 37 and worrying about acne! Maybe it will help both though.
    I did originally have problems with my scalp itching a lot, but it hasn't been itching this time. I had dandruff really bad too, but not now thankfully.
    I also live where humidity is really high. I've never thought about any correlation with that.
    I'll let you know how the Spiro goes. I'm not real excited about taking a blood pressure medicine when I don't have hypertension or the fact that it is a diuretic. I already feel like I have to pee all the time. We'll see.
    I've really enjoyed our communication. Thanks for being a support!

    :) April
  17. damascus

    damascus New Member

    'Hope for women with TE'

    Hi,

    I have found a good doc, went to him and this is what I know from him.

    I have bad dandruff on my scalp but also on ears and achne on face - this all because of humid and yeast bacteria. I've been fighting with yeast infection for a half year. this should be the reason why I lose a lot of hair.
    My doc gave me presciption for yeast infection and acne. He told to wash my head everyday and once in a week to put Nizoral on dry hair, massage it, leave it fo 10 minutes, and rinse.

    Another thing is that I showed him mole on my stomach, it was changing, itching, and very dark. He did on it a punch biopsy, sent it to lab. It was pre cancer. Next week I will have this mole, skin around it and fat under the skin removed.

    There is also small iron deficiency in my blood so I'm taking further Materna - it has 27 mg of iron.

    I'm washing my hair with organic shampoo, and using aloe vera oil on scalp along with castor oil.

    To see first results I'll have to wait probably a few weeks, so I can't tell right now, if it is working but I'm happy to find this doc, I had the feeling that he wanted really to help me.

    I've enjoyed our conversation too!!

    :) Joanna
  18. drowdie

    drowdie New Member

    A PLACE for ME!

    I just found all of you! I truly thought I was some kind of freak as I have never met ANYONE who has ever heard of what I have which is chronic Telogen effluvium.

    I read so many posts that seem to indicate that it was hormonal but mine always results after a stressor and the shedding begins 2.5 months after.

    Stessors include but are not limited to, emotional stress, physical illness with fever, injury, medical tests or any type of invasive procedure, medications (esp. Wellbutrin, Cymbalta and several of the SSRI's).

    Ferritin was what the Dermatologist instructed me to take, but what do you take for simply living your life?

    I embrace all of you and I am delighted to find I am not alone.
  19. April

    April New Member

    Joanna,
    That's wonderful that you have found a Dr. who cares!!! Please let me know how it goes in a few weeks. What prescription did he give you for the acne?

    Dowdie,
    I posted all of the meds I take in an earlier post, but do not think my hair loss is related to stressors. It truly seem to start after stopping Yasmin for me which was almost 1 year and 1/2 ago. Hopefully others will reply to this thread to give you more info. Best of Luck!

    April
  20. Dindin

    Dindin Member

    Hi drowdie,

    Can you please tell me why you think you have chronic telogen effluvium? How long have you had it for? What does your hair look like today? Once you have a shed from a trigger, how long does it last and does your hair grow back after? Do you lose any brows or lashes??

    What kind of triggers have you had to get a shed??
    Thanks ,
    Din