Hope for women with TE

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

  1. NYCGirlie

    NYCGirlie New Member

    Ladies: First off thank you SO MUCH for your quick responses and sharing your experiences. I will be going to another dermatologist tomorrow in hopes she is more experienced and will run the right tests. I will cedrtainly mention my suspicion that it is hormone-related. In fact I had a strange allergic reaction this year which caused redness, hives, swelling (I have NO allergies whatsoever!!) I just read that hormone imbalances can manifest themselves in allergic reactions! The more I look, the more evident it is to me. I just cannot believe that it has been 1 year 8 months and Im still shedding abnormally. I have never had any hormone or excessive shed problem before the pill so why wouldnt my body just go back to normal hormone levels?! I cant imagine taking another pill after suspecting that is what caused all this...what if that makes it WORSE?

    Pilar- I def plan on getting the hormone panel. I also think I need to get more iron and vitamin related testing too to test for deficiencies. I never counted my hairs but I have am guessing it looks like 300+ per shower. I have limited the amount of times I wash my hair to 1x a week with neutrogena anti-reside shampoo (I need to aksk derma if thats ok). I have been seeing more in daily shed my bedding, coats, clothes, etc. When I graze my hands around my hair mimicking a ponytail and loosely graze my hands down to ends, 6+ fall out weach and every time! They all have the white bulb so its no breakage. I do see some regrowth (I have been taking a multivitamin and biotin) but its not enough. My front hairline and temples are becoming more noticeable
  2. NYCGirlie

    NYCGirlie New Member

    If TE is hormone related from stopping birth control, has anyone noticed if teh sheds are more around pre-menstrual and menstruation? I noticed my daily shed seems to be more but I am only now starting to really take note of any patterns I can notice.
  3. pilar

    pilar Member

    Hi NYCGirlie:

    If you're only washing once per week, it's not at all uncommon to shed 300+ hairs a day. When TE first kicked in for me I was so scared to wash my hair because that's when I noticed most of the loss. I've always washed my hair daily and I didn't like skipping washes, but I felt it was going to be the only way to save me from going bald. Well on days that I would skip washes, my shed would double! My doctors ALL told me that skipping washes wouldn't make a difference in the amount of hairs I would lose. What was already in the telogen phase was going to fall out whether I washed or not. I also remember on the days when I would skip a wash, I would notice hairs ALL over and I hated seeing them just slide out of my hair.

    YES! During the 10 months of TE (and even now that my shed has normalized) I noticed my shedding would increase right before my period or during my period. I think this happens because both our estrogen and progesterone drop in order for our period to start.
  4. Little Star

    Little Star New Member

    nycgirlie,

    From your story, it sounds to me like shedding began AFTER you stopped the pill. If you took the pill for a year and didn't notice shedding, I doubt that it was starting the pill that triggered all this.

    As I mentioned, when some women go on BC, their bodies forget how to make the appropriate levels of hormones on their own. So when they stop BC, all kinds of things (like hair loss) can occur if the body is not producing appropriate amounts of hormones (I have heard of women developing severe acne, growing facial hair, etc. because their hormones were messed up after coming off BC). Usually, over time, the body will begin producing the correct amount of hormones again, but for some women this never happens, and they have to rely on other methods to regulate their hormone levels (just like I have to rely on Yasmin BC to control my horrendous hormonal acne!).

    Different BC pills have different effects depending upon the woman. For example, I have been on Yasmin and Zovia, and when switching, starting or stopping these two different pills I did not have hair loss. However, Pilar took Yaz (it's almost identical to Yasmin) and she lost hair after stopping it. Prior to Yaz, she used several other BC pills with no problems.

    So I would recommend going to the doctor to determine if your hormone levels are off and whether or not your doctor anticipates them returning to normal on their own. You should also be aware that some women are sensitive to even slight hormonal changes so even if your hormone panels come back normal, it could still be a hormonal issue causing the hair loss.
    Last edited: Dec 15, 2010
  5. pennster

    pennster New Member

    Dear ladies -

    I have been reading this thread for a few days and was finally compelled to post myself. First, I complement all of you for the support that you provide each other. I am newly experiencing hair loss and am experiencing a full range of emotions, mostly fear (of how bad this will get) and just complete disbelief (of how fast this is happening).

    My situation: I was formally diagnosed with TE earlier this week after a visit to my second dermotologist. I first noticed visible signs of hair loss at my hair line in September. Looking back, now recall thinking that I was losing a lot of hair when blow drying it back in August - but I didn't pay any attention to it because I had relatively think hair and always lost a fair amount when washing/drying it.

    What started on my hair line has now rapidly progressed to my temples, behind my ears, the top/part (although part is relatively intact) - and most recent area affected is my crown. I was horrified yesterday when I took a really good look at the back of my head and saw the "snaking" part now running down the back of my head.

    My trigger was related to severe psychological stress experienced around mid-year, along with some personal issues and a health scare with my husband, all around the same time. All blood tests/hormone tests are within normal range - my derm told me that it's rare that any abnormalities are actually found in the blood tests.

    I am devastated at how bad this has become so quickly and am also experiencing the scalp pain/burning/discomfort that many of you have mentioned. This makes me very angry, as if losing your hair is not bad enough!

    I am inspired by your stories and am trying to keep the faith. I am just having a hard time believing that I will recover from this. My derm says that she thinks I am at the end of the heavy shedding, although I seemed to lose quite a bit today. It's almost impossible to hide now - everywhere on my head that I part my hair, it looks the same...very diffuse loss. I am starting to see some new growth at my hairline, which my derm says are not minaturized, so some good news.

    My question for you ladies...did any of you have severe loss all over your scalp like me? There are areas that are definitely worse than others - I am now very concerned about the crown/back which have taken a really hard hit. Thanks in advance.
  6. meggie

    meggie New Member

    Hi Pennster,

    Yes, I had diffuse hair loss all over my head, especially on the crown and on the sides. Mine came on quickly also due to changes in medications and also aftershocks of losing my son. It is good that you are seeing new growth. It took over a year for me to see any new growth at all and it started at the hairline. Now I have new growth all over but I know it will take awhile to fill in. You will recover from this, believe me, but it does take time. Stress takes an awful toll on your body and hair, as I know first hand. Good luck!
  7. kjm416

    kjm416 New Member

    Pennster,

    I'm glad that you found this site and thread helpful. In response to your question- I did have severe hair loss that was diffuse over my scalp and mostly on my crown and above my ears. My front part and hairline was not very affected though, mostly just the appearance of thickness on the scalp was affected. Even though I suffered the most loss from the top and sides, those were also the places that filled in the first. Yes, I did lose some of the new re-growth--but as I was reassured by my derm and the ladies on this thread, it is normal (and good! It means the hair follicle is preparing to grow a healthy hair that will stay).
    I know how hard it is when you first realize you have TE. I too, remember looking back and trying to place when exactly I started losing more hair in the shower or blow drying etc. Just remember, it does get better once you identify the trigger and can fix it. In your case since the trigger is stress, you really should focus on finding something that makes you happy or can help you relax. Believe me, when everyone told me "not to worry it's just hair" I remember thinking... easier said than done, you're not the one losing it! But what I did realize is as soon as I got my anxiety about it under control my hair loss started to come under control. I believe that the TE originally started from working out too much and losing too much body fat from running 8 miles a day, but then it continued because of the stress I was having over it. I learned to literally take it day by day and not worry about how much hair I'd lose the next morning and the next and just say to myself: "Do I have enough hair on my head to get by today?" yes. "Is there anything I can do today that will change the hair loss tomorrow?" no. So then I would make myself enjoy whatever it was I normally would've enjoyed and it really helped! I also posted this in the beginning of the thread but one thing I did was made sure I felt good about every other part of myself on a daily basis. I ate healthy, slept enough, wore nice make-up and dressed nicely which helped me feel better about myself.
    I truly wish there was more I could say or do to help you but just know that we have been there and we have gotten through it (I honestly thought I'd be bald by now but I am not and I'm losing about 30 hairs a day).
    I hope you can enjoy the holidays and please write any other questions you have, I'll try to help if I can!
    Best Wishes
  8. pilar

    pilar Member

    Hi Pennster,

    I also had pretty severe diffuse loss all over my scalp. But it seemed a little worse on the top and sides. My part also got wider and my hair line did recede on the left side.

    It's been a little over a year since TE began and for the last 2 months I've been shedding normal amounts (30-60 hairs per day). Every once in a while I still see some fluctuations, but those seem to be further and further apart.

    I think all of us know just how horrifying TE can be and just like kjm, I thought that I would be bald by now. But it DOES get better...I promise.

    I agree with kjm that even though it's easier said than done, the best thing you can do (or at least try) is to relax and know that the shedding will slow down and soon after that you'll see re growth. It does happen and I remember when all of this started all I wanted more than anything was that reassurance.

    Hang in there!

    Hugs,

    Pilar
  9. pennster

    pennster New Member

    Thank you so much for your quick responses! You are all wonderful :)
    I am really worried about the upcoming holidays, as many of my relatives have not see me for awhile, and I'm concerned that they will notice my hair and how thin it's become. Even between Thanksgiving and now, in just a few short weeks, I see a very noticeable turn for the worse. I feel very anxious.

    If you are comfortable with sharing, have any of you ladies worked through a similar circumstace with a holiday, a family event, etc.? Any tips for managing the day to day stress associated with TE? The logical side of my brain agrees with the diagoses I received...totally makes sense given the year that I've had. The emotional side just isn't there yet and hasn't developed the coping skills that I need to get through this. :(

    Your words of encouragement have helped me tremendously...thank you!
  10. pennster

    pennster New Member

    KJM - I love your thought about taking it "day by day" - it's easy to get into the doom loop with this, I'm finding, and I'm learning that it's important to take it one step at a time. Thank you!
  11. meggie

    meggie New Member

    Hi Pennster-- I too have had such anxiety over holidays, special occasions, etc. I informed family, friends, co-workders, etc. what I was experiencing and believe it or not, all I heard was that they didn't notice anything about my hair loss. I truly believe that most people don't take notice of things like that and that we tend to see the worst in ourselves. I know that I had lost a lot of hair but the way I was getting it cut seemed to disguise it quite a bit. I was checking it everyday and noticed how thin it was getting. When I think about it, the only time I noticed other people's hair loss was when I was losing mine. I don't remember noticing things like that before it started happening to me. Yours will grow back, just like mine did. Relax and enjoy the holidays!
  12. Little Star

    Little Star New Member

    Hi Pennster,
    In my experience, we are usually the only ones who notice our hair loss. My guess is that if you don't say anything to your relatives, they won't notice. I have actually had people compliment me on my hair since losing half of it to TE! I think the loss is worse to the person going through it than it appears to anyone else because we're so anxious and hyper-sensitive about it.

    kjm,
    How is your scalp feeling? Mine feels much better than it did when I posted last, but it is still sensitive up top and is now sometimes itchy on the sides and back as well.
    Last edited: Dec 23, 2010
  13. kjm416

    kjm416 New Member

    Little Star,

    My scalp has felt great! It actually feels pretty normal lately. A little itchy from some dandruff but hasn't been tingling or stinging in about 2 weeks I'd say. It's a great relief because it actually lets me keep my mind off of my hair issues for longer when I'm not constantly thinking/feeling my scalp. The hair loss has been slowly on the upward (positive) the past two weeks too so I'm finding a correlation between the scalp issues and my greater shedding or lack of. Lately I lost about 30-50 hairs a day but today I lost a little over 100. My first instinct was to stress but I realized that is still VERY normal compared to 300 hairs a day! I even saw a relative doing her hair and saw how much hair she lost while styling which must have been at least 60. I agree with Meggie that people don't notice the hair loss as sufficient if it's not happening to them and she didn't think twice about losing 60 hairs so I will not either! At least my fluctuating days like today only happen randomly and are more spread out.

    Does anyone feel they shed more during their period? I'm thinking I do but I don't quite understand that because I thought our hair runs on a 2-3 month lag time for triggers then shedding. Maybe it's all in my head?

    My other question is that I do take a pretty strict regimen of biotin and iron etc etc but when is it safe to slow down on all the supplements? I feel like since the loss is under control I can start to taper off of the supplements but I'm worried to have that trigger another bout of TE. Thoughts?

    I've really enjoyed writing with you ladies on this thread and hope you all can set aside the hair issues for a few days and enjoy the holidays! I've decided to do the same. Hair is not worth ruining the holidays!

    Happy Holidays ladies! I hope Santa brings us all some good hair luck in the next year :)
  14. pilar

    pilar Member

    My scalp has also been feeling pretty good. I do have some dandruff scales along my hairline, but it's a lot better than what it was a few months ago. I have also noticed that the shedding has decreased even more. Now I'm losing between 30-60 per day.

    kmj:
    I have also noticed fluctuations around my period. I noticed this a few months ago when the shedding started to decrease. For me it usually increases around the 2nd or 3rd of my period. I've been shedding around 30-60 hairs for the last 2 months and last month I had a day where I lost 114 hairs. This was on the second day of my period, but by the next day, my numbers went back to normal. I've read on different hair forums that it's normal to see fluctuations around your period.
  15. pennster

    pennster New Member

    Hello ladies,
    I hope that you are all enjoying the holidays!
    I want to say thanks again for all of your words of encouragement! I did pretty well during the holidays - I don't think anyone really noticed the thinness of my hair, which I tried to disguise with a ponytail. But, putting on the brave face or a few days has left me exhausted :(

    I am working on relaxing and reducing the stress, but it's so hard! I know that you all understand how that feels and so wish that we were not all going through this.

    I have been searching for new mini hairs, but it's hard to see much of anything going on right now. My hair line seems to be getting more activity in the form of new little sprouts, so I'm keeping an eye on those. But, at the same time, I'm trying not to spend too much time looking at my hair to reduce the stress factor. At one point in the past when undergoing treatment for a medical condition, I was seeing an accupuncture practitioner and am strongly considering going back - it really helped me before.

    I am so glad to hear news about improvement with scalp pain/itchiness - that's wonderful!!!:)

    My question for you ladies....any tips for managing your hair/disguising thinness while in recovery? Is your hair short or longer? Mine is a little below my shoulders, one length, no bangs (which I may need to cut in if this keeps up). I did get highlights last week, which has given the illusion of a little depth, but the crown and slightly below just look horrible and way thin. Any ideas? I'm getting a little tired of the ponytail look. Thanks!!
  16. pilar

    pilar Member

    Hi pennster:

    When TE hit, I took my hair up just below my shoulders and added bangs and more layers. My hair had been past my bra strap and I had long layers. Since I was losing so much hair in those first few months, I decided the best thing to do was to take off 7-8 inches. I've been letting my hair grow long again but in July I had to take it up a few inches again to give it more body. Now my hair is just an inch or two above my bra strap again and I'm getting re growth all over. The thinnest parts for me are the top and sides and even though I'm getting a lot of re growth, I still have a long way to go. Usually on weekends or when I'm out with friends I'll use Toppik on the thin areas around the top and part. I have no idea what I would do without Toppik.

    Usually I blow dry my hair upside down and then use the round brush to give the top layers a little more body and lift. This way I can make my hair look like it used to. If I were to put my hair in a pony tail, I think you'd be able to tell just how thin my hair has gotten. My pony tail now is half of what it used to be.
  17. NYCGirlie

    NYCGirlie New Member

    Blood tests are normal...Scalp Biopsy?

    I have had a full set of blood tests and all is normal. Hormones are all normal. My iron went from a bit low to normal in a short time. My doctor is saying the only thing left to rule out is inflammation but that is very rare and requires a scalp biopsy. Has anyone had a scalp biopsy? How much scalp do they take? Will it self-heal and will hair regrow in that place? Can you was you hair or do you have to wait for it to heal? She mention this biopsy would also confirm whether iots hereditary (I'm not sure if that's seen in the biopsy or if she just meant by process of elimination, heredity is all thats left). I would find it hard to believe that someone with massively thick hair her whole life would suddenly lose 40% in 1.5 years for no detectable reason. Hope someone can help
  18. pilar

    pilar Member

    Hi NYCGirlie:

    When I saw my derm in September and October she didn't think that a biopsy was necessary since TE was just ending and it would take a few months for me to see re growth. I did have a lot of redness and inflammation on my scalp which she treated with a topical steroid and Nizoral 2%. She told me if the inflammation, pain, itching and redness didn't diminish with this treatment...or if I didn't see significant re growth by January/February, then at that time she would want to do a biopsy.

    The area that they remove for the biopsy is really small...but what they remove, will not grow back. My derm also told me that a biopsy can be done to rule out AGA (hereditary hair loss) but didn't think it would be too accurate since TE and TE recovery can by similar to AGA. She was certain that my hair loss was TE because of the sudden onset and the fact that I lost 50% of my hair in 8-9 months.
  19. NYCGirlie

    NYCGirlie New Member

    Pilar; Thanks for the info. I suspected that it would be a small biopsy area but my fear is it will scar or leave a small bald patch where hair wont regrow. My derma said biopsy was the last resort - my bloodwork came up normal so this biopsy would be used to find any inflammation or confirm if its hereditary hair loss. I dont think either are the case but I guess this would make it 100% certain. My scalp looks normal (no scabs, bumps, or redness). My first derma thought it was TE (but didnt know the cause), this derma says all bloodowrk is fine but isnt telling me what I can do since nothing appears "wrong". I am at a total loss of where to turn...another derma specializing in hairloss? I have all my bloodwork so I dont know if that'd be helpful at this point? An endo? My hormone levels are all normal too. A trichologist (I have no idea what that is but have come across that in research). Any other specialists I dont know of? ANy othe rtesting other than bloddwork?? Any suggestions are appreciated!
  20. Kabella

    Kabella New Member

    My hair loss experience

    Hi Ladies,

    I just wanted to comment on my hair loss experience because i think it so important for people to share information because hair loss is such a topic or problem that there is so little information about. And the fact that it is so traumatic for the people who suffer from it. I am 25 years old and I like most of the women on this site had a full head of thick gorgeous hair about 4 years ago, so much hair that i actually took it for granted and used to wish that i had less. Funny how i got what i wanted...not so much. 4 years ago i noticed that my hair was thinning out a bit but i didn't think much of it because at the time i was dying it a lot and i had so much that it actually made it easier to style. Fast forward to 2008 and it had gotten a lot worse, lots of shedding and very thin. I went to the dermatologist and he did a pull test and told me i had TE and that it would go away in 6 mos to 1 year and it was most likely due to stress and he told me to start using Rogaine. I told him i wasn't stressed but he didn't seem to buy it. Fast forward to this year 2010, i had gotten fed up with my hair. It hadn't gotten any better i had been using the Rogaine but i hadn't noticed any noticeable differences. I saw my Gynecologist for the second time about this problem and was crying in her office and she suggested that get blood work done again. I had also brought up to her more than once that i thought maybe it was my birth control and she more or less dismissed it. I had been taking Yasmin for 4-5 years and it was the only thing that made sense logically in my head. After seeing her i stopped taking Yasmin and made an appointment with another dermatologist. This dermatologist said i needed a scalp biopsy. When i got the biopsy i had been completely off the the pill for 2-3 months. I got the results the other day and while the biopsy said i have TE it also said i am in the regrowth/recovery stage. She said that this is good news and that it was most likely the birth control. I wanted to share my story because as women are bodies are easily altered by hormones like mine was. Not to say that everyone is the same but one other person who took yasmin or another bc could have the same issue and it took me 4 plus years to figure my issue out or at least i hope it is resolved.