Hope for women with TE

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

  1. NYCGirlie

    NYCGirlie New Member

    **Did the biopsy leave a scar? Does hair regrow in that area? Im fearful of scarring or further hairloss! I wish there was another way w/o cutting. My derma said this was a last option since all my bloodwork came up normal- it would help determine if there's an inflammation, TE or hereditary. Right now I have no clue why its happening but its been since last spring...only thing I can think of is stopping bcp or iron but all testings is normal
  2. Kabella

    Kabella New Member

    There is still a mark from where the biopsy was done but its not very noticeable. If I part my hair slightly different then you can't really see it and it looks like a red scab more than anything like i was scratched. To be honest i didn't even think twice about it when she asked if i wanted it done because i was so set on finding an answer to my problem. My doctor said it would confirm if i have TE or female pattern hair loss. It did confirm i have TE but since i had stopped the BC a month or two before the test it showed i was in the regrowth/recovery stage. As for the hair loss that comes from stopping BC, i don't think that in my case it was any worse than what i had already gone through previously. Yes, i did shed hair due to the stopping of the BC but in the end i found out that it was because of the BC so in my case it was worth giving it up and had i not done it i wouldn't have come to that conclusion. Its a hard decision to make but i had to figure out what the underlying cause was and the only way to do that was to eliminate some of the things i was putting in my body. It was more or less a science experiment and the BC was one of the variables that had to be taken away. I tried everything else leading up to taking away the BC and nothing else worked so that was the last option and it looks like it worked. I wouldn't worry so much about the scar though, its a very small incision and i mostly wear my hair back so it makes it very hard to see. You only need one or two stitches max i think.
  3. kjm416

    kjm416 New Member

    I had a biopsy done on my scalp about 3 months ago, right before my TE was about to end. It wasn't painful as much as it was bloody in my case (don't think the doc was too experienced) but otherwise it was fine and didn't really leave any noticeable mark.

    Just an update for you ladies that I have been writing back and forth with about my scalp and hair shed-- over the past few weeks as you know I was experiencing an extremely itchy, greasy, and tingling/painful scalp. It really started up when my TE recovery started about 2 months ago. Now it is basically gone and I only ever get a few itches on my head I think from dandruff or dry scalp which I've always had (so having a greasy scalp was very weird for me since I never ever had one before TE). The hair shed was at about 30 a day, then for a month was up to about 60-90, and now is back down to about 40-50. I still lose some of my small baby hairs but not as many as I was. I think this means the hair follicles are ready to keep the new hairs they have now! Fingers crossed. My re-growth is really really slow though so I am still just waiting on it to fill in. I see some small fine hairs along my hairline but it's hard to see it anywhere else (I did the parting trick but couldn't see anything). I'm trying to up my protein intake and keep up with my healthy diet/vitamins in hopes this will promote the re-growth too. I know that days I lose closer to 100 hairs I get anxious but I just have to remind myself it's better than the 350+ hairs I used to lose! I'd love to hear how everyone else is doing.
    Happy new year!
  4. jbarks

    jbarks New Member

    Hello, everyone,

    I have been reading this forum for the past several weeks, and I finally decided to write a post about my current hair loss. I noticed my hair loss toward the end of October / beginning of November 2010. It could have started before this time, and I'm pretty sure it did. However, I didn't notice until November that my hair looked thinner. I've always had fine hair; I've also always kept it short-- usually in a chin-length bob. However, I've never minded, and I've always been able to pull off shorter hair. Since my hair is already fine, even the slightest bit of hair loss feels traumatic. At first I ignored it, thinking that after a few weeks it would go away. But the hair loss continued-- in the shower, when I blew my hair dry, when I scratched my head. I also didn't tell anyone; I felt embarrassed that my hair was falling out. Hair loss doesn't happen to a 23 year-old! Finally, I told my mother and set up an appointment to see a dermatologist and get blood work done.
    The blood work revealed a ferritin level of 20, and that was after I'd started taking iron supplements three weeks prior. In a span of two weeks, I've been to two dermatologists, two hematologists, and quite possibly the best endocrinologist in NYC. I'm starting to get partial answers. I've definitely been diagnosed with iron deficiency anemia; I may also have pernicious anemia. I'm also waiting on the results from my hormone tests. In all likelihood it appears that I have TE related to anemia(s), but I don't yet know for sure. My shedding kept steady; I don't think it has worsened, but it definitely hasn't subsided any. My hair loss is worse on the back of my head at the crown. I started using XFusion a few days ago, but it is becoming harder and harder to cover. I think about it constantly. Of course, I think the hair loss is much worse than it actually is. When I went home for the holidays, my family and former hair dresser said that they couldn't even tell. But I use a lot of hair spray and take extra time in the morning to make sure everything lays perfectly. I know the anxiety and stress is not helping, but I'm terrified that it's never going to get better. My mother keeps telling me that once I get my levels back to normal, everything will be fine. However, I'm afraid that it won't. I'm afraid that even if the excessive shedding stops, my hair will never grow back. I've read several accounts in which women state that their hair never returned to normal. I'm considering a temporary (or maybe even permanent) fix--like integration or fillers, but I know it's a big time and monetary commitment, and I really don't want to wear fake hair for the rest of my life.
    I suppose I'm just wondering about everyone's experiences with TE-- shedding, regrowth, etc. Does it get better? Will my hair return to its normal state, or will it be thin forever?

    Thanks!!!
  5. olga

    olga New Member

    No answers for TE

    :( I was reading a lot of the posts about women going through TE. It's very frustrating to hear the same thing from all doctors even when you look it up on line, the same thing is told. It will probably end on it's own you can try rogaine if you like, it will probably grew back in, you may not get all your hair back, (and my favorite) be patient, and don't stress out over it. I don't understand why no one studies this. With AA it is also a sudden onset with a vast array if triggers, it can get better on its own as well, yet it is studied and there are some treatments for it. I believe that TE is exactly the same. With the exeption of TE after pregnancy, it is very similar. For the lucky ones it can last three to six months. Even though six months seems like an eternaty it's better than a year or more, and that is where a lot of women are. This primarily happens to women. I'm glad that some here are having positive outcomes. I still believe that it should be studied. Like why is it associated with scalp pain and burning. Why is there a white bulb at the end of some of the hairs. I have red bumps on my scalp. Has anyone else experienced this? I have been to derm had the blood work done but it looks pretty normal. I just wish some doctor or researcher would be motivated to get answers to these questions. Maybe someone should start a TE/CT foundation like AA and get someone, anyone to show some interest. Maybe all sufferers should sue all the manufacturers of BCP that don't warn unsuspecting women what they are getting thamselves into, and use the money for research.
  6. pennster

    pennster New Member

    Ladies, happy new year to you all!

    Pilar, thanks for your response regarding hair tips. I appreciate your positive attitude and how quickly you always lend support when one of us has a question. You have helped me tremdendously, thank you!

    JBarks, welcome to the thread, and although I don't have answers for you yet, I can relate to you completely. Our TE "discovery" timelines are almost identical (I noticed mine in late September), and I also got hit hard on my crown/slightly below as well. I struggle with that because I feel like it's always visible to others, and I can't see how bad is (but I can feel the thinness when washing or when I run my hand over it, and it drivers me crazy!). I also saw two dermatologists, and they independently concurred that I have TE. But, it's frustrating, I know, to deal with the uncertainly that goes along with it. I'm getting some regrowth along my hairline and part, but I'm trying to take a break from looking at it all of the time. Are you having any scalp discomort with your TE?

    Olga, totally agree with many of your points. So many of us are trying to deal with TE, yet research on it is sparse (and spent a lot of time looking!). Hope this changes in the future!
  7. jbarks

    jbarks New Member

    Pennster, Yes, it is super frustrating. I know I think it's much worse than it is in reality. All of my friends from work keep telling me that I have a full head of hair. I've been to two separate derms as well, and similar to you, they both stated it's TE. I haven't really experienced any scalp discomfort. When I first went to the derm about three weeks ago, he said that my scalp looked a little red and irritated; he gave me some shampoo, and when I went back yesterday, he said that my scalped looked pretty normal. However, I haven't had any problems with it. My scalp is a little dry, but I think that's due to the weather.

    Has anyone told you what triggered your TE? I'm actually making an appointment with Dov at Dov Salon to get a topper. I think I would feel so much better about my hair with a topper...at least until the hair starts to grow back.
  8. pennster

    pennster New Member

    Hi JBarks:
    My TE was triggered by a prolonged period of severe stress, mostly related to work. This is different type of stress that is typcially associated with work - i can't get into specifics without identifying my company because unfortunately, it's been covered in the news & media. :(. Around the same time this all culminated, my husband had a health scare, and another personal event occurred. I didn't take care of myself or exercise when all of this was going on. Eating habits were atrocious. Ugh. While I want to believe this is TE, and it makes sense given the events of the year, I just continue to having a nagging feeling that this is not reversible. I have had some past medical issues (related to hormones although not PCOS) that I'm re-investigating, although all of my hormone panels are smack dab right in the normal range. There is regrowth happening, confirmed by derm on Friday, but it seems minimal compared to the hair that I've lost. I am just focusing on trying to take care of myself and putting the pieces of the puzzle together. There are many wonderful women on these boards that have been so helpful. I am glad to hear that you seem to have found the source of your TE and that you're not experiencing any discomfort from the TE. Keep us posted on how you're doing! :)
  9. kjm416

    kjm416 New Member

    I have a more general hair loss question for any of you that know more about repeated hair loss and TE. I suffered TE about two years ago due to weight loss and am once again recovering from a TE bout due to weight loss from this past year (and I have absolutely no family history of hair loss on either sides of the family). I've learned to control my diet and not let it happen again! But, my concerns are not just that TE may start from weight loss but from other things. Are some people more prone to TE/hair loss than others? Like if I do go off of birth control, or after I have a baby, or go through menopause all later down the road I am worried I will get TE again! Does anyone know if some people are more prone to it or not and from various triggers? I just don't want to put myself through the mental issues with TE all over again so I would want to be precautionary before any BC switches or anything. Just wondering, I'd love to hear your thoughts... Happy hair thoughts still going out for every one of you ladies!
  10. pennster

    pennster New Member

    Hi KJM - your question is an excellent one and one I wish I could answer as I share your concerns. I hope that you are doing well in your recovery! :)
  11. kjm416

    kjm416 New Member

    Thank you Pennster!!
    My TE recovery is going great still. Losing about 15-30 hairs a day and not all at once. No longer have oily/itchy scalp and have also lost the anxiety about my hair issues. I think I can safely say I am out of the worst and won't be headed back there anytime soon if I can prevent it. What about you? How has your hair journey been lately? I would love to hear and hope it is all good! I am headed to my dermatologist on Thursday so hopefully I can get an answer for my question and I'll be sure to post it!
  12. pennster

    pennster New Member

    Hi KJM -
    I am so glad to hear that your recovery is going so well, that's awesome!!:)
    I would be very interested in your derm's response to your question. Your recovery story along with those of the other ladies on this thread is helping me along.

    I am in a bit of a crossroads right now. Sometimes I feel encouraged, but other times i feel like this is continuing to get worse. I don't think my shedding has necessarily stabilized. For awhile, it seemed like 40-60 a day, so I stopped counting daily. Yesterday, I noticed more in the shower, so I counted and was closer to 100. Today, about 80. I don't tend to lose much in the shower (usually 10 to 15), which I always have. Most falls out when I blow-dry and style my hair. I have little sprouts coming up on my hairline and part. I can usually find some when I part my hair in different places. Like you, sometimes the little guys fall out, which I try not to stress about too much. I don't know what to think, I just try to take a breath and get through the day. Every part on my head has been hit pretty bad. I remember you saying that your crown was affected by the TE - are you finding that it's starting to fill in? Are you still taking all of your supplements? On a positive note, the tingling/burning only happens occasionally now(was non stop for awhile), still having challenges with the itchiness. My derm gave me Nizoral, but it's drying out my hair really badly.

    Please keep us posted on how you are doing! Take care!

    To the rest of the ladies on the thread, hope you all are doing well!
  13. kjm416

    kjm416 New Member

    Hi Pennster!

    I'm sorry that your recovery is not going as well as you'd like, but remember a few things. All of the numbers you mention: 40, 60,80,100 are still GREAT in terms of daily hair shed! It may be more than you'd like to lose but that is still technically within a normal and healthy range. It can be scary because as I'm sure you read, I went through fluctuations with my recovery too. I went from losing about 30 hairs for a week or two then to all of a sudden back closer to 100 and then down to 50 over weeks. It was very stressful as my mood very much depended (and still does) on the amount of hair I lost. What I learned from my derm is that these fluctuations actually are a good sign!! For some people, recovery is spontaneous (my first experience with TE it literally was) but for most it is over a period of time (like what I've had this time). The fact that your hair loss is having more days of less hair shed more and more often shows that the TE is in the process of ending. I wish it was the case that it would only progressively get better during recovery without any steps back but it isn't. But chin up, these phases of 40-50 hairs for you should be encouraging! Those phases for me are literally what kept me sane and my hopes up.

    That is good that your scalp health is better too! One of the key components in hair staying put is that the scalp is healthy and not inflamed or clogged. I definitely think that when I had issues with my scalp it contributed to hair shed that wasn't originally from the TE. Also remember that the little sprouts are signs that your hair follicles are back to wanting and able to grow hair even if some shed. Some little ones of mine still do to this day but I was told it can take about 2-3 months for the follicle to keep a healthy hair in it. That was exactly whats happened for the majority of my new hairs!

    I still take my supplements everyday. I take a multi-vitamin, biotin, iron, and calcium. After having my vitamin levels tested from my dermatologist, he said that regardless of the TE I should make sure to these supplements (I didn't take anything before) since my diet showed deficiencies in some of them.

    Yes, my crown is filling in slowly but surely. The hairline was the first place I saw sprouts and then in the crown. the areas above my ears are still the least filled in but I'm assured by the other growth it is soon to come. You probably have a lot more re-growth than you realize. For the longest time I thought my only re-growth was at my hairline and then all of a sudden after blow drying my hair upside down one day I saw all of these 2 inch hairs sticking straight up on my pair and around it. They couldn't have just popped up overnight so they definitely had been growing for a while but I hadn't styled in a way that I'd notice them. It's amazing how much the 1-2 inch hairs on the head seem to help in creating the illusion of volume.

    I also find it helpful to blow out my hair and use a root volumizer as I'm drying it. The volume from the roots seems to make a world of a difference as to how thick my hair is. After I sleep on it for a day or two you can really tell its thinner, but when I first style it I'm pleased with how I can make it look. It really helps my insecurities and self-confidence to be able to go out for certain events and feel like my hair has some body and isn't horrible. Funny thing too, the more this has gone on the more I pay attention to other women's hair (as I'm sure all of us women here do) and I realize how thin or sparse many of my friend's heads of hair are without hair loss. Remember that we exaggerate the differences in our hair loss to ourselves but many others may barely notice or not notice at all. I promise!
  14. pilar

    pilar Member

    Hi Pennster!

    Kjm is absolutely right! Those fluctuations you're experiencing are part of recovery and absolutely normal. With time, you'll notice that those higher numbers will be further and further apart. I started noticing a decrease in shedding back in September/October 2010, but every once in a while I was getting numbers over 100. I have a calendar where I write down what I lose each day (I know this is horrible but I can't stop counting! LOL) and in September I was having days where I lost over 100 at least once or twice a week. By November it only happened twice, December it happened once and so far this month it hasn't happened at all! :) I remember when I would experience those fluctuations, it would end up ruining my day. I would get so sad and feel like it was never going to stop. But please know that eventually it does slow down.

    This month I have been losing between 30-70 hairs a day and I'm really happy with those numbers. I don't remember what I shed before TE, but 30-70 seems pretty normal. My scalp is still a little oilier than what I remember, but I think it might appear oilier since I have a lot less hair than I did before TE. I'm also noticing a lot more re growth all over my scalp but I still have a long way to go. I'm still noticing that I'm losing some of the new growth, but I'm not seeing as many as I was a few months back. Now I rarely see them.

    Hope everyone is doing well!!!!! HUGS!

    Pilar
  15. pennster

    pennster New Member

    Hi ladies! Thanks so much for your responses and wonderful encouragement! I am feeling a little better today with a shed of 40 to 50 hairs. I think as long as I see improvement in the shed trends and continued improvement in my scalp discomfort, I will be ok. I still get a little tingling from time to time, but for a few weeks in late November into December it was almost constant and actually very painful, so this is a big step for the better. My bigger challenge now is the itchiness. This might be due to the cold - I live in Philly, and it's been very hold here with furnace on full blast at all times. I have a little bit of flakiness, but it's not too bad. Pilar, I remember you telling me that you used Topik. I am self conscious about my crown and some of my part line, so wanted to use some while waiting for more (hopeful) regrowth. Did you find it at all irritating to your scalp? KJM, I am glad to hear that your crown is filling in too!:)
    It seems very stubborn to me, so I am hoping to see more activity there soon!
    I have an endo appointment next week just to have a chat about my hormone levels. I don't go back to my derm until April for a follow up unless things take a sudden turn for the worse. My other debate right now is whether to cut in some bangs since my front hair line isn't looking awesome right now. I am leaning in that direction. Thank you again, I am so glad to hear that your recoveries are going so well,it gives me hope :)
  16. kathie47

    kathie47 New Member

    What a great success story! I'm so glad you shared it with us!
  17. pilar

    pilar Member

    Hi pennster:

    Yes, I've been using Toppik since last summer and in these last few weeks, I seem to be using it less and less. :) It has never irritated my scalp and I find it to be an excellent product. I apply it along my part and then run a q-tip along the part to make it look more natural. In the beginning I would just apply it along my part and you wouldn't see any scalp at all (which didn't look normal). The reason I started running the q-tip along my part to remove some of the Toppik is because one day I was under super bright lights and when I looked in the mirror, you could clearly see there was something sittting on my scalp. So from that point on I started doing the q-tip thing. So even though it's not perfect, it's been a life saver for me. In pictures (even with a bright flash) you can't tell you're using Toppik at all...so that was a plus! Last summer I bought the smallest size (travel size) and I'm still using the same one. I got a new little travel size just in case I ran out of the other, but still haven't opened it. I think the little size goes for $6.50 and even though they over charged for shipping, it should last you a while. I would definitely give it a try!

    Pilar
  18. pennster

    pennster New Member

    Pilar, thanks! I will give it a try and let you know how it goes.

    Everyone, enjoy your weekend!
  19. pennster

    pennster New Member

    Pilar, I tried out the Toppik, and I think it will help tremendously. I tried your suggestion of running the Q-tip along the part, and that blended it in quite a bit. Thanks!

    Ladies, you're all in my thoughts! Please let us know how you're coming along.
  20. pilar

    pilar Member

    Hi Pennster!

    I'm so happy that it works for you! Sometimes I don't know what I would do without it. And yes, running the Q-tip along the part makes it bland better and look more natural.

    I'm still losing between 30-60 a day and even though my scalp still gets oily, my scalp feels good. I seem to have more re growth coming in but I still have thin spots and my overall thickness still doesn't feel as full as it did pre-TE. It's been almost 15 months since TE hit and for the last 3-4 months I've been shedding normal amounts. I wonder how long it will take for my hair to go back to normal? Soon I hope!!!!

    Big hugs to all of you wonderful ladies!!!!!

    Pilar