Hope for women with TE

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

  1. kjm416

    kjm416 New Member

    First let me say how much support I felt from this thread throughout my battles with TE and hair loss. It's such a difficult thing to deal with, as you all know, but hearing the stories and questions of other women going through the same thing as myself gave me strength knowing I wasn't alone.
    I promised myself after all the days I wanted to post about my hair shed, that when I did recover I would write it on here. I read so many heart-wrenching stories on here but not enough of the recovery ones that can give women like us hope! I have been considering posting on here for a few weeks, but I guess I was too scared that my decline in shedding was just temporary and life was playing a cruel joke on me...but now I can safely say I think I've won this battle (for now).

    I have had TE shedding for the past 6 months. I lost about 60% of my hair and thickness. While I have become good at covering up the thin spots, I still miss the volume I once had. Like many of other women I've read on here- hair loss turned my life upside down. I became highly anxious, I feared showering and brushing my hair, I woke up early just to take out my ponytail so that I could get the worst shedding over with- then quickly put it back up so I wouldn't have to feel the hair fall for the rest of the day. I had a horribly itchy and scalp that was visible to others who looked close enough. I stopped wanting to go out with my friends so I wouldn't have to style it and have pictures taken constantly fearing that the dreaded day would come when someone asked me what was going on with my hair. It consumed my every thought and action for majority of the past year.

    Luckily, I had the strength and support of my boyfriend and family who helped me through it (yet none of my friends knew since I was too embarrassed to tell them). After 2 horribly rude and unhelpful dermatologists, I finally found a great one. We never were able to find a specific trigger for the TE besides a possible hormone imbalance from missing periods last spring and running more (I lost my period for 2 months). So I knew it was just a matter of a waiting game. At my worst, I shed about 350-400 hairs a day, on average I would lose about 200 most days, and has decreased ever since. I started taking 5,000mcg of Biotin daily, pre-natal vitamins, and iron supplements (since my levels tested relatively low). I ate super healthy but rounded out meals with enough calories and protein to meet my needs. Slowly but surely, it is working.

    Now I currently lose about 30-40 hairs (which is considered "normal" yet it still hurts me since my hair has thinned so much). But looking back to where I was physically (with hair shed) and emotionally (my anxiety about it) I have come so far and that gives me hope for my re-growth. After reading other women's stories about experiencing shedding for years on end with no stop or hair shed from more serious medical issues, I feel extremely grateful that mine does not seem that serious. I continue to pray every day for every woman affected by alopecia and their struggles throughout it, just knowing how bad mine was with 6 months of TE.

    I still hate shedding my hair, fear the shower and pictures, and constantly worry that TE will come back for a third time in my life. But at least I know that I can get through it, I have the strength from these past two times. There isn't much re-growth yet that I can see, but I am just so thankful to be losing "normal" amounts it'll hold me over until the re-growth happens.

    I also finally opened up to a few of my friends about what I was going through, and well I kind of lost it emotionally haha. They looked at me like "what are you talking about?" They noticed I wore my hair up more than ever and that somedays my hair looked dirtier (Since I didn't wash as much as I should've) but never ever thought that I was losing it. My fears this whole time were that everyone knew and no one would say anything but that wasn't the case at all. They say only now that I point it out, they can tell a difference in the volume, but with good styling and techniques any stranger wouldn't notice. I wanted to share this because I honestly feel this is probably the case for many of you. I know we feel and ARE losing a lot of hair so we notice every single hair that comes out...but not everyone else does. Cut yourselves some slack, look in the mirror and tell yourself you are a beautiful strong women who can get through anything (even if it is day-by-day as I forced myself to do). Another thing that really helped me since I felt so down about my image was making myself feel good in every other way besides my hair- I wore clothes that made me feel good, took time to put make-up one, worked out and kept active. It was hard to make myself do it somedays but the days I did and got compliments from others it was just the thing I needed to get through another day!

    I hope my success has given hope to someone else out there that TE will end eventually even if it feels like it never will, and that when doctors say "you will not go bald"- except for extreme cases, you really won't. You may have super thin hair but you will have it and boy am I thankful for every hair on my head now! I will never take hair for granted again nor will I ever complain about a "bad hair day" :)
  2. chattycathy

    chattycathy New Member

    Wow your story has really inspired me. My hair is really thin. I've been taking iron for six weeks as my doctor thinks my thin hair is due to low ferritin. It has gone from 17 to 22. I am really self conscious about how thin it looks and I spend a lot of money using products to disguise it. I've been a vegetarian for twenty years and not eaten enough protein so I am addressing that too. I have found that when I tell people at work they have no understanding of how self conscious it makes you feel and they dont really seem to care so I think you are right that they probably dont notice it as much as we think they do. I am keeping positive and not letting my hair loss make me too upset. I think by being open and having a positive outlook helps.
  3. pilar

    pilar Member

    Hi kjm416:

    Your story has some similarities to mine.

    I took the pill for only 2 months and 2 months AFTER stopping, my hair was falling out in ropes! In the beginning I was losing over 350 hairs per day (I counted every single hair). My TE lasted for 9-10 months and I've lost around 50% of my hair. It's very thin and it takes a lot of work to make it look decent.

    Everything you describe in you post is EXACTLY how I felt and what I thought. But here we are and the shedding has FINALLY gone back to normal. I usually lose between 30-70 hairs a day (which is considered "normal"), but like you said - it still hurts so much considering how how thin our hair is now. I remember when all of this began all I wanted more than anything was for the crazy shedding to stop...and it did. I started seeing re growth 3 months in the shedding, but I've also lost some of that new growth. My derm told me that it's normal for us to lose some of the new hairs since our follicles are still trying to get back into the normal cycle of things. Sometimes it takes a few runs for those little guys to get it right.

    Well here I am almost a year after TE began, shedding normal amounts and getting lots of re growth (even though sometimes it doesn't seem enough compared to what I've lost). I know it will take some time to get back all the hair I lost, but I'm hanging in there!

    You also said - "I had a horribly itchy and scalp that was visible to others who looked close enough." You scalp was itchy and something else? Is your scalp still itching or has that gone away?

    Thank you for posting this - it will definitely give others hope!

    Hugs,

    Pilar
  4. meggie

    meggie New Member

    Yes, there is hope!

    I've had TE for approximately 15 months after going off estrogen and starting generic Synthroid for thyroid nodules. I am now back on the estrogen and after 7 months, stopped the generic Synthroid. Stress had taken over by then because of the horrible hair loss, and that fed the TE and the hair kept falling out. I have gone through the exact same things that you ladies have gone through---counting hairs, stressing over it constantly, worrying about going bald, etc. I then started on Fergon (an iron supplement (my ferritin was 20 and is now 70), take hair, skin & nail vitamins, biotin, omega 3, vitamin D3, vitamin C. I also make sure I get enough protein (which I wasn't getting before). I also drink lots of water and practice relaxation techniques for stress. I am happy to say that I have new growth and the itching has slowed down. I'm only losing about 50 - 60 hairs a day (as far as I can tell) and I also use the new Loreal shampoo without sulfites. I hope this gives those of you with TE some hope. It takes work and time, but eventually the hair comes back. Good luck and God Bless.
  5. pilar

    pilar Member

    Hi Meggie:

    How long has your shedding been normal? I've been shedding around 30-70 per day for the last month or so. I'm also seeing a lot of re growth.

    Where are you experiencing an itchiness on your scalp? How much hair do you think you've lost in the 15 months of TE?

    Pilar
  6. meggie

    meggie New Member

    Hi Pilar,

    My shedding has been normal for about a month as far as I can tell. I still have some shedding (I can feel the hair coming out) but it's only a few hairs at a time instead of 60-70 at one time. I still have some itchiness but nothing like the prickling/itching feeling I had during the last year of TE. I've lost approx. 60% of my hair due to the TE in the past year. A doctor friend of mine said that it takes your body (including your hair follicles) quite a while to get back to normal, especially after going through the stress, etc. I think that trying to control my stress, eating more protein, taking supplements and just trying to get healthy again is really helping with the regrowth. I have never experienced anything like this in my life before and hopefully I will never experience it again. Good luck with your regrowth. Keep me informed of how you are doing.

    God Bless
    Meggie
  7. pilar

    pilar Member

    For those of you in TE recovery - do you feel like certain areas of your scalp and thinner than others?

    My shedding has been pretty diffuse, but it seems a little thinner on the sides (above my ears) and the the top.
  8. meggie

    meggie New Member

    Yes, Pilar, I've lost a lot of hair on top of my head and also on the sides (as you noted, "above the ears"). There is new growth on the top of my head but as of yet, none on the sides. Hoping in time this will fill in also.
  9. pilar

    pilar Member

    Hi Meggie,

    I also seem to see more re growth on the top than the sides.

    Have you noticed that you've lost some of the re growth? I still count all the hairs I lose and sometimes I still find shorter hairs. My derm told me this is normal, but it still worries me.

    Pilar
  10. kjm416

    kjm416 New Member

    Pilar-

    I do still have some tingling/itching but not as much as during the worst of the TE. But within the past couple of days, I have been experiencing some scalp pain- not severe but it seems very sensitive and almost burning at times. For some reason at night it is always worse (or at least in my head it feels that way) Have you experienced any of this? Do you know if it is permanent? I have a fear of any scalp issue causing TE to get bad again.

    Also, even though I have been in recovery for about a little over a month, I am still super anxious about losing my hair. As said before, I used to lose about 250 hairs on average but now only the "normal" amount. For first 3-4 weeks of recovery I often just lost about 20 hairs a day at most. This made me so excited! Now I'm just losing my hope because I'm losing more like 50 hairs a day. I know this is "normal" but it just worries me since my hair is so thin already! I'm so used to obsessing about the hair loss that I think in my mind I still consider myself having TE since I lose hair daily. I wish I knew how much I lost before all of this but I guess you don't really pay attention to it when it doesn't matter to you. Do healthy-haired women really lose 50-100 daily? That just sounds so high to me!

    I was told that TE recovery depends on the rate of which you are growing your hair being faster than the rate you are losing it. I see small about 1/2-inch hairs at my hair line of my forehead but can't really see it in the rest of my scalp. If I can see it at my hairline does that mean it is like that throughout other areas of my scalp or just at the hairline? I really hope just the small re-growth takes off because even that will add volume to my flat hair. How is your re-growth looking? Do you ever lose baby hairs? I do, especially around my face and above my ears. My derm says this is normal but it worries me that the follicle will never hold a hair longer than that again!

    I would love to hear how your recovery is going and hope everything is looking up for you!
  11. pilar

    pilar Member

    Hi kjm:

    A month ago I also had some burning and pain, but mine was caused by overusing medicated shampoos and then dyeing my hair - all in a 3 day period. I saw my Derm and she prescribed a steroid to get rid of the inflammation, pain and burning sensation. By the 3rd day it was all gone. Have you noticed any inflammation on your scalp? My Derm told me that during TE and even TE recovery, our scalps are a lot more sensitive, even to products we used before. I wonder if it's something that you're using is causing the pain and burning.

    I also don't remember how much I lost before all of this happened. But I do remember being a big shedder and finding hairs all over my apartment. It was never something that paid too much attention to, since I always maintained a full, thick, head of hair. I'm also losing "normal" amounts (30-70 hairs per day) but it's still a little stressful seeing those few hairs fall out when I've already lost so much hair. I do see a lot of re growth, but it just seems like it's going to be such a long catch up game.

    Healthy women DO lose up to 100 hairs a day and some even more! During the crazy months of TE, I became so paranoid that I asked my mom and best friend to count their hairs for 3 days. My mom lost an average of 80-120 per day and she has the fullest hair imaginable. My best friend lost an average of 50-75 per day and even though her strands are thin, she has a lot of it. It's funny because when I asked them how much they thought they shed, they both said a lower number and BOTH (mostly my best friend) were shocked to see how much hair they actually lost after counting. So I think if you're not losing TONS or experiencing thinning, then you really don't pay attention to how much you do lose.

    The first place I started seeing re growth was my hair line and along my part. The ones all over my scalp are hard to see when they're shorter, but once they reach 2 inches or longer, then they're easy to see. What I do, is part my hair in different areas and in different directions...then I brush my hand against the hair and all the short new hairs will stick straight up.

    I also lose a lot of the short hairs. My Derm said this is completely normal since those follicles are recovering from a major shock, sometimes it takes them a few runs to get it right. But she also mentioned that this is even normal in people that aren't going through TE.

    Another thing my Derm keeps telling me is that after TE, sometimes the follicles take a little longer to wake up and start producing hairs. Normally they stay dormant for 2-3 months, but after TE it can take them a little longer to start producing hairs. I think it's a great sign that you'e starting to see re growth along your hairline and I'm almost sure that you have more little guys growing all over your scalp but they're just hard to see.
  12. kjm416

    kjm416 New Member

    Pilar-

    Thank you SO much for responding to my post. Everything you said sounds so similar to what I'm going through and really gives me hope during this recovery. I appreciate you taking the time to write back, the support on this website has been amazing.

    I am not using any medicated shampoos but I do think you are right about our scalps being more sensitive than before. I too, was a big shedder anyways before TE started so I would guess that the number I lose now would have been normal for me then. You are right that this is a catch up game but hey-- at least we are on the up and can see a light at the end of the tunnel.

    Thanks again :)
  13. meggie

    meggie New Member

    Hi kjm,

    I just wanted you to know that I started with new regrowth around the hairline first. Part your hair with a comb across the top of your head and flatten the hair away from the part and this will tell you if you are getting new hairs (they will stick up in the part). It takes time but it WILL grow back. I still get a little tingling and itching but it isn't very often. It feels so good to have my hair/scalp getting back to normal. I don't get stressed with showering or washing my hair anymore. I can also use hairspray again (which I couldn't use for a long time along with other hair products because of the burning and itching). Trust me, it will be better. Just make sure you are getting enough protein, as this is what hair is made up of and needs to grow. I eat a 6-egg white omelet mixed with spinach, veggies, and anything else I have on hand every morning. I also drink a whey protein mix once a day with milk. I truly believe this has helped the most, along with the vitamins and supplements I mentioned earlier. Keep the faith and hopefully you will have a turnaround in the New Year!
  14. kjm416

    kjm416 New Member

    Hi pilar and meggie,

    My only concern now is am I really going through recovery like I thought or do you think the TE is starting again? For that first month I lost like maybe 30 hairs a day and now its more like 40-60 probably closer to 60. Since there was a time where it severely declined and now is up to 60 again do you think it is a sign that it is another run of TE? It hasn't been worse than that but I have such high anxiety that if I keep shedding at this pace with minimal regrowth it might as well look like TE again.

    I also want to do one of the hairwashes that I used to do. They are the basic drug-store kind, overall color, and semi-permenant. I have rather light blond hair but like it to be more of a medium-blonde color. Do you think it will make the hairshed worse? I don't want to do anything to hault this recovery (if that's what it is!)

    I know recovery takes time and I know that I just need to be patient. It's just super hard to be some days. I used to lose hundreds of hairs a day but I almost think it was easier to do that when I was so used to it than almost having my shedding stop and now starting up some again. It's like that relief was ripped away. I know its only 60ish hairs a day, but it just feels like so darned much!

    Also, the itching and tingling isn't as bad this past week. I hope that's a good sign! The only thing is now my dandruff is increased like crazy...did that happen to either of you? Prior to TE I never ever had dandruff or oily hair and now I seem to be going from one extreme to the other every other week!

    I hope both of you are having a good holiday season and am encouraged by your tales of recovery. Thank you for continuing to post on here and offer support and stories with the rest of us!
  15. Little Star

    Little Star New Member

    kjm,

    We are going through the EXACT SAME THING. My TE ended about a month and a half ago and within the last two weeks my scalp has become SO tender. When I comb the ends of my hair certain areas on the top of my scalp will hurt momentarily. Other times my scalp feels ok. I was also experiencing a burning sensation which I realized was from anxiety. I took anti-anxiety meds and that sensation (thankfully) stopped. But my scalp (mostly on the top, along my part and in my crown) is still very sensitive.

    I have been to two dermatologists and both have reassured me that my scalp is healthy, they don't see inflammation and that my hair is growing back. But I still worry because my scalp is so sensitive, and I get freaked out that my hair is going to fall out again or that something more serious is going on.

    I have heard from many with TE that they have experienced "strange" or "painful" scalp sensations during and after TE so maybe it just comes with the territory?

    I also want to reassure you that losing the baby hairs is normal. I blow dry my hair upside down, and I usually collect 10-15 baby hairs in the sink. I had a ton of baby hairs growing in at my front partline about a month ago and at least half of them have fallen out. =( But it's actually a sign that the hair follicles are preparing to grow a healthy hair so don't be discouraged. It's a part of the process.

    I think we're going to be ok, but if you ever need to talk I would be happy to exchange email addresses. Pilar and I email each other on a daily basis and she has been wonderfully supportive and informative.
  16. Little Star

    Little Star New Member

    PS: The next time you visit your dermatologist, ask him/her if they see "buds". This is new hair growth that is so short it would not be visible to you but would be to the derm. This is a sure sign of TE recovery.
  17. kjm416

    kjm416 New Member

    Little Star,

    Thank you for writing on here as well. Our stories do sound so similar! I think I posted a message to your page (but I'm not too good at navigating on here) about exchanging emails. I have so many similar symptoms and I bet our stories are much alike! I'm keeping my fingers crossed for all of us...

    I also decided I'm not going to worry myself about it tonight. I can worry about it tomorrow (which I know I will) so I'm taking a night off! Popping my favorite movie in, curling up in bed and not letting myself stress tonight. I hope you do the same!
  18. meggie

    meggie New Member

    Hi kjm,

    Yes, I went through the same sensations, etc. as you are. My scalp was SO sensitive that I couldn't use regular shampoo, conditioner, hair spray, etc. I continue to dye my hair though. The shedding has stopped entirely now and I can actually use my favorite shampoos, conditioners, and hair spray. I thank God everyday when I wake up and don't see the shedding and feel the wierd pain/sensations. One of the most important things to do is to keep your stress level under control, even though this seems impossible. I had to stop counting my hairs every day and just had to learn how to relax. Stress releases cortisol, which is bad for the hair. You sound like your TE is getting better. Believe me, it does take time. 60 hairs a day is normal. My doctor told me that 50 to 100 hairs a day is normal. It seemed strange, but after I started taking the Andrew Lessman hair vitamins, and upped my protein, the scalp started to feel better and the new hairs started growing in. Be patient and you will see a big improvement. Take care.
  19. Little Star

    Little Star New Member

    Hi kjm,

    How is your scalp today? Mine felt normal yesterday but today is a bit sore. =/

    I was doing some research, and I found a site for women who have been through chemo. There was a whole section on hair loss, and apparently scalp pain is a common complaint among women growing their hair back in. I also have a friend who went through chemo who said the same thing. He said his scalp was sore for awhile as his hair grew back. So even though no one seems to have any idea why, apparently losing a lot of hair at once and growing a lot of hair in at once can make the scalp sensitive.

    I know on days like today when my scalp feels bad I really need a lot of reassurance that it's normal and only temporary. It does seem strange that the sensations come and go, but the site I mentioned noted the same exact thing.
  20. Little Star

    Little Star New Member

    Meggie,

    When did the pain/sensations start and how long did they last in your case?