Hope for women with TE

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

  1. meggie

    meggie New Member

    Hi Little Star,

    I've had TE for over a year and had the "sensations" for over half of that time. I could feel each hair coming out and my scalp was itchy/sore at the same time. I talked to someone who had lost all of her hair due to a gastric bypass and she said that the thing that had the biggest impact on her hair growing back was increasing protein (whey protein shakes, egg whites, etc.) and hair, skin & nail vitamins. As soon as I started on this regimen, the sensations started to diminish within a few weeks and it's been approx. 2 months with NO scalp sensations and the hair is coming back in. I really think that as we stress more and more with the hair loss, we tend to ignore our diet and that, in turn, gives no needed nutrition to our hair follicules. I wake up each day thankful that (hopefully) the nightmare is over and will never return. I continue to watch my protein intake and take my supplements and try real hard not to stress over the "small stuff". Hope this helps. Believe me, there IS hope! God Bless.
  2. kjm416

    kjm416 New Member

    Meggie-
    I am so glad that you feel the protein and supplements are helping you. I too, take a Hair Skin and Nails vitamin. Are they mostly the same? I also take biotin and iron daily. Do you take anything else besides the HSN pills? And how much protein do you get daily? I estimate I eat about 50 grams daily. Do you think that is enough? One of my worries is that I will find a regimen that works but as soon as I taper it down (like the protein intake etc) then I will start to lose my hair again. Thanks for the update!

    Little Star-
    My scalp feels okay today- which is surprising because yesterday it was killing me. You are definitely correct that it comes in phases. Phases seems to be how my scalp is always- one day oil, one day itchy and dry, one day it's sensitive, another day its fine! It seriously is jumping from one to the next daily! But it is hopeful that your friend said he had a sensitive scalp during his recovery from hair loss. Anything that signifies I am in recovery (Even on days I emotionally don't feel like it) is awesome. I hope your scalp starts to feel better soon! Have you considered using any oils or soothing creams for the scalp? I've seen some women on here post about them but I am cautious to try anything that my irritate mine more.
    Have a great day!
  3. Little Star

    Little Star New Member

    Hi kjm,

    I did try to put Jojoba oil on my scalp about a month and a half ago (this was also after my TE had ended). I previously used it all the time on my scalp with no issues. I still use it on my face as a makeup remover. But this last time I used it on my scalp, I had a reaction to it! My scalp turned red in patches and I broke out in bumps in a few places too! It went away after a day or two, but that was firm proof my scalp is overly sensitive right now. If I can use it on my face with no problems, why is my scalp different? My derm agreed that after TE the scalp can be very sensitive, and he told me I should take it easy and stick to baby shampoo and a gentle conditioner (only for the ends of hair) until it starts to feel better. He seems positive my scalp will eventually go back to normal, but I worry about it a lot.

    Here is the link to the site about hair loss from chemo: http://www.chemochicks.com/hairloss_faq.htm. If you scroll to the bottom you will see questions "Are there specific things I should do during regrowth?" and "As my hair is growing back it hurts. Is this normal?" The author mentions scalp sensitivity and pain in both answers. Since she put it in her FAQ section, I am going to assume it's a fairly common question she receives.
    Last edited: Dec 9, 2010
  4. meggie

    meggie New Member

    Hi Kjm,

    I took a hair, skin & nail vitamin from Walmart for quite a while and it did nothing. I then was told of the Andrew Lessman vitamins from a co-worker of mine who had severe health problems. Her internist told her to use the Andrew Lessman CoQ10 only because it was pure. I checked the HSN website and saw that there were approx. 800 reviews for the HS&Nail vitamins and they were mostly 4 - 5 stars. Check out what people have said about it. They're a little pricey, but I take two a day and swear by them. My skin doesn't break out, my eyelashes and hair are growing fast, and my nails look better than they have in years. I know I sound like a commercial but I really love these vitamins because after awhile, I really did see the difference. I checked online and according to my weight/height/age, I should be getting approx. 65 grams of protein which I try to do about everyday. I also take prescription Fergon (an iron supplement), vitamin C, D, calcium, and omega 3's. I try to reduce my stress by doing relaxation exercises (check out the website Mindbyte.com). I purchased the six-phase relaxation program and I do one segment everyday. I know it sounds like a lot but after a year of suffering with TE, and doing a lot of research and questions, I found what works for me (mentally and physically). The doctors and dermatologists weren't concerned about my hair loss, even though it was driving me crazy so I had to figure out things on my own. I hope his helps you. I feel like a new person---not a stressed-out woman who was so afraid of going bald, kept counting hairs, and constantly checking out other womens' hair to see if I wasn't the only one suffering with this. By the way, Lessman's vitamins are cheaper on his own website Procaps.com. if you are interested. It cost me some money to do these things but I feel so much better now and I look back at that nightmare and can't believe it's finally over (hopefully for good). I hope this information helps. Take care of yourself----it's truly worth it! God Bless.
  5. Little Star

    Little Star New Member

    Meggie,

    What did your scalp sensations feel like? Did they come and go? Was your hair sensitive when combing, styling, etc?

    My TE was brought on from not eating/losing too much weight too quickly so I had to eat extremely well to make my hair loss stop. My diet has been pretty healthy and full of protein since July so I'm not sure that's the cause of my particular case of scalp pain.
  6. meggie

    meggie New Member

    Hi Little Star,

    They were really wierd sensations. I would get a strong prickling sensation when the hair would fall out and sometimes I would be sitting relaxing and I would feel a lot of what I call "tingling" sensations and between 50 and 60 hairs would fall out all at once. It was frightening. My scalp was very itchy and when I would brush my hair, wash it, or use any kind of shampoo, conditioner, mouse, etc. on it, the scalp would start to burn like crazy. It took quite a while for the scalp pain to stop. Hope yours stops real soon!
  7. Little Star

    Little Star New Member

    Hi meggie,

    I am really sorry you had to go through that. Hair loss is bad enough without all these horrible sensations. I am looking forward to the day when I can comb my hair and put it up in fun styles again.

    I was experiencing a burning sensation, but that has ceased. In general my scalp is just very sore, particularly on top. It doesn't tingle, but it does itch all over sometimes. I can't pull it too tightly and must be very gentle when styling and combing. The soreness started about a month ago, about a month after my doctor confirmed my hair had stopped falling out. I have to assume it's related to the hair coming back in since my doc has confirmed he sees buds of new growth? I hope this doesn't continue the entire time my hair is growing back in but have prepared myself for the possibility of several months of this. :(

    How did you cope with the sensations? Did you use any kind of medications for it?
  8. kjm416

    kjm416 New Member

    Little Star,

    I noticed in your post above that you say your TE was started by losing weight/not eating. The only trigger my derm could think of (or me) was maybe that was my case too. Although, it wasn't severe enough weight loss for most derms or anyone to be concerned. Literally, I just wanted to run because I love it and not for cosmetic reasons, I was happy with my weight. So I started to run more since I used to be on a track team, and to eat more veggies/less junk to help my energy. I maybe lost like 5 pounds at most but did gain muscle and lose percent body fat. After a few months of frustration I decided to stop running as many miles as I was (I would run outside about 8 miles daily- I hate gyms!) for fear of keeping the TE going. Do you continue to work out? How do you feel you can do it without causing the shedding to begin again? I love to run but I'm just so worried that if I start I will lose hair again. Although I wasn't taking a multi-vitamin back then and now I am...do you think if I eat enough protein and take a multi-vitamin my recovery will continue? (which by the way- I've only lost about 20 hairs a day the past week and my scalp hasn't hurt as much!)
    Just wanted to pick your brain on the whole situation. There has to be a way for us to workout and not have TE!

    Let me know your thoughts :)
  9. Little Star

    Little Star New Member

    Hi kjm,

    Throughout my TE experience I was not exercising because I did not need to. I was extremely underweight for my height and very unhealthy. I am now at a healthy weight, and I know I need to incorporate exercise back into my routine, but I haven't gotten around to it. I used to run all the time (never 8 miles in a day though, that's a lot!). I may begin running again, but I usually run for about 15-20 minutes at a time at slow pace. I would say that if you do start exercising again, take it easy, especially if you know over-exercising is your TE trigger.

    Glad to hear your scalp is feeling better! Mine has been feeling better too, but that can change on a daily basis so I'm not getting my hopes up. I will be glad when my scalp is back to normal, and I bet you will too!
    Last edited: Dec 13, 2010
  10. meggie

    meggie New Member

    Hi Little Star,

    I didn't take any medications for the scalp itching/burning, but did use Jason's Tea Tree Oil Shampoo from Vitacost.com. I had lost around 30 lbs. and now am eating a lot of protein and taking supplements so am gaining some of the weight back. I lose approx. 5 to 10 hairs a day from what I can see and I have hair growing in all over the place. I keep checking it everyday just to see if I am dreaming!!! :) I don't even think about my scalp much anymore because it feels back to normal (no feelings whatsoever!). My hair used to lay so flat because it was so thin but now I actually have height and body to it again. I thought by now I would be wearing a wig! I thank God everyday for this recovery. I continue to eat healthy, exercise for approx. 45 mins. on my treadmill, do Yoga, and try to de-stress constantly with deep breathing, etc. I hope yours continues to grow in like crazy and your life gets back to normal too. God Bless.
  11. NYCGirlie

    NYCGirlie New Member

    These stories are giving me hope.. I wish I was shedding only 50 hairs a day! I was on loestrrin24 in April 08-April 09. I can't remember if my hairloss started while on the pill but it has surely shed after I stopped and is still shedding a year and a half later. I shed 300+ in the shower. I have anxiety every time I wash my hair. I didnt notice it much until a year later when my top and temples looked alot thinner. Now its thinner all over but most noticeably in the top, templesx, crown area. I went to one derma who thought it was stress-related and totally ignored my prior loestrin use. Even the gyno who prescribed it said it couldn't still have an effect since its "long gone from your system by now". I am visiting a second derma tomorrow...PLEASE HELP ME ASK THE RIGHT QUESTIONS so I get a plan of action. Are there any specific questions or blood tests to know for sure it loestrin24 affected my hormones to cause this hair loss? Even though I took the pill a year and a half ago, could it have affeccted my estrogen levels or could the androgen have triggered TE? I really want to ask all the right questions so I get answers! Also did anyone get any other iron tests (other than a CBC)? My iron was 1% lower than average but I have been hearing about other iron tests which measure the iron stores (I didnt get that one done) but am hoping that may be the cause since these bcp stories are horrific! If I only knew then what I know now....
  12. meggie

    meggie New Member

    Hi NYCGirlie,

    I was going through exactly the same things you are going through. I went off of Estradiol (estrogen) after 12 years of taking it after a hysterectory. I was going to a endocrinologist for thyroid nodules and he told me to go off the estrogen and then put me on generic Synthroid to shrink the nodules. My thyroid hormone levels had been fine but these changes kicked me in the butt! I started shedding hair like crazy and lost 30 lbs. Then STRESS KICKED IN. I took the med. for 7 months and then went to see another doctor who ordered me off the gen. Synthroid and put me back on the estrogen (what a relief!). It has taken over a year to get back to normal but the most important thing is to get healthy. As I said in previous posts, I now take a wonderful hair, skin & nails vitamin from Andrew Lessman (check earlier posts), vitamin C, Omega 3's, calcium/magnesium, vitamin D, and Fergon (a prescription iron pill since my ferritin level was only 20). One of the MOST IMPORTANT things I did was to relieve my stress. All the research I did indicated the same thing---stress will definitely cause hair loss, even when the original triggers are gone. And it's true--once I started calming myself down (see previous posts about relaxation tapes, etc.), the tingling, itchiness, and scalp pain stopped. Also make sure you are getting enough protein (I try for 65 grams a day). Hair is made up of protein and if you are not getting enough, your body takes the protein from the hair to support the other organs. I now enjoy a long shower and can actually scrub my scalp (finally) without hair loss. It's a wonderful feeling--one that I thought I would never experience again. I used to HATE getting my hair wet, knowing that it would be fallling out all over the place. Ask the doctor all the questions you posted. I never received any good answers from the derm, endos, and other doctors I saw in the past year. They weren't concerned about the hair loss. I even had one balding doctor laugh and tell me to look at his head! They don't understand how much losing hair can affect a woman. I had a full, thick head of hair before this started a year and a half ago. So I just researched on my own and did what I thought would help my body/hair--and it worked!!! Sorry this is so long but I hope your hair loss ends. I continue to take my supplements and eat healthy. Also getting exercise is a great stress reliever. Good luck with everything and hopefully the New Year will bring you health, happiness, and hair!
  13. NYCGirlie

    NYCGirlie New Member

    Meggie: Thats for the encouragement. I was beginning to think I waited too long to now try to resolve this. A year and 8 months after loestrin and my heair is still abnormally shedding. I have seen regrowth mostly on top, but it can nowhere near catch up to the amounts shed. Does your vitamin regimine help slow down the shedding, or is it just for regrowth? I am now taking a multivitamin & 3000 mcg biotin daily, and a bcomplex every few days. No changes in sheds after 2+ months of this. I will def up the protein...by eye, hope much is 65 grams...like 2 palm-size portions of meat daily? I used to work out alot but now have practically stopped since I am trying to limit washing my hair as much due to alot of hair sheds in the shower. I am hopeful I can pinpoint the triggers soon (be it iron, vitamin deficiency or the pill) and stop this shedding!! Once you started vitamins, how long before you saw a change in sheds and regrowth?
  14. Little Star

    Little Star New Member

    nycgirlie,

    Find a different doctor, because stopping, starting or switching BC can most definitely trigger hair loss that can continue for a long time. My dermatologist told me that in his experience it's the #1 cause of hair loss in younger women. There is a wonderful gal on here named Pilar who was on BC for two months, went off of it and then proceeded to lose hair for 10 months! I believe she told me she was losing 350 hairs a day at one point. So even though the birth control may be out of your system, I have read that it can take your body quite some time to begin producing the correct amount of hormones on its own again which is why the hair loss may be prolonged. All you can do is hang in there. Eventually this will stop! I highly suggest you reach out to Pilar as she can offer her opinions and story to you. She checks these forums often.
  15. NYCGirlie

    NYCGirlie New Member

    Thanks Little Star! Pilar has reached out and responded to my posts before. She is teh reason I think it is associated with Loestrin. I didn't make the connection until recently after reading posts about it. I then thought I wasnt on the pill long enough (only 1 year max) but then I read Pilar's story and think that could be the reason! Does anyone know what type of tests show what effect birth control had on hormones or show what levels may be off balance? I do NOT want to find out its a hormone issue and be put back on a pill...are there any other holistic natural remedies/resources to look into to put hormone back in proper balance?? I am trying to educate myself as much as possible (which is what I should've done before taking the pill in the first place!) It was prescribed to stop heavy menstraul bleeding but I couldve just eaten more iro-rich foods for the same result! I wish I knew then what I know now...yet I am so thankful for this forum

    Pilar- can you remind me what tests or doctors you went to to help pinpoint your TE triggers? I am on my second dermatologist but keep reading about endocrynologists for this? What regimine worked for you....I recall you saying you waited it out for about a year (any vitamins, medicines?) I only took the pill 1x for just about a year, have been off since April 2009 and the shedding will not stop or decrease to my normal 100/day
  16. pilar

    pilar Member

    Hi NYCGirlie:

    I had a complete hormone panel done as soon as TE set in and then on a monthly basis. My numbers seemed pretty normal for the most part, but here and there I did see some fluctuations. I was lucky enough to have had a complete hormone panel done prior to going on the pill, so I knew exactly what levels were normal for me.

    Click on this link and it'll give you all the tests you should have done. Also, it'll give you a better range of what is actually normal. The range that is provided by most doctors (labs) is too large. It's a fertility website, but these are all the tests my doctors recommended.

    http://www.fertilityplus.org/faq/hormonelevels.html#female

    There are many natural supplements that are said to help with hormonal imbalances, but I would be too scared to even try those. A lot of them have estrogen like properties and sometimes can cause more harm. Also, supplements like Vitex that is recommended for hormonal imbalances has a side effect of hair loss. So please be careful.

    When TE set in, I saw my GP, 2 OB/Gyn, 1 Endo, 2 Hematologists (I was also anemic) and 2 Derms. Most of them told me that it was TE and that I had to ride out the storm. They also reassured me that eventually it would stop and I would see re growth. One Ob/Gyn (the one the prescribed Yaz to me and denied it could of caused my hair loss...even though it's listed as a side effect) recommended going back on the pill to stop the shedding. My endo also recommended doing the same thing but also said it could possibly cause another bout of TE.

    In the beginning I took a lot of supplements, including Andrew Lessman's Hair vitamins. I thought that by taking those supplements it would stop the shedding. But then I read and was told that once TE is triggered, it will stop on it's own whether you take supplements or not. I also read on another hair loss board that supplements aren't recommended while you're still in TE, but AFTER when you're re growing hair and in recovery. Even though I'm in recovery now, I've decided to not take any supplements and just eat healthy.

    How much hair do you think you're losing per day?
    Last edited: Dec 14, 2010
  17. pilar

    pilar Member

    PS: I know that it's hard to sit back and "ride it out", but I REALLY think it's the best thing you can do. I made the mistake of buying every supplement and hair product imaginable in the hopes that it would stop the hair loss. Nothing worked, but it eventually stopped on it's own. The best thing I did was eat healthy and take care of myself.
  18. Little Star

    Little Star New Member

    Hi ncygirlie,

    Pilar's answer above seems to have answered your question.

    Your hormones should eventually balance out. It normally takes the body awhile to start producing the proper amount of hormones again. When you take BC it regulates hormone levels. When you stop the BC, your body doesn't know how to produce the appropriate levels on its own any more, and it takes time for it to start doing so. If your hormones don't level out in another six months or so (because two years is a long time to be going through TE), you may need to consider taking the BC again. I know this sucks, but in some cases the body cannot produce the appropriate levels of hormones without help.

    I will probably be on BC until I hit menopause because my hormones are wack. I have horribly heavy periods and my acne is out of control without the BC to regulate it. I really have no problems with this as long as it keeps my hormones in balance. I think for some people BC is necessary. It was for me.
    Last edited: Dec 14, 2010
  19. pilar

    pilar Member

    Little Star is absolutely right! It can take your body a while to start producing those needed hormones. The pill actually stops your ovaries from producing estrogen and progesterone and instead you get the right amount from the pill. So when you stop taking the pill, it takes a while for your body to realize how to make it's own hormones again. For some ladies, they start production right away and don't experience any bad effects. But for some it can take a little longer. I remember one doctor told me that it would take 6 months tops for my body and hormones to be balanced. For me it took a year!

    It's also true that for some women their bodies never begin producing the right levels of hormones off the pill. That's why it's recommended to have a full hormone panel done at least 3 months off the pill. If you have your levels tested and it comes back that your estrogen and progesterone are low, then going back on the pill might work for you.
  20. meggie

    meggie New Member

    Hi NYCGirlie,

    To answer your question about protein, check to see how much protein you need for your age/height/weight. I checked online but can't remember the website. Just key in "how much protein is needed" and see what comes up. I make a 6-egg white scramble each morning using one whole egg and 5 whites. I add spinach, bacon bits, some cheese, and anything else that sounds good. Egg whites are a amazing source of pure protein. I also bought a whey protein powder from Walmart and use that with milk once a day. I make sure I eat three meals a day and include protein with each---fish, tuna, salmon, chicken, turkey, etc. are excellent forms of protein. When I upped my protein, it took about three weeks for me to notice that my shedding was slowing down. This included taking the multi's too. After about 5-6 weeks, the shedding pretty much stopped and I noticed new growth coming in. Hope this helps you!