Chronic TE please help

Discussion in 'Success Stories' started by Georginajaneb, Mar 28, 2015.

  1. Georginajaneb

    Georginajaneb New Member

    Hi
    I'm a 21 year old female suffering with hair loss for 10 months now.. With no sign of improving. It began in June 2014 after I had a break up earlier in the year, began uni, placed under a lot of stress from my chronic depression and re-emerging bulimia. Honestly I had suffered with the depressed and eating disorders for years... And my hair has become thin and brittle but never fell out like this. I have also always been a very heavy exerciser in past years with no issues.. In more recent years it has gotten better but between June 2014 to early March this year it has been athlete level training. I'd also like to mention that I have suffered with bouts of amenorrhea and this into all hair loss coincided with a period after many months. So in June my beautiful long, blonde thick hair changed drastically and by August got so bad that I cut it short for the first time in years. I hoped that after the initial shed I had seen an end to it.. But I noticed by October that things has progressively gotten worse and saw a derm about it (had already seen several gps who just told me to go home and stop stressing out).
    This dermatologist told me that I have diffuse hair loss and that it must be telogen effluvium, assuring me that it would return to normal in some months. She also put me on rogaine.. So I went home very relieved with my rogaine and calmed down a little. About a month and a half later my hair began to shed rapidly, worse than ever. I finally looked further into the rogaine and discovered that it causes hair shedding. Freaked out, I immediately stopped using it and threw it out. That hair shedding stopped fairly soon after I stopped using the rogaine but my hair was left even thinner. I simply hoped it might grow back.
    So I hadn't noticed things getting hugely worse until late November/early December 2014. My hair was changing a lot. I new that I was still losing a lot of hair and began to freak out again. I had many attempts at stopping and reducing my bulimia but never managed to completely stop. However it was much much better than it had been mid 2014. I waited to see if things would improve until January when I realised the hair shedding had sped up even further. I decided to go back to my gp and got a round of bloods, got checked for PCOS (as my skin was riddled with acne and I hadn't had a period since that last June), had a pap, all hormones checked, iron, vitamins, coeliac, you name it. I had it done. All came back normal apart from iron which was slightly low. So I was put on iron. I also started taking vitamin d, biotin, hair skin and nails, magnesium, zinc, fish oil, multivitamin and ginkgo biloba. I started using Apple cider vinegar on my scalp, head massage. Reduced my exercise and tried again to stop my bukimia with some success. Nothing worked. Shedding continued and my hair got worse and worse. Also my eyebrows and eyelashes had thinned terribly. I then randomly got a period early feb and the shedding went NUTS. Then settled down for a bit. One month later again the shedding became insane with my period. I was so certain it was all related and still believe it may be somehow. So I went back to my derm who took a scalp biopsy. Though she said again that my hair loss is diffuse I notice more and more loss at my nape, above my ears, sides and bi temporal areas. My hair line seems to be receding. Anyway, she took 2 samples from my scalp, had a look through and a week later told me I have no miniaturisation, no inflammation or sign of scarring alopecia, so told me again that I have TE. When I asked her why there is so minimal hair regrowth, and why the tiny hair sprouts at my hairline are vellus, she said "I don't know. Use rogaine. I hope it's not a chronic issue for you". Well clearly it already is. So I'm now under the impression that I have chronic Te.
    In the past few weeks the sheddig hasn't been so bad.. Maybe 20-30 hairs in the shower.. 20 in my hair brush and a few that fall out with my hair tie.. But the issue is the no regrowth. I look at my part and lay it flat to see if there are any little hairs but there are so few. I even dyed my hair platinum blonde (I'm a brunette) so that I could more easily identify new hair growth. Well it appears the hair that I do have grows but the hair that I shed is not replaced. And still.. These whispy White blonde hairs at my hair line. My eyelashes are the worst they have ever been and it looks like I have none. They don't appear to be re growing. My eyebrows are growing thinner and thinner. My skin is still covered in pimple. ApparentLy though I can't blame my hormones for that. Also in the last week my binge-purge bukimia has become bad because I have been so depressed and just want to take my own life most of the time. I'm so lost and sad. I feel ugly beyond words and can't stand being inside this body anymore. No one undersrands how it feels. I don't even recognise myself anymore.

    So my questions are:
    If I have chronic Te, why won't my hair grow back normally? Why it is just like I am losing hair and it isn't being replaced?
    What does it mean if I am losing more hair at my nape/bi temporal areas?
    Why are my eyebrows and eyelashes thinning and not re growing as normal?
    Why do I shed SO much when I get my period?

    Please any advice is welcome. Help me. Please.
    Last edited: Mar 28, 2015
  2. SurlyTemple

    SurlyTemple New Member

    Hi
    I am new to this board and have TE, as well.
    I empathize, since hair loss is one of the worst things a woman can experience. (at least from my perspective.)
    Please don't even consider taking your life!!
    There are many different treatments available, and you are so young.
    Something WILL work for you.
    I am here if you need to talk. :)
  3. Alicia Temple

    Alicia Temple Member

    I would get a second opinion with both a derm and a endronologist who deal with people with hairloss. Im kinda torn between two answers from what you are describing. It sounds like some type of alopecia from what your saying about your eyebrows and lashes but it also sound hormonal from you mentioning your pimples. Go to a endro and have them take a list of bloodwork. The list of the type of bloodwork you need done is on one of Y's articles. In the meantime take vitamins: biotin, gelatin, multi, flax seed. Also I would recommend trying Nizoral shampoo. It has a DHT blocker that may potentially reduce the shedding. (These are all things that I am currently taking) However, remember that each treatment will be different for everyone, so please, try not to be upset if it doesn't work. Even I don't know if it is benefiting me. Do some more digging into research and I am sure you will find something. Also, look into some wig and head scarves. There are some really nice ones out there.
    Take care
  4. Lpaig even

    Lpaig even New Member

    Hey, your story is almost identical to mine, ammenhorea, exercise, etc... I too and losing hair from nape, hairline, eyebrows and eyelashes... I may not have any awnsers for you but please know your definetly not alone!
  5. petey3

    petey3 Member

    I am so sorry you are going through this. I know what it's like to feel like your whole body is out of whack and none of your doctors are listening. It makes you feel like a crazy person, only you're not. You know something's wrong. You feel it!

    If you are losing hair from your eyebrows and eyelashes, you really need to take a look at your thyroid levels. Losing hair from the outer third of your eyebrows is a classic sign of a thyroid disorder. A second opinion might be useful. You said all your tests were "normal", many doctors have different ideas about what the "normal" range is. Hormone tests are just a snapshot of one moment of one day. Hormone levels fluctuate throughout the day and month. Are you taking any form of birth control, BC pills, shot, IUD? All of these list hair loss as a side effect. For a list of medications that can cause hair loss check the American Hairloss Association website.

    If you are bulimic, you may very well have low iron stores. Did your iron tests check you ferritin levels? It needs to be above 40 to maintain healthy skin and nails. You may need a more readily absorbable form of iron if you've been on it for awhile and your levels have not improved. There is a forum on here totally dedicated to that topic as well.

    If you are off the charts stressed out, maybe a cortisol test might reveal something? Also, did you have all the auto immune tests run? I have had all the blood tests and was told everything was "normal" only to have another doctor tell me my ferritin was LOW and my D was low. It never hurts to have them run again.

    Have you considered a naturopath is or homeopathic doctor to help you get your hormones balanced? If your doctors were looking at you, all of you and really listening, they would know that something is not right.

    I wish I had more to help you. Hang in there.
  6. petey3

    petey3 Member

    One more thing...Google zinc and hairloss. It's worth looking into.
  7. Georginajaneb

    Georginajaneb New Member

    Hey guys just an update

    So I spoke to my gyno who took a look at my sex hormones and said that my estrogen is very low whilst my test and DHEAS are too range of normal. He says that this huge gap between the two may be causing my issues in which ccase it is AGA :( also, My ferritin stores are flush on 40; is this still a issue ?
    Also my cortisol is very elevated above normal.

    I then went to a trichologist who took a microscope to my scalp and showed me all my horrible choked miniaturised hairs :( apparently 80% of my hair is not growing properly.
    I've also read that AGA can affect brows and lashes. It's like I have gone through menopause and now have really super feathery sparse hair. And peach fuzz on my cheeks that I never noticed before :(

    So now I have a script for spironolactone from my psych of all doctors and I have also just started using nizoral 2%. I'm also a week without any sort of purging. I take every vitamkn under the sun for my hair and that includes high strength iron/Vit c which I have been takin for some time now.

    So I guess now my question is has anyone experienced a similar thing with AGA? I haven't been diagnosed with this but all signs now point to it :( i just think it's so strange that I have lost 70-80% of my hair in one single year to it! I will keep looking into the iron and thyroid but I really think my sex hormones are to blame here :(
  8. Annie78

    Annie78 New Member

    I feel for you. In July 2014 I starting losing a lot of hair. I panicked. I noticed I lost all the hair on my arms, hair on legs was barely growing, brows and lashes were thinning. I got blood drawn by my OBGYN. She mentioned that estrogen was low but was normal due to my age (46 at the time). She did not seem concerned that I had not had a period in two months. She sent me to derm. After a scalp biopsy he said I had TE and AGA. Told me to use Rogaine. My family doc ran more tests to determine if I had a thyroid or another autoimmune disorder. I was told to stop stressing and meditate. It was awful. I cried all the time. I isolated myself. I had no energy. I did not excercise because I did not want to wash my hair. I counted it. I literally watched it fall from my scalp and roll down my arms before landing on the floor. I did not leave the house.
    After three months, the shedding did slow. I was eating very well. I had been doing accupunture twice a week. I was taking a lot of vitamins (Viviscal, Biotin, Multi, Chinese Herbs). My hair started to grow. It was coming back and I started to get my confidence back.
    Well, here we are a year later, I'm 47. My hair starting changing texture in May. Strands began falling once again. I panicked got blood drawn. Thyroid is fine. Estrogen and Testosterone are low. Progesterone is good.
    I immediately went on BHRT praying that I found trigger. But, here I am. My hair is shedding worse than before. My brows are thin. I have 1/4 of my lashes. I'm depressed. The days are crawling by. I don't want to go anywhere. I don't want to see anyone. I pace for 30 minutes before getting in the shower bc I don't want to see my hair fallout. I'm not exercising bc I break down as I see the hair land on my elliptical. The growth I did have has diffused. I can see my scalp. I look sick. I'm anxious and panicked. I cannot stop crying. I question why God is putting through this again. I have an appointment with another Derm next week. Is it a waste of time? Is it because I am in perimenopause?
    I have no strength.
    And I am so desperate that I got PRP in my scalp yesterday. I've lost about 60% or more of my hair Ina year. No one understands. Need help and courage forum members. I'm going bald. Please help.
  9. petey3

    petey3 Member

    I just had PRP three weeks ago too. I totally understand everything you are going through. So you have had two rounds of telogen effluvium? Do you know what the trigger was? Switching or stopping birth control pills? Medication? Surgery? The body hair and eyebrow/eyelash loss sounds like thyroid but you say all your numbers are "normal". Don't you hate that word?! If my body was "normal" this wouldn't be freaking happening!! What is BRHT? Hormone replacement therapy? Have you had the full thyroid panel done including a reverse T3? Did you ask what test range they are using. It varies by doctor. Also, have you had your iron including your ferritin? A lot of doctors won't run it. Why are you thinking perimenopause? Because your estrogen is low? 47 is still young. Hang in there!
    Annie78 likes this.
  10. petey3

    petey3 Member

    Georginajaneb, is your doctor doing anything to try to help you get your estrogen up? Does he just think the hormones are out of balance because of the purging? Keep up the good work controlling that! Hopefully your body will heal after you start getting all of the nutrients it needs.
  11. Annie78

    Annie78 New Member

    Hi. Thank you for your reply. Yes second round of TE. I did have iron done last summer it was fine. I had all thyroid tests done and there was nothing suspicious. I did not ask what test range they were using. I guess I need more information on that. I did not catch trigger from first round. But, I believe it is hormonal imbalance. For the second time, my hair falls out when my cycle is not every 28 days. That is why I went on the Bio identical Hormonal Replacement Therapy. My estrogen was low.
  12. Annie78

    Annie78 New Member

    How is your TE? It sucks.
  13. Annie78

    Annie78 New Member

    How do you think the PRP is working?
  14. petey3

    petey3 Member

    It's too soon too tell. My hair has been shedding like crazy lately so I'm pretty stressed out about it. My doctor doesn't seem to think it is related to the PRP though.
  15. Annie78

    Annie78 New Member

    I'm so sorry. Mine is too. You are not alone.
    It is such a beautiful day. I'm inside stressing over my hair. I don't want to be seen.
  16. Georginajaneb

    Georginajaneb New Member

    Petey3 the pill was discussed but I refuse to put that stuff into my Body again. All the doctors seem to think it's a great solution but I only see it as a poison. So for now I'm going to try the spiro, nizoral, scalp rolling and massage as well as sticking to staying bulimia free.
    My dr did that say it could effect things But there are hormonal issues all through my family however it's never caused hair loss like mine.
    I pray to God that I can have my life back. I feel like nothing right now
  17. Annie78

    Annie78 New Member

    I hear you. I'm feeling the same. Hairliss. Sucks. You are loved.
  18. petey3

    petey3 Member

    I totally get the staying inside on a beautiful day thing. Cloudy days are a hairloss girls best friend. I don't have to worry about the sunlight shinning through my thin areas. Sad, I know. I was so upset a few weeks ago because for the first time in my life I got a sunburn on my head. So on top of being worried about my hair the whole time I was out with family "enjoying the beautiful day" I had a humiliating and painful red scalp to show for it. Sigh.

    I wish I had never gotten on the pill. Now I want off! Georginajaneb, if that it what your instincts are telling you then stick with them. There has to be other more natural ways to balance your hormones without the risks. How is the micro needling working? Do you use anything with it like essential oils? Hang in there.
  19. Georginajaneb

    Georginajaneb New Member

    Petey I use a blend of emu and borage oils; Apple polyphenol capsules; saw palmetto gel capsules and crushed up aspirin tablets. It's hard to say whether or not it's making a difference just yet but I have noticed less shedding with the nizoral and spiro. However I am getting some absolutely hectic breakouts all over my face, neck and chest. I hear spiro
    Can initially cause this. I'm really hoping the topicals will do their thing in time as I will not use minoxidil. I hate the stuff. Also I will say that I have been using castor oil and saw palmetto on my brows and lashes each night and although it does not fhange the thinness of the hairs themselves, it has made them ridiculously long. My eyelashes are like twice the length of what they were and Ive had to trim my brows. It's just a shame that they are still so sparse: I am going to try latisse for my brows and lashes (and maybe even the bald spots on my hairline) next. I've heard great things so I'm keen to give it a go. I will keep you posted about how things progress.
  20. trudy19

    trudy19 New Member

    Hi Annie,
    Just came across your post. I'm looking for others who have also taken viviscal. I saw that your post was from last year, but wanted to check in and see how things were going?