My story

Discussion in 'Looking For Advice (my story)' started by Ashah, May 22, 2009.

  1. Ashah

    Ashah New Member

    Hi everyone,
    I'm new to this forum, and have found such great information here. You all are such an inspiration to me. I really had no idea that so many women were going through the same or similar issues as me. Anyway, just thought I would share my story. My hair loss began in my early 20's when I started on Triphasil bcp. My obgyn did not agree that the bcp was causing any problems for my hair but finally agreed to switch me to Ortho TriCyclen after about 8 months of nonstop shedding. The shedding decreased slightly on Ortho but didn't stop, so I made an appt. with a dermatologist who basically made me feel stupid for even coming in and told me there was nothing wrong with me. At that time, I had so much hair that you really couldn't tell I had lost any, but the shedding was just really not normal. After 2 years on Ortho, I asked my new obgyn (who also didn't believe that bcp's caused hair loss - absolutely amazing how they can think this) to switch to Yasmin. I was on Yasmin for a total of 8 years, and though the shedding did decrease slightly, my hair continued to get thinner. Before my hair loss started, I had a ton of thick curly hair, so much that I could barely clip it back. As my hair thinned, even the individual hairs became thin, and fine, and became lighter in color. I have never, ever, had fine hair in my life (until now). My family and husband kept telling me that they didn't notice it (and still tell me this today) but I would lose anywhere from 60 to 100 hairs in the shower almost every morning, plus throughout the day on my clothes. My primary care physician ran numerous tests on me, my iron, thyroid, and everything else was normal. I went to another Derm., this time was told that I had hereditary hair loss, and that I should start on Rogaine. So I pretty much gave up on Doctors at that point and decided the only thing I could do was to try to help myself. After agonizing for many months, I finally took the plunge and quit Yasmin in March of 2007. At first, my hair all but stopped falling out in the shower and I was so happy, although I was expecting large fallout after quitting the pill. It took a little over one month for the heavy shedding to begin, and honestly it wasn't any worse than it was during some of my worse days on Yasmin. This lasted for about 2 or 3 weeks, then the shedding leveled off. I had big hopes that about 6 months after the dread shed my hair would start to go back to normal. Unfortunately it never did, and has not as of yet. Although I'm still hoping and praying :rolleyes: I was under immense pressure and stress at work, and also lost a family member in 2008 so those things I'm sure didn't help at all. Then in Jan. of this year I went back to school (online) to get my Master's degree (still wondering why did I decide to do this!?), so this, along with the work load at my day job has had me super stressed.

    Anyway, I have explored (and continue to explore) many herbal supplements, but since I've tried so many unfortunately they all run together and I didn't take notes on when I began taking them, or how much hair was falling out at that time. I can't really say if any of them have helped, but so far I can say that none have hurt. I have a lot of new growth, I do see baby hairs all over the place, however occasionally I see the baby hairs falling out too, and it breaks my heart :( So I know my hair loss has not stopped, but it has at least slowed down, some days I only lose about 20 hairs in the shower, then others I have 50 or 60. My shedding seems to be cyclical, I seem to shed worse the first week after my period, and less close to and during my period. I'm trying to hard to stay positive, and my husband is so supportive. When I get really down, he tells me that he loves me no matter what, and reminds me of all the wonderful things we have to be thankful for, and that some people have lost their hair for much worse reasons than mine, such as cancer patients. So when I think of it that way, it kinda puts things in perspective. I do have my health, a loving family, a job, food, clothing, and a roof over my head... but its so hard to not wish that I could keep my hair too! ;)

    After all the reading I've done and doctor visits, I'm sure that my problem is hormonal, and/or the bcp triggered androgenic alopecia. For me, there's still the question of whether or not my hormones are balanced. So today I went to see an endocrinologist for the first time. She checked me over really well, asked lots of questions, and listened to what I had to say. She couldn't believe that I had never had a hormone test, so they drew blood today and she's going to check my testosterone, Iron, thyroid, cartilage connectivity(Didn't know there was such a thing!), and several other things, about 10 things in all. I have another appointment next Wed. to get the results so I'm hoping maybe it will show something. Although right before I left she told me if everything was normal then Rogaine was my last option which kind of burst my bubble.
    I use Henna on my hair for conditioning purposes, and color (gives a slight red tint on dark hair, but not really noticeable except if your in the sun) and it makes my hair feel thicker, heavier, and great. It also covers gray really well, and doesn't fade out like dye, plus its from a plant so is all natural - love it!
    Anyway, as for the herbs and vitamins.... In January I began taking Shen-Min Advanced for Women. Some reviews said it was a gimic while others actually had results so I decided to give it a try. Now, I can't swear by it, but about a month after I started on it was when I started seeing the new growth appearing. And a lot of the new growth is actually thick black hairs, but some of them are still the wispy thin ones. So I'm continuing on the Shen Min. I also take Saw Palmetto, and can't say that I've seen any change since I started on this in Feb. Although I'm wondering if I'm taking enough of it to matter. I take Vitex to help with my periods, and supposedly it helps the estrogen/progesterone balance as well. Then I take the regular stuff, B, D, Fish Oil, Multivitamin. Also take evening primrose oil, and L-Lysine. I started yesterday spraying my head with organic ACV when I get out of the shower as someone suggested here on this website. And strangely enough I haven't seen any hairs all over my clothes yesterday and today (but still had shedding in the shower). So I'll stay with the vinegar to see if it continues to help. I'll try anything at this point! I also ordered some MSM, and Krill Oil supplements. I gave my whole big list of supplements to the Endo today, and she read through them, told me they wouldn't hurt me and if I felt like they were helping to keep taking them. Some days I just want to call up my obgyn and ask for another bcp prescription. But then I think, what if it makes it worse? And I tell myself that being without the synthetic hormones is healthier, but then I read where some women say that certain bcp's have helped, so its really confusing and so hard to know what to do. When you get to a certain point, its really scary to try new treatments because there's not much hair left to lose!
    Sorry for the long post, if you're still reading, thanks so much for reading my story. I really and truly appreciate this website, and am so thankful to have found it. If I do ever see any success with any of my 10,000 supplements I'll be sure to report back to you all!
  2. kawawa

    kawawa New Member

    Hello

    Bless you, your story is not unlike my own in many ways. I started and stopped BCP and it did not change what was happening. I lost in cycles for 14 years until I lost so much that I had to get a topper. I tried all the herbal things, rogaine and shampoos, biotin and vitamins and massage. I was gentle with my hair I quit coloring it. Sorry to say that nothing worked for me. I gave up and got supplemental hair and I really love it.

    Since you are still in the treatment phase. Have you thought about trying Viviscal 22% tablet along with Jason's Organic Range Shampoo and Poppy Seed Hair Mask from Body Shop. Honestly, I haven't tried them, but several women that I know have had success with this natural approach. Also, have you don't the swab test everyday to find out if your hormones are wacky. It cost about $300 to do it at wellness clinics that specialize in Bio-Identical hormone treatment. I have been thinking about doing this just because I am 44. Anyway I hope this helps and welcome.
  3. Women's Hair Loss Project

    Women's Hair Loss Project Administrator Staff Member

    Your story is My story

    Hi Ashah -

    In reading your words I felt like I was reading my own story. Except you did something I wish I had the courage to do, you stopped the pill. I am still taking the pill Ortho TriCyclen to "help" treat my hair loss, which was started in the first place by the very high androgen pill Loestrin FE. After continuing to progressively thin for 10 years, it is difficult to find that strength to quit the pill. I don't have the hair I had 10 years ago, and if I shed today in the say way I shed after coming off the pill the first time, I would seriously have huge bald patches all over. So I stay on it, resolving myself to quit at the time I am ready to shave my head, so I won't have to watch the hair fall. That's my exit plan :)

    It's great that you were able to get off the pill and not really have any extra shedding more than you already were experiencing.

    I'm sorry to hear the doctors gave you the run around. When I started losing my hair after getting off the Loestrin FE, I went back to my gynecologist and told her it was the cause of my hair falling out. I didn't know at the time that it actually kicked in my predisposition to androgenetic alopecia (lucky me). But she was convinced there ways NO WAY it could POSSIBLY be the cause. Oye Vey.

    I'm shocked that none of the docs thought to do blood work on you. I am so glad you finally found an endocrinologist who is actually willing to listen to you and take the steps necessary to help you with your hair loss. If you find she is a great doc, definitely make a post about her in the "Recommend a Doctor" section.

    Like you, I spend a lot of time reminding myself of all the things I do have. The things I should appreciate today. After dealing with this for 10 years, I've come to realize that if I can make it through my life and have this be the biggest issue I had to face, well then I probably was one of the luckiest people on the planet. Hair loss is horrible, it definitely allowed it to rob me of my 20's. I nearly hid the entire time, turning down invitations for get-togethers and avoiding all direct overhead lighting ;) I let my fear for the future, my sadness about about hair loss, my want for what I had, to take over my life. For what? That time is gone. I kick myself every time I think about that. We are so much more than our hair. We have so much more to offer the world than being a woman with a great head of hair. In many ways I think my hair loss has actually improved my life and made me a better person.

    Your 10,000 supplement list is good, like your doc said, it isn't gonna hurt you and if anything it's probably making you healthier in tons of other ways. Your joints will be so lubricated that you'll be competiting in the iron man when you're 80! :p

    I wish you the best of luck in finding answers and what you seek in your blood work. God knows I prayed forever to be able to point to something on a paper and say "Eurkea! There it is!"
  4. Ashah

    Ashah New Member

    hi Kawawa, thanks so much for the suggestions. No, I had not heard of Viviscal but i just did a search and it sounds interesting. I'll definitely read up on it. As for the hormone swab, I had not heard of that either. And since you brought this up, today I asked the endocrinologist was there a particular time of month that was best to do the hormone tests, and asked did we need to check it more than one time, and she said no. Although I thought I remembered reading that it needed to be done more than one time during the month to get an accurate reading. She also said she does not do the saliva tests which I had read were also good. So this hormone test probably won't prove anything *sigh*. But I guess its good that she's checking for the other things too. Anyway, thanks again for the suggestions, I really do appreciate it!
  5. Ashah

    Ashah New Member

    Hi WHLP - thank you so much for your words. Everyone has their own way of dealing and/or treating this problem and I can totally understand why you chose to stay on the pill. I did a lot of reading on vitamins prior to stopping the pill, and beefed up on those as well as hormone balancing herbs. But I worried constantly on whether or not I was making the right decision. And I still don't know if I made the right decision but now I'm stuck with it and am the opposite of you - I'm afraid to go back on the pill. I read that some women had success with Loestrin 1.5/30, although it seems to have high androgen index. This is actually a pretty good article, you all may have seen it already: http://www.wdxcyber.com/ncontr13.htm. It lists out each pill and their androgen index. But I guess for now I'll keep doing what I'm doing. I like your exit plan! Sounds like a good one. Funny that you should say that about bypassing your 20's due to worrying... again, I kind of did the opposite. I pretty much ignored the problem, hoping it would get better since my doctors told me nothing was wrong. So all that time I wasted, when I could have been more proactive and maybe had a better change of getting my hair back. Now its been 10 years and probably way to late to get back any of my hair. Right now, I would just be happy with controlling the shedding! Oh well, let's not dwell on yesterday :D Thanks so much everyone for your kind words.:>
  6. kawawa

    kawawa New Member

    I wanted to tell you that I quit taking the pill about 4 years ago and my hair has not grown back. I am not sure about the BCP thing. It may be connected or a trigger, but I think our hormones have more to do with all of this. It has taken me a long time to come to this conclusion. You may ask why. We are all women and we all have one thing in common because of that, our hormones. All the other things are incidental and sporatic.

    Personally I am very healthy and eat all the right foods never in excess and I exercise regularly. I have no chronic disorders other than bouts of constipation and heartburn. I drink lot of water and manage my stress very well. I just think that even though my OB has told me that my hormones are right because I have regular periods, that something just isn't right. I have bad PMS and manage it OK because I am in tune with the symptoms and know to keep my cool during that time. (It wasn't always like that. I used to have emotional meltdowns once a month)

    I too ignored my HL and thought it would grow back on it's own. I managed OK with good Hair cuts and good color, but when I had that shed last year it was over and I couldn't hide it any longer.

    I have decided to do the daily swabs just to see what they have to say. This wellness clinic is actually run by a doctor and he believes in natural rememdies when possible. I am good for that. I don't like to take drugs.

    My observation is only for women who have thinning over many years, I don't have an opinion about other types of more agressive types of HL.

    I will be interested to hear about your journey and I will share what I find out as well.

    Take Care
  7. kittykat

    kittykat New Member

    Hi There,

    I think we are walking similar paths with respect to our hair loss journey. I started noticing a large amount of hair loss around October/November shortly after I stopped using the Nuva Ring. By December I had completely lost the hair around my temple area but my hair line was pretty much in tact. I went to the doctor who looked at my scalp and said it was "androgenic alopecia" and offered no suggestions or referrals. When I went back a third time I was more insistent and asked for a referral to a dermatologist and instead was given a rx for ortho tricyclen and told to use rogaine. I haven't done either of those things for a number of reasons:

    -i'm hopeful that my hair loss will resolve itself on its own
    -i'm scared that i'll lose more hair
    -i don't want to have to use bcp forever

    So here I sit almost 8 months later with no real plan of action and just lots of questions! I'm interested in pursuing the supplement route as well but feel overwhelmed at how many combinations there are out there. I think for starters i'm going to start on a b vitamin complex.

    Like you, I see lots of regrowth where I had lost all of my hair, but sadly the hairs that do seem to fall out the most are these baby hairs. Other than that I am not losing a large amount of hair on a daily basis but things are noticeably thinner. I am very tempted to just use the B.C pill to see if it "fixes" things.

    I was interested in reading all of your supplements that you take. I am going to go through your list as a guide!
  8. kawawa

    kawawa New Member

    years

    How do your roots look?

    It took me years to notice that the roots of my hairs are almost none existant now. When I was younger I had these large bulbous roots and now I can hardly see them when a hair falls out. This can't be good. I never thought to look at that until I read about miniaturation of the roots.
  9. Ashah

    Ashah New Member

    supplements

    Hi Sugarkitty,
    Yeah, sounds like we're pretty much in the same boat but the difference is that it sounds like you haven't waited as long as me to do something about it. Hopefully you still have a chance for your hair to come back. I'm afraid after this long, mine could be gone forever! But thinking positively is half the battle. I'm also tempted to go back on the pill, even though I hate the thought of it. At least when I was on it, the thinning was more gradual. But I'm going to wait to get my test results next week before I decide what to do. The problem is that when you're dealing with hormones, you have to wait soooo long to see if something helps.
    Yes, B Complex is definitely a good supplement, as is Biotin. I've also read that bcp's (not sure about Nuva ring) can cause not only B deficiency, but also zinc deficiency, which can cause hair loss in itself. A good multivitamin is also worthwhile. I was taking Centrum Women's One a day, then switched to New Chapter Organics Every Woman II, which aren't cheap. But I figured I'd try them for a month to see if I noticed any difference. You have to take 3 a day, but I do feel like I have more energy. Not sure if that's worth the extra cash. I do also like Vitanica Luminous, its basically just a hair and nail vitamin. Good luck on whatever you decide to pursue!
  10. Ashah

    Ashah New Member

    Just thought I would share something with you all. Its so hard not to let this horrible plague of hair loss to take over your life, at least for me anyway. I find myself spending hours upon hours researching stuff on the internet and even more time worrying that I'll lose the rest of my hair. The worrying and the stress bleeds over into family life, and well, things just go downhill from there. Over the years I have prayed and prayed for my hair to grow back, but recently I've found a lot of comfort in just praying for help in dealing with it all. Stress is only going to make the situation worse. Anyway, just wanted to share a verse that my grandmother taught me. It might seem silly, but praying to have the burden of worrying over this problem lifted from your shoulders, and to feel it lift away is just a very comforting feeling.
    Matthew 11:28: “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.”
    Although this may not help my hair grow back, it could help keep me sane at least :D Its just like my brain goes a million miles an hour sometimes just thinking about my hair and what I can do. I find that Yoga helps too.
  11. jesuslovesglo

    jesuslovesglo New Member

    Ashah, Verses from our bible always helps me too! He is my strength,Glo