Diagnosed today with Androgenetic Alopecia

Discussion in 'Looking For Advice (my story)' started by playlee1, Oct 1, 2009.

  1. playlee1

    playlee1 New Member

    I had noticed my hair thinning since November and it started to become worse from May. I went to a doctor and she tried to talk me out of seeing a dermatologist and eventually she referred me. I booked in saw the dermatologist who set me up for blood tests and recommended a scalp biopsy. Blood tests came back fine. It took me 3 weeks to pluck up the courage to have a scalp biopsy and today i have been told i have Androgenetic Alopecia.

    I had been on this website a few weeks before the biopsy and was 90% sure that i had the condition. I'm relieved that i know but devastated and crushed that this could get worse and it's not a simple quick process to regain my former hair. The past two weeks i haven't been out and have found myself distracted at work and distant at home. I am normally such a fighter and you can never stop me but I'm struggling to find that motivation.

    I have purchased rogaine 5% and will start that. The doc said to consider cyproterone acetate if rogaine doesnt work after 6 months.

    I am not sure what i am wanting from you guys on this forum yet...but i just wanted to tell someone what is happening to me! i havent told my parents nor my friends. not really sure where to start as the androgenetic alopecia is blury to me still...as in why, how and when. i keep reading things online over and over to get a sense of what i have. Im sort of at the stage wherei cry when i think about it, im so exhausted from this.
  2. Angela

    Angela Moderator

    Hair loss can be emotionally exhausting! It does take a toll on our lives if we let it. Its ok to cry too. We are here for you if you need us. Finding out a diagnosis is hard, but being alone in that diagnosis I think is even harder. It helps to know there are others that will come along side of you. I know I don't have the answers for "what works best" or how to make hair come back, but I do know that you have a lot of support here.

    Keep us posted about how things are working for you.

    Here is my question for you...if your continues to fall out, what will your next step be? I know its a scary question, but knowing you have options is so important. It puts you back in the driver's seat and take control of your life again.
  3. phurrballe

    phurrballe New Member

    Hi Playlee1. I am so sorry that you are going through this. I know there are many women here who are so supportive and can offer tricks and tools to help live with your hair until you can slow the loss or if you go the route of supplmental hair. My hair started thinning right after the Holidays this past winter and now I have less than half of my hair left. I have AGA. I had thick coarse gorgeous hair and it was the one thing about me that I could always count on looking nice. Now it is gone....a thinned, very frizzy wirey old looking mess in less than 6 mos. I was emotionally wrecked over it and everytime I looked in a mirror or tried to style my hair, I felt like I was sucker punched.

    BUt I joined here and another HL forum and received tremendous advice, support, great tips for coping and dealing with the thinning hair and found the information here is actually more uselfull to me than anything my doctors gave. I hope you find the same good results.

    Welcome and if any of us can help inanyway, please let us know.

    Lee Ellen
  4. skittle

    skittle New Member


    I am now 29 & had extra extra thick hair when I was a child that started thinning at 14- gradually! When I was 21 I was told I had the sae as you AA- I cried for a week. For 3 years at that point I always wore my hair tight back in a bun as it was to thin and frizzy and wavy to wear down and it was only down if blow dried. Then at 22 I realised i couldn't wear it up anymore as it had diffused too much so I found toppik and started using that. As the hair got thinner, toppik powder started too show..so I changed to fullmore as the years have gone by I use more and more fullmore. Before when i got my hair blowdried with a bit of fullmore i was good to go..It now takes lots of layers and backcombing and product to achieve that look. I can no no longer wear my hair tied tightly back asthere is not enough hair so it down now very curly and fringe with fullmore...I try not to think about it know my hair is thinning day by day but there r lots of ways to disguise it- look at me. My friends all think i have lovely hair 65% off my hair is gone but i cange my style to suit the status of my hairloss- no magc solution but with aa it takes time- without fullmore I would awful! Also buy vivascal it is a god send! I hope this gives you some faith.
  5. kso

    kso New Member

    I was also recently given the diagnosis of AGA. I did not have a biopsy done, but I went to an "expert" in the field. Within minutes, she had diagnosed me. While it was helpful to finally get some validation and actually have a hair loss expert recognize the fact that my hair was thinning, the diagnosis seems more like a prison sentence at the moment.

    Similar to your stories, I noticed hair thinning in July 2009. It seemingly happened over night--like somebody stole my hair while I slept. Four months later, nearly 30-40% of my hair is gone. Scalp everywhere. What confuses me the most is...I though this was supposed to be a gradual process? There is nothing gradual about four months. Any thoughts on that?

    Also, is anyone having luck with Rogaine? I am using the 2%, but wondering if I should switch to 5%?
  6. Dharma2

    Dharma2 Member

    Hi Kso, just wondering, do you know what caused your hairloss yet? Depending on what it is you may be able to be treated but should probably act quickly to get the best results. Losts of women find effect treatment so don't loose hope. Read the post if you haven't already. The ones under "success stories" were quite helpful to me.
  7. kso

    kso New Member

    Hi Dharma2, Do you have AGA? If so, what worked for you?

    My story starts (and ends) with stress, I guess. I am juggling a lot, but have been for a year and a half. When I noticed my hair thinning, I tested my ferritin and thyroid. T3 and T4 were hovering slightly below normal, but TSH was normal. Ferritin was 11 in September. I have seen 3 MDs, none of them were concerned about the thyroid tests. Since then, I have taken iron and gotten my ferritin up to 25. I suspect it is even higher now, but was last tested a few weeks ago.

    Doctors have been completely insensitive, making this process more difficult. I started seeing an Ayurvedic practitioner last week. I think I am done with western medicine for now (although I am using Rogaine reluctantly). I am taking iron, lysine, vitamin C, a multi, biotin, using Ayurvedic oils on my scap, and even seeing a hypnotherapist this week for all the stress this hair loss has dumped on my shoulders. What more can I do?

    Thank you for responding. While I am sorry you are going through this, as well, it is comforting to have the support.
  8. Dharma2

    Dharma2 Member

    Here's what worked for me, hope it helps

    Hi KSO,
    Yes I was diagnosed by a dermatologist that specializes in hair loss in Edmonton, Alberta with female pattern balding. I am 41 and have never been on BCP before and was told it was stress related hair loss by the same dermatologist who eventually realized it was more than that. If you read Dr. Redmond’s Book “It’s Your Hormones” he explains everything about hormonal hair loss and even how to treat it. Now I refer to it as Hormonal Hair Loss and that doesn’t scare me near as much.
    I had my labs done and everything came back sort of normal, except for my testosterone was a little on the low side and my estrogen was in the low range. I believe I have hair follicles that are sensitive to testosterone and when my estrogen dropped (due to perimenopause) I started loosing my hair. It happened pretty fast too. Within a few months I was seeing my scalp. It was falling out everyday all day long. Now I don’t loose any noticeable hair at all. A few in the shower but no more than 10 now.
    I’ve posted my treatment on here before so you may find it somewhere (not sure where I posted it) but in short, I am on 150 mg/day of spironolactone (aldactone) and I am taking birth control pills Yasmin for 12 weeks continuous and 4 days off. That keeps my estrogen levels consistent. The spiro caused a terrible shed for about 4 months then tapped off and once I started on the Yasmin all the burning sensations and itching went away too. Also the texture of my hair returned to better than normal with about a week of taking Yasmin. I’ve only been on the treatment for a while but I honestly believe I’ve found what I needed to stop my hair from coming out. I also wash my hair everyday with Nizoral 2% shampoo. This helps keep the DHT off of my scalp.
    I just want to say that I don’t think in anyway that this treatment is a cure all for everyone but it is working for me and my hair loss was getting severe. If this treatment isn’t what you need there are a lot of other treatments that work too. I spent a small fortune on products from my local health store but none of it helped. I do take biotin and omega 3 everyday but that’s it. If your hair loss is hormonal then it’s going to take hormones to correct it. If you can get Dr. Redmond’s book a lot of this will make more sense. He’s helped thousands of women keep their hair. I really hope you find what will work for you. Don’t give up hope. I went to several doctors before I got the help I needed. I ended up telling the doctor what it was I thought would work (based on Dr. Redmond’s recommendations and these forums) and she was willing to work with me. Hugs
  9. kso

    kso New Member

    Thank you so much for sharing. I have learned so much from others on this forum, I wish that more people would share their stories for the collective good. I know it is not easy to talk about, but the information is really helpful.

    Would you mind telling me what your testosterone levels were? My Serum testosterone is 38 (normal is 14-76) and my free testosterone is <0.2 (normal is 0.0 to 2.2). I will have to check my estrogen when I re-check my iron in 2 months.

    I asked my doctor about starting on Spiro and BCP's. She said that in her experience, she does not see good results with this regimen. But, I'm thinking that I should be the judge of that, no? Like you, I have never been on birth control.

    Is there anybody else who has had success with Spiro and BCP's? Unfortunately, it seems those stories are few and far between.

    The difference with you and I is that I do not see excessive shedding. It's bizarre, I am certain I am not losing any more hair than normal. Nevertheless, this is consuming me. I have multiple responsibilities in my life, and I am slacking everywhere. I am not myself anymore.

    I will take your recommendation and get Dr. Redmond's book. Again, thanks for sharing.
  10. Asiu

    Asiu New Member

    Dharma2 - Hormonal Hair Loss

    Dharma - in reading your story, mine is very simliar w/the exception that I was on BCP and once I stopped my hair loss began - it was massive (note, I am 40 yrs old). After seeing my OBG, I went back on BCP where my hormonal levels were checked indicating I was low on Estradiol/estrogen and testostone. I am currently taking BCP and 200 mg of Spiro. I was was wondering if I could communicate w/you since our stories are very similiar and I am very new to this site and distraught over what is happening. If you wouldn't mind emailing my personal email address so that we may coordinate a time to speak I would be very greatful.

    Email: asiu@live.com
  11. Bisou

    Bisou New Member

    I have read SOOOO many stories on here about women starting BCP as teens and then having these problems later on, even when taking BCPs! I know the change in hormonal levels can cause hair loss, but I am just wondering if there are some long term effects to our hormones from taking BCPs so long. I started taking them around 14 or so for hormonal problems, and I am now 36. I just wonder if there's something that BCPs do to your body that we don't really know about!!!

    It seems like 90% of the stories have something to do with BCPs.