Mourning my hair - my story

Discussion in 'Looking For Advice (my story)' started by seashore, Mar 14, 2010.

  1. seashore

    seashore New Member

    I have always had incredible hair; it was my outstanding feature. Up to 3 months ago, it was long, thick, and blond. Friends and hairdressers would tell me, "I wish I had your hair". And I took it for granted... Then I started to have heavy shedding. I didn't think too much about it, although I noticed the hair covered my carpet. I had taken medications that had led to hair loss, and my hair grew back just as full as before. In addition, I had so much hair I didn't notice. However, the top of my head seemed to be losing the most. I also was complaining about a burning sensation on my scalp. I asked my internist if my hair looked thinner - "No, not at all."

    I went to the dermatologist who said it was telogen effluvium and psoriasis (my scalp was red). She gave me topical cortisone, which cleared up the redness - still the hair fell out. By this time, I knew something was really wrong. I could see my scalp - nothing was growing back, and my hair was so thin I could barely make a ponytail. When I went back the next time, the dermatologist said it was androgenetic alopecia, prescribed Rogaine and said "Go for it!" She did not know what brought it on nor did she do any diagnostics (and she's been voted a top dermatologist).

    My sister, who is 4 years older (I'm 59), has been suffering from female pattern hair loss for 10 years. I used to think, "I'm so lucky I don't have to worry about my hair, I have enough hair for 2 people." Not any more. I don't have enough to cover my scalp. My mother told me it made her sick to look at me. My sister said she didn't want to talk about it. My therapist said "Get a wig."

    I came to this Forum because I feel alone, scared, angry, and sad. I miss looking in the mirror and seeing my wonderful hair. I can't look at photos because they all show me with a full head of hair. I feel that I've gone through a life change. I ask, "Why me? Why so quickly? What can I do? How do I cope? Who can help me through this?" I'm hoping I can find support and some answers here.
  2. KVC

    KVC New Member

    Dear Seashore,
    Just looking around this website is bound to give you a great deal of comfort and support. We are all going through this, some of us gradually, and some of us more suddenly. It is perhaps one of the most difficult things I have had to accept. Even my mother, who had a double mastectomy at age 30 says to me, "I am glad that the defeminising experience in my life can be covered by clothes."

    Of course, by no means am I comparing this to cancer. But the loss of womanhood is certainly comparable.

    I can provide you with paragraphs of consolation and share my emotional ups and downs with you, but for the moment, we are going to sit together and devise a plan of action. This has JUST begun to happen to you. My hairloss was so diffuse and gradual, and I was so young when it first happened (14), that by the time I eventually took action, a lot of my follicles were so miniaturized that they were virtually dead or unrevivable.

    I have just read your age, so I am presuming it is more a hormonal imbalance that is causing your hair loss. You NEED to get these tested out with a blood test: check all your male and female hormones. If the female hormones are on the low side, perhaps they can be supported naturally (Phytotherpay) or synthetically (hormone replacement). If these are in check, it is still very likely to be androgenic alopecia.

    Yes, your only concrete tool is Minoxidil, and I do not not know how effective that will be, but use it consistently and give it a fair shot. Like I said, you are still at an early stage of your miniaturization. Also, try and get a hold of Minoxidil 4-5%...this concentration is usually recommended for men, but many women including myself find that it is more effective than the 2% solution.

    Secondly, I am not sure if you have read the PRP posts that Admin has put up. Please look into this procedure. It will give your hair its vitality back, which in itself will give a fuller appearance. PRP to me, sounds ideal if you are at the early stages of hair loss. It is currently performed in Florida by Dr.Greco as well as a variety of other physicians across the US, but I believe his approach is the most thorough (I have done a lot of research into this as I am looking to get this done, so ask me anything you might want to know).

    The Hairmax Laser Comb is another option. I have been using this for the past 3 months now and I'm not going to lie and say it has grown me back an afro. But, after going through a serious case of Telogen Effluvium, combined with my existing tendencies towards Androgenic Alopecia, the comb has at least kept the strength and good appearance of my current hair. Despite having lost so much over the past year, I find that when I wash my hair, and use the comb right after, once it dries it has a much thicker appearance. Of course when it is wet, I can see the extent to which my hair has regressed and it is depressing. But the comb is helping me hide this from the world, temporarily at least.

    Last thing: I am, somewhat obsessed with hair loss, and more importantly, solutions. There are new techniques coming along every year (like PRP) that have the potential to make this problem go away entirely. It will take a few years, but things like hair cloning etc are already under way. Check this new study out on ICX-TRC hair regeneration:

    When I read about these things, I feel hopeful. Don't lose that hope, it's the only thing that will get us through this.

    If you have any further questions, contact me.
    Take care of yourself.
  3. seashore

    seashore New Member

    Thank you, KVC

    I wasn't sure I'd get a response, and am very grateful you replied with such good information and support.

    After my visit to the "Go for it" dermatologist (she's a waste of good hair), I made an appointment with my endocrinologist. Given my diagnosis was androgenetic alopecia, it just made sense. I was prepared for the same dismissal I received from the dermatologist. Imagine my surprise when she actually looked through my hair and read my chart! (Low expectations?) She noted heavy hair loss on the top of my head, moderate on the sides. She also knew exactly what blood tests I needed (iron, hormones, etc.). Reading my chart, she found out that I had complained more than a year ago about hair loss, but she had thought it was an increased synthroid dose (that was later decreased - thyroid is normal). Interestingly, I had stopped taking Femhrt - cold turkey -about 2 months before, and I'd been taking it for 5 years. So you are on the right track! The physician recommended Rogaine and biotin. She did not say it was conclusively AA; however, since my sister has the same thing, it looks more genetic. I have had bouts of hair loss in the past, all medication-related and with full hair growth. This one is very different.

    How did you find out you had miniature follicles - through a scalp biopsy with a dermatologist? Is that how you find out if hair growth is viable? How helpful was the Rogaine, and did you go through a shedding with it?

    I did my research and noted the therapies you mentioned. I live in South Florida, and there is a doctor that performs PRP here, but Greco is supposed to the best. I've heard about the Hairmax comb - glad you're getting results. I also saw that U of P is on the forefront of hair loss therapy (and I was their guinea pig for Retin A way back when), but there's a year wait.

    Time to take my hairnet off . I wear it at home so I don't gaze too long at my scalp. Thank you again for your response. It helps - alot.
  4. KVC

    KVC New Member

    Hi Seashore,
    I'm glad you went and saw an endocrinologist - I do find them significantly more helpful than dermatologists when it's AA and not TE.
    I am totally unfamiliar with Thyroid-based hair loss - so you are beginning to think it is coming off your medications completely? What has that done for your Thyroid blood work? You are probably right, given your sister's case, that it is AA, perhaps exacerbated by going cold turkey on the Thyroid meds. I really wish I could help you more on your diagnosis!

    In terms of my miniaturization - well, I didn't need a biopsy. From the ages of 12-16 (this started happening to me when I had my first period but only became noticeable at age 14), my part had widened so much and it never grew back. I presume the lost hairs there had thinned to the extent that they were invisible, and now they are definitely dead. Thinning hair will fall out and regrow wispily for a max of 1-2 years, some derms say 4 years, but I definitely saw these hairs become virtually invisible by the age of 14.

    I went on Diane 35 which controlled my situation when I was 16 - no new hairgrowth though, just stabilization, even though my testosterone was within bounds as a result of the pill.

    The Rogaine - my opinion on Minoxidil is very strange. I don't want to go around saying it's bogus, because it has helped many people. My brother, who also suffers AA, always tells me that a week without minoxidil and his hair is totally unrecognizable. Just keep your expectations low, and act early. It might save miniaturizing hairs from getting even thinner - though I don't know that it will transform these hairs into thick long ones.
    I have been on so many treatments, from the pill to a shop's worth of supplements, that I cannot identify the individual contribution of Minoxidil in helping me stabilize my situation. I know that it hasn't done any harm though - and no, no initital shedding with it! It is really not that strong.

    If you live in South Florida, please go to Dr.Greco!! I live in Europe, which is why I have had such a difficult time trying to locate a doctor in this vicinity. The only one that I could find that uses a similar technique to Dr.Greco was a man in Italy who charges 1,500 euros, or 2000 dollars. Double the price than in the States! But yes, Dr.Greco uses an extra "protein matrix" and is really the go-to person, especially for someone who lives in Florida!

    I think that Hairmax + PRP + Minoxidil is definitely a good combination to hold on to the hair you have, at least. I know that doesn't sound like the brightest outcome, but trust me, you get to a point when you start losing even MORE hair that you just long for the days of early thinning.:(
  5. seashore

    seashore New Member

    Hair today - gone tomorrow!

    If I didn't have my sense of humor, I'd be pathetic. I just finished working out and my trainer said, "Oh everyone asks about you and your long thick beautiful hair." I almost attacked her. When I told her 60 percent is gone, she said, "It'll grow back!" It's hard enough to deal with little hair, let alone those "good-intentioned" people who say stupid things.

    By the way, the pill that I stopped using was Femhrt, a hormone replacement for menopause. I'd been on it for 5 years - that's usually the max.

    I think I've been fortunate (up til now) in that my hair loss has not been noticeable. With the last shedding, however, my hair loss became quite apparent (as my mother said, "It makes me SICK") and impossible to conceal. I'm dreading meeting my friends tonight. Last time they saw me (about 2 months ago) I had enough hair to hide my condition. C'est la vie.

    Next on my schedule...A new dermatologist and follow-up with the endocrinologist. I think I'm getting the hint - try the Rogaine, what do ya got to lose? (more hair!)

    It sounds like hair loss runs in your family. What's strange is that my mother and grandmother have/had full heads of hear and my father is partially bald (partial combover).

    My therapist says I need to find a new identity besides having beautiful hair (and for this I pay her?) But she's right; I did define myself by my hair - that was what made me unique. I just got out of a very long relationship (over 10 years) and worry about being attractive.

    Oh well, gotta go and meet those friends...:cool:
  6. Georginajaneb

    Georginajaneb New Member

    I started losing my hair at 20. I’m now 25 and have lost 70% of my hair. You’ve had your youth. Imagine what it’s like being a young woman looking 59, rather than actually being 59 and looking 59. Gain some f**king perspective.
  7. iloveeshoes

    iloveeshoes Member

    Looks like you're the one who needs to gain some perspective. Your comment is really immature with a lot of misdirected angry. A woman losing her hair at ANY AGE is devastating. Your loss of hair at 25 is no more crushing than a woman at 59 who always had thick hair and is now down to less than half her density. She doesn't feel any different than you. So because she's 59 she suppose to have 3 strands of hair? Women in their 50's and 60's go through so many life changing symptoms during menopause and, then we have to subject ourselves to losing our hair too! Not every woman over 50 loses their hair, so of course the OP is frustrating that it's happening to her. There is more hope for a young person gaining their hair back than someone over 50. Understand, this is devastating no matter what the person's age, so please be respectful to those who shared their pain-filled experiences, because they are just as frustrated, concerned and hurt as you are about losing their hair.