confused and distressed

Discussion in 'Looking For Advice (my story)' started by jay, Jan 26, 2010.

  1. jay

    jay New Member

    Hi everyone,
    I'm new to the forum - but have found some strength in reading the many stories here. I have been suffering from hair loss for 2.5 years since having surgery three times and experiencing blood loss in one of those instances. Since then seen trichologists, derm, endo, naturalpath etc etc and got so many different opinions. At the moment the derm is unsure as to whether it's chronic diffuse hair loss or AGA - (biopsy was indeterminate). So I have decided to get a dna test... results tomorrow hopefully. But this hairloss is really getting me down - social life severely effected and even suicidal at times.... Not sure what to do next spirolactane? laser therapy? I'm at my wits end and no one seems to understand (except a friend of mine with AGA who has been grappling with it for 8 years). Any ideas anyone? I am having life coaching in an attempt to be more positive about life - but doesn't seem to help much as I just long for my beautiful hair back. As silly as it sounds - it is important as a woman! I'm also getting tests done for PCOS ... as I said trying everything. Can see some new growth with the minoxidil i'm using but still losing volume... It's driving me insane. Just thought I'd share as I've read so many of your stories too... sorry for rambling but a lot to say I suppose :)
  2. Holland89

    Holland89 New Member

    Hi Sweetie,
    I'm new to this forum too. My hair loss started 7 years ago shortly after my father passed away, and oh how I wish I had the support that is offered here. I was 20 when it started and a junior in college--that's kind of the height of your social life, so I totally hear your pain regarding that. It's ok to feel like that though. Losing hair as a woman is traumatic and no one else can understand the pain and utter anguish that accompanies it unless they've gone through it. I too saw derms, endos, gynos, had scalp biopsies, numerous blood tests....all to no avail really. I even filed a for a leave of absence from college for my senior year because I just couldn't handle it. The thought of living with roommates (who were my closest friends too) and having them see me in the morning, or after the gym, or heaven forbid after the shower just gave me so much anxiety. My mother made a deal with me and said if I went to school and after 2 months I just couldn't take it I could come home, that knowledge allowed me to go and tough my way through. Anyway, the reason I'm saying all of this is because not my friends, family or any doctor really helped me and just listened. I didn't feel OK or heard by anyone until I started seeing a therapist. She made me feel totally validated in my fears, so I think your life coach is a good idea. If that doesn't work, maybe try therapy. It was an outlet and safe zone that I will never forget and always be grateful for. I don't know if this helps at all, but I Just wanted you to know that you were heard and that this is extremely hard.
  3. jay

    jay New Member

    Thanks for your reply. What treatment are you seeking re: your loss? have you got any sort of a diagnosis? Sounds like you're a lot stronger than me - but I too have had to take a month off work tp try and cope... Best.
  4. CFly

    CFly New Member

    Hi Jay,

    We are all with you in the struggle. It doesn't seem fair, does it? I believe all of our trials are there to teach us something, but this one is a hard one to justify. What am I learning by feeling ugly? My therapist is helping me with this, too, and I recommend seeing one if your life coach doesn't work out, like Holland said. It is easy to say that beauty is on the inside. I know that is true, and I wish I believed it!

    I have never gotten a definite diagnosis for my hair loss--mostly I'm ignored by doctors and friends. I hope you get a diagnosis that helps you understand what you're going through.

    I pray that you get answers and peace and your volume back. Until then, there is someone here to sympathize.

  5. jay

    jay New Member

    Thanks CFly - I appreciate your support. How long have you been dealing with this? Are you using any treatments at the moment? This has really changed my life and not for the better!
  6. CFly

    CFly New Member

    I was 21 when my hair first started falling out, and I'm 41 now. That is a heck of a long time--almost half my life. I feel like my hair loss is due to hormonal reasons. My dermatologist told me that the early 20s is a time of hormonal change for women, so that makes sense. I have had thinner hair since that first shedding, but it hasn't been too noticable until last year, when I went through another major shedding.

    I think last year's shedding was caused by a medication called spironolactone. I started taking it for the acne I got when I turned 40 (what fun!). It is supposed to suppress the testosterone that causes acne, but it is also used for hair loss. The meds caused my hair to grow back for a couple months and then start falling out like crazy. I have a hormonal doctor who thinks the testosterone was suppressed too much, which then screwed up my adrenals and thyroid. Needless to say, I am off that med.

    I am using rogaine and topical progesterone cream right now. I don't know how much the rogaine is working, but the cream seems to help.

    Reading your story, I hope you have a doctor that you can trust to listen to you. I know you had your surgeries and blood loss, but have they looked at all your numbers: thyroid, iron, sex hormones?

    Keep up the faith, Jay!
  7. jay

    jay New Member

    Hi Cfly, yep have had my iron, thyroid, checked and just in the process of getting my hormones checked for the second time as the endo thinks I may have PCOS.... suppose I'll wait and see. Have you got diffuse thinning or pattern? all the best for your fight against hairloss... also may be of interest to you there is a progesterone site (which you can prob google) I read up on it when sussing out PCOS! cheers
  8. CFly

    CFly New Member

    Hi Jay!

    I'd like to hear your PCOS results--it runs rampant in my family on the side with the bald women (as opposed to the other side with the thin-haired women).

    I have all-over thinning, though it is most noticable (maybe only to me) right in the front top. Since doing otherwise would be costly, I only apply the progesterone cream to that area and not my whole head.

    I re-read your first post and saw that you might try spiro. I like that it made my hair grow back in the beginning. If you do try it, be aware of how your energy is doing. Once I suppressed my testosterone too much with spiro, I got incredibly tired and depressed in addition to starting my crazy shedding. If I had known that spiro could do that, I might not have been on it for 3 more months before I realized it was doing that to me. (Yeah, I know, duh.) I think I saw that hair grow back in the beginning, and I put on my rose-colored glasses.

    Did you get your adrenals checked? A guy named Wilson wrote a really good book called Adrenal Fatigue. The stress that our bodies undergo (like maybe your surgeries) really affects our adrenals, and they don't bounce back without help. Just a recommendation for you!

    I'll look in to the progesterone site. Thanks for that info!

    Let me know about the PCOS when you get time. I'm praying for you!
  9. Holland89

    Holland89 New Member

    Jay - you apply the progesterone cream directly to your scalp??
  10. CFly

    CFly New Member


    I'm not sure about Jay, but I apply the progesterone cream directly to my scalp. It is an anti-androgen. One of my doctors seems to think that it was the testosterone that was making my hair thin (before the recent shedding), but I can't do the spironolactone thing again, because it suppressed my testosterone too much. This is all theory, of course, but shared by my endo and hormonal doctors. The cream seems to help.

    Let me know if more info on the cream will help you.

  11. jay

    jay New Member