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The difference in 4 months...

Discussion in 'The Undiagnosed' started by sunlit, Jan 6, 2015.

  1. sunlit

    sunlit Established Member

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    Honestly, if you've been thinning gradually over several years, don't seem to shed much and seem to have PCOS-like symptoms, it sounds hormonal and - I hate to say this - it sounds like it may be Androgenetic Alopecia. For your sake, I really hope not! But stress-related hair loss is usually a sudden TE with heavy shedding, from what I know. It sounds to me like you should get a second opinion.

    I don't have a hormonal imbalance - all my blood tests are normal, and I have no PCOS symptoms that I know of other than irregular periods (which could be caused by high stress and a low body weight). My dermatologist, too, originally commented it was unlikely to be hormonal because I "don't look like someone with a hormone imbalance". I'm thin, don't have a lot of body hair, etc. But when I saw him the other day, he said it was clear I had male pattern baldness, and so although all my hormones are normal, I have an abnormal over-sensitivity to them. It could be that it's the same for you - normal hormones, but your body is over-sensitive to them.
     
  2. NoodleHead

    NoodleHead Established Member

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    Thanks for your response sunlit :) Well if it's Androgenetic Alopecia, then I'm fine with it. I just want to know what's really causing my hair loss. It sucks not to know and it's confusing trying to find a treatment plan that works if you don't have a diagnosis :/ Another issue would be finding a doctor who would get me on the right medical treatment for my hair loss. I have been on minoxidil for two months and so far I see no improvement, and I see no difference in terms of the shedding(no dread shed). Makes me wonder whether I need a stronger treatment like birth control or some anti-androgens.

    Sunlit--please update us on your progress on Spironolactone. I would like to know whether it would be helpful for you or not. I know it's too soon to tell but I'm glad you're on a treatment plan. And are you using a birth control pill with the Spironolactone? Or are you using it independently?
     
  3. sunlit

    sunlit Established Member

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    I really hope it isn't Androgenetic Alopecia for you! But I completely understand how difficult it is not knowing - I felt so awful before I knew, I actually felt worse then than I do now because I was constantly researching and obsessing over the different things that it could be. Even though now I have the news I dreaded, at least it's a kind of closure and I can trust that doctors have got to the bottom of it and I'm getting the best treatment I can. Not knowing gives you no peace at all, there's no stress like uncertainty. Fingers crossed you find a diagnosis, answers and treatment soon!

    I'm taking the Spironolactone on its own, I'm not using any birth control pill (I've never taken it). Obviously it's too soon to tell re: the hair, but as far as the Spironolactone is going so far... the day after I started taking it I had HORRIBLE side effects - heart palpitations, chest pain, stomach pain, feeling faint etc - but ever since then it's been absolutely fine. The only difference is suddenly I need to drink a ton of water (I guess I shouldn't be surprised, as it's a diuretic).. I think the initial side effects might have been because I didn't realise it didn't mix with alcohol, or how many foods contain potassium.

    re: the minoxidil... I haven't ever used it, but I've heard it takes 3-6 months to see results, so maybe it'll suddenly kick into life if you keep with it! :)
     
  4. hairlosshelp

    hairlosshelp Established Member

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    sunlit, it's possible to have PCOS when you're underweight. I know one person who has PCOS but always had trouble gaining weight and is underweight. She has cysts on her ovaries and has problems ovulating so she hasn't gotten her period for months on end at some point. She had trouble with acne but has solved her problem using topical treatments. And miraculously she's had 2 babies! One with help of a fertility clinic. But she's never had facial hair and she lost some hair after the first baby but it's nothing drastic like anyone has mentioned on here. So it seems like you don't necessarily have to have all the symptoms but I'm not really sure what constitutes the diagnosis to be honest. Judging from my own blood test results it seems like they don't even really know what to look for. I guess since it's a syndrome and not really a "disease" it's looked at very differently. I think it's only really taken seriously when you have difficulty getting pregnant/miscarriages, which is what she had gone to the doctor for.

    I've always dealt with acne issues since I was 13. But I've actually never had acne this bad...starting around feb I was kinda stunned by the amount of pimples I got and the size of them and they just haven't let up. I'm 25 so I technically shouldn't be getting acne this bad. And as for the weight, I've gained about 35 lbs since November, mostly up to March and then it stabilized at my highest weight ever. It's hard to say if these are related to hormonal balance and went hand in hand with the hair loss or if they were caused by the hair loss since I've been dealing with depression and added stress since this happened. I know my blood pressure is so high right now as a result so it's like a double whammy. And it's obvious to me that there is a hormonal balance but ofc they won't do anything about this until something actually is going to happen beyond the "superficial" problems. But this also affects my chances of getting on birth control and Spironolactone, when if they just did their jobs and put me on these treatments during the initial diagnosis if those worked my life would be much easier. So I'm glad you found doctors that aren't just waiting for your health to deteriorate before they did something.

    For me what I'm trying to concentrate on right now is the weight loss because I don't want to get diabetes and I'm hoping that it will lead to a better mood and reduction of stress levels and that will help with my hormones and hair regrowth. With the depression and stress of the past 6 months it feels like a miracle that I was even able to complete my thesis/school and do well in it so at least my life hasn't been 100% ruined with my health, mood and appearance.
     

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