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Androgenetic Alopecia Or Cte? I'm Seriously Losing My Mind.

Discussion in 'The Undiagnosed' started by dazedandconfused, Sep 1, 2017.

  1. dazedandconfused

    dazedandconfused New Member

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    Hi all,
    After weeks of reading through tons and tons of posts on this forum - I've decided to finally join myself to perhaps get some wise advice or words of encouragement from someone who might be going through the same thing. I'm on the verge of a nervous breakdown because of this. I'm sorry if this is too long.

    I'm a 25 year old mother of 1, and for roughly 2 1/2 years I've been dealing with what I believe to be substantial hair loss. Just a bit of history - my mother has very thinned out hair, she was never formally diagnosed with Androgenetic Alopecia but I can't imagine what else it could be? Almost 40 years ago she had a terrible miscarriage and developed Sepsis, the doctors didn't think she would survive. She thankfully did, but I can't imagine how traumatic that was on her body. Doctors said it was her thyroid causing her hair loss and excessive skinniness. So if someone asked if there is history of hair loss, I would have to say yes?
    Anyway - My son was born in January of 2014 - I gained a beautiful mane of hair during the pregnancy and I believe it also grew the longest I ever had it. Everything was fine and dandy - until around April of 2015, when I washed my hair in the shower. I was literally pulling out GLOBS of hair. I mean, they would cover almost my entire hands. I thought this was a bit strange, but since I've always had tons of hair I didn't think anything of it. I truly believed ''Oh, it's just my hair from the pregnancy falling out, no big deal''. Also at around this time, I finally finished breastfeeding my son. I thought perhaps I lost some nutrients from breastfeeding so long and perhaps my hormones were being out of whack because of it. Once again, not really taking much action.

    Towards the end of 2015, going into 2016 I wasn't losing globs of hair like I initially did, but I did finally begin to notice I was shedding. Whenever I would shower and wash my hair, a good amount of strands would come out. Whenever I brushed my hair, same thing - I'd have at least 10 hairs or more in my brush even though I lost a good 20-30 in the shower. Fast forward to now when I'm really doing everything in my power to prevent the shedding, it still happens. Some days it'll be less, some days it'll be more - but to me this is still NOT normal. I made my first dermatologist appointment in June of 2017, but I immediately regretted it since he didn't even check me thoroughly. He said he doesn't see anything wrong, didn't listen to me when I requested a biopsy and simply telling me to start up on some biotin and if I didn't see results to start on minoxidil.

    I went to an endocrinologist in August of 2017 and tested everything under the sun. Much to the young female doctors protest, this time I was much more assertive and got what I wanted. These are my results for what most people suggest to check for hair loss:
    • DHEA SULFATE: 294.6
    • FSH: 7.8 & LH: 9.5
    • HEMOGLOBIN: 12.9 & HEMATOCRIT: 38.1
    • Thyroid Tests: T-3, T-4, and Thyroid Stimulating Hormone (TSH):
    • T3, TOTAL: 120
    • FT4: 1.16
    • T4: 7.6
    • TSH: 1.17
    • IRON: 60
    • FERRITIN: 68.0
    • TOTAL IRON BINDING CAPACITY (TIBC): 407 (the reference range is between 225-390, which means this is high. I wasn't told this, I had to find it on my own)
    • And finally, VITAMIN D, which IS low at: 19.3

    I didn't feel that the endocrinologist took me seriously and neither did the dermatologist. I've utterly lost hope in doctors and I've felt hopeless in myself because of it. The endocrinologist said she has no proof the low levels of vitamin D can attribute to the hair loss.
    Nonetheless I began taking D3 supplements immediately. The only other therapy I did for myself was I began taking Dr Berg's hair formula for about 2 months now (https://shop.drberg.com/hair-formula-regular) and I can't really say if I see much of a difference, besides I might be shedding a bit less and my nails are stronger than ever before. The only time I see any ''baby hairs'' are when my hair is clean and air dried, but many of this ''new-growth'' appear so fine it's barely noticeable, some of them are wiry frizzy and misshapen. It's so strange - they look like some cheap plastic doll hair that went wrong during manufacturing, instead of straight, it's wavy! Is this a sign of miniaturization attributed to Androgenetic Alopecia? Or is this CTE? In about 2 years I've lost 50% of my hair. It's growing longer, but the volume stays the same and I see no signs of improvement, in fact I think it's gotten worse - when I let my hair down and fall naturally - there is now a space part on the back crown area of my head. I lost hair throughout my head, but it's mostly top and crown.

    If anyone has any advice or tips on what I should do next, literally anything at this point would help. I'm seriously depressed over this, I've been struggling with self-esteem issues and depression ever since puberty (13 years old) and I can't fathom losing my hair at such a young age. Below I have a few pictures attached - I'm sorry if they aren't the best of quality, but it's all I have.

    Thank you.
     

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  2. Deirdre

    Deirdre Senior Member

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    It seems like it is related to hormones because of the relationship with pregnancy growth and loss after. I have actually read that it is normal to lose 100 strands of hair a day which I am sure I do. I don't know if spironolactone might help as an androgen blocker, or a hair friendly birth control pill. You might add zinc. I have been using Rogaine foam for years now and it made a difference but took six months to see that it is helping. I use Toppik to add density. So sorry. This is really hard to deal with. I went to NYC to see Dr Redmond who was helpful although the Yelp reviews are very negative.
     
  3. Chelle7198

    Chelle7198 New Member

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    I can relate, although mine started with an illness and also came with a dry scalp. I got really sick and when I finally thought i was better I lost gobs and gobs of hair. and continued losing. 2yrs later got pregnant and about the 8th month it stopped.. I knew that was just related to pregnancy and not going to last. and I was correct. Hair stayed for the first 5mons postpartum it was wonderful. almost felt like myself and then it started all over again. I don't have insurance and when I did doctors dismissed my claims that I was losing my hair. my hair is very thin now I am 11mons postpartum. I am losing it just like i was before. It stinks..
     

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