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24 y.o. & healthy. No birth control, hormone issues or deficiencies

Discussion in 'The Undiagnosed' started by tmoliver2300@gmail.com, Oct 12, 2015.

  1. tmoliver2300@gmail.com

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    Hi everyone. I've been reading posts for about a year now and decided to post my experience and possibly gain some insight.

    Like many of you, I was blessed with an abundance of thick unruly hair. My hair was my trait and defining feature.Almost a year ago, in Nov 2014, I applied a semi-permanent Ion Color brillance dye to my hair using a 20 developer ( I should've used a 10 but a chick at Sally's suggested I use the 20). I did not notice anything strange or un-normal about my hair after applying the dye. Approx 3 days later, I noticed a tingly, itchy feeling on my scalp that caused concern. I thought it was just a dry scalp caused by the irritants in the dye. A couple of days after that, I noticed the hair on sides below my temples was thinning. I immediately scheduled an appt. with a derm PA in town. I was assured repeatedly that my scalp looked fine and it was just contact dermatitis from the dye. I was prescribed clobetasol and told to apply to my scalp every other night. This did not help. I went back and received perscription for dermasmoothe topical and instructed to use it every night. This is when I was diagnosed with Telogen Effluvium and told that it would pass in 6 months. I used the topical for about a week and 1/2 and stopped after I realized it was not helping. I went back to the derm and was seen by the MD who prescribed prednisone oral which did not help. Ultimately, after taking a quick glance at my scalp, she suggested I stop with all topical treatments and allow my scalp to heal naturally.

    All of this took place in the time period between Nov 2014 - Feb 2015. Since then I've seen an allergist, a neurologist (re: the scalp nerve sensations), an internist, and a pain management doctor , and a gyro NP with no answers as to why my hair loss and scalp sensations continue. I am still experiencing all over diffuse hair loss, and nerve sensations on my scalp. I've lost 50% of my hair. At times my scalp is warm and tender in the crown. My hair does not shed so much, it mostly comes out when I'm putting it up, washing it, or manipulating it in any way. I typically don't loose my hair one by one, I have curly thick hair that tangles up in knots so there can be 10-30 strands that come out at once depending on the size of the knot. I have experience miniaturization, the hair that has regrown is much thinner than my normal hair.

    I have gotten bloods done 3 or 4 times in the span of a year. CBC was normal, but I did see notation about high absolute lymphs. My ferritin is at 73. I've never been on birth control and have always had regular periods. I'm contemplating getting my hormones checked although I have no other symptoms beside the hair loss and scalp sensations/warmth. Every doctor I visit tells me I'm healthy and the hair loss is just due to stress. I can't help but think something is being I overlooked, I just don't know what it could be.

    Thank you for reading. Any thoughts?
     
  2. JenVoy

    JenVoy Established Member

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    I'm sorry you're going through this. The worst part is not knowing when the shedding will stop, and why it's happening. I've had hair loss in 3 months almost equivalent to your amount of loss, while and you've gone through a longer period of hair shed and loss, with 50% loss. I've been tested for everything, including hormones. The only thing left is to get a scalp biopsy for piece of mind.

    If I were going through such a long bout of hair loss like you, I would test hormones, and get a scalp biopsy to rule out anything else. If anything it will give you a piece of mind. Have you tested your thyroid as well? Get it all done now so you stop wondering what could be going on. Good luck and keep us all posted!

    Btw, I also have scalp pain. Yesterday was the worst pain I've felt. I mentioned in another post here and a poster told me it could be SD. I know I did and still do have issues with seborrheic dermatitis. Could this be an issue for you? My pain has felt a little better since using clinical strength head and shoulders.
    I put my hair in a ponytail every day or pull it back which I believe could be a contributing factor in the scalp pain. I would imagine any strain on already sensitive scalp from hair loss would create the pain sensation.
     
  3. Bald eagle 1996

    Bald eagle 1996 Established Member

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    I too have curly hair and it comes out a little differently than those with straight hair. For me it creates tangles, whenever I feel a tangle I cringe because I know its shedded hair caught in there. I have scalp tingling, redness, itching, warmth etc. It seems to have gotten worse since I have started seeing regrowth, when the shedding initially started I didn't have those sensations in my head but now I do. GO figure! I think all that's left for you is hormones and scalp biopsy, that's what I am scheduled for next week. This whole hair loss thing has been like living in the twilight zone. Its like at times I can't believe this is happening to me, I NEVER thought this would be me. I NEVER thought I would be looking a wigs or toppers. I had tons of long super thick hair and I actually complained about it!! I would punch myself in the face if I could go back in time. This whole thing is so draining in so many ways. I have other health issues too and this isn't helping me cope with those either. Getting old just sucks and I am not even that old (at least I think 37 is still relatively young). I wish you the best and a quick recovery. Keep us posted.
     
  4. tmoliver2300@gmail.com

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    I appreciate your reply JenVoy. This has been very distressing. It's a struggle to hold out hope but I believe that I will be freed from this sooner or later. I am planning on getting my hormones tested soon.

    I have never had my experience with SD. My scalp actually looks pretty healthy for the most part. It tends to be more red in the crown area, where I have the majority of the tingling, burning and pinching etc. Like you, I suspect that me wearing my hair up everyday intensifies the sensations, but I do believe there is another cause.

    My primary had my TSH level checked back in the beginning of the year along with a CBC. It came back as a 1.920, which my doctor thought was "normal". I am looking to get the full thyroid panel checked out, including free T3 & T4 etc. I will be ordering the hormone tests and the thyroid panels online very soon.

    I am seriously considering a biopsy. I've heard different views about the reliability of them etc but I feel like it's my responsibility to check everything for a trigger.

    What the results of your hormone panel, and what specific tests did you get done if you don't mind me asking?
     
  5. JenVoy

    JenVoy Established Member

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    Any good news TMoliver?

    Here were my results I had posted in another thread. After talking to 2 doctors (including my own integrative medicine doctor) they checked out normal and fine.

    TSH 1.12
    T4 1.4
    T3 3.1
    T3 Reverse 22

    Estrodial 51
    Total Testosterone 29
    Free Testosterone 1.8

    My internist is also having me go in every 3 months to re-check everything to make sure my levels are rising where i'm deficient. She's checking the following:

    Iron total
    Ferritin
    Vitamin D
    B12
    Folate or Folic Acid
    Adrenal
    Cortisol
    DHEA
    Pregnenolone
    Iodine Level
    Protein
    Thyroid
    T4
    T3

    I'd also ask your doctor to test for these as well. My doctor was explaining that all of these; if you are deficient, can cause hair loss. I asked her if I had my ferritin rise to sufficient levels if the hair would stop...she told me not to look to just one to correct my hair loss. I needed to focus on all of these together to have any benefit in my hair loss stopping. Does that make sense?

    Just to also give you some more insight on everything...your trigger could've been a vitamin itself. If you're taking a multivitamin and eating something consistently that (for instance) contains Vitamin A. Like a luna bar, or maybe a smoothie with protein power. It may have more than one vitamin that may have triggered hair loss. I read a blog recently about this very thing. A woman was consistently taking her multi-vitamin, and then eating a luna bar in the morning. Constantly doing this for months on end and a month later her hair fell out like crazy. She experienced massive TE for a year. She was tested for everything, and found out her Vitamin A levels were almost at a toxic high.

    Just look to other things that you may not be aware could have triggered your hair loss, that you may do daily.

     
  6. tmoliver2300@gmail.com

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    Hi everyone sorry for the delayed response, I've been overwhelmed with life since my last post. I ordered my own hormone labs online and I got the results back on Friday of last week. My testosterone, free testosterone and DHEA were all flagged high. I've always joked about having a higher level of testosterone due to excess facial and chest hair (not freakishly excess, just weird random hairs) so I was not surprised to see that. I was concerned to see the high DHEA number, however. I plan on making an appointment with an endo in town to go over my numbers. The problem for me is the absence of any other symptoms. Besides the hair loss and nerve sensations, I feel great! I have no hormonal-related issues (regular period, ovulation), no known systemic issues, labs and blood test always come back in excellent condition, I've never been on birth control, and at the time that this started last year, the only supplement I used on a regular basis was 100% pure whey protein powder (no vitamins, herbs, etc.) I do not have baseline numbers for my hormones, which make it difficult to gauge what my "normal" is.

    Right now, I've decided to discontinue all supplements that I've been taking. The truth is I don't know what these things could have done to elevate my hormones, or hinder my progress. The only things that I will be taking moving forward are: capsicum oil + carrier oil (topical treatment for scalp) and spearmint tea daily to reduce the androgens. I've been taking both of these since this past Sunday, and I can already tell a difference in the amount of hair that I shed daily and the nerve pain. I'm also focusing on eating nutritious fiber and protein-rich foods to give my body a chance to restore itself.


    Test results:

    TSH 1.380
    Thyroxine (T4) 9.1
    T3 Uptake 32%
    Free Thyroxine Index 2.9

    Testosterone,Free and Total Testosterone, Serum 76 High
    Free Testosterone(Direct) 5.6 High
    Estradiol 179.6

    FSH, Serum FSH 7.4
    Follicular phase 3.5 - 12.5 Ovulation phase 4.7 - 21.5 Luteal phase 1.7 - 7.7 Postmenopausal 25.8 - 134.8
    DHEA-Sulfate 462.6 High
    Thyroxine (T4) Free, Direct, S T4,Free(Direct) 1.39
    Triiodothyronine (T3) 120
    Estrogens, Total 314
     
  7. JenVoy

    JenVoy Established Member

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    I'm so glad you're now getting answers to your TE. It does appear hormones are the culprit, right? Where do you go from here? Does your doctor or gyno recommend getting on a BC to help with your levels?
     
  8. labellavita1985

    labellavita1985 Experienced Member

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    Hey tmoliver,

    welcome to the forum. Sorry to hear about your hair loss! I know I speak for everyone when I see we can identify with and relate to you. Hair loss is devastating! But it sounds like you are getting some answers so that is great!! I also have elevated total testosterone (free testosterone and DHEA-S are within range.) I've been on birth control pills and Spironolactone since I found out. Is that something you are considering? I'm glad you are giving the spearmint tea a try, evidence indicates it can be very effective at reducing androgens.

    I just saw my OB/GYN NP yesterday, and her take on my testosterone elevation is that it's "significant." My total testosterone is 54. Range listed on my blood work is 2-45. Just thought you would be interested in this information. Unlike you, I have other symptoms, however, such as acne and irregular periods.

    And I totally agree with your decision to see an endocrinologist. That is absolutely the right decision in your situation, IMO. I am seeing an endo as well. They will probably want to check your blood sugar/insulin/glucose levels with a fasting blood test to determine if insulin resistance/metabolic syndrome is causing your testosterone elevation. If they don't, I would see another doctor. If your hormone imbalance is the result of IR/metabolic syndrome, Metformin can really help.

    I was wondering about the online tests you took, I am interested in doing this as well. I have had three bloods done but am missing a few readings such as Estradiol, thyroid antibodies, etc. I'm also due for another ferritin reading since I haven't had one in a few months and was still deficient last time. Can you please direct me to the lab you used?

    Thanks!
     
  9. tmoliver2300@gmail.com

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    Hi labellavita1985. Thanks for the info about your test. levels. I'm sure that my elevated test. and dhea-s levels are at least partly to blame for this chronic te I've been dealing with for the past year. I am going to schedule an appt. with an endo tomorrow morning. Hopefully I can get in to see her within the next couple of weeks or sooner.

    I ordered my tests from health one labs at: http://www.healthonelabs.com/. I've used them twice now- the first time to check ferritin and iron levels, and this last time for hormones. Just FYI- the hormone labs were a bit pricey- overall about $250. The good news is I haven't had any trouble with receiving my results on time and it's been an overall good experience.

    nes- I tried to reply to your message a little while back, but I had trouble posting on the site. My shed is TE- like, diffuse overall shedding. Hair density has decreased by at least 50% in the past year. Hopefully the endo can shed some light on what is really happening in my body to cause this persistent hair loss.

    I've been tested for b12- came out high, probably because was taking supplements at the time. Vitamin D is the only thing I haven't been tested for yet. I will order a lab for this when I can.
     

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