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Can Anyone Help Me With A Diagnosis?

Discussion in 'The Undiagnosed' started by amd, Jul 5, 2018.

  1. amd

    amd New Member

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    Hi Everyone...
    I don't know how I got here, and I am really struggling. I've been dealing with hair loss since the beginning of the year (the top, sides, temples), and still have no real diagnosis. My entire life I was always known as the one with the big crazy hair...everyone always commented on how much of it I had and how lucky I was. I am now 34 and feel like half of my hair has disappeared within the last 6 months.

    I've seen two dermatologists on 3 separate occasions and have had two rounds of blood work completed. Both dermatologists looked at me like I was crazy and offered up Rogaine and Spironolactone "if I wanted it". No one performed a scalp biopsy. I was never even given a diagnosis of Androgenetic Alopecia or TE or anything else (Neither of them even mentioned TE, I had to bring it up). I felt like I was pushed out the door. No one in my family is bald, or has really had any kind of thinning until they were much, much older. (And isn't Androgenetic Alopecia supposed to be gradual? I feel like my hair just up and disappeared overnight).

    About 5 months before I noticed the thinning I started taking Seasonique birth control. Once I noticed what was happening and did some research, I realized that could contribute to the hair loss and stopped taking it in March.

    My hair has always shed a lot since I had so much of it, and it took awhile for me to notice. I have hairs on my arms, shoulders, desk, chair, plates of food, everywhere literally all day long. I can pick loose hairs out of the ends of my hair at any given moment.

    Other symptoms include: sleeping a lot more than I feel I used to, zero libido

    My latest lab results came back with a few interesting items -- My vitamin D is below normal, my Iron is high and my Ferritin is only at 43. When I tried explaining to the dermatologist that the iron/ferritin numbers seemed wacko, she said they were normal and high iron is a good thing. I asked about Ferritin levels for hair growth being between 50-70 and she said no, I was normal. :/

    I've also been vegan for 6 years, vegetarian 3 years before that - so it seems weird to me that my iron is so high. Since March, I have been taking the following supplements: 5,000mcg Biotin, Mega Foods Hair Skin & Nails, and a B-12 with folate. I picked up some D3 spray tonight, so I will start that as well.

    Here are my lab results, if anyone has any insight, I would be SO appreciative! I'm at a complete loss, as I'm sure a lot of you are. My next appt is going to be with a GP who will probably have no idea and push Rogaine as well. I'm just not sure I'm up for that yet.

    T4: 1.66
    TSH: .838
    WBC: 5.5
    RBC: 4.78
    Hemoglobin: 14.7
    Hemocrit: 45
    MCV: 94
    MCH: 30.8
    MCHC: 32.7
    Neutrophils: 73
    Immature Granulocytes: 0
    Lymphs: 18
    Monocytes: 6
    EOS: 3
    Basos: 0
    Platelets: 149 **low, range is 150-379
    RDW: 12.5


    Glucose: 85
    BUN: 7
    Creatinine: .72
    EGfr: 110
    Sodium: 141
    Potassium: 143
    Chloride: 104
    Carbon Dioxide: 22
    Calcium: 9.5
    Protein: 7
    Albumin: 4.4
    Globulin: 2.6

    TIBC: 332
    UIBC: 160
    Iron: 172 **High, range is 27-159
    Iron Saturation: 52%
    Ferritin Serum: 42

    B12: 924
    Vitamin D: 24.5 **low, range is 30-100
     
  2. CEAD

    CEAD New Member

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    I went through the same thing when I was first trying to get to the bottom of my hair loss. I am not sure where you live, but where I am in Canada they would not give me a scalp biopsy. I had to pay to see a private hair loss specialist and pay for it out of pocket to get my formal diagnoses.

    Here is some info I have found out over the years, hopefully it can be of some help:

    Androgenetic Alopecia can be so different for everyone and it not always gradual. My hair is thinning the most on the sides and front hairline and my hair loss started and happened very quickly (I had extremely thick hair my whole life and what seemed like out of nowhere started loosing between 200 - 300 hairs per day) and I lost the majority of it in about a year. In my case it was because I have Androgenetic Alopecia and TE, the hair specialist I saw explained to me that that you can have a genetic predisposition to hair loss in your family and taking high-androgen birth control pills will unmask it. Starting and stopping BC pills can also cause TE. I never took BC pills until I was formally diagnosed as part of my treatment plan so I am an example that Androgenetic Alopecia can happen whether you take hormonal Birth control or not.

    Trying to get your blood test results interpreted on here may not be super helpful as we are not medical professionals but what I did was go to see a Naturopathic Doctor when I felt I could not get answers from my main Physician and Dermatologists. You can bring in all your blood work and they can help come up with a plan to treat any deficiencies you may have. I know low VIT D levels are knows to cause hair loss in some people so that it definitely worth checking out. Iron deficiency can mimic Androgenetic Alopecia in some people, I have been a vegetarian for over 10 years and started this process with very low iron.

    Here are the blood tests my hair loss specialist ordered for me:

    If you have acne or increased facial hair you should try to request tests for DHEAS (hormones from the adrenal gland), androstenedione (hormones from the ovaries) as well as free and total testosterone and sex hormone binding globulin (SHBG) are ordered. Women with irregular menstrual cycles may require blood tests to evaluate polycystic ovarian syndrome including tests for LH, FSH, DHEAS, androstenedione, prolactin, estrogen, free and total testosterone and 17 hydroxyprogesterone (17OHP) and sex hormone binding globulin (SHBG - See more at: https://donovanmedical.com/hair-blog/bloodtests#sthash.BZyWZryf.dpuf

    It is hard to get Doctor's to listen because at the start of hair loss when it is not yet noticeable people tend to not believe you that it is happening. I would recommend seeing another Doctor if you can.
     
    Farrah711 likes this.
  3. Farrah711

    Farrah711 New Member

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    Hi there
    I live in Canada also.
    I ended up paying for a hair analysis myself.
    There is one Derm here in Barrie.
    No diagnosis but she did give me an appt for a scalp biopsy. I am starting to wonder if I should have this...I heard someone on this site say hair didnt grow back where it was done.

    I have appt with a Natpath on wed
    175$ first appt.
    Thanks for listening.
     
  4. Jtilly

    Jtilly Member

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    Hi CEAD,
    This thread is kind of old so hope you see this... You mentioned that you are on birth control as part of your treatment plan. May I ask if birth control is helping your hair loss?
    What birth control are you on?
    Why are you on birth control as part of treatment plan?
    Do you still see naturopathic doctor?
    Has that helped?
    Have you ever tried PRP?
    Sorry for all the questions.
    I ask because I have recently been diagnosed with TE and androgenetic alopecia.
    I have also been told I am peri menopause with hormones wildly fluctuating. They tried to put me on bio identical hormones but I had to come off after 7 weeks due to severe reactions to them.
    Now they are recommending birth control, Yaz to be specific, but I am terrified, especially because of my reaction to bio identical hormones.
    If it would help then I want to give it a shot but I’m so conflicted.
    I’ve also been considering a naturopath doctor but I honestly don’t even know what they can do for me.
    I am currently on 25mg of spironolactone, trying to work my way up to 50mg and perhaps even 100mg. Even though I don’t have high testosterone or DHT levels, this is what my dermatologist put me on..
    I have done one treatment of PRP/CRP so far.
    Just trying to decide if I should start birth control at the age of 40 for peri menopause.
    My hair loss came out of no where and VERY fast! 5 months!
    Any advice would be so much appreciated!!
    Thank you!
     
    Farrah711 likes this.
  5. Aragon

    Aragon New Member

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    I wonder if your ferritin is low because your iron is so high? I’m in the same boat as you as far as type of loss but no legit diagnosis. My iron has not been checked yet though.
     

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