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Eggplant's updates [pics!]

Discussion in 'The Undiagnosed' started by eggplant, Jan 25, 2015.

  1. eggplant

    eggplant Established Member

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    Okay I decided to just make a single official thread for myself to try and stick with. And I've got some pics for y'all to try and diagnose or give any feedback on. I noticed my hairloss (or well lack of hair growing) in the Fall of 2013. So far no slowing.

    I took these today for your viewing horror. Although I think I have loss all over, it's definitely the worst along the crown (which of course worries me that it's Androgenetic Alopecia), so that's where all the closeups are from.

    IMAG0474.jpg IMAG0475.jpg IMAG0456.jpg IMAG0463.jpg

    These last two are the same picture. I just cropped it so you could see a snippet of it at the full size:

    IMAG0452.jpg IMAG0452a.jpg

    And to recap my situation:

    - Noticed the hair loss (or, well, lack of hair seeming to be growing) in Fall 2013.
    - I have an endocrine called Congenital Adrenal Hyperplasia which results in excess androgens. I have the "mild" form of this. I've been treated for it since I was a teenager (29 now) and been on spironolactone (currently 50mg daily) since then.
    - When I saw my endocrinologist in March 2014, she said my "numbers were normal" and that the hair loss wasn't caused by my condition (I'm not so convinced). She did put me on a birth control pill, saying that would help with any additional excess androgens (nortrel 7/7/7).
    - Saw my GP in June 2014. He believed me and said he could see the hair loss on exam, which was good. Said to take iron and biotin and ran blood tests. My iron (ferritin) was low (9.9). Did the iron/biotin. No change.
    - Saw a dermatologist PA in December. He listened and said he thinks it's a combo of the CAH + recent stress (I had a death in the family Feb 2013) + poor iron. I'm skeptical but hopeful that he's right. He looked at my scalp under the big magnifier and said it looked "white and healthy". More blood tests. Said to take ferrous sulfate 325 twice daily and Vit D 2000 units daily. I need to go back for more bloodwork, and I have a scalp biopsy scheduled for March.
    - PA was open to increasing my Spironolactone, but said I should go through the endo as this was his first time seeing me.
    - Currently am playing phone tag with the endo.
    - No history of hair loss in either parent. In fact, my maternal grandfather had a full head of hair all his life.
    - By now I think I've lost at least 60% of my hair. I used to have tons of it.
     
  2. mycurlyhair

    mycurlyhair Experienced Member

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    You scalp looks so nice and clear! Wish mine did! ;)
     
  3. janedoe

    janedoe Member

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    I'm no expert and quite new to this, but I did a lot of reading lately and I would say that doesn't look like Androgenetic Alopecia. You don't seem to have anything that would indicate it (except for losing hair mostly at the crown).

    You've got one hair growing out of a lot of follicles and that's not good BUT I've read a lot of times that that's what happens in TE/CTE quite often - the hair is falling out and for some period of time nothing new is growing out. That's how you can have less and less hair while not really loosing a lot of them. You don't seem to have miniaturization (all hair are the same colour and thickness).

    Your ferritin was very low. How is it now, did you test it? The norm starts with like 20, but really it should be over 70. What kind of supplement were you taking for it before? I never realised before, that you actually need to take a lot more that RDA of iron/vitamins to get rid of the deficiency, and regular supplement is not gonna do it. Well, to be honest, I never thought of that before I realised it could be affecting me.

    If the death in the family affected you a lot, that could indicate TE/CTE as well.
     
  4. eggplant

    eggplant Established Member

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    These were my iron results from December:
    (edited to add the units)
    iron serum: 143 mcg/dL (normal)
    total iron binding capacity: 475 mcg/dl (HIGH)
    transferrin saturation: 30.1% (normal)
    transferrin: 339 mg/dl (HIGH)
    ferritin: 15.2 ng/mL

    The ferritin was still low (but that was only after getting a little iron in a multivitamin -- hopefully the ferrous sulfate 325 twice daily with blast it up).
     
  5. janedoe

    janedoe Member

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    In what units are those results?
    Check that out:
    http://australianprescriber.com/magazine/20/3/74/6

    I didn't have the time to read it properly but to me it looks like you're iron deficient.
    Don't worry at all that the iron you were taking didn't help, wait what happens in the next weeks/months after taking the stronger supplement.
    What did your doctor say?
     
  6. eggplant

    eggplant Established Member

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    Oh yeah I'm definitely deficient. From what I've read, low ferritin alone is often enough to be considered deficient.
     
  7. echo

    echo Member

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    I don't have anything helpful to add, but your hair could be mine, because mine looks almost the same (though I do believe you have more hair than I do at this point.) I know how you feel. :ermm:
     
  8. longingforpeace

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    My hair is similar to this too although I shed buckets. My part is astonishingly somewhat intact but I'm receding from front sides and especially underneath. No clue why the underside of my hair wanted to leave too..most people report this area as largely unaffected and I was told by one derms she was fairly certain I had Androgenetic Alopecia. Nope. Don't believe it. I secretly dream if I actually find out what's wrong with me one day emailing her and telling her she was wrong and my hair is growing back. I don't know why but that would give me great satisfaction lol
     
  9. mycurlyhair

    mycurlyhair Experienced Member

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    I think some quick and some slow. Just like LPP.
     
  10. eggplant

    eggplant Established Member

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    update: I had bloodwork at the end of February and my ferritin is now up to 35.7 (ng/mL). Haven't noticed any changes in the progression of the hair loss and lack of regrowth though.
     
  11. eggplant

    eggplant Established Member

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    Update: I had my scalp biopsy today. Results in 2 weeks. I'm not particularly hopeful. Also I need to call my endocrinologist again and try once again to see if she'll increase my Spironolactone dose because the derm prefers I go through her. (I tried this back in January and ended up playing phone tag with her for two weeks and she never responded to my message through her electronic system and so I got so stressed I gave up and just had to settle for a normal refill because I ended up running out. I really want to get a new endo but I worry about the wait and and in the meantime I just know she's going to tell me I'm about due for another appointment so I should just come in again before she'll change anything. Sorry for the ramble, it's just that the whole thing is more complicated than a simple phone call and I'm stressed about it.)
     
  12. Ruth

    Ruth Established Member

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    Eggplant. I was wondering how you are doing and what the results of your biopsy were
    Hope you had good news
     
  13. eggplant

    eggplant Established Member

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    Hi thank you for the encouragement.

    I got my test results today. The biopsy shows TE.

    Which is good news but I'm a bit surprised because this has been going on for over a year. I think it must be CTE. I'm still nervous because it just keeps continuing and getting worse. Derm says it should resolve in a few months but ... yeah... it started a while ago and hasn't resolved.

    But still good news I suppose.
     
  14. Ruth

    Ruth Established Member

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    That is good news!!! At least it is not progressive and your hair can get back to normal. Even if it takes time, it is still good to know it is not Androgenetic Alopecia. Knowing it is not Androgenetic Alopecia will also bring your stress levels down, which will be good for your recovery. Congrats
     
  15. eggplant

    eggplant Established Member

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    So latest update is .... the hair loss continues.

    I've been on the same high dose of iron since January. Anyone with TE who can tell me how soon they saw a turnaround on high iron? Because I'm really thinking it's not iron that's causing this problem. Not even sure it's really TE. Especially with my history of the excess androgens due to Congenital Adrenal Hyperplasia. I've also developed more and more chin hairs. I wonder if my body has become more sensitive to the androgens. In the meantime I finally made an appointment with a new endocrinologist for the end of August because I've disliked my current one for years, but I might give another go at calling my current one and seeing if she'll increase my dose of Spironolactone (I tried this past winter and played phone tag and got no answer from the patient email system and finally gave up). I really wish one of these people would up the Spironolactone so we can at least test it but ofc it's like pulling teeth because the derm wants me to go through the endo even though he says he can prescribe Spironolactone for hair loss.

    Sorry I'm kind of just rambling but I know folks like to compare notes against others so I thought some of this info could be helpful. And certainly if anyone can give feedback that would be great. :D
     
  16. mycurlyhair

    mycurlyhair Experienced Member

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    What was your ferritin when you started the iron and what is it now?
     
  17. eggplant

    eggplant Established Member

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    My thyroid is normal (primary tested it last summer). I've always had issues with acne -- probably related to the CAH -- I never really outgrew it.
    Summer 2014 - 9.9 (after that I started taking a small dose of iron that came in a multivitamin)
    December 2014 - 15.2 (after that I added in 650mg a day in the form of 2 325mg of ferrous sulfate)
    February 2015 - 35.7 (I've continued on the same dose as above since then)

    I'm due to go back for more bloodwork this month. I realize those numbers do look pretty bad, but I'm skeptical that this is just an iron thing. I've had zero regrowth.
     
  18. mycurlyhair

    mycurlyhair Experienced Member

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    That did go up quick! Mine is at 4. I dont go back for a few months though. :( I wonder if the different iron pills work better. I hope you find answers! They say it should be 40-70 for regrowth though,right?
     
  19. eggplant

    eggplant Established Member

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    Ugh. So the hairloss continues. My latest bloodwork has my iron in the 50s so no issue there. Called the derm office because I really think this is androgen related. Nurse called back and said derm said to take this Inneov stuff that's supposed to help with hair thickening and make an appointment for 3 months later. I mean..... really? The problem is that the hair isn't growing. It's 180 bucks for 3 months on amazon too. Anyone tried this stuff?

    Also on the downside, while i have a new appointment with a new endocrinologist in a couple weeks, I just got a new job and the hours conflict so I'm afraid I'm going to have to cancel it (which will mean I'll have to wait about 3 months for a new appointment). I start Monday and I'm just praying I can work this out and not miss the appointment because I'm concerned that permanent damage is being caused here.
     
  20. fleur1979

    fleur1979 Experienced Member

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    Hi eggplant,

    sorry to read you are still shedding.

    I heard ferritin needs to be around 70 for at least 3 months for healthy hair.
     

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