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What I Wish I Knew A Year Ago... Mthfr+autoimmune+anxiety=hot Mess

Discussion in 'Women's General Hair Loss Discussions' started by Frustrated, Dec 11, 2018.

  1. Frustrated

    Frustrated Member

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    I am not sure if there's hope for us. I'm trying to just adjust to "well this is my new hairline"... it's very hard. I have a widow's peak that seems to be thinner and thinner, and everytime i wash my hair the scalp kind of peels there :( i think if there is hope it's time and resetting my system and scalp to what it was before the medicated shampoos and the supplements. And leaving it alone lol!! I've tried to stop staring for growth, so I'm not sure about my regrowth. I stopped dying about seven months ago and just stopped having scalp pain entirely with no recurrence about six weeks ago. So im hopeful this is a good sign but who knows anymore?!
    I'm done messing with supplements. I'm going to leave it alone and see what the next few months brings! Stick with my every other day washing and clips. And try to keep my hands off of it :)
    Spring gives me sunshine so my vitamin d should rise soon. Hoping that helps too.
     
  2. TinaM1968

    TinaM1968 Established Member

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    I use to have the scalp pain too. I think a lot of it was stress it stopped about a year ago and the minute I stress it starts but thankfully I haven’t had that i a very long time. Trying to accept thing is hard just when u think you can live with it it gets worse like overnight. I have the widow peak thing too one spot right up front I’m hoping my body resets as well and maybe just maybe I have have a semi normal life again. Just to look normal and be able to pull my hair back again would be nice. My d is low too but I refuse to supplement any more I also think other people’s “optimal” levels aren’t ours my ferrrin was low 5 years ago so I worked at bringing it up everyone said that was the problem well no I don’t take iron anymore for over a year and now my ferrrin is 195! And I can’t seem to get it down. I hate drs I blame a lot of this on them
     
  3. Frustrated

    Frustrated Member

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    Agreed about the doctors! You're also the only person with hairloss like mine so we obviously don't have a "common" type. And when i say i can't take their pills they think I'm either crazy or full of it. And that's all they have to offer. I feel frequently like if i could figure out why i could solve it. I've spent two years trying to figure out that why. No answers. From taking with you sounds like the mthfr is a primary problem here. Now just have to figure out how to fix that lol!!!!
     
  4. TinaM1968

    TinaM1968 Established Member

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    Wanna hear something coincidental? My husband started looking hair about the same time it did. I always thought that was strange. He is in denial lol or just doesn’t care. He’s a couple years older then me and losing hair all over etc his stopped growing too. His use to grow super fast and curl at the ends. Not any longer doesn’t look mpb either. But since he doesn’t care I guess there no way to compare any tests to see if we have something in common. I also know sugar is an enemy for hair too I now started watching and reading labels for hidden sugars
     
  5. TinaM1968

    TinaM1968 Established Member

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    Yes I swear you and I are identical! I’ve searched so long for someone like me and there is NO ONE. Tired of hearing from everyone it’s in my head and pushing more supplements. I told them I react differently them normal people. One naturopath said oh the mthfr gene only effect b vitamins. No it effect how you body detoxes and absorbs and process things. I checked into the mthfr gene omg it’s comlicated! Hard to understand it all but I did gather that much
     
  6. TinaM1968

    TinaM1968 Established Member

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    In my research of the mthfr mutation and it’s connection, they all said it has no impact on hair. I don t believe that anymore. I did find someone but she did have the bad one like us she had 1277? Or something like that any way she had temple loss but also had hashi and on thyroid meds since she was young but she was able to regrow her temples but that’s where the similarities in our hairloss ended. She didn’t have the “bangs short non growing fringe” at the temple and front or breakage. But maybe there is hope if we can figure out what is causing our issues. Did u happen to see the pictures I posted of my hair last week showing the “bangs” just was wondering if your looked like that
     
    #46 TinaM1968, Mar 16, 2019
    Last edited: Mar 17, 2019
  7. Frustrated

    Frustrated Member

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    I didn't see your pics Tina and I can't seem to find them! Where did you post?
     
  8. TinaM1968

    TinaM1968 Established Member

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    YeS that’s like mine. Mine looks worse then your but I’ve been longer in my journey then you. For me I started noticing the “bangs” about 3 years ago, and I get the deleting it. I deleted mine too from here I just hate seeing it in pictures
     
  9. lostforwords

    lostforwords New Member

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    Hey frustrated!
    I was reading your whole story and I felt as if I was reading my own! I've been down every path and road with the vitamins that cause me to shed, certain foods...Wheat, Almonds and bluberries to name a few. I went to promethease and low and behold I have the Mthfr gene 2x as well. Wtf??? lol
    I just wanted to let you know that you are not alone...hugs xoxoxo
     
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  10. Frustrated

    Frustrated Member

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    Crazy isn't it? Very hard to explain to doctors, etc. "I can't methylate" and "vitamins make my hair fall out" lol! I wish more research was done on this connection, for sure there is one. Just here on this board there are 3 of us and this is a small sampling!
     
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  11. TinaM1968

    TinaM1968 Established Member

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    So hard to get help isn’t it? Even my husband just can’t understand I can’t take vitamins like others. He would always just say take a multi I try now to take nothing but it’s hard to get what we need once we are depleted from just diet
     
  12. sleepywaif

    sleepywaif Member

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    hi all
    i do not have an AI disease...(or not yet?)
    but my c3 c4 have tested out of range low (like someone with lupus in a flare) and i thought it was maybe a mix up but then i tested a few weeks later in a completely different lab and my c3 c4 were at the very bottom of the range.
    have you guys ever had a c3 c4 test???

    i'm interested in how a suppressed immune system causes hair loss (from stress, AI disease etc) but i'm like too exhausted to research it. trying to read about anything related to the immune system..i'm just too dumb for it. i also had giardia (intestinal parasite for ~3 years and it KILLED ME)

    ive had 24/7 neuropathy in both my arms/brachial plexus since 2009 but i also i have hypermobile ehlers danlos syndrome so i used all of my energy to research that. it's possible i have sjogrens??? or small fiber neuropathy. but those require expensive biopsies.

    i treat my body like i have an AI disease. i eat extremely healthy and lie in bed all the time. it helps.

    taking hormones scares the crap out of me. i took dianette (like a more extreme yaz) from 16-21 and it's one of the biggest mistakes of my life. in addition to a billion abx i took for acne.
    i'm 35 fwiw.

    i drink waaaaaaaaaaaaaay too much coffee to combat the brain fog. i need to quit :(

    only weird bloodwork i've gotten
    LOW total iron binding capacity (abilitiy to absorb iron) despite having ferritin in the 20s (it's always HIGH tibc and LOW ferritin. i'm an anomaly)
    bottom of range ft3 (high tsh, normal ft4)
    i havent had many sex hormone tests but my free testosterone is like .2 or nonexistent but i think i my total t was at 50% of the range or maybe even more
    i have insulin resistance even though i'm skinny
     
    #52 sleepywaif, May 30, 2019
    Last edited: May 30, 2019
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  13. TinaM1968

    TinaM1968 Established Member

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    Wondering how you are doing? Also wondering does anyone have issues with coloring their hair? As afar as it holding color? My doesn’t seem to anymore I quit coloring for 2 years and just rescently tried again and after 2 weeks it’s all gone sad because the color makes me feel normal and helps hid the thinning
     
  14. TinaM1968

    TinaM1968 Established Member

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    Wondering how your doing
     
  15. lostforwords

    lostforwords New Member

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    Tina have you tried Henna for hair coloring?
     
  16. TinaM1968

    TinaM1968 Established Member

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    Hmm no I haven’t
     
  17. Sandy

    Sandy Established Member

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    I havent posted for awhile. I had a tel consult with dr childs who corrected/lowered hormones which i had stopped, he said very important to keep taking them, very low dose. He also changed thyroid meds lowering NDT and increasing slightly T4. I suppose things are different at my age 74 so he not following the script. He was mostly concerned about antibodies and said to take a vitamin i had never heard of before pycogenol and low dose naltrexone starting at 1.5mg and increasing to 4.5, supposedly helps to lower antibodies. I am trying all this because i feel if i lower antibodies perhaps hairloss will stop. ??
    At any rate i am 3 weeks into the hormone and 1 week the meds so will retest in another month or so.
    I have been really depressed in that the front of my hair is shocking now, can see through it and there is no way to style my hair to camouflage it. I also have no volume. The hair in back and on sides is still fairly thick, less than before, but i can live with it. On my last visit to a dr he suggested using toppik which i immediately rejected but i broke down and bought it. So i use a very small amount in the very center front hairline just a couple shakes. It does make it look better and isnt really noticeable. But i guess i just dont like anything in my hair, i used to just wash it and walk out, it would take hours for it to air dry. Now i have to really work at it to try to achieve some volume and camouflage my ‘bald area’. It is so depressing.
    If it doesnt correct, which i doubt it will, i am considering transplant or wig.
     
  18. TinaM1968

    TinaM1968 Established Member

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