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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. Jtilly

    Jtilly Established Member

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    The bare spots are on the back of my head, so can’t conceal with hair fibers or anything. Very diffuse loss.
    Very noticeable mostly at the bottom. The ends are super stringy and it wouldn’t even matter if I cut it short because it’s so diffuse.
     
  2. Jtilly

    Jtilly Established Member

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    I have a question for both of you since we all seem to be ultra sensitive to meds and supplements.
    I have these things called Sleep Strips from IDLife. They are sublingual strips that you lay on you tongue and let it melt.
    They contain:
    15mg of L-Theanine
    7.5mg of 5HTP
    1.5mg of Melatonin

    Are either of you familiar with any of these ingredients? Have you used them with success or has problems?

    I liked using them and they helped me relax.
    But I am utterly TERRIFIED of all meds and supplements now.
     
  3. Frustrated

    Frustrated Member

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    I haven't tried those. I've heard mixed reviews of melatonin - but most of the vitamins and supplements have mixed reviews which is why it's so difficult to figure any of this out. even if you find out what your body allegedly needs - like my low ferritin - it doesn't even mean supplementing will do what you want it to! On iron for 3 months, ferritin went from 10 to 17. Off iron for 3 months, ferritin went from 17 to 33 - all by itself....
    I guess I always feel I should be "doing something" about it - the hair loss is a problem and I need to be doing "something" to fix it. But honestly, all my doing somethings have seemed to make things worse. I never seem to not think about it and I think that could the biggest part of my problem. I may be drawing fire to my scalp, telling my system to attack perhaps. Just a weird theory but I suppose no worse than the other *answers* we have for hair loss.
    Funny story - I have a dog who is a nervous little thing. I had to take her to the vet the other day and she was terrified, just shaking in my arms. When she's scared, the fur literally flies off of her, just pours right off. I'm looking at her thinking - hmm. Maybe I'm doing this same thing to myself in some way.
    I also think shampoos and products are more important than the doctors think. Ive literally had derms say that it "doesn't matter" what shampoo I use, hair is from inside. True, but I have never had scalp problems before all this started, no flaking or pain, shiny spots or redness. That's been a fun by-product of this hair loss adventure. I believe the biotin and medicated shampoos reallly pushed this into the loss I have now. I'm still searching for that perfect product combo that doesn't irritate my scalp or increase hair fall. Found a new shampoo I've used twice now and I like how it makes my hair feel and hasn't turned my scalp into a burning or flaking mess, so hoping it will be my go to. ONly lost about 20 overall with showering and brushing the last few times. Fingers crossed for all of us!
     
  4. Jtilly

    Jtilly Established Member

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    Can’t remember if you said before, but have you been diagnosed with Androgenetic Alopecia?
    What new shampoo are you using?
    My shed is a nightmare. I seriously can’t believe it.
    It seems like it’s mostly coming out from the back and underneath.
    Because I lost tons of density in the back over the last 3 weeks.
    I’m so confused.
     
  5. Frustrated

    Frustrated Member

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    IN October 2017 I was diagnosed with telogen effluvium from the first derm, then in Jan 2018 again dx'd with TE from the second derm. In March of 2018 I saw the third derm who was pretty flip about any diagnoses - it might be scarring alopecia, and androgenic alopecia, maybe a lasting TE. She didn't seem to care which kind because she was "going to treat it the same no matter what".. She did run a lot of bloodwork though, so that was good. I had diffuse loss with a focus/attack on the front hairline. I lost a lot of volume and my scalp is more visible. I would run my hands through my hair and they'd be covered with hair! My hair is long and was always very very thick. I never had to use heat styling for volume, I'd just flip it. So really I have no idea how to style this thinner, limper hair :( I miss looking in the mirror at my face and not the top of my head!

    I know they say "look back three months" but I just don't see that being a thing for my loss. It seems a 1 to 1 with stress, products and/or supplements. I'm right now using R+Co Television shampoo with their Atlantis moisturizing conditioner - decided that if I was going to lose hair it would look good on the way out lol. Used it all week so far and no bad scalp reactions, only lost 3 in the shower while washing last night, several more on brushing after but nothing scary. It's foamy and I like the smell, I enjoy washing like I haven't in a year. We will see if I continue to like it.

    Make sure you have moisture in the air - I live in the midwest and found when it gets too dry it makes me lose more. I also wash it, condition it, comb it out and put it up in a clip and don't touch it until it's mostly dry and that seems to help. If you stopped the supplements, just try to flush your body with water to get them through you as fast as you can. Maybe try a tiny bit of lysine if it chills you out like it does for me. Most of all, try to relax and sleep at night. And anything that takes your mind off of it for a while - I like to read ;)
     
  6. Jtilly

    Jtilly Established Member

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    I live in the Midwest too!! Yes, I have been getting super dry, itchy skin and scalp has felt dry as well.
    I’ll have to get a humidifier.

    Never heard of R+Co a Television or Atlantis conditioner.
    I miss my Moroccan Oil shampoo! LOVE the smell of it!
    One day I was like, “F it! If I’m losing it all anyways, I want it to smell good right now then and enjoy it while I can!” So I used it and a ton of hair came out that day!
    Think because it’s so thick.
    That was last summer and I didn’t do it again... Haha!

    I saw 4 or 5 derms who kept telling me I had TE with no pattern loss.
    The 5th or 6th derm I saw was very quick in and out of the room. She saw the thinning at my temples (which I’ve had my whole life! And it never bothered me honestly. Because I had so much hair, it just didn’t bother me.) and immediately said it was TE with Androgenetic Alopecia.
    Told me to go on Yaz, Rogaine and Spironolactone, without even looking at my labs or ordering any labs.

    My part line has remained in tact until just this last month due to the highest shed I’ve ever had! Still losing 300 to 400 a day consistently!
    And for some reason, I’m losing a lot from the back and underneath, where it had started getting thicker and heavier during October and most of November.

    I keep trying to figure out if it could have been all the supplements because I had stabilized for about two months. And then the shedding started a week after I started all those supplements. At first it started out slowly, gradually getting worse every day. It didn’t even shed this bad going on or off hormones.

    The only other thing I can think of, is that I started Spironolactone 25 mg August 27. And I’ve heard people talk about the Spironolactone dread shed, but I think that starts within weeks of starting the medication, not 3 or 4 months later??
    Plus I’m on such a low dose.

    And the final thing that I could think of, is that I have been off of hormones since July 10th. Dabbled with them again for 4 or 5 days early August. Gave estradiol 1 last shot and took estradiol pill for only 4 or 5 days, August 7th to the 10th or 11th?
    So I’ve been wondering if my body is freaking out because maybe I need to take Estradiol?
    But oh man the side effects!

    When you say it seems a 1 to 1 with stress, products and/or supplements, do you mean 1 week to 1 month you notice the shed to start??
     
  7. TinaM1968

    TinaM1968 Established Member

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    Have you seen anymore improvements? My hair has always been long as well. I never blow dried it or styled I lived the fact I washed and went no hair spray or product whatsoever. Like you the thin lumpy hair that now looks choppy I just am at a loss how to make it look descent makes me sad I never gave my hair answoncd thought throughout the day no styling and primping it was just hair. It got in the way I’d tie it back.. the end lol now I never tie it back
     
    #27 TinaM1968, Jan 2, 2019
    Last edited: Jan 2, 2019
  8. TinaM1968

    TinaM1968 Established Member

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    Yea same here the ends seem stringy I trim them but it just just seem to make a difference
     
  9. Frustrated

    Frustrated Member

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    Well I had very interesting discoveries and perhaps some enlightenment. After using that new shampoo for a while, everything including my eyes started to itch. Allergic!!! Then I starting thinking, well what else am I allergic to??? And I began choosing products differently. I found GIovanni and while my scalp was in feel flames from the other shampoo, I used their avocado and olive oil and it calmed it down! Now using their blackberry and coconut milk and my scalp feels great. NO peeling after washing, etc. I'm beginning to wonder if on top of everything else, I am allergic to a lot of these shampoos that have all kinds of flower extracts, etc. I mean I am allergic to them in the world, why not on my head... And sls fries my scalp for sure, so that's off the list. Wondering why derms don't allergy test. Seems to me it would be helpful regardless of the cause of hair loss, to find out what you shouldn't use on your head, right?
     
  10. TinaM1968

    TinaM1968 Established Member

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    I know right? You’d think they’d test. I also need omega. 3 and vitamin d but like you everything I take supplement wise reacts differently for me.
     
  11. Frustrated

    Frustrated Member

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    I've been trying to eat more salmon and tuna. So hard when you can't take supplements. I got some liquid childrens fish oil but I've been too afraid to try it lol!
     
  12. TinaM1968

    TinaM1968 Established Member

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    I hear you! No one believes me when I say I don’t absorb nor react the same why as others with vitamins. I’m trying to do small doses of zinc/copper supplements to see how I do but idk Just tired of nothing helping!! I really thought I was on the road to recovery when life hit me with more stressful obstacles . Almost make u want to just give up It’s hard to get all you need from just eating let alone when your deficient
     
  13. TinaM1968

    TinaM1968 Established Member

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    Hope thing are improving
     
  14. Frustrated

    Frustrated Member

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    Hi Tina! Things are going okay. Sticking with my giovanni shampoo has helped a lot. I'm using the pineapple and ginger and it really seems like my hair loves it. I've had less scalp issues, no pain at all. Still that annoying flaking at the front hairline but I put some argan oil on it after I wash and it seems to keep it in check. I don't know that I've had impressive growth but the hair fall has definitely slowed - probably 5 from washing and 10-15 from brushing out. Not too much throughout the day, maybe a few. Eating better and keeping moisture in the air was really helping, the last week I've fallen off the wagon as I've been crazy busy and eating on the fly. I can tell my hair is cranky about it because it's dryer than it was... Throughout the day I've been keeping it up and in clips away from my face and forcing myself to leave it alone. Very difficult but if it's not hanging loose I'm less tempted to mess with it - trying to protect it from myself lol! It's getting very very long and there's a lot of grey but I'm avoiding hair salons as they tend to be too rough, I don't want the scrubbing and the blow drying, etc. So it's down past my shoulder blades now, but looks nice when I do take it down :)
    Still too chicken to try the fish oil. I'm on antibiotics for a tooth that needs a root canal - I do think the antibiotics make my scalp flakier which I just loathe. Trying to cut sugar too - I noticed the scalp flares when I have too much sugar. Perhaps it yeast overgrowth?? Not sure. But I've at least hit a plateau and don't seem to be getting worse - which is good!!!!
    How are you doing??? Tried anything new lately?
     
  15. TinaM1968

    TinaM1968 Established Member

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    That’s awesome news! Had a rough patch over the holidays I was on antibiotics (2 rounds) due to a tooth infection to which my hair is paying dearly for along with a period of stress do to losing the tooth after all that. Now the past few days my shedding seems to have slowed after that major pick up around the holidays and after the antibiotics. I did try the iodine like the naturopath suggested (bad mistake I think) so i ditched everything again including my trusty vitamin c I’ve taken since this all began. Seems when I stop vitamins my shedding slowly slows. You’d think I would have known this by now but foolishly thought “well This might just be the fix” I slipped off the wagon as well and boy I can’t tell! Trying to get back on track not messing too much with my hair or staring in the mirror for over night miracles, no sugar low carbs my spearmint tea. Sugar from what I read can cause inflammation and raise testosterone/dht levels I was never a sugar person but simple carbs are basically the same bread potatoes etc so I’m trying to stay on track and praying to the best. I’m pretty sure the last bout of shedding was antibiotic related I just hope it comes back! I’m so glad your doing better I pray one day I can come here and post I’m on the road to recovery! I did try some fish oil (just used up what I had left in the cabinet) and contemplating taking d3/k2 just not sure I want to take any chances with it though esp with the mthfr mutations and how Ny body responds to things. I still have the breakage just can’t seem to find a shampoo my hair likes. Please keep us posted!
     
  16. TinaM1968

    TinaM1968 Established Member

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    What sort of diet are you following? Since we seem to be mthfr mutation hairloss sisters maybe it’d help me as well!
     
  17. Frustrated

    Frustrated Member

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    I'm probably just doing the same kinda thing you are lol! Cutting sugar (which is so hard for me because i looove it) replacing it with dark chocolate for when i have to have something! Trying to get rid of processed foods and eating cleaner, one ingredient foods (like chicken and veggies with simple sauces, etc) trying to cut out excessive yeast (again difficult because i live bread too!). Adding in more beans for folate, fish for omega 3, greens and trying to get more red meat for iron but I'm not a huge fan of red meat
    We are mthfr hair loss sisters!!! I really believe that's it in alot of ways. I've got the side tufts of bangs like yours, the inner eyebrow sparse loss, etc. Our patterns are similar, the scalp pain etc. Our horrible reactions to any supplements or things that "help" other people. I'm 44 so not too far off in age either...
    Now I'm on antibiotics again and trying to minimize the damage as best i can. Added a little argan oil to combat the dryness they are causing me. Hoping it helps.
    You're not alone. Doctors don't help us but we can support each other! Its great to be able to come here and check in because at least in my world, people are sick of hearing about it lol!
     
  18. TinaM1968

    TinaM1968 Established Member

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    Yes we do sound like sister! Can’t. Elusive I’ve have FINALLY found someone exactly like me! Hairloss and all! You have the short hairs at the bangs? Omg I just can’t believe I’ve searched for almost 5 years and no one was like me I thought I was just alone. Yes I am trying the same things you are I just need to stick to it. I did last summer really well and after a couple months I felt great nesti ever have. But I fell of the wagon I just wonder if the hair would have continued to improve had I stayed the path. Please keep me updated how your doing and I’ll do the same. Oh yea the antibiotics I had to take (2 rounds) totally did a major number on my hair. I know it was them as it was like overnight my hair got bad.
     
  19. Frustrated

    Frustrated Member

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    Yep! I've got, mostly on the right temple side, this weird bunch of bangs like hairs, then across the left front, so when i put my hair up it hangs like bangs even though i don't have bangs. I stopped coloring and a lot has grown grey so I'm sure that contributes to this mess. The inside bushier part of my right eyebrow essentially has a hole in it and the left is just getting a little sparser. I pencil in the holes lol.
    Overall my hair is thinner and flatter, especially at the front. Keeping it up gives it a bit more body for when i do take it down. And I've seen three derms and no help and random diagnoses. I'm trying hard to be okay with it, some days are better than others. Sometimes i entirely avoid mirrors lol!!!
     
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  20. TinaM1968

    TinaM1968 Established Member

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    Omg I really could have written this you just described me to a t for me the left side is the worst and I try to avoid mirrors too. I don’t understand it. I quit dying my hair last December so it’s been well over a year. My fro titjist so thin now and those darn short hairs are showing through. Today with the wind it horrible I feel everyone can see it. Have u had any regrowth at all? I stopped pulling my hair up awhile ago. It just isn’t happening I try so hard to just go on with life hoping but some days like today it extremely difficult. Think there’s any hope At all for us? 2 Derms and many naturopaths and drs and all say something different vitamins now I see were my enemy wished I never did them. When they run out of thoughts on what it is they fall back on age. That I don’t believe is the entire story not for a minute so what is it? No one knows was beginning to think though I was a freak of nature
     

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