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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've been dealing with hair thinning for over a year now and I wouldn't wish this on my worst enemy! It *could be* TE, Androgenic, FFA, etc etc. I know the year before it happened I had two kids weddings, started a business, dealt with some serious family stress, a persistent sinus infection and month long treatment of augmentin, and then I *tried* to quit smoking... A perfect storm of anxiety, and I'm a bit OCD to begin with. I noticed a lot of hair coming out in October '17, went through three derms and tried a tons of things. Here's what didn't work:

    Medicated Shampoos: Clobestol fried my scalp - just dried it right out and gave me shiny scalp spots; Zinc probably did the worst damage and just cooked my hair - probably lost more with this than anything; a combo shampoo of ketoconazole+salicyclic acid+zinc was useful but not as an all over, only for the front where flaking and pain was going on. It didn't grow back hair but stopped the pain/flaking. Wish my doctor had told me to use it as a spot treatment.

    Supplements: Biotin - tried this twice at two different times and hair literally rained from my head. Derms said "biotin doesn't do that", well maybe not to others, but it did to me! Iron - my ferritin was 10 so my doctor put my on iron. I tried it for 3 months, omg my entire body was in pain. All of my joints hurt - it was awful. at the 3 month bloodwork, my ferritin raised only to 17. So suffice it to say, I quit the iron. I tried vitamin d, zinc, b vitamins (oh boy I can't take b vitamins at all!), a combo hair and nails vitamin, lysine, progesterone cream, etc. etc. My body reacted horribly to almost all of these supplements and side effects came quickly. I felt sick, not myself and not one single one even changed what was going on with my hair. Some made it worse. I still think 'maybe this one will work' but really, my body can't take it. Anything I take throws it completely off balance. My body like a carefully balanced bio-dome of b.s...

    Hair care: I changed shampoos - a lot. I tried non sls, clarifying, moisturizing, no poo, water only washing, washing once a week (yeah that caused some serious nasty scaling)... I've never used any styling products or heat or blow drying, so that wasn't a thing anyway. I changed hair styles, I let it dry down, I twisted it up, I plopped it... I tried no conditioner, leave in conditioner, argan, castor, olive oils... Scalp massage, boar bristle brushes, wide tooth combs, scalp brushing. I used to highlight every three months, I started skipping and then tried semi-permanent to cover the grey. Yeah no, I think full coverage was worse than highlights since it went all over my scalp vs. just in highlight areas. My poor head. Grey just has be trendy now.


    SO what I wish I knew:
    Doctors don't have answers, only lots of theories and they may not apply. There is no good solution for hair loss. They offer rogaine, Spironolactone, biotin, harsh shampoos, hormones, etc. I've had three different diagnoses and the flippancy of the doctors is just annoying. I've had enough of them.

    I've recently come back flagged for autoimmune disease, positive ana, esr high, etc. (I personally think I just fried my poor system out.) These tests came back negative before. Perhaps all of this could have been a transition or a 'flare'. I'm not going to more doctors for it. I'm not interested in being offered more pills.

    Anxiety: Okay first of all I wish I could have stopped looking at it, messing with it, picking at it, etc. I couldn't leave it alone. It was like ocd and body dysmorphia decided to attack my hands and made them mess with my hair constantly. I sat in the mirror and looked so closely at my scalp, a scalp I don't think I've ever looked at before! I still struggle with this. I get a rush of that fight or flight adrenaline when I catch myself in a mirror and see how thin it is compared to what it was. Literally a physical reaction like a panic attack. I try to find a 'put it in clips and leave it there' style and then avoid mirrors lol. If anyone mentions my hair,even something like "oh you've got great hair" i'm all triggered again, sigh. I think this combined with physical stress - i.e. I spent a week madly preparing for thanksgiving, hosted for 20 people - then the day after I lost about a squirrel full of hair in the shower. This was after a month or so of little shed. I started watching videos on youtube about how to break the ocd anxiety cycle and it's helped a lot. The mirror is not reassuring me. Time to move on.

    MTHFR = I don't know if any of you have this or are familiar with this, but I've got the bad one. The homozygous, you process about 20% of what you need one. This deals with your methylation and how your body basically breaks things down. I've known about this for a few years but I guess I really didn't put together that it was kind of a big deal where supplements and medications come into play. After checking through my dna, I see I'm an "ultra rapid metaboliser" as well, which basically means things that are supposed to be time released through your body break down too fast - and combined with the poor methylation, I think this is a huge huge problem. Also why doctors just don't understand why I tell them I "can't take anything" they prescribe me. (Btw speaking of my DNA, hair loss is not there, so that whole "genetic" component they keep saying is just wrong like I knew it was)

    So what's the take away? I'm not sure. I don't think doctors have any solutions for me. The "traditional" solutions aren't working and I can't try their medications. I am very much beginning to believe it is truly a case of MTHFR, autoimmune and anxiety induced issues in my case. My hair is thinner than ever and my scalp is a shiny dry mess after this last year and I believe everything I did created more harm than good.

    I think my next steps here will be looking into an autoimmune diet, and gently easing into that. No extremes. I think I'm going to wash my hair every other day just like always, put it up in its clip and let it be. No dying, no nothing. I'm going to try to focus on getting my body and mind right - and if my hair gets right too - that would be divine :)
     
  2. Frustrated

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    At the moment im learning what not to do lol! The mthfr severely limits me for dealing with just about any medical issue, not just my hair. I'm working through diet changes in order to try to find the right balance of nutrients that don't set off autoimmune issues. Believe it or not if i eat almonds every day for a week, I'll drop hair like crazy. Same with sunflower seeds. All of these supposedly 'good for hair' things apparently throw my body out of whack.
    Right now im trying to focus on natural food sources of folate and magnesium. I know i need omega 3 also and vitamin d. I have to be so careful and slow with anything i try.
     
  3. Jtilly

    Jtilly Established Member

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    First of all, wow! You have been through a lot!
    I am so sorry you have been through so much!!
    But what a great informative share!

    Reading this, much of it felt like words right out of my mouth! Except I have not tried nearly as much as you have. Though have tried my fair share, which I am fairly certain has also made it worse.
    I was just saying the other day how I would not wish this on my worst enemy. Ever.
    And I’m not positive, but I think I react badly to all B vitamins as well.
    In the past I self prescribed myself B-12 because I’m always hearing how most people are deficient. I started having tingling in my fingers, got tested and was WAY over on B12!
    Then recently a nutritional therapist put me on a B Complex plus additional B12 in some other vitamins she gave me. I am not certain but I think because they are a stimulating vitamin, I get overstimulated which turns into anxiety for me.

    I’ve been dealing with hair loss for 10 months now. Came on very suddenly out of nowhere. Well technically 5 months of actual loss. 10 months ago I just noticed my hair was kind of eh... It went from super thick, needing a cut every 2 months, needed to be thinned out every 4 months. Last December it was super thick, had it thinned out. 2 months later it didn’t need a cut per usual. Another 2 months later in April still didn’t need a cut and just seemed eh.

    Long story short, by end of April I decided I had been neglecting my diet. Eating poorly and not often, yet running 3 miles every other day.
    I started eating super healthy April 22nd and Celiac symptoms reared it’s ugly head. Though at the time I didn’t recognize my symptoms as Celiac.
    I was diagnosed with early menopause and Celiac within one month of each other.
    Was thrown on bio identical estradiol, lost 20% of my body weight in about 3 months time.
    Had horrible reactions to HRT so doctors took me off after 7 weeks.
    By July started losing hair.
    From what, who knows... Take your pick...
    After further testing later was told I was not in early menopause but in peri menopause.
    In August was advised by OB and derm to start Yaz (Have not done that yet).
    Derm prescribed me 50mg Spironolactone for “hormonal acne” (that I never had until the week I started estradiol but now won’t go away even though I’ve been off hormones since early July) but I decided to only take 25mg. Hasn’t helped acne, has made it worse I think.
    Have been on it for 3 1/2 months.
    Am trying to wean off now because my total/free testosterone levels are almost non existent as is my DHT.
    Oh and was told to go on rogaine (also have not done that)

    I could go on and on, but I can relate to so much of what you said.

    I am not very familiar with MTHFR, but I’ve been hearing about it a lot lately.
    Is there a specific test for that?
    Also interested in how you got your DNA tested to find out about genetic hair loss?
    And how you were tested or what test they used rather to see you are a rapid metaboliser. My dentist once told me that I metabolise Novocaine super fast so he always had to give me boat loads. One time he had to give me the amount you would give a patient to extract all their teeth!!
    I’d be very interested in these tests.

    Because all this happened to me so rapidly and is rapidly progressing, I’ve been racking my brain, searching for a needle in a haystack trying to make sense of all this.
    All while trying to stay “calm”.
    A work in progress.. which was going fairly well, staying calm, until about 2 weeks ago and my head started hemorrhaging hair literally.
    Increasing every day 200 to 300 to 400 yesterday. I had to stop counting yesterday and today or I would seriously have thrown up.

    Sorry for the long share. And so sorry you’ve been through so much!

    Definitely interested to hear about how you got tested for those various things if you don’t mind.
     
  4. Jtilly

    Jtilly Established Member

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    That’s very interesting what you say about almonds and sunflower seeds causing hair loss. When that happens, how long does it take for the hair loss to stop?

    I ask because my body seems VERY sensitive to EVERYTHING I eat or take (medications and vitamins).
    Was never like that before my Celiac showed up.

    I keep wondering if it’s something I’ve been eating or drinking (like soy that I love in my Starbucks lattes) that could be causing hair fall out.
    I’ve cut the soy. I had been put on a ton of vitamins 3 weeks ago and a week into taking them, my hair started shedding. So I stopped taking them with the exception of Evening Primrose Oil, Omega 3 Complex, CoQ10, vitamin D and C and iron (had low ferritin) But who knows! Maybe I should quit all those too!?
    I truly believe my hair responds quite quickly to something my body is sensitive to.
    But trying to figure out what exactly I react to is a nightmare.
     
  5. Frustrated

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    Want to say off the top, B vitamins make me twitch, not sleep and generally give me raging anxiety. That's a red flag for MTHFR. You can only actually process the natural versions of a lot of things. Folate is vitamin B9, and has a huuuuge impact on your brain and body. Folic acid, the type that is used in supplements and put in to supplement our foods like cereal, is NOT folate. It's the synthetic form and with MTHFR you only process folate at about 20% normal capacity (MTHFR is the enzyme which converts folate in your body), so this influx of the synthetic folate makes you lose your sh*t.
    I think this is where the biotin sent me amok. Folate (B9) works in conjunction with B2, B6, B12 and magnesium. Biotin is vitamin B7, and I think it severely threw my pathetically balanced B vitamins out of whack. It also started the scalp issues - including attacking the front my my hair - and gave me acne, which I have never had in my life (almonds and sunflower seeds also bring on the acne strangely). I think once I took this the second time, for a month actually, I had really messed up my body.

    Years ago I did 23andme (my whole family has done it actually lol). When my dna was finished, I uploaded my raw DNA file into a program called Promethease. Promethease reads all snp's - it can tell you what meds not to take, your risks for certain diseases, etc. You have to take it all together though, it may have one read for thyroid cancer and two against. But it's fascinating and really informative. There's also a free site called genetic genie where you can upload your file and see your methylation. My DNA supports my life experience in that I can't take most medications. I have serious mutations that basically say - get it naturally or not at all lady! Even having this information, doctors always just nodded and acted like it was all hocus pocus so I never really brought it up.

    My last derm ran a huge blood panel and for some reason included the MTHFR and homocysteine - which was great because finally it's on my medical record instead of being poo-poo'ed as nonsense. The blood work came back with homozygous (positive on both genes, basically I inherited a bad one from both mom and dad) MTHFR C677T/T. This blood work stated that there is only about 10% frequency of this mutation. Meaning, 90% of the world processes things differently than I do lol! So doctors treat the majority and can't figure out why my body doesn't respond the same way. Anyway my homocysteine is high also - so yeah the MTHFR actually is impacting me.

    I found out my hair loss genetics and my metabolism issues from Promethease with the dna from 23andme. It literally mentions tons of prescription drugs, etc. Like you have all these mutations and medications are bad.
    Here's a couple of examples of my dna read from Promethease:
    "CYP2C19 Extensive or Ultra-Fast Metabolizer CYP2C19 Ultra-rapid Drug Metabolism. Your body breaks down (i.e., detoxifies) certain medicines more quickly."
    "TPMT*3C . impaired drug metabolism" (only about estimated 5% have this one)
    "(TPMT*3B) impaired drug metabolism" (yes, TWO of these!)
    "homozygous for C677T of MTHFR = 10-20% efficiency in processing folic acid = high homocysteine, low B12 and folate levels"

    Even so, and even with the evidence throughout my life of having horrible reactions to medications - doctors are like 'here's a drug', I'm like 'are there any other choices???' I feel like I'm trying to biohack my own body and going it alone. Almost every medication and supplement has a fast reaction in my body. It's not placebo effect - which is what I tried to tell myself for years - and I feel to a certain degree I threw everything out of balance and cooked my neurological/autoimmune system. It's soooo sensitive now.

    I'm probably entering perimenopause also - I'm 44 and lately girly things have been wonky. I don't believe for a second that it caused the hair loss that started a year ago.
     
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  6. Frustrated

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    when I eat certain things it's usually about a week later the hair starts falling - then I'm like OH SH*T (which proooobably makes it worse) - but it's like one big purge and then slows down to about normal over the course of two weeks.

    What's interesting is I am thinking about how pretty much the same nutrients and amino acids grow nails as grow hair. My nails are amazing. Last year when this started and I took the biotin I had the horizontal lines on nine of ten nails and one period of terrible breakage and lack of growth. That's gone now and the lines are grown out. SO I don't think I'm having a problem GROWING hair... I think I'm having a problem with shedding. And foods, supplements, products and stress are probably the culprits.
     
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  7. Frustrated

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    They do that. I'm convinced they don't understand it. It literally impacts the way your body breaks down everything. I'm sure that why iron hurt my body and barely raised my ferritin.
    I explained it to my husband like this: SO it's like pouring something into a funnel. My body can only process say 20% of something - dumping more in doesn't help. It cannot process it - only 20% gets through that funnel. Everything else goes over the top and pours into my body creating side effects and build up and doing more harm than good. So if I take 1000mg of something, and my body can only convert 200mg of that into it's useable form - what happens to the other 800mg??? Don't tell me I'll pee it out, nonsense.. All of those mg, all of those days - you can't tell me my reaction to these meds isn't reasonable - that these things do not build up or cause side effects!
     
  8. Jtilly

    Jtilly Established Member

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    How did you get omega 3 tested? Did you have to see a naturopath? Or can a GP do that?
     
  9. Jtilly

    Jtilly Established Member

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    Yes! My nails are stronger than I’ve ever had in my life right now!
    I never have had lines or ridges though.
    I’ve been taking prescription strength Viviscal and Jarrosil drops for 3 months so I attributed the nails to those.
    My hair is growing long too. But too much falls out leaving it looking very stringy now.
    As soon as I started a new vitamin regimen 3 weeks ago from IDLife, a week later my hair started shedding more than I’ve ever seen.

    This is what they had me on:

    AM:
    Basic Multi Vitamin

    Enzyme Formula

    Spirulina Complex

    Stress Shield? (Has things like ashwagandah, L-Theanine, L-Tyrosine, DL-Phenylalanine and lemon balm.)

    Digestive Support

    Evening Primrose Oil

    Zinc

    B-Complex

    PM:
    Antioxidant Plus

    Digestive Support

    Omega 3 Complex

    Stress Shield

    CoQ10

    Probiotics

    Vitamin D plus CoFactors

    Vitamin D 2000 IU’s

    Sleep strips which have L-theanine, 5HTP and a little melatonin.

    I don’t know what to make of all this shedding.
    They say to look back 3 months... But I feel like mine starts shedding 1 to 2 weeks of a trigger.

    My anxiety increased as well when I started taking all that.
    Ironically IDLife claims to be healthy vitamins for MTHFR.
    The nutritional therapist who prescribed all those to me suffers from problems associated with MTHFR.

    I just don’t know what to do anymore.
    A week ago I quit all the vitamins except:
    Evening Primrose Oil
    Digestive Support (was actually helping some of my digestive problems)
    Omega 3
    CoQ10
    Vitamin C
    Vitamin D
    Viviscal
    Vitron C (Aka: Iron for low ferritin)
    Jarrosil drops (Silica)

    Now I’m thinking maybe I should quit all of it.
     
  10. Jtilly

    Jtilly Established Member

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    I don’t have MTHFR that I know of, but have never been tested.
    All my tests, even vitamins come back normal with the exception of low ferritin that was 11, is now 47 after supplementing for 4 months.
    I had super high B12, calcium and high Selenium also.
    I really thought because of the Celiac and the sudden rapid weight loss for surely I would have been deficient in some key nutrients, but I’m really not.

    I wonder if when the nutritional therapist put me on all those vitamins, if that could have caused a massive shed.
    The shed hit a week into taking them. And prior to this, it had finally stabilized for a month or so.
    I think the first shed was induced by the bio identical hormones they put me on that gave me horrendous side effects.

    I’m really just stabbing in the dark here desperate for answers.
    Because in my heart I jusf can’t believe I’d lose this much hair this fast. It’s not normal.
    Not even for “hormonal fluctuations”.
    I’ve had my hormones tested very regularly, and even though they fluctuate, and my estradiol and progesterone run low, estradiol usually around the 87’ish range, a couple times in the 20’s, for the most part estradiol tests in the 80’s, which is below 100, but surely that can’t cause hair to hemorrhage off your head! So many women go through peri menopause and their hair doesn’t pour off their head at this pace!
    I know hair thins with age, peri menopause, menopause, etc etc.
    But falling this fast? 400 hairs a day?

    So theoretically, I wonder now that I’ve stopped the vitamins, if indeed those were the cause of this shed, if the shed will stabilize within a few weeks? Or will this go on for months?

    Again, just stabbing in the dark. As my body seems to be hyper sensitive to EVERYTHING I put into my mouth now.
    And I’m honestly hoping it was the vitamins that caused this and it will slow down soon...

    Sorry for the ramble... Just trying to make sense of this rapid hair loss.
     
  11. Frustrated

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    Honestly if the shed happened after the vitamins started I'm going to guess that's what did it. It's a lot to put into a body at once, regardless of MTHFR. I've noticed doctors have a tendency to start so many things at once that if you respond poorly to something, it's almost impossible to see what caused what. For me I knew it was biotin because that was the only vitamin I was taking at the time. And it was rapid, within a week of starting shedding increased. I have to say the second time I tried it (Derm said biotin 'doesn't do that. stick with it for a month') I did the month and also used the zinc shampoo. My hair was literally curling and falling out! I went to a new derm and started a bunch of other things immediately so it's hard to say what caused what after that.

    One thing that seemed to help my anxiety and didn't cause bad things strangely was l-lysine. I took this for a different reason because I felt a cold sore coming on (which was weird because I only get them when sick and like once every 5 years), the derm said "take lysine". Granted I cut a pill into quarters and took one quarter - but if you haven't tried this, maybe look it up. I have no idea why it has that reaction in me but when I was not sleeping well it seemed to help. I do still occasionally take a tiny bit of it if I'm starting to feel super stressed again. It doesn't seem to have bad effects at such a low dose.

    I feel like maybe everything gets way out of balance and trying to figure out how to rebalance becomes a problem. Taking meds and supplements without knowledge of what we actually NEED probably kicks it worse out of balance, therefore doing more harm than good, for me at least.
     
  12. Frustrated

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    I should probably get that test. I've come to a point that I might just order my own as doctors just want to give pills without knowledge of what I actually need. I'll see if I can find it online.
    I wonder if you have the problem I have - basically I have to get my nutrients from natural sources, which is ridiculously hard. My body doesn't improve from supplements. for example: I was very low in Vitamin D (18) last November. I took supplements in the beginning of this year (vitamin d tends to make me anxious, I do NOT like this supplement) and my vitamin d registered as 20 in March. 2 point increase with 2 months of supplement! In April the sun came out - I ditched the vitamin D and went outside! My test in May my vitamin D was 44. The pills did nothing but make me feel terrible. My body had to make it's own.
    I have a lot of hairline issues, at the front besides the overall thinning. I think this may be linked to the autoimmune issues - the last derm thought maybe FFA - which when I looked it up is autoimmune. I'm thinking all the supplements, etc made my body think it's under attack or something and caused the overreaction - hence hair loss.
     
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  13. Frustrated

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    Yep - I have the same one!
     
  14. Jtilly

    Jtilly Established Member

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    Yes, my hair has thinned out so much since October, A LOT. Even since 2 weeks ago. It pains me so much because things had stabilized finally.
    Even though it was a lot of vitamins, I thought the ones she had me on were harmless. She tried to put me on DHEA and DIM, I said absolutely not. Because I know those can mess with your hormones.
    I quit most the vitamins last week except Evening Primrose Oil, Omega 3, Digestive Support, and the ones I’ve been taking for over 3 months like Viviscal, Jarrosil drops, vitamin D, Vitron C for iron.
    Yesterday I quit all the vitamins except the ones I was taking for months previously, not prescribed by her.
    What’s really weird is that I’m developing fearful type anxiety again. And although yes the hair loss is causing some anxiety, this is different.
    It’s like I wake up to an adrenaline rush. Like I’m running from a lion or someone gave me a shot of epinephrine.
    That’s what happened to me when they put me on estradiol.
    It was awful and it’s come back now.
    Yesterday and today have been the worst.
    I know it’s systemic. I can feel the difference.
    My dog who is always by my side, she wouldn’t come near me when I was on hormones over the summer.
    Then when I went off and that fearful type anxiety mostly subsided slowly over time, she started to be by my side all the time again.
    It’s like she was afraid of me, or sensed it wasn’t me...
    She’s doing the same thing. Yesterday and today she won’t come near me.
    So something has messed me up.
     
  15. Jtilly

    Jtilly Established Member

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    Whoops... Wasn’t finished with this post yet... lol

    Anyways, I have this constant shaking, jittery feeling.
    I’m wondering about the evening primrose oil now..
    Because even though it seems like most people use it with success for hair loss, I think women often use it in menopause so it must do something to hormones as well??
     
  16. Frustrated

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    Based on our similar symptoms, reactions, etc. I think we can safely say this has something to do with our MTHFR since that's our common ground. I didn't think it had much to do with it either - but honestly for us to both have this similar of cases, and both have 677TT - it HAS to be related!
     
  17. Frustrated

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    Yes!! Omg I understand this and it happens to me too! Way way worse with the supplements than now. A few things I've changed to try to help myself with this:
    I used to work out a lot. I've sadly had to cut it out. It's like it overstimulated my whole body after everything that's gone on. I now walk with my dogs when it's nice outside or on the elliptical when it's not. And it's not an insane elliptical push, it's a gentle 15 minute movement. Cutting the workout has helped. I hate it but I think my whole system is too fried for it anymore.
    I love coffee - looooove it. I cut out all caffeine after 2pm. It's hurts my soul but it actually does help me.
    Overstimulation of any kind - i.e. excessive worrying, cleaning, errands - any time I push at a fast pace, my whole body reacts. I try keep a balanced pace now. Cut out anything frantic.
    It does seem to have somewhat of a hormonal basis as it usually gets bad around that pms time for me. I try to read myself to sleep for calming, sometimes will try a bit of lysine. when I had a terrible cold, I was desperate enough to use a nyquil gel cap (at half dose) and it KO'd me. Not gonna lie, maybe once a month is this jolting awake thing is going on, I hit one of those. It hasn't seemed to do anything awful.
     
  18. Jtilly

    Jtilly Established Member

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    I am so heart broken because in October it had finally stabilized, stopped shedding and was feeling nice and thick in the back.
    Now it’s pouring off my head 400 hairs a day.
    Even my family said they can see a huge difference from 2 weeks ago.
    I feel like throwing up.
    I am convinced it had to be one or more of the vitamins.
    It is crushing me and right before Christmas too!
    I just want to curl up in a ball a hide from the world.
    I pray so much that it at least stops shedding soon!
    Not sure if it’s realistic to think that now since I’ve cut the vitamins if the shed will stop in a few weeks?
    Is that even a possibility?
     
  19. Jtilly

    Jtilly Established Member

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    So the vitamins made your anxiety worse?
    It’s so good, well not good that the anxiety happens to you too, but so good to finally meet someone who has had the same experience!
    Thank God my GP knows me well and knows I’m not just making this stuff up. Unfortunately he is just a GP so he is limited in what he can do to help me. But he runs every test I ever ask for even if he can’t interpret them.
    Every other doctor treats me like a crazy person. And I’ve seen SOOOO many of them.
    I feel like you previously stated, like I’m trying to bio hack my own body and going at it alone!
    None of the other doctors care and they know so little. It amazes me!

    Before all this happened, I used to run 3 miles every other day. I used to say if something ever took my ability away to run, I would die! Because I LOVE running. It was what I called my “depression pill”. I ran because it made me feel good mentally.
    I haven’t ran since April now. It started out as I couldn’t because I was so sick from Celiac.
    Now I don’t dare because it will mess up my hormones even more.

    I have coffee a couple times a week from Starbucks, but I have been getting decaf for many years now because about 10 years ago I developed a sensitivity to caffeine. For a year I was running to the doctors trying to figure why I was having heart palpitations etc. They did test after test on me, stress tests, heart ultrasounds, you name it. Never once did they ask me about caffeine.
    They told me I had anxiety. But I knew I didn’t. Ultimately I resigned to believing them, even though I didn’t have any reasons to have anxiety at the time.
    After a year of unknown causes, I started a new job and couldn’t have coffee for about a week because of my schedule. (The coffee shops were all closed when I would get off work and I didn’t like to drink coffee before work) Anyways, went a week with no coffee.
    One day on a beautiful sunny Friday, I got off work early. It was pay day, the sun was shining, life couldn’t have been better! Went to my favorite coffee shop, got a coffee and within 15 minutes, there were those heart palpitations!! I looked at the coffee and realized, OMG! That’s it! That’s what is causing this!!
    After a whole year of doctors, tests and I was the one who figured it out on my own! Ever since I do decaf and no problems.
    Decaf still has some level of caffeine in it but not enough to affect me.

    I really feel like the culprit of this latest massive hair shed that is sure to take what little I had left, is the Evening Primrose Oil.
    There is a lot of conflicting information out there about EPO. Some say it has estrogenic effects, but say it is unknown for sure.
    EPO is tauted as helping with hair growth so I agreed to taking it.
    And even when I quit all the vitamins, I continued with that one til yesterday! So I took it for a month!!
    I could just die!!
    I’m so mad for taking it!
    I pray to God it clears my system quickly but even so, if it messed with my hormones, I’m screwed.
    I don’t have enough hair to continue losing 300 to 400 hairs a day.
    And just when it had started to recover!!
    It kills me! I can only pray I’m as lucky as some are, once they stop the trigger vitamin, the shed will slow down in a week or 2.... I pray!!!
     
  20. Jtilly

    Jtilly Established Member

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    Me too! 2 weeks ago my hair was way better!! October 22nd it was pretty amazing and probably on the way to recovery of the first TE.
    I was even brave enough in October to have the roots touched up without incident! I was so extatic!!
    Now... It’s so, so bad! I never lost this much hair even on stupid hormones! I was on hormones for 7 weeks and never had shed like this being on them or coming off!
    And I thought the shed this summer was bad! Boy would I give anything to go back to those sheds!
    Have you ever shed 300 to 400 hairs a day? You probably told me already.. Sorry for re-asking.
    But I’m not kidding, every day all day it is seriously like I just had chemo! I’m not exaggerating...
    I have to have hope this will knock it off quickly.
    I don’t expect the hair I had last year even, but one cannot lose this much hair this fast.
    I sometimes wonder if I have diffuse alopecia areata. Because celiac is an autoimmune disorder, and though diffuse alopecia areata is rare, it does happen...
    I don’t know... I just kno this much hair is NOT normal.

    I made an emergency appointment to fly to Florida for PRP/CRP treatment in 3 weeks!
    That’s what stopped my last shed...

    But can’t imagine how much hair I’ll have left by then!
    Will more than likely be in a wig within a week here.
    I mean that’s how serious it got that fast!
    Went from thickening up substantially for my liking, to now seeing bare spots all in 2 weeks time!

    My heart is broken!
    Talking to you girls has helped me so much. I mean it doesn’t take the pain away, but you’re the only ones who truly get it. And you guys give me information I wouldn’t otherwise know of.

    Thank you both ❤️❤️
     

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