Wednesday, May 6, 2015

My Hashimoto's Crash Course: Another Piece To The Panic Puzzle?

Note: this may get SUPER boring if you don't have anxiety and/or you're not interested in thyroid conditions.

Also: I'm not a medical professional or even close to an expert, so always consult your doctor and do your own research before starting or changing any medications, treatments, or supplements.

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Late last year I decided I wanted to really tackle my growing agoraphobia, so before I got too serious with exposure therapy, I asked my doctor to run a bunch of tests. (It's always smart to get checked out before you start any new treatment - even non-drug ones.)

The tests revealed I had a "shocking" vitamin D deficiency - which I expected - and also Hashimoto's Thyroiditis, which I did not.

At the time I told you guys the good news, I was pretty dismissive of the Hashi's, calling it, "essentially sluggish thyroid, which is easily treatable" and claiming it had nothing to do with my anxiety. Several of you immediately cautioned me in the comments, explaining that it's far more than that, and has potential anxiety implications. So before I started any meds, I went looking for the best book I could find on the subject, and eventually decided on this one:

Hashimoto's Root Cause, by Izabella Wentz


I bought and read it in a matter of days, taking copious notes, and then took to the web to research more of what I'd just learned.

In a nutshell, Hashi's is an autoimmune disease in which your body begins attacking your own thyroid. As the thyroid is destroyed, it obviously can't produce all the thyroidy goodness your body needs, and a host of symptoms like fatigue, cold intolerance, weight gain, etc, can pop up. Apparently Hashi's can be hard to catch, so I'm lucky, in a way, that my test results were clearly positive. (The most conclusive test looks for Thyroid Peroxidase Antibodies, which is what your body produces to attack your thyroid. If you have any those, you probably have Hashi's. Easy-peasy.)

Most doctors consider Hashi's an easy fix: you just supplement the body with synthetic thyroid - Synthroid being the most common - and plan to increase that dose as the thyroid is slowly destroyed by the body's own immune system. Since no one really knows WHY your body suddenly has it in for the thyroid, all you can do is essentially treat the symptom, and of course you'll need to be on the synthetic thyroid for life.

That's not necessarily a bad thing, of course - these drugs save lives -  but Wentz's book delves much deeper, searching for that "root cause" and positing that, if you find it, you can actually reverse thyroid damage and potentially avoid a lifetime of ever-increasing Synthroid doses.

I should stress that the author is NOT anti-drug, and heartily recommends Synthroid or other medications as a first step in any Hashi's treatment regiment. Wentz is a pharmacist, and frequently explains things from the molecular level, which can be both daunting and extremely technical, but I kind of love that.

I can tell you that Wentz's recommendations are flatly overwhelming, though, ranging from a dizzying array of both prescription and supplement options, to further test recommendations, to diet plans that made me die a little inside. (Or, ok, die a lot.) It's complete information overload, but coupled with her in-depth explanation of what exactly your body is experiencing with Hashi's - and the host of seemingly unrelated symptoms that go with it - it was also pretty encouraging. Suddenly my life-long history of GI issues is making sense! And hey, get this: anxiety and panic disorders can definitely be directly related to Hashimoto's.


Mind = blown.


(Here's a post on Wentz's blog about it.)


Armed with better information, I returned to my doctor and discussed treatment options. Given that my thyroid numbers weren't all that bad yet, he allowed me to hold off on Synthroid for 6 more weeks, and instead focus on fixing my severe vitamin D deficiency, which I'd learned can have a major effect on thyroid function. Based on my research I also began taking Selenium, and we decided to check my iodine levels for possible supplementation of that, too.

Quick note on iodine: Long considered the go-to thyroid supplement, I was surprised to learn there's quite a controversy among doctors regarding iodine, as some [like Wentz] believe excess iodine actually *causes* a lot of the Hashimoto's here in the U.S. (Whaaaa?) In other countries it's usually an iodine deficiency that causes Hashi's, so you can see how that'd get confusing.

All I can say is, do your homework, and talk to a knowledgeable doctor. If you do decide to supplement, definitely get your iodine levels checked first. It's a simple urine test, so no excuses! (Mine turned out to be on the low end of normal, so I supplemented briefly, but then stopped after 2 weeks.)

Ok, so! Ready for the good news?

After a little over 6 weeks on vitamin D and selenium, my D levels were back in the normal range, I felt more awake & energetic, and my TSH (Thyroid Stimulating Hormone) improved by half: coming down from 6.05 to 3. (Normal range is roughly from .3 to 5, so that puts me back in range.) My doctor was especially pleased to see my T3 come down almost a full point, since he tells me that's the more adrenaline-like of the Ts, and so more likely to cause panic issues.

I still have those pesky Thyroid Peroxidase Antibodies, which means my body is still attacking my thyroid (and I still have Hashi's), but even those reduced from 194 down to 148.

Encouraged, my doc and I agreed NOW we could start Synthroid. The lower T3 meant I was less likely to have a panic reaction, and the drug will help with my Hashi's symptoms and potentially even allow me to lose some extra pounds, which Doc is keen to see. [Insert grumbling here about responsible doctors and their persistent demands for better health. I mean, REALLY.]

It's been just over a month now, and I'm happy to report that the Synthroid hasn't caused any noticeable uptick in anxiety - though there's also no miraculous wellspring of energy or weight loss, either. Heh. I'm on the smallest dose possible, though, so we'll reassess my levels in another few months and see if I need more.

I'm posting all this because some of you asked, but also because I hope my story encourages you guys to ask more questions, do more research, and maybe even order some tests through your doctors. Hashi's is most common in women over 30, so if you have the symptoms, get the test. (And make sure it's the antibodies test, not just your TSH level!) This could be one more piece of the panic puzzle for some of you, and that alone makes it worth a dozen blog posts, in my book.


Closing thoughts (ie the slightly less boring stuff):

John told me last week that one of the things he's most admired in me the past 7 years has been my tenacious search for answers. I refused to accept that I started having severe panic attacks - literally over night - for no reason. I refused to accept the "No Diagnosis" on my hospital charts. I've never stopped looking for a root cause, never stopped seeing new doctors or trying new things.

Some of my efforts were a disaster, like my 2-year foray into bio-identical hormones, and some brought me blissful relief, like this new spine stretch that combats computer hunch, and lets me go up to 2 months between chiropractic visits. (I can literally halt minor free-floating panic with a simple shoulder stretch now - which took me years of needless suffering to learn.)

I've met so many people who've given up, saying they're just "the anxious type" and resigned to a lifetime of Xanax. Xanax is a godsend, don't get me wrong, but I'm convinced panic and anxiety should never be a life sentence. Maybe I'm wrong. Maybe I'll still be struggling to ride the Hogwarts Express in ten years, and maybe I'll never get on a plane again, because I'm just too scared. Maybe I'll never see Tokyo Disneyland.

But I'm tenacious, dangit, and I refuse to accept that.

So here's to all my fellow rebels out there, spitting in the face of panic and daring it to do its worst.

And then doing responsible research and talking to our doctors and therapists.

'Cuz we got this.

78 comments:

  1. Thanks for sharing, Jen. So happy for you on your progress! Don't stop -- keep it up.
    I have someone I know who I have tried to gently steer in the direction of getting help for her anxiety and panic issues. She passed it on to two of her daughters, and none of them are really doing anything about it. She still refuses anything I suggest, even reading your blog entries, or researching on her own. But I won't give up.
    Maureen S

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  2. Jen, I've been a longtime lurker here and love your blog. I especially love your willingness to share your personal struggles. One of the food blogs I follow is written by a woman who says she reversed her Hashimoto's through diet. In case you are interested: http://deliciouslyorganic.net/about/. Melissa

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  3. Thanks for this post! I have Hashimoto's and I've been having anxiety problems for about the same amount of time and even though I bring up the anxiety to my doctors, they never seem to pay that much attention. I'll have to see if I can find this book at the library.

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  4. Jen - thank you for addressing Hashimoto's Thyroiditis and vitamin D deficiency. I am always amazed just how many people are vitamin D deficient living in the Sunshine state (aka Florida). While not everyone with Hashi or vitamin D deficiency will have anxiety issues, many are prone to do so. Congratulations for taking your health seriously and not giving up on getting an accurate diagnosis. John and the rest of your Epbott fans need you around so stay healthy!

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  5. We know so little about vitamin D, sigh. I can suggest checking out a friend's website for food help. She has had a ton of GI issues - mostly treated with diet. And not a boring one! www.grainsandmore.com Let Mira know Sam form CT sent you. Her book, "The Pantry Principle" is an eye-opener.

    And CONGRATS for digging deeper than "take this pill and be quiet"!

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  6. thankyou for reminding me I haven't taken my Vitamin D pill for today.
    I'm fairly certain I don't have hashimotos. goodness know the doc's ordered enough blood tests but I fear I'm just stuck with centuries worth of counselling.
    unlike you I at least have a reasonable root cause for my text-book PTSD, Social anxiety and Agoraphobia. not a pleasant thing, but at least no mysteries or blank pages.
    I have a good friend with Graves disease, a form of Hyperthyroidism, which isn't much fun for her, and very odd, as half her family has Hashimotos.

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  7. Thank you for your honesty! Recently, I have open heart surgery to repair an ascending aortic aneurysm. I found that being honest about the surgery and my feelings about it helped my recovery immensely. And now thanks to all of your posts about cosplay, I'm thinking that it may be time to work on a steampunk Queen of Hearts costume. I also recently discovered that I have low Vitamin D....living in Seattle will do that. Take care of yourself!

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  8. You are awesome. That is all. :)

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  9. ummm... that should be "had open heart surgery", not "have open heart surgery". *facepalm* (here I am trying to make a good impression and all)

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  10. OK, I've tried to post my comment twice already in another browser, and while other comments seem to be added, mine hasn't been, so maybe it's a browser problem. If this shows up multiple times, please accept my apologies!

    Having my thyroid problems diagnosed and treated changed my life! A caveat: I take Synthroid, the brand, not the generic. If your insurance tries to substitute the generic, be very aware of your body's reaction over the next few weeks. I – and two other people I know – are unable to take the generic, because it caused these symptoms in all of us: racing heartbeat and sleeplessness. Your insurance and some doctors may tell you the brand and the generic are the same, but they are NOT.

    Kudos to you for your valiant quest for health! Be well!

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  11. I've learned that your thyroid can impact so much, but I didn't know there could be a connection between that and anxiety! Interesting! I have a dog diagnosed with hypothyroidism two months ago, and since she's started her thyroid medication it's been a night and day difference - she's got so much more energy, she's losing weight, she had lost all the fur on her tail and it's growing back in. Makes me wish animals could talk so she could tell me from her point of view how she's been feeling.

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  12. Hooray for finding something that is helping! And I admire you so SO much for looking for answers. And doing proper research on those answers you find. So many people don't follow up an initial lead with proper, credible research on the matter. I enjoy reading about your search for answers and your quest for health, it's really encouraging to me.

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  13. I have a friend who had her thyroid removed last year and both she and her mom had just the opposite reaction to Synthroid vs. the generic. For them, Synthroid didn't work at all but the generic works great. So everyone is different. If Synthroid doesn't seem to be working for you, possibly exploring the generic would be an option.

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  14. I hear you on the dying inside re: diet changes. I have not lost any weight since starting Synthroid, probably about 5 years ago (in fact, I've gained weight). And no matter what I do, I can't seem to lose weight. It looks like us folks with bum thyroids should cut out dairy, grains, cruciferous veggies, legumes, sugar, fat, caffeine...I am a vegetarian, so if I cut out the above, I'm not entirely sure what I am allowed to eat...carrots, celery and eggs, I guess.

    At what point do you decide to just be fat, medicated and happy? This is where my mind is at today. My anxiety has mostly gone away with Synthroid, I am relatively productive and live a pretty full life...sure I'm exhausted all the time...but is that worth being able to eat bread, cheese, coffee and chocolate? Maybe!

    Good luck on your continued research and journey. I am glad things are starting to go well, and hope you're starting to find relief from other symptoms, including the anxiety! xo

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    1. I'm with you on deciding to just be happy with our weights, barring the usual life-threatening exceptions. Every day there's more evidence showing us diets - at least for the sake of weight loss alone - don't work, and you get all the life-prolonging benefits of exercise & healthy living even if you never drop that extra 20 or 30 pounds - so why choose to be miserable?

      If you're curious, I highly recommend this TED talk on the subject - it's both depressing and kind of liberating, but mostly just incredibly informative.

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    2. My friend was very against taking Synthroid and takes armour thyroid (pig thyroid) and could only get it prescribed by a specialist (PCP will not prescribe it usually).

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    3. Get checked for Polycystic Ovary Syndrome. Something like 30% of women have it, and being unable to lose weight no matter what is one of the main symptoms (along with high testosterone, dark hair in weird places, stretch marks, and cysts in the ovaries-- though not all of those are true for every person.) It's fairly easily treatable with metformin.

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  15. As a fellow Hashi's sufferer, I nodded through most of this. :) Also look at your iron levels (which you probably did with your full workup) - I have found iron, Vitamin D and selenium have really helped me. So did going Gluten Free and giving up caffeine, though I have yet to remove dairy from my diet. It is just one step too far (for now).

    My only other piece of advice is to understand how you feel at a TSH of 3. Yes you are in that "normal range", but not everyone feels the best right in the middle. Personally, I like to be closer to the 0.3. That's where I have the most energy and clearest head without having anxiety issues. Also, that normal range has shifted dramatically over the years. I started seeing an endocrinologist 2 years ago and he said that by today's standards, I should have been on thyroid medicine when I was 18 (that's 19 years ago). If we had caught it then or I had fought harder, I can't imaging where I'd be now.

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  16. I started with Graves' disease in 2001, went into remission in 2007, and have been hovering around the border of hypo for several years now. Sometimes I test just over the border, sometimes under. The test my docs use is the .4 - 4.5 as normal TSH range. My test last week was 4.45. I'm 5 one hundredths from medically hypo, but no doc will give me medication to get me closer to the median because I still test "normal". It is infuriating. The last endocrinologist I saw was SO condescending I left in tears. The exercise I do, the excellent diet I have made no difference to her. She made it very clear she thought I was lying. Being right on the border of hypothyroidism clearly is not my problem, I'm just a lying lazy fatty. I didn't see another doctor for 2 years I was so upset. Granted, nothing changed when I did. Glad you are getting somewhere with your treatment! Wish I could find someone who will listen.

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    1. Ug, I'm so sorry to hear this - especially since I've been hearing how common it is for doctors to just not listen. :(

      I've had luck with a doctor who is both an M.D. and a naturopath, which means he embraces a lot of alternative medicine, and kind of straddles the Western & alternative approaches to medicine. That means you have to be a lot more informed as the patient (frankly some of his stuff seems a little TOO alternative to me...), but it also means he's willing to listen where traditional doctors often won't.

      So all that to say, maybe start looking for a doc in your area who's open to alt. medicine? Even if you don't *want* anything alternative, at least those docs seem more amenable to treating Hashi's without just looking at outdated "normal" ranges.

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    2. Thanks Jen :) I actually know an NP and have discussed my struggles with her. Need to bite the bullet and go see her. I work in pediatric healthcare research and docs can be so inspirational and open minded, yet at the same time SO rigid!

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    3. You are so lucky! Finding a good doctor who will listen is really hard and you got one right to start. I don't know why so many endocrinologists are uninformed assholes but they are. My theory is that they got into the field to get a cut of all that easy diabetes money. My current guy is good but in his late '70s and not up on the latest research but he's so much better than anyone else I've seen in 35 years of living with Hashimoto's that I'm sticking with him until he dies or retires.

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  17. Some days I'm just too tired and discouraged to try to find a way out and I just deal. But I'll keep rereading this blog post and hopefully motivate myself to get up and keep searching. Right now, I'm in quicksand and the more I struggle, the deeper I sink. Hopefully I can find a branch to pull myself out...

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    1. Remember that it's ok to take a break, Kimberly; give yourself permission to lay on the couch and watch Netflix for a day. Or, heck, even a week. Sometimes you need to hide from the world for a while to reset, and then find that energy to come back swinging. It doesn't have to be all you, either: find a trusted friend or family member to talk to, if that helps, or if you think this is more serious than that, please talk to a professional. Also - HUGS!

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  18. I'm curious about the thyroid/anxiety connection. I was on the opposite side of the spectrum with Graves disease (hypothyroidism) and had to have radioactive iodine therapy which means a lifetime trying to stay at just the right dose of Synthroid with a body that changes in terms of losing and gaining weight, plus I really think my stress levels change how much I need as well. That's just something I noticed, and I don't have any medical proof of that. Good for you for looking for answers. Thank you for sharing what you've tried!

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  19. I've had Hashi's for 25+ years and hate that the medical community is just now considering the root cause and that healing the thyroid can happen vs. taking a daily pill. I would've preferred a more holistic approach but better late than never for the newbies. There is a line of research that indicates gluten intolerance may trigger some Hashi reactions (virus is another) in that the thyroid resembles gluten and the body can't differentiate between the two during an immune system attack. Going gluten, dairy, and sugar free (mostly - 'cause there is an annual birthday, right?) have helped me gain control of my health. It's not as hard as it sounds when I feel sooo much better until I backslide and it's a wallop of a reminder to get back on track.

    Not sure if you've come across these practitioners in your research but in addition to Dr. Isabella Wentz, Suzy Cohen, Dr. Tom O'Brien, Dr. Alan Christianson, Dr. Josh Axe, and Mary Shomon are all knowledgeable about Hashi's as well.

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  20. Yes, keep fighting the fight. I totally believe in you. You are one amazing gal!

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  21. Thank you for being so willing to share! I am a fellow Hashi's sufferer, but unfortunately my was caught late enough in the process that pre-cancerous cells were forming, so I had to have the left lobe removed. It has been three years since the surgery, and only in the last six months have I started to feel like I'm not dying. My first doctor refused to increase my synthroid dose to an acceptable level and my TSH kept going up, up, up and I kept feeling worse and worse. I finally found a doctor who put me on a high enough dose to bring the worst symptoms under control, but they are always there. I've never had my selenium levels checked, so that is something that I plan to check in on. I never suffered with anxiety until post-surgery either, and now it is a daily nuisance. Maybe if I can get the selenium levels to where they are normal, I might get some relief from it. Good luck on your course to better health and please keep posting--those of us who share similar issues get a lot from reading your research! Thank you!!!

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  22. Hey Jen - you are such an inspiration. Not because you have anxiety and keep fighting it, not because of this blog or that - just because you as a whole are freaking awesome. I want to be a crafty, geeky, and witty chick like you. I want my own John. I will probably never achieve any of those, and that if fine, because you so kindly give us a window into your life. And it is freaking awesome.
    You're never out of the fight, and you have a legion of people here supporting you and cheering you on.

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  23. You are inspiring. Thank you for your honesty and openness.

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  24. Apologies if I already posted this and/or you've had enough personal anecdotes. :)
    My mother was on Synthroid forever and apparently her doctor took her off it recently and her thyroid levels stayed normal. He told her it happens sometimes that your body can eventually do without it. So it may not be a life sentence.

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  25. I've been on Levo, the generic Synthroid for the last two years due to thyroid cancer. The trick to this med is taking it EXACTLY as instructed. I was complaining on the My Fitness Pal forum (an amazing bunch of women and a wealth of info in those groups) that I was sluggish and I got dinged for taking it wrong. You have to take it with a full glass of water (not the swallow that I was taking) and wait an hour afterwards to eat. I felt a difference within days...and now worship those anonymous ladies who beat me up in my post. They were so right. Good luck! Hormones are ridiculous things to try to understand.

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  26. If your not already part of it, there is a great group on facebook called "Thyroid Sexy". Its a bit of support, some great information, and especially has some focus on Hashis. I'm sure they would love you sharing your story and your book recommendation. :) I'm glad you found something that works for you. While Synthroid has made me start to feel a little better, i'm still struggling to get my vitamin levels up. Good luck with the anxiety issues, i hope you find improvement in your symptoms.

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  27. I'm so happy that you are digging deeper with this disease, there is so much more to it than meets the eye. As a fellow Hashimoto's sufferer I can completely relate to everything you have written. The selenium and proper dose of meds helped my anxiety and panic attacks but going gluten free helped as well. Believe me, I resisted it for a long time but once I learned how inflammatory foods can affect mood (and gut) I gave it a try and it made a big difference for me. Sure, I miss donuts and French bread, but not feeling like I'm on the edge of a panic attack every day is worth so much more to me.

    And about losing weight, I've sort of come to accept that I am frozen into the size I am now, like a vampire stays the same age when s/he's turned! That's been a learning curve as well - being motivated to eat well and exercise because it feels good not because I think it will make me lose weight. I've had to totally redefine my ideas of what being healthy means.

    Thank you for being so honest and open about this, the more awareness and understanding we can raise about this disease the better!

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  28. Jen, The selenium will knock the antibodies down. It did for me. Welcome to the Hashi's Fighters! I found a lot of info on "Stop The Thyroid Madness" web site. Now I can check out this book as well. Thanks!

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  29. "At what point do you decide to just be fat, medicated and happy?" This question is going to become my new life's motto. I am fat. I am medicated. I am happy. A good deal of my happiness comes from reading this blog and realizing that there are so many others out there who are just like me. Thank you.

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  30. I hardly ever read your blog (I like it alot, but I try not to surf the web too much). However, I remembered about your panic attacks when I discovered that I may have Grave's disease, which as far as I can tell is the opposite, except that it can also cause panic attacks. (Grave's disease. Nice name, right? Inspiring!) I headed over here to tell you to go to the doctor, and I'm thrilled to see that you've already done so.

    It was SUCH a relief to discover that it wasn't all in my head, and I'm glad you are getting diagnosed, too.

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  31. Thanks for posting this!
    I have a mild anxiety issue that I treat with a prescription med - it seems to help.
    Looking into this book seems worthwhile to me although I've had my thyroid checked many times since I seem to have all the symptoms (anxiety, always cold, weight gain, etc) But my results come back as 'in the normal range', whatever that means.
    I would love to not have to take meds for the rest of my life, but they're helping me cope for now.

    I did find that eating for my body type has helped. I don't process sugar and carbs, or a lot of gluten so after doing a lot of research, I went on a diet that basically eliminated as much of that as possible. It's not as extreme as it sounds, and after eliminating those foods for at least a week, I tried adding them back. It's honestly like night and day, and as much as I love chocolate and sweets and breads, it's not worth the mood swings and anxiety I get from eating them. It may sound discouraging but it's worth a try if it'll help.

    You need to try demonstrating that shoulder stretch though! I have huge anxiety from working in a call center and my current job does require me to talk on the phone. I'd love something that might help to banish those feelings when I do need to make calls.

    Thanks so much for being brave and sharing your struggle - it helps a lot to know that we're not alone

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    1. Hey Erin! Re: the stretches, start with that one I linked to on Youtube every night. That helps a lot. Then, the one I use during free-floating panic goes like this: try to touch your elbows together behind your back. Obviously you can't reach (unless you're crazy flexible, I guess), but that motion will "open up the chest" and help give a similar spine stretch. It stops my free-floating panic cold 90% of the time, and has been a real life-saver during everything from car rides to convention panels.

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    2. Awesome - thanks! I'm definitely going to be trying that :)

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  32. It was when I saw a new doc and took her my complete family medical history that she asked questions like "Are you often tired/sluggish/have foggy brain?" that I was finally tested for thyroid (my grama had goiter issues). It was literally within a week that I was feeling awake and able to keep my eyes open on my 25 minute drive to and from work. I don't remember if that was also when I had my vitamin D levels tested (7. Literally my vit D was 7), but any time the doc doesn't refill my D it takes less than a week before naps are a requirement again and I have to pull over for a cat nap when driving.
    My husband also has thyroid issues and we have both tried to educate his daughters about being mindful of thyroid issues and talking about fog-brain/sluggishness/etc with the doctors if it occurs.

    Thank you for writing this because the more you know...

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  33. Jen, you are an inspiration--go you!

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  34. So glad to see you're getting hopefully answers Jen! Honestly your positivity in the face of anxiety is downright inspirational.

    I'd also say that with thyroid problems, especially with the supplementation, it takes a long while for improvements to come along gradually. The hormones your thyroid produces are there to regulate long-term, background functions (especially things like base metabolic rate). Consequently, they hang around in your blood for a long while after being produced - and therefore are also produced at low levels (when things become balanced, you should be losing as much of the hormone per day as you gained through combined self-production and supplementation). Therefore, the synthetic hormones are taken in very low level doses as you've to 'build back up' to normal levels, but err on the side of not overshooting. It's the exact opposite of things like adrenaline (or I think you americans call it epinephrine), which are produced in larger volumes but quickly disappear from the bloodstream. So keep at it! And I have my fingers crossed for you.

    [I'm not a clinician or anything like that but I am doing a PhD part in pathology so not entirely uninformed ^^]

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  35. Susanna Sharp-SchwackeMay 6, 2015 at 6:49 PM

    You are a wonder, Jen. And I admire you wholly!

    That said, I know that I'm a total mess when it comes to anxiety issues. And my own anxiety won't let me get a new GP. Even typing about it increases my anxiety levels, let alone THINKING about making an appointment to get that intimate with a total stranger, and that's not including the idea of going to actually see the new doctor. I just sit here getting deeper and deeper into my own anxiety-ridden mess. (That paragraph increased my blood pressure, made me want to cry, and has me teetering on the edge of an anxiety attack.)

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    1. I'm so sorry, Susanna, and I can definitely see where you're coming from. Any kind of medical buildings make my anxiety spike, let alone actual doctor visits. I've been seeing this doctor for a while now, and because he's also a naturopath in addition to an M.D., his office is very spa-like and calming. Even then, of course, I get nervous, but knowing he's a doctor who actually listens and *doesn't* think I'm crazy works wonders. (After my diagnosis I tried to schedule with an endinocrinologist, but I was getting so panicky over the appt. I canceled. Thank goodness my current guy knows enough to prescribe what I need.)

      All I can possibly advise is to try to find a doctor who's known for being more caring, and let the staff know ahead of time that you have panic issues. Definitley have a friend go with you. Type up everything the doctor needs to know ahead of time, print it out, and just hand it to him. That helps a LOT with that nerve-wracking first few minutes, and I've found some docs actually appreciate a nice bullet-point list, since it's more effiecent for them, too.

      In fact, it might be a great first step to just type that list up. Then read it over every night for a while, and visualize discussing it with a doctor. It will make you crazy panicky at first, but keep trying - and doing your breathing techniques to calm down again - until it becomes manageable.

      And lastly, I don't know if this will help or not, but you can actually order some of these tests yourself online. My mom's doctor won't run the antibodies test, so I found one you can order for about $100 online - you just bring the paperwork to a local Quest lab for the blood draw, and then they send you the results. You'll still need to see a doctor eventually, of course, but maybe ordering the tests you think you need most will help you break out of the fear a little, and give you the incentive you need to take the next step. (The site I found - and I'm sorry I don't remember which one it was - had tons of common tests to choose from, too.)

      Take it slow, though; if there's one thing I'm learning about anxiety, it's that you have to fight it with baby-steps!

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  36. I had similar symptoms (and mild anxiety that popped up in recent years) and have a family history of thyroid issues so I got tested. When I went to the doctor my heart rate was 102, so he gave my some beta blockers to slow my heart rate. Thankfully my thyroid is fine, but the beta blockers had an interesting side effect, my anxiety is practically gone. We don't know why my heart is racing yet, but it is a nice start.

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    1. When they first gave me beta blockers for my high heart rate, one of the docs mentioned that public speakers often take some before a speech, because it calms you down. So, makes sense! Be careful, though; unless you have high blood pressure, the beta blockers can make your heart rate TOO low while you're sleeping, which is what happened with me. Scary stuff, that.

      I'd dig deeper on those test results, too, since plenty of people with Hashi's have a TSH well within the "normal" range. At least look to see if you had the antibody test done - and if not, I'd go back and ask for it!

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  37. So glad you're digging deeper into this, Jen! And I think that dietary changes are usually worth trying, even just for a month or two. If one feels awesomely better, then it's worth it and one is motivated to keep it up; if not, those aren't the right changes anyway. No matter what, I'm pulling for you :)

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  38. OHMFG! I came here to ogle your do-it-yourself posts, and find this. My (new) doctor (for the last year and a half) has been sorting out my issues- which included anxiety which I've been trying desperately to hide. For so long, doctors told me that my results were either normal or just outside normal and it was fine because I was young. Just this week, my doctor and I started me on thyroid meds (after several years of merry-go-rounds). She based her tentative diagnosis of Hashi's on a combination of symptoms and test results. Lesson learned: your doctor should look at MORE than just test results!

    Her theory is that this all sprang up after a severe bout of e.Coli a few years ago (when I was living elsewhere and before I had this doctor). But the best part is that her practice works as a team, where they sort of "grand round" their patients in meetings, so several specialities can talk together. I see only one team member, but the others all have input. I was assigned to a team that specializes in women's health (PCOS, endometriosis, infertility, women's endocrine issues), and it has changed my life.

    SO SUPER THRILLED that you are writing about this! I feel like I've met a compatriot in this journey!

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  39. That's really interesting. I was diagnosed with hyperthyroidism when I was 19. 7 years later it flipped and I found out that I had Hashimotos instead. I think I've always had mild anxiety but it has been worse the past few years (stress is probably a big factor.)
    What is really strange is that both of my children have congenital hypothyroidism. The odds of that happening are extremely rare, but their doctors and mine have assured me that it's unrelated. But quite a few of my relatives have autoimmune issues so I often wonder if some connection will be discovered in the future.

    I used to read a site years ago that recommended supplements for thyroid problems. If I can find it again I'll email you the link. I definitely want to check out that book. Thanks for the recommendation!

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  40. Jen - I am always inspired by you and your awesome blogs. Keep being persistent, keep being you! I love reading all about this and other reasons for random panic. I like to think I know part of the reason I started having panic issues but some things that trigger them still blow my mind. I definitely think that your research and going back to your MD with questions and information is awesome and you are your own best advocate (along with that awesome hubby of yours!). Thank you for sharing everything - and glad to hear the great news from your docs!

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  41. I know of folks who have gone the other way with the thyroid being overactive and instead of panic attacks etc, they get overly angry or aggressive. (one person was real mild mannered and this was their clue bat: having a road rage incident for almost no reason, and during the rant something in their mind clicked "What is going on here?") So I can easily see a whonky thyroid causing the other issues you've been suffering.
    Glad it seems you've found a cause, and hope treatments brings them to an end

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  42. Good job Jen! I am so proud of you for always looking for more answers. I hope that each new answer helps you to take another step towards being anxiety-free. <3

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  43. Haunting NotionsMay 7, 2015 at 11:51 AM

    Thank you for talking about your ongoing medical situation, Jen. I am not an anxiety sufferer, but I can still relate as someone who's struggled to find the right doctor. After 37 years of an undiagnosed bleeding disorder, it was recently determined I have ITP (the immune system attacks healthy platelets needed for clotting/healing). My current GP was the first to actually try diagnosing the cause of my low platelet count. In the past I often felt poo-pooed when bringing up issues potentially related to my bleeding disorder. It was like I didn't know what I was talking about. Having a doctor who listens and takes me seriously has been a life-changer. Hearing stories of others who wouldn't put up with dismissive or condescending doctors confirms that I made the right decision to not settle. It also gives me courage to continue standing up for myself. :)

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  44. This update is timely as I just had a confusing encounter with my PCP where she first denied that Hashimoto's could be interfering with a regular work schedule when managed with meds (I work in an office, but sometimes energy levels just don't work on schedule) and then told me that my problems stemmed from anxiety, depression, and sleep issues. Or you know, the results of a poor, bashed up thyroid!

    I started seeing an endo a couple years ago which just saved me as she ran a new round of tests, had suggestions on vitamins/diet, and eventually nearly tripled my Synthroid does, plus adding a daily T3. After this encounter this week I was upset the rest of the day, ruminating at how much I have to fight and advocate and teach myself to just feel better.

    I'm also a little jealous of your antibodies count Jen, mine--when finally tested--was well over 1,000.

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  45. I have been learning more and more about the importance of a healthy gut, and reading what you wrote made me wonder: it is that Hashimotos leads to GI issues, or are the GI issues actually causing the Hashimotos? Just a thought. I think it is FABULOUS that you are not accepting the "we don't know" and doing everything you can to learn about your own body and try to figure out what it needs. So I would encourage you to take a deep breath and do the dietary changes that are best for your body/gut and see what happens. I have been trying to get up the guts (ha!) to eliminate sugar and go low-carb again--I did it once a few years back for Lent and was amazed at how great I felt, body and brain.

    And here's another thought--did you know that the bacteria in our guts could be what is causing mental/emotional issues? There's a fascinating bit of info in the BBC Mammals documentaries (but just google to find it) about how there is a bacteria that can only colonize in the guts of cats. So the bacteria actually inhabits rats, and then affects the rats' brains so that they are not afraid of cats and will even go TO cats. Whereupon they are eaten. Whereupon the bacteria happily colonize and start the process over. But did you get that--the bacteria somehow overrides the natural instincts of the rats! I am thinking this might be the same bacteria that can be dangerous to people--it can infect humans, and I have read that researchers think that "crazy cat lady" syndrome might actually be the result of an infection of this bacteria, which can lead its suffers to paranoia and isolation. On a different but related note, I have noticed that when I go off of sugar I unconsciously start craving and eating high-sugar foods that I normally don't eat, like marinated bean salad and sweet potatoes. We know that when the different strains of bacteria in our guts don't get the kind of food they need they die off and can make the host sick until its all over; I seriously think the sugar-loving bacteria in my gut (which is, by the way, the bacteria that is NOT healthy for us) somehow affects by body on a very subtle level when it wants to be fed. I also notice that I get unreasonably ANGRY sometimes when the only culprit is food or blood sugar. So, there's a lot we still don't know about the connection between guts and brains, but I'm sure the answer lies in there for you!

    Oh--and if you want a long-distance cheerleader and accountability partner for your dietary changes, I'll be that for you. If you will be that for me. ; ) Seriously--let me know if you are interested.

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  46. Great post and good work! And thank you for my new back-stretch exercises. Your studious mind totally rocks.

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  47. I love your determination and courage. You got this.

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  48. You all have my deepest sympathies. One question, though: I've lived abroad for many, many years now, so reading a post like this, it really strikes me at how "American" it is with the doctor visits, meds, test, etc. A very Western-medicine approach. I'm just curious if you've considered the root causes beyond your body? (I.e. an ecological approach, considering your environment and your body's relationship to the environment.) I'm not sure what I'm suggesting in any concrete terms, but just a different perspective of the issue, I guess. Considering things like, time spent at home with just one person, TV-input, etc. What about the possibility of things like a Pilates or simple yoga/meditation class? It would be a little practice in "getting out" and "getting through" something, as well as moving your body and developing a stronger sense of self (mental and bodily -- or the bond between the two).
    I'm don't suffer from this condition, although I have had other issues and I understand what it's like to suffer from something others can't understand. So please take this comment with a grain of salt.
    Wishing all of you the best!

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  49. As the mother of a young girl with anxiety disorder, we also had to do our research and eventually think outside the box (we didn't want to medicate a five-year-old, but we also didn't want her to constantly be suffering through panic attacks). It turns out that behavioral therapy teamed up with what I'd originally considered (but no longer do) to be New Age craziness has worked wonders for her. You never know what's going to help--and seeking out new ways of tackling any illness (anxiety or otherwise) can yield wonderful results. I'm so glad that you did your research, Jen, and that you're seeing the results. Godspeed on the continued fight against all of your health issues, including the anxiety. I know it's not an easy fight, but you're really brave and strong for continually throwing yourself into the battle.

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  50. Thank you for sharing this. I have been struggling with sleeplessness and excessive fatigue for years. My doctor tested my thyroid a year or so ago, but I will mention this to her next time I see her. It's frustrating to be tired all the time. I had an in home pulse oxyimetry (sp?) sleep test a couple of months ago, and I found myself hoping that they would find something, so they could fix me. I was pretty disappointed when they said I was normal. I'm glad they have found something to help you. I am going to keep on my doctor about it. I hope they can figure me out sometime soon.

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  51. I definitely understand the anxiety/depression side of messed-up thyroid. My own was diagnosed when my wonderful think-outside-the-box doctor said she had a hunch when I came in snapping my last straw with post-natal depression. The meds have been great, a slow increase until last year when the thyroid decided to quit- Cue a stone on in a month, sleeping all afternoon and extremely low mood. Back on a larger dose and everything's back to normal. l lost 18lb this year and feel good :) You will make it to Tokyo Disney, and Disneysea. You can do it :)

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  52. Gorram'it Jen! You've let onion chopping Ninjas into the room behind me!

    Seriously though, I'm so very happy for you that there are answers for you...that's half the battle right there...knowing the "names" of the things that are happening with you!

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  53. I'm glad you're doing well on the Synthroid! I have Grave's Disease, not Hashi's, which is usually an EXCESS of thyroid hormone with rapid weight loss that results in your thyroid having to be destroyed through radioactive iodine or a thyroidectomy, which then leads to hypothyroidism, but mine presented weird. Long story short, I'm extremely overweight, despite the hyperthyroidism, and I kept cycling back and forth between hyper and hypo and switching between ATDs and Synthroid. The Synthroid made me sleep ALL THE TIME and I finally said ENOUGH! and did more research into diet, etc.

    I still haven't lost any weight and occasionally I get symptoms, but I've been drug-free and within range on my blood work for two years. The biggest change I made was to stop drinking green tea, except for an occasional cup. Tea actually can contain high amounts of fluoride, which was used to treat hyperthyroidism before ATDs were invented. It's a challenge, making sure I'm drinking enough tea (and eating enough goitrogens, like spinach, cabbage, broccoli, etc.) to keep me from going hyper again, but not so much that I go hypo, but at least I'm off the pharmaceuticals.

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  54. Can I have the Hashimoto disease if I have heat intolerance? I can't stand being too hot

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    1. This is me! I always ran a little warm even as a kid, but it's become absurd in recent years, whether caused by Hashimoto's or not. I wonder if the cold intolerance stemmed from the prevalence of women having thyroid disorders and (as far as I've observed) a majority of women feeling the cold more? Perhaps the correct definition is intolerance to any temperature relatively extreme for one's comfort.

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    2. Heat intolerance is actually a symptom of hyperthyroidism, not hypo. Some people can actually have BOTH Hashimoto's and Grave's Disease, which can cause some really screwy symptoms, or sometimes have thyroid issues that swing back and forth between hyper and hypo.

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  55. I finally convinced myself to talk to my doctor about my suspected thyroid issues (ALL THE SYMPTOMS) and he said there wasn't anything wrong. So I guess I'm stuck :\

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    1. You are NOT stuck! I went to SEVERAL doctors who told me there was "nothing wrong" and it was all in my head. Find another doctor; one who specializes in functional medicine. I see an osteopath in the Richmond, VA area who is WONDERFUL!

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  56. Jen,
    2 great resources:

    WHY DO I STILL HAVE THYROID SYMPTOMS WHEN MY LAB TESTS ARE NORMAL?
    Someone already mentioned the website, but the book, STOP THE THYROID MADNESS delves into all the psychological aspects of thyroid disease; depression, anxiety, etc. It took me 12 years, but I finally found a doctor specializing in functional medicine who didn't tell me that my blood tests were "normal" and therefore there was nothing wrong with me.

    Along with those 2 books, check out Joe Dispenza; drjoedispenza.com. He teaches meditations that are AMAZING and nothing short of miraculous. His Progressive seminar was the first one I've gone to where I came out of it after Day 3 feeling energized, calm and balanced vs. the normal my-brain-is-full & get-me-away-from-all-these-people. Coincidentally, he'll be in Orlando in September doing a one-day presentation at the I Can Do It! conference, so you wouldn't have to get on a plane.

    Thanks for sharing your story. You are going to inspire and help so many people! :-) H.

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  57. Wow! I have autoimmune thyroiditis, vitamin D deficiency and anxiety, and I didn't know the three of them are related! I have an appointment with my endocrinologist in a few days; I'll ask her a hundred questions!

    The funny thing is that I came to your blog absolutely by chance, I wasn't looking for thyroid information, I just arrived here and I'm so happy that I did :)

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  58. Was just doing some reading and found out there is a woman named Carrie Vitt who runs a blog/website called Deliciously Organic and she also has Hashimoto's. Maybe she has some tips you could try as well.

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    1. Aaaaaaaaand now I see that someone else told you this in the very first comment! Oops. LOL

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  59. I noticed you pinning gluten free recipes on Pinterest, so I popped over and saw this post and I thought I would comment. I just want to wish you good luck and healthy eating with your new life style. Cooking is a pain and it takes a while to not miss the old (and easy) way of eating. I went gluten free (actually grain free) about a year ago and I feel great. It a lot of work (and a lot of prep every week) but I do feel much better. I haven't been diagnosed with anxiety, but with PCOS and PMDD. Both of those have improved enormously with my diet. I also used to have free floating anxiety, especially in social situations, but it has gotten a lot better and I have been noticing that I have been more inclined to try to overcome other fears as well. I'm actually planning to go zip lining later this year and I have always been TERRIFIED of heights. So, good luck, I really hope that it helps you as much as it did me.

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  60. As a teenager with a severe anxiety disorder, your blogs have really been amazing. I started reading cakewrecks with my mom, and it grew into something that I really loved checking into because of your amazing humour that I truly found funny. I would look at it when I was stressed, and I would remember the horrid cakes and your comments throughout the day and it would keep me going. I started reading Epbot because I saw it on the side bar, and finally clicked on it to check it out. I'm a huge nerd and so finding someone else, and an adult at that, who understood and ENCOURAGED that was incredible. My anxiety still spikes nearly every day, and panic attacks are regular, but I'm going to a convention for my eighteenth birthday, and I get to go to Harry Potter world and visit Diagon Alley this summer. My parents have accepted that I'm a little weird, my mom embraces Fandoms now, and my little sister is being raised in the art of being a nerd girl. You've helped me so much, and inspired me to do so many things. I cosplayed, seriously cosplayed, for the first time freshman year. I've made friends who get the struggles of my disorder. I've even started a blog and am considering a YouTube channel so I can hopefully reach more people and help them through things like you did for me. Thank you for being you, even when it's hard.

    -Ginger

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    1. Hi, fellow teenager with an anxiety disorder here :) your comment made me really happy, and I'm definitely gonna check out your blog. Hope you keep getting better and better. Oh, and Jen's blogs also helped me. I honestly don't know where I would be without them. Certainly less accepting of myself and the things I love. I probably wouldn't have even met my best friends without Jen, because we met over shared interests; if I hadn't started reading Epbot and cake wrecks, I wouldn't have become the geeky girl I am today.

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  61. This makes me so happy for you and for all the people your blog is helping. YEAH SCIENCE!

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