Sunday, December 7, 2014

Highs And Lows, Plus More Potter Pics!

Lots of good news to share, for those of you keeping track of the Yates household's health:

- Lily, our little over-groomer, has been med-free for going on three months now, with only one minor flare-up in all that time! I credit our latest food change, a grain-free rabbit formula. (This one.)

("Oh, did you need this hand?")


- You Facebook peeps may remember my sharing a post John wrote a few months back about his hearing. If you missed it, here 'tis:


John's appointment was pushed back nearly a month, but he finally got to see the specialist about his CT results, and... [drumroll, please]... his ear is fixable! He goes in for surgery mid-January! And it might just restore his hearing to 100%!


- And finally, I'm continuing to make progress in pushing back my agoraphobia, though it's not without its horrible yucky days. Last week John & I went back to Universal for another visit to Hogsmeade and Diagon Alley, and I rode the Hogwarts Express. It was amazing. And I didn't panic!

 





Just a day or two later, though, I had a couple of bad days, with lots of free-floating, out-of-the-blue panic while just working at home. It's a little easier when you're going into a situation expecting the panic, but when it invades your "safe" places, like at home, or when you wake up in the middle of the night having an attack? Gah. SUUUUCKS.

Even half asleep and half out of my mind with panic, though, I remembered my lessons and started my SRB exercises. (That's "Stop, Refocus, Breathe.") I was convinced they weren't helping, but I kept it up anyway, and I know that's key. Looking back, I'm sure it probably helped me hang on through the worst of it.

Fortunately that out-of-the-blue kind of panic responds really well to chiropractic treatments for me, so after a visit to my doctor I felt back on track: less fragile, ready to jump back in the fight.

Oh! And I got something really encouraging in the mail, from reader Marie C.:

A Baymax Kokeshi doll!

Since seeing Big Hero 6 was one of my first big steps in this whole exposure therapy thing, Marie painted him for me as a kind of token. He's joining Mickey & Rocketeer under my monitor:



And last of all, I got my mountain of test results back. The doc says I have "shockingly" low vitamin D levels (John & I burst out laughing at that part. I really AM turning into a vampire...) and something called Hashimoto's disease, which is just a fancy name for a sluggish thyroid*. All good news, since both are easily treatable, neither seem directly tied to my anxiety anyway, and all the other tests came back clean.

[*Correction: it's actually an autoimmune disease, and you guys are teaching me a LOT in the comments. Guess I have a lot to learn!]

Our family cruise is in one week, which is still a little scary, but I'm feeling more confident. The thought of stepping onboard doesn't fill me with dread anymore, and while I can't say I'm raring to go, I know I'll find enough good to focus on with my family to carry me through.

But first, I have more Christmas posts to write!

Happy weekend, guys!

95 comments:

  1. I love reading about your success as you navigate these challenges of life. I admire you for not letting them take over you. It gives courage as I face my own challenges. Thank you for sharing.

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  2. you might want to check out the hashimoto's disease as a cause for your anxiety. I've been doing some research and it seems like thyroid issues sometimes lead to anxiety issues. I'm looking into the same thing for myself, just wanted to give you another option.

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    1. I was going to say the same thing. My mother, brother and aunt all have low thyroid, so I looked up the symptoms (I have a lot of them, but blood work is still within normal limits). My dog also has low thyroid and anxiety is one of the symptoms he had (dog with overflowing confidence suddenly being anxious was suspicious).

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    2. Thyroid trouble pretty much messes up everything in your brain, so it's possible that correcting the thyroid issue will help with the anxiety too. I'm hypothyroid, but mine leads more to mild depression than anxiety for the most part. It's possible to be within the "normal" limits and still have some symptoms though, so worth getting on a low dose of medication to see if it helps.

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    3. Same here I have an under active thyroid and my anxiety/depression has at times been through the roof. It's awful. I have a similar issue a lack of Vitamin D, although my really big issue was anaemia.

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    4. The synthroid medication can also exacerbate stress and anxiety. It's a little researched side effect. I was under a great deal of stress at work when I was diagnosed and wasn't aware of that side effect. Basically, my stress was elevated, adding paranoia, erratic mood swings, and emotional outbursts to the problem. I was fired from my job because of that and I didn't find out about the side effect until after. I was only on the meds for a little more than 2 months. I've been off medication and my thyroid function has been fine for two months now. Had I known about the side effects, I would have been able to deal better with the situation and still have a job. Keep a record/journal of how you are feeling and keep practicing your SRB exercises. You already have a great head start on dealing with anxiety and have great support in John. You will be able to handle this and thrive.

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  3. I'm awaiting blood test results for Thyroid crud too...insane how much of all that is looped in together

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  4. As I've dealt with some health issues of my own, I've found a lot of medical resources that say thyroid issues respond well to a gluten-free diet, might be something worth considering. Glad you are getting some answers and good for you managing a middle of the night attack, managing a middle of the night anything is tough!

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    1. Another thing that helps is iodine. You can actually get iodine to apply to a patch of skin to be absorbed, and it's supposed to help.

      I haven't tried it, but I wish I had known about that treatment when I had thyroid issues, because the doctors had trouble figuring out how to treat me. One day I'd have my TSH levels tested and they'd be through the roof. The next week I'd go back and they'd bottom out. They couldn't plan a treatment, because they didn't know if they should raise my hormone levels or lower them.

      Anyway, I know that my thyroid issue had a lot to do with my emotional wellbeing. When my hormone levels were on one end of the spectrum, I'd be constantly hungry, energetic, and almost manically happy. On the other end of the spectrum, I would spend days on end forcing myself to eat. My heart rate was often rapid and erratic, and I felt anxious all the time.

      If I remember correctly, you once mentioned in a post that your anxiety came on suddenly. I wonder if a hormonal imbalance of some sort played a role in this?

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    2. Are you nuts, recommending iodine for someone with Hashimoto? Hashimoto thyreoiditis is an autoimmune diesease. The patient's own immune systems attacks and slowly destroys the thyroid gland. Stimulating the thyroid with iodine only speeds up that process. In fact, Hashimoto sufferers should try to avoid a high iodine intake!

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  5. I was diagnosed with Hypothyroidism (sluggish thyroid) 7 years ago. When the nurse practitioner looked at my numbers she asked me how I even got out of bed in the morning. I thought I had clinical depression. When we got my meds sorted out my life changed for the better. I am no longer the raging bitch I was. (i used to say my depression manifested as aggression. I was not fun to live with.)
    True you will be on thyroid hormones for the rest of your life, but it is a small price to pay for a huge improvement in quality of life.
    All women should be tested regularly for Thyroid issues. We think these things happen just because we are getting older. But thats not the case. and it can be fixed.

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  6. I had to start taking Vitamin D after moving to the Pacific Northwest several years ago, but it's really unusual for someone in the South, especially Florida (!) to have that problem. Supplements are great (especially the gummies!) but seriously, girl, go outside. The reason I started taking supplements was because I was getting really bitchy in the winter, but a good dose makes me happy.

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    1. I know, I know, the irony of my living in the sunshine state is overwhelming. o.0 Before the test my doctor told me to just go outside more, too, but after seeing my numbers he put me on a high dose of sublingual supplement. I work at night, I rarely leave the house, and when I do make park runs I'm always in jeans, hats, & overshirts - even in summer!

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  7. I'll echo the comment about thyroid issues and a gluten-free diet; someone at my church manages her thryoid problem by living gluten-free and swears it's changed her life.
    Also, I just want to let you know that I'm sending every good thought and wish and prayer your way for a great trip. I know so many of us are. Can't wait to hear about the fun you've had when you get back.

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  8. Jen, hooray for all of the good news, and I'm glad you got through the stealth panic. I'm waiting happily for cruise posts and photos! :-)

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  9. Vitamin D and thyroid issues often go hand in hand, and I know that treating my Hashimoto's and D deficiency together did have an impact on my anxiety issues also--didn't make them disappear, but definitely helped! Good luck, Jen and John!

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  10. Yay for so much good news! I'm glad the doctor was able to diagnose you with stuff so that you can get working on treating them. I work in a pharmacy, and we dispense vitamin D all the time. The most common one you only take once a month, so that's nice and easy. :) My aunt actually has Hashimoto's, so I know exactly what you're talking about! I'm so happy that things are looking up for you guys, and I wish you much luck on your cruise. If there's an excursion for swimming with dolphins, you should totally do it. Best experience of my life.

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  11. Go, John, Jen, and Lily! Nice to hear your good health news

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  12. Yay! Glad to hear you are all on the upswing and that you are conquering your anxiety. My husband also struggles with it and reading your experience has helped me better understand what is happening with him.

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  13. I'm so happy for the Yates household! :)

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  14. Actually, I'm going to agree with several other people here, Hashimoto's might be contributing to your anxiety. I had Grave's Disease (hyperactive thyroid) and I had my thyroid destroyed in Oct '03. It took a while for my levels to swing the other direction and now I have a hypoactive thyroid. Over the last several years, I started experiencing severe panic attacks and I NEVER had them before. We couldn't figure out why they would seem to come on in spurts and would then clear up. After doing a lot of researching and talking to my doctor, we discovered a pattern. I would have them when my thyroid levels changed but I hadn't yet upped the dosage on my Synthroid. Once I got the correct prescription, they would abate. I couldn't believe it had taken me so long to make the connection. Your thyroid controls EVERYTHING in your body. Seriously. From weight to skin and hair, memory/ADD to emotions, to everything in between. If I were you, I wouldn't dismiss the power a malfunctioning thyroid can have. And when you start taking meds for it, take actual branded Synthroid, not the generic Levothyroxine. This is one of those few meds where the generics just don't stack up.
    I would also like to say YAY for all of the good reports though! Glad John's getting his hearing fixed! I'm hoping to do the same thing one day soon!

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    1. That's fascinating, Lindsay; I figured only an OVERactive thyroid would increase panic! So tell me, did taking Synthroid ever make you more panicky or anxious? That's my main concern, so the doc just tested my iodine levels to see if I could supplement that instead. (Still waiting to hear back from him, so I'm not on anything yet - though I have the rx for Synthroid.)

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    2. I was Hypothyroid (under active) with Hashimotos for at least 5 years, probably long before I was diagnosed. I was depressed and would have anxiety attacks, and I was on Synthroid and it did help a lot. I was also on antidepressants for a while as well, and was getting mostly better. Then this past year I was diagnosed with and treated for Thyroid Cancer, so I no longer have a thyroid. Its been crazy trying to get my TSH level down again, my Endo wants it to be around .1 (it should be hypo to try and stop the cancer from coming back) and shortly after surgery in June it was at 150 and I was having panic and anxiety attacks again. It's down at 12 now and I'm better, but still have a while to go!

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    3. I have (had) Hashimoto's as well. 1,000% agree that generics are NOT equivalent to Synthroid! Do not take generics!! It's worth every cent of the additional cost! The other "trick" I learned only a few years ago, after 20 years of being on it and struggling to keep my levels stable ... take it right before bed! It's recommended to take in in the morning on an empty stomach, but that didn't work for me. Taking it at night totally did!

      I would STRONGLY recommend that you see an endocrinologist, not just a regular doc. Taking iodine alone will NOT help with Hashimoto's. HD is an autoimmune disorder, not a true "thyroid" disease. For everything I've learned, the only real treatment is to go on replacement. As it was explained to me by my endocrinologist, basically, your immune system has decided that your thyroid gland is a foreign body and is attacking and killing it. The treatment is to replace the hormones, and let your immune system go ahead and finish off the thyroid. Once the gland is dead, your immune system should calm down as well.

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    4. Theresa B, yes! My mother just recently learned the "trick" of taking her Synthroid on an empty stomach. She was taking it in the morning but would have coffee afterwards. Her hair was falling out and her nails were splitting. Within one week of switching to taking it at night, her symptoms improved.

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    5. For me, no. Synthroid is my best friend. =) I started having panic attacks because I was an idiot and wasn't taking my meds after I had my thyroid destroyed by radioactive iodine and my levels got incredibly low. (I never had them before with my hyperthyroidism.) Once I got back on track, my anxiety/depression went away. And then I lost my insurance so I went back off my meds. (Bad idea!) And it came back. This cycle happened several times sadly. But now that I've been a good girl and on my meds for 4 years, I've only had one major attack. However, I have my meds adjusted every 8-10 months or so and I can tell when the levels are off because I'll start to feel the need to take a Xanax, among other things. It does take several weeks (month) for it to really start working and 6mo+ for your body to re-adjust to having correct levels when you first start so if you keep having attacks while your body is adjusting, don't just assume it's the meds and stop them before talking to your doctor. You might just need the dosage adjusted or a different brand/generic. Because I've been on the meds for 10 years now, I can tell when my levels aren't right and need adjustments. Your doctor will probably want you to come in for blood tests every 6-8 weeks to determine dosage and how your body is handling it. I HIGHLY recommend seeing a good endocrinologist, just because that's their speciality and they're more aware of the thyroid's idiosyncricies. I, thankfully, had a great one who was the one to help me make the correlation. I now go to my regular doctor for my management/bloodwork/scripts.

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    6. Unlike everyone else, I have to take my thyroid med first thing in the morning. When I was first diagnosed and put on medication, I tried taking it at night but I started having trouble getting to sleep (even more than usual; I have periodic insomnia). So now I take it as soon as I wake up (or sometimes wake up enough to take it, then go back to sleep) and then make sure I don't eat or drink anything other than water for at least an hour after taking it. That works better for me than taking it at night.

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    7. One more vote against generics - my endocrinologist said that the levels can vary wildly, and with the delicate balance of hypo- or hyperthyroidism, it can have terrible effects. I have hypo and got concerned when my hair starting falling out at a rapid rate, and I was having heart palpitations. It turns out that my generic pill was actually WAY too much, and I had become hyper-thyroid. Yikes.

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  15. Okay I just typed a HUGE comment about hashimotos and how its more than just a thyroid disorder and now its gone Argh! I have it too and its an autoimmune disease that attacks your thyroid and often other areas of your body. It can be a precursor to other autoimmune diseases like rheumatoid arthritis and more. It causes poor absorption of vitamins and minerals and can wreak havoc on your system if not treated properly. Many of its sympotms, and symptoms of thyroid disease in general can manifest as anxiety and depression. I have depression WITH my hashis and when my meds are off it is SO much worse. Please keep in mind too that there are so many options for treatment, and everyone is different. I do best on natural dessicated thyroid meds like armour, naturethyroid is another one. whereas my aunt does best on levothyroxine, but NOT synthroid which is the name brand of that same drug. Keep track iof how you are feeling and let your doctor know. it wont take effect right away, but once your levels are right or close to right see how you feel, are you sleepy? Grouchy? do you have heart palpitations? these are all important. Hashimotos when gone untreated or treated incorrectly can be awful. I know people who cant work due to the debilitating symptoms they have. Luckily mine is not that bad and it seems like you have caught it soon too, but its important to get the right treatment. If you don't feel right and your doctor wont change your meds, then change your doctor, its that important. Also a lot of people, myself included feel better when they eat gluten free... I know, its dreadful to think of. But I really do feel better! If you have any questions you can reach out to me! Mandee.kinsman@gmqail.com

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    1. Thank you! A "sluggish thyroid" just does not cover what Hashimoto is. When I was diagnosed, my levels were completely out of whack, switching between hyper- and hypothyroidism every couple of days! I went from heart palpitations and shakiness to sluggishness and depressive mood over and over. I thought I was going crazy! I also had a doc who basically medicated every symptom instead of investigating the root cause, and that lead to me taking pills for heart arrhythmia, anxiety, stomach ulcers, and god knows what else. It was so dangerous, and it really made me aware how many doctors are totally unaware of autoimmune disorders.

      My emotional state has never really returned to something I'd recognise as "normal" since then, well over a decade ago. I've been through two bouts of severe anxiety "outbreaks," leading me to take medication to manage it, I've been through a deep depression, I struggle with mood swings... I've come to learn that hormones rule all in our bodies.

      Jen, please go see an endocrinologist. The visit will be worth every bit of anxiety, and you will be much more clear on what the heck is going on in your body and mind once you get some information.

      (Side note: Hashimoto is very often linked to PCOS in women - a disorder where a woman is born with waaaaay too many follicles. This disorder is even more disruptive than Hashimotos alone. It is well worth looking into, and if the description doesn't match your experience at least you can rule it out.)

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  16. Good Job Jen!!!! Keep it up!!!! <3

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  17. I got a little tear in my eye reading this post! I'm so happy to hear all the good health news. As for the cruise, you'll have the strength/mindset to have fun - take lots of pictures! Happy Holidays!

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  18. Greetings from another Hashimoto friend! You are not alone! I also have an aunt and a cousin with it, and 2 coworkers. I didn't really think I had symptoms (I only got tested because the 2 relatives got diagnosed), but I couldn't believe how many things I didn't even know were wrong, fixed themselves in the first 6 months or so of meds. It hasn't been tied to anxiety for any of the 5 of us, but it just affects everything in the tiniest ways that I was attributing to all kinds of other sources. For instance, I thought I was sad and frustrated with life, but....poof, that went away. I even have a slightly higher tolerance for caffeine now! Weird.

    I am glad the 3 of you are finding answers and gaining confidence in your health. I can feel your struggles as a household with my Hashi's and extreme introvert-ism; my husband's chronic pain, sciatica and asthma; my dog's epilepsy; and my cat...well, she's not sick, just a class A jerk in classic calico form. :) Best of luck in all of your next steps!

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  19. After seeing thyroid patients as a Nuclear Medicine Technologist these past 27 years, I can definitely confirm that Hashimoto's can cause many emotional changes. Untreated, someone with Hashimoto's can go from having an underactive thyroid to an overactive one and back again, causing peaks of emotions, energy levels and more. It would be wise to seek the advice of an Endocrinologist. There is a TON of bad information about thyroid disease on the internet, so take what you read with a grain of salt.

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  20. Congratulations on making it onto the Hogwarts Express! *tamps down jealousy at not living anywhere NEAR Orlando*

    My mom has thyroid issues. It took a couple years before the doctors figured out what it was, but once they did she started medication and now she feels WORLDS better.

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  21. Congratulations on all accounts! :) It sounds like a number of things are going well for you and John right now.

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  22. I also have low thyroid and was diagnosed as very low D levels too. Anxiety has gotten better since I started thyroid medications, not great but better. Hoping starting the very high quantities of vitamin D will start helping soon too. I was able to go to Canada recently driving by still terrified of border crossing and stuck in lines, shared a hotel room without too much anxiety and ate a restaurant that my childhood crush was not only at but coming to all the tables. I did 5k for his charity and met him for the first time after being obsessed with him for 25 years. A few years ago, none of those things would have happened. No drugs, just a service dog and some essential oils. Good luck on the cruise, that is still way beyond where I'd feel comfortable!

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  23. High fives all around for your little family! Hooray!

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  24. My Vit D has been crazily low before, I had to do a prescription 8w therapy for it to get it back to "normal" and start daily supps... then it came back crazily low still the next year so back on the prescription, and now I take an even higher daily dose lol. Anyway, good times there! Glad you got it checked out and can correct it.

    A lot of good news all around in this post!

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  25. Wow! Awesome news all around! We are all rooting for you!

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  26. Hi Jen, Hashimoto's disease can be related to anxiety. Mine has been a lot more under control since getting my thyroid levels under control. I had low vitamin d levels too, although my doctor said not to go outside more (since I am very pale and we lived somewhere with high rates of sun cancer) but to take vitamin d supplements instead.

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  27. I have to join in with the others who have commented on the Hashimoto's - it really is a big deal, and could be causing a lot of your problems. I found out that I have Graves Disease a few years ago, and ended up having my thyroid removed, so I am now hypothyroid. While it is very treatable, taking my thyroid meds (I take desiccated thyroid) is extremely important for both my mental and physical health. I have found that endocrinologists are not always the best doctor for the job, either. I use an integrative doctor, and he listens to me much more than the endocrinologist ever did (in fact, I truly believe that if I'd found my current doctor sooner, I'd still have my thyroid). Do your research - if you'd like some resources, I'd be happy to send some to you. Regardless of where you get it, it's important that you know as much as you can. I'm glad that you have gotten this diagnosis (not that you have the issues, but that you know why!), so that you can continue to get better.

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  28. Great news!! I'm so happy for all 3 of you guys!! And keep it up with the SRB. I know it doesn't always feel like it's working, but my experience has been that the more I keep at it, the more it helps. I've had those 'wake up from being sound asleep with a raging out of the blue panic attack' times, and SRB really has helped me. I've created a few little calming rituals that I call "rebooting the system" to get myself back on track and settled down again. I use a little bit of aromatherapy, too, and have a lavender/camomile/white tea blend that I like that I use to help me settle down. Something about that particular scent really soothes me when I'm having an attack.
    It's so encouraging to hear the good news from you guys! And Lily looks gorgeous as usual. We recently had both of our sweet senior cats pass away within a few weeks of each other (Beatrice and Rosalind - named for Shakespeare comic heroines). Bea had been sick with cancer for a couple years, and we were working hard to treat it and control her pain, and she finally lost her battle. Her sister, Ros, seemed okay for a couple weeks, and then she stopped eating and drinking. We think she really missed her sister, and just gave up. The vet did what she could, but Rosalind was ready to go. They were both 17 years old, so we knew it was coming, but still so hard to say good-bye. I love seeing pictures of your sweet kitties and I'm so very, very glad that Lily is doing better!

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  29. Congrats on all the good news!
    My anxiety has been flaring quite badly as of late--to the point that I spent a solid 12 hours panic-attacking and went to the doctor the next morning for some ativan. At least now I can calm down. It's linked somewhat to some social circle upheaval and living in an apartment building with very noisy, angry neighbors, ugh. :( I need to refresh my mindfulness exercises.

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  30. If you ever get overwhelmed on your cruise, head to the top deck…the open sky always calmed me down.

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  31. YOU RODE THE HOGWARTS EXPRESS?!?!
    I'm crying again. I'm so happy for you, Jen.

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  32. Thank you for sharing your life with us. Please know how much you've helped others to have us know that We are Not Alone.

    Hugs and Well Wishes and Kudos for all you've accomplished and all you will accomplish!

    <3

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  33. I have Hashimoto's as well. Low thyroid also can slow down the uptake of calcium/magnesium (check out parathyroid). Getting a good capsule form of cal/mag 1:1, take before bed, can help you sleep, helps calm the whole system and can help with leg twitching or sore legs. I have been 'fortunate' in that my levels haven't bounced high and low, always stayed low . . .

    Those Potter photos = gorgeous!

    You might ask your Dr to check your ferritin level - that is your iron stores, most time they check hemoglobin only. Low iron store levels can greatly affect your mood and energy levels. For years I had a shockingly low ferritin level, while my hemoglobin was generally fine. Menopause happened, ferritin increased - huge difference.

    Wonderful news about John's hearing!!!!!

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  34. Good luck with the Hashimotos! I have Grave's Disease, which is the other side of the thyroid coin, but mine manifests weirdly. Instead of being intensely hungry and eating all the time but still losing weight, I gained weight and flip back and forth between hyper and hypothyroid. It's really exhausting.

    Couple of things to keep in mind: synthroid isn't the best solution for everyone! If you take it and your blood work improves but you still feel like poopy, insist on trying naturally dessicated thyroid, or at the very least, adding a T3 supplement along with the T4 (which is what synthroid is). When I was on synthroid I was tired ALL the time. Slept for most of the day and it didn't really make me feel better. Also, when you're on thyroid drugs, it can actually decrease thyroid function, so that instead of healing your thyroid, you actually increase your dependency on the synthetic hormone.

    I now manage mine (sort of - my blood work is usually fine, but I still have symptoms) with diet. There are lots of things that slow your thyroid down - such as cruciferous veggies (broccoli, kale, spinach, cabbage and the like) and fluoride. If your tap water is fluoridated, you should look into getting a filter or drinking bottled water. Also tea has a lot of fluoride in it, so if you drink a lot of that, you may consider looking into alternatives. White tea has a lot less than black or green. Last year I was completely hypothyroid and stopped drinking tea and I managed to get my levels within range with just that change.

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  35. So glad to hear all the good news! :) I live in northern Norway, and like many Norwegians I take a spoonful of cod liver oil every day. Sounds disgusting, and it is! But it's chock full of vitamin D and lots of other stuff you need when you don't get much sun... On the other hand, you'll probably be better off following your doctor's advice than copying an Arctic diet ;) Good luck!

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  36. I don't respond often, just wanted to say I struggle too and hearing of your hard-won successes makes me happy and hopeful. I love your imagination, your creativity, your ingenuity, your esthetic, your sense of humor, and your perseverance. Bless you both, I hope John's procedure is fast, simple, and 100% successful.

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  37. Oh, and Lily has got to be the most beautiful cat ever - those magnificent eyes! Here's one of my two cats practicing his favourite winter activity: Pelle snoozing

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    1. Elin, he is adorable!

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    2. Thanks! He may not be as gorgeous as Lily, but when it comes to relaxing, he's a pro! ;-)

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  38. Great news for you all! And well done on the Hogwarts Express. :-)

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  39. I'm so happy for you and John! You guys are going boldly into a happier future!

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  40. I've been a long time fan (especially during the years I lived in Florida!) but never commented until now. I've had hypothyroidism for over 10 years now, and, as others are saying, the thyroid can have subtly strong effects. A couple of extra points that it took me years to find out (which I'm splitting into 2 parts to make fit!).

    Part I:

    1) Synthroid (and variants) have a cumulative effect. Skipping one day probably won't have an immediate effect the following day (although I've had friends and relatives so they can feel it). I don't notice it immediately, but I can tell that my dosage is off if I start to become anxious or slightly depressed (I think I had those issues before being diagnosed as hypothyroid, but now they're very rare for me). Ask your doctor about what to do in terms of either skipping doses or doubling up the following day in the inevitable situation that you will end up missing a dose. It could be a good or bad idea depending upon the dose or specific drug used. But you should expect it taking a month or so before you start to see results.

    2) Be prepared for a lot of blood tests until you're regulated. These usually happen every 3 months or so with subtle tweaking until your test results are consistent. After that, you'll probably continue with 1-2 tests per year in order to make sure your balance is good. Be aware the "normal" range is really an average. I know of one person whose natural level is actually just within normal limits, but a doctor noticed the fact that she was consistently at the higher range and put her on a very low dosage. That very small amount actually made a big difference for her. I've read of other stories (on the internet) where people felt most comfortable when their levels were just outside of the normal range, either too high or too low.

    3) Whoever mentioned taking the drug on an empty stomach WITHOUT COFFEE was very, very, very, very correct. That said, you should take it with water (my endocrinologist said that Synthroid is very "sticky" and will stick to the teeth or gum linings if you just swallow it dry; water is important to make sure it reaches the stomach and digests properly). What my endocrinologist neglected to tell me was that coffee can seriously affect the efficacy of the drug. It took a general practitioner to suggest avoiding having coffee within 4 hours of taking the pill to get my levels regulated (my levels were mysteriously shifting; once I moved to take the pill at night, my levels became consistently normal AND I could still enjoy my daily coffee). Soy can also negatively affect the pill's absorption into the body, so that should also be avoided within 4 hours of taking the pill.

    4) You may have side effects. Those with regulated hypothyroidism may notice weight loss (since hypothyroidism often leads to weight gain) and the opposite is true for those with hyperthyroidism. You may also notice side effects more related to hyperthyroidism as you and your doctor play with your dosage until you find a good level. Hair loss is, sadly, also somewhat common not only with thyroid disease but also with the treatment. Usually this happens because treatment dosing is off and should go back to normal once levels are regulated. Hair loss can be a symptom of Synthroid, though. The standard pattern is thinning behind the hairline with the hairline preserved. This doesn't happen for everyone, but Rogaine and similar such products are said to be helpful.

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    1. Part II:

      5) Birth control pills can also have an influence on thyroid production, so if you are on a pill (or go on or off of a pill) make sure your doctor knows, as this can influence your levels. Incidentally, dysmenorrhea and other conditions connected to reproductive organs are often related to the thyroid, so, if this is an issue, once your levels are regulated, you may notice a difference (for the better!) with monthly periods.

      6) Thyroid disease is extremely common, especially for women. This is a lifelong treatment, but it's not a difficult one, and it is really worth the time and tiny nuisance of taking a daily pill and have your blood levels tested regularly. I think it's unappreciated just how much of an impact this little glad has on the body.

      7) Hashimoto's is an autoimmune disease. This isn't a big factor, but it could mean that you are more susceptible to other autoimmune diseases (like eczema, which can be exasperated by thyroid imbalances) and can also be genetic. If you have family members battling weight gain and/or depression, encourage them to get their thyroid levels tested.


      Good luck to you and John and your cat :). I think this is an exciting way to enter into the new year - with a lot of hope and anticipation for improving those health issues that limit your full enjoyment of life.

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  41. Such wonderful news on all fronts! I wanted to share just a bit of my personal experience. Back when I was first starting to work with my panic attacks I had experiences like yours. After I dealt successfully with a difficult/challenging situation, I'd have panic episodes in safe situations. With hindsight, I figured it was just my system's opportunity to "vent". Even after years of working with this, I still make sure to have safe, quiet, alone time. Especially so after big events.

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  42. So happy you're making progress on your agoraphobia Jen!! You inspired me to push the envelope in my own way (we have an 8month old who's more of a homebody than I am and prefers to meltdown rather than sleep in public) and we actually got out of the house and felt like "normal" parents today being able to wander an outlet mall for some holiday shopping with a sleepy but happy baby in tow. Also glad Lilly is doing well and that John gets a new lease on hearing - so exciting! So thanks for reminding me to take a deep breath and do something that makes me uncomfortable because only doing comfortable things gets boring and small pretty quickly...

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  43. I really feel like I HAVE to post here. I have Hashimoto's as well and it isn't just a fancy name for a sluggish thyroid, your body is trying to destroy it. An autoimmune disease is serious, but generally not treatable with pills, sadly. There is help though, and it is controlling the autoimmunity through diet. Even better, I'm betting the autoimmunity and your diet is having a massive effect on your anxiety levels. I can't stress enough what a diet that supports your body will do for you. Please, I've been through this and I don't want to see you struggle through alone when there is help beyond Synthroid. I don't want to add specifics here for the diet because I don't want you to feel that I'm spamming you or this post, I promise I'm not. I just really really hope you look further into the connection. Mine wasn't anxiety, per say, it was anger. Controlling the autoimmunity through diet allowed my body to heal completely. The autoimmunity is just a side effect of what is going dramatically wrong. I really hope you find what works! I guarantee there is help out there.

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  44. Getting your D levels back up may help your thyroid...Vitamin D works hand in hand with your immune system and low levels can allow autoimmune disorders to take hold. Autoimmune disorders like Hashimotos...Getting your thyroid under control will likely help your time of the month,too! Bad periods are a symptom of Hashimoto Disease as well! Things can only go up for all of you! What great news!

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  45. It's lovely to hear how you're all getting on and to hear all the good news. Best of luck for even more.

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  46. It took years of anxiety and doctors thinking it was diabetes and then never looking further to see why I felt like poo and my sugars were perfect. You'd think someone would've checked the thyroid in all those years, but no. When my current doc did, they were terrifyingly low and so was the vitamin D. Then I went on a three year cycle of Synthroid. They'd up the dose, my vitamin d would tank and in a month I'd be back to square one again. Doctor just switched me to Armour and it's been a vast improvement. Even when the vitamin d levels tanked, the thyroid numbers stayed where they were supposed to be. Life is so much better when there's an answer for the problem! Hope your days continue to brighten! Love reading your ups and downs!

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  47. Good luck for the op for John! Must be lovely to have hearing after so long :)

    As for you, you can do it! If you're not 100% (and low Vit D plus grumpy thyroid counts) then everything is going to be that bit more impacting on your life. Did you know low Vit D is linked to SAD and mood issues? You may find that with the treatment of those comes relief from random panics. If nothing else, they'll be easier to cope with because your mind and body aren't facing those other issues too.

    *hugs* for you both and pettings to the feline if allowed ;)

    P.S. Happy Christmas!

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  48. Yay! I'm jealous. I haven't made it to Diagon Alley yet. High fives all around for health issue stomping!

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  49. YAY for everyone! And I want to thank the person who mentioned thyroid and anxiety. I have an appointment with my PA at the end of the month since I've been taking anxiety meds and I'm convinced I have a thyroid problem no one else sees. This is a "good place" everyone, thank you all for making it one. :D

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  50. Just a thought and I dont need an answer and am not prying, but it might pay you to keep a track of your menstrual cycle (ovulation and menstruation) and see if any flare ups are co-incidental. It was the key to my handling my anxiety attacks for decades now. I could manage most of the month but I would have bad phases which in the end turned out to be at the time of my hormonal peaks and troughs. I hate watching and anticipating these kind of things so I worked out 2 things that helped regardless. I would manage to hang on to myself and say "if in 3 hours I still feel this way I will take it seriously and scream or whatever" if I could manage that my hormone surge would have passed almost always and I would be better if not OK and could cope. The second thing was to ask myself if what I was feeling had any basis in reality, so, for example, if I was suspecting my partner of behaving oddly and therefore in my warped world, cheating on me, I would analyse evidence and almost always it was "just" feelings and there was no evidence. If I discovered anything I would either apply rule 1 or ask for reassurance/explanation. I can't say I dont get bad days any more and as I am going through the menopause it is pretty tough at times as I have hormonal surges at unpredictable times which undermines my strategies and I have lost it several times (red face of shame). Fortunately I have been with my partner long enough, and he is splendid anyway about my emotional instabilities, that he has been somewhat alarmed but not panicked himself!

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  51. The other thing which may pay you too, is to be serious about your research into Hashimotos. In the UK thyroid treatment is very underreasearched by our first line medicos and it takes a lot of effort to get it treated seriously. Thyroid medication can change your life, it has my partners.

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  52. I have low VIt D levels, too. this was diagnosed post-chemo cancer treatments, as part of a total workup to fix what we can without putting my hormones back in play. I tell you, I am in LOVE with my Vit D supplements! at first, I didn't feel different, and they said I probably wouldn't. but then, I did notice a difference in energy level on the days I took one (it's an every-other day dose). sunshine in a capsule.

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  53. So happy for both you and John! I love good news! It's so rare now-a-days.

    I have been prescribed vitamin D pills for awhile now, as they were supposed to help with my depression and anxiety. But I think I may start taking them again if they are proven to help with Thyroid?? Thanks for the suggestions, fellow readers.

    Good luck, Jen and John. We're all here in support!

    --Piper P from Washington State

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  54. That is such great news to hear about John. All our thoughts / prayers / positive vibes are going out to you and him right now. Good luck on your new prognosis, and I hope you have a terrific time on your family cruise!

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  55. Yeah Lilly, you beautiful, gorgeous girl! Good girl -- from just one of your zillion fans around the world.
    For a second -- just a second -- I thought to myself, 'Wow - they got a lot of snow in Florida!" Hahaha then I realized.
    Jen, we have said it before and we will say it again -- good on you. We are proud of you AND John (thoj)
    Being low on Vitamin D is actually pretty common in women, and I'm glad you are getting good info on it. Thanks for keeping us posted, and for the Lilly picture!
    Maureen S

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  56. I have Hashimotos too and low Vit D and low Iron come along with it. A good site for extra info is www.stopthethyroidmadness.com. Adding Selenium helps reduce the hashi's antibodies too. But YES it influences panic! I have bad days when I have to force myself to come out of the house! Reading your blog helped me go to Disney World last year for the first time in over 20 years. Thank you!

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    1. Yes i have no idea why they don't link it to panic/anxiety. In dogs with low thyroid nervous behaviours are listed so why not in people? Another vote for the STTM site. Very helpful!

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  57. Such good news for everyone!! Hooray for your whole household and a very Happy Christmas! (I'm happy to see Baymax in good company, too!)

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  58. Yay, Lily! Yay, John! Yay, Jen! So glad to read that all of you are well on the way toward excellent health and happiness.

    Beautiful photos of Hogsmeade and Diagon Alley! Now that you have annual passes to Universal, do you think you will ever meet readers there like you do at Disney sometimes?

    After reading this post and all the comments, I really want to go get my thyroid, vitamin D, and iron levels checked just so I can at least rule out those things playing a part in my anxiety and depression.

    Good luck figuring out your Hashimoto's, and good luck on the cruise, Jen. May the force be with you! Can't wait to hear about it when you get back.

    KW

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  59. Hi Jen. Re your cat. Mine has an over-washing problem on his forearms until he bleeds. I think he then likes the taste of his own blood. But a few applications of aloe vera jelly sort him out quickly and the fur grows back - until the next time.

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    1. My oldest cat (13 y.o.) developed the over-grooming a few years ago and would lick himself bald in some spots. The vet told me it was seasonal and treatable, but not serious, so I never did anything about it. Early last year, in an effort to stop his habit of regurgitating meals on a regular basis, I changed from store brand cat food (which they always loved and thrived on) to IAMS and the change is remarkable. I can't remember the last time he over-groomed, and he looks and acts like a youngster now. Plus, he doesn't throw up any more. IAMS may not be the answer for your cat, but it might be worth a try to change him to a premium food for a while and see what happens. Good luck!

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  60. Finding and sticking with a brand of thyroid meds that works for you is extremely important!! There's so much more variance among brands/generics than people realize. It may take trial and error or you may luck out and find the right one on the first try. :)

    Another thing to research is how widely available the brands are - my pharmacy quit carrying the brand of meds that worked for me and I had to call around to find a pharmacy that still carried it (or at least could order it for me).

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  61. Just echoing everyone else's comments about Hashimoto's. A friend of mine was diagnosed a year or so ago. I'm glad they were able to diagnose it for you because from what I understand it is often missed or misdiagnosed. Take care!

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  62. That is SUCH good news on all fronts! Lily's fur is so pretty, I'm glad she's keeping more of it.:) John's news is so amazing-what a blessing for him!!
    And check you out, (soon to be) world traveler! Good for you! You've totally got this. I hope you have a wonderful time on your cruise, too.

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  63. I also have Hashimoto's, diagnosed just over 5 years ago after some time of feeling not great. I ended up seeking out an endocrinologist after falling off a figurative cliff 2 years ago, she eventually nearly tripled my dose of Synthroid (T4) and added an additional T3 medication. I also have an enlarged thyroid as a result of the autoimmune damage, so my doctors monitor it with ultrasound (and 1 horrible biopsy procedure I hope to never repeat).

    If it's not obvious from these comments, you're probably in for a learning curve because as a thyroid disease patient you have to advocate for yourself a lot. Basically KNOW YOURSELF like how you feel and changes in symptoms and KNOW YOUR OPTIONS for treatment, specialists, and so forth. One thing I'd recommend soon is to include in your next blood test (commonly 4-6 weeks after starting any medication, if that applies for you) the antibodies of Hashimotos. Initially my doctors wrote this diagnosis without technically confirming it, when it was checked I was clearly in autoimmune territory. There are other causes of hypothyroidism, but autoimmune is one of the most common.

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  64. Jen, you are awesome. I'm sure you will do great with the cruise and have a blast!

    John's hearing situation makes me wonder if I should push my hubby to have his nose looked at. He's been anosmic (no sense of smell) since he was a kid, most likely from getting kicked in the face when he walked in front of a swing set. Maybe that's fixable too.

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  65. Thanks for the good news for all three of you! Onward and upward!

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  66. I have hypothyroid issues. I am on Synthroid (it's been about 5 years) and while I've seen few other results from being "medicated," I have not had a single panic attack since my levels became controlled. When I was first diagnosed, my dr thought that my thyroid might never have produced any of the required hormone. Do lots of research...there are over 300 symptoms of hypothyroidism and you'd be surprised how many you may have (like ingrown toenails, heart burn and high blood pressure). I have all of these...well, had. The high blood pressure was resolved by the synthroid. Some people find that a natural thyroid (i think they source it from pigs) is more effective. And sometimes your levels look ok, but it's still not enough. There's a group on facebook called Hypothyroid Mom that is full of extremely useful information, and information that makes you kinda go "OOOOHHH! There's a reason I'm that way!!" it's actually pretty reassuring! and you don't have to be a mom to relate...I'm not a mom and I'm so happy I joined the group!

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  67. My mother was diagnosed (accidentally) with Hashimoto's. She had her C4-C7 vertibrae fused a while back and when she went in for a check up x-ray they found nodules on her thyroid. Cells found in the biopsy were consistent with Hashimoto's. Upon researching it, it explained a lot! She had been really sick for a while...lethargic, constant unexplained pain, painful/gritty eyes (Shogrun's Syndrome), low vitamin D, and much more. (Be aware, if you are diagnosed with one auto-immune disease, you might end up with others as well.) We searched for a doctor, but here in southern Indiana there aren't really any good endocrinologists. Finally we got our GP to refer us (I have been diagnosed with Hypothyroidism) to Vanderbilt in TN. But they haven't really done anything for her. She found out through her research that what she was going through when she was sick was a Thyroid Storm. She also found out that eating gluten free can help to alleviate some of the symptoms. She has been eating GF for about a year now and feels so much better. She got a lot of her information from the book called "Why do I still have thyroid symptoms when my lab tests are normal?" by Datis Kharrazian.

    Good luck to both of you!

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  68. Jen,

    I am so glad that you are doing so well! I am also very happy for John as well and didn't remember his hearing situation. As for your diagnosis I am going to recommend a diet for you that may help. I have a whole bunch of autoimmune diseases and this diet has helped. I have more energy and can walk without limping. It called "The Virgin Diet" by JJ Virgin. She says that most autoimmune diseases are caused by food intolerances causing the body to be in state of constant inflammation. My husband and I started this diet and within two days my joint pain went away. He also lost 30 pounds in 5 weeks; I lost twenty. Before you try any medication please check out this diet. Books are available at Barnes and Nobles and through Amazon. The diet itself is very hard but the results have been so worth it.

    Maureen

    P.S. It was great to see you in Pittsburgh!

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  69. Glad to hear everyone's health is on the up and up. Lily is a beautiful cat, although I would have like to see her in a Christmas onesie...

    Out of curiosity, how busy was Universal/Harry Potter when you went?

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  70. Welcome to the Hashi's club! As someone who has struggled with panic attacks for many years I can tell you with certainty that anxiety is related to your thyroid and it is going to get better! I spent years working with therapists, taking anti-anxiety meds, reading all the anxiety books (Claire Weekes, Edmund Bourne etc.), doing the breathing exercises etc. but my panic and fear of panic just seemed to get worse. Once I was diagnosed with Hashimoto's and started treatment I got much better - I was floored! I spent all those years of white knuckling my way through life and thinking I was just being a baby, couldn't cope with stress, wasn't doing enough exposure therapy when in reality my anxiety had physiological roots and I was sick. This has been a revelation for me and I think it will be for you too. I honestly have days when panic doesn't even cross my mind which is a huge change from constantly feeling like there's a cartoon devil on my shoulder whispering "wouldn't it be terrible if you had a panic attack right now?"

    There is a lot of controversy and opinions in the Hashimoto's community about which medicine is best, what supplements to take and what diet to follow but I would recommend starting with the book, "Hashimoto's Thyroiditis Lifestyle Interventions for Finding and Treating the Root Cause." And then start trying things to find out what works best for YOU. Personally I have found that taking Selenium supplements and going gluten free has helped me with anxiety the most. Most people with Hashimoto's have nutritional deficiencies (like Vit D) and Selenium is a big one. I was also extremely reluctant to go gluten free and scoured the internet for proof that it was all a fad and didn't really work but I found that it does play a role in autoimmune disorder, especially thyroid stuff. I decided to try it for 3 weeks and felt so much better that I won't go back! The Hashimoto's 411 group on Facebook is a good resource of things that have worked for other people.

    Best of luck to you, treating Hashimoto's can be a roller coaster of finding out what works best for you but the good news is that worst is behind you! It's going to get better!

    -Sara

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  71. WOW. Even here, I am proud of all my Hashi Peeps! Its amazing that there are so many of us but so few people know about this disease! And I have found us all to be very supportive and willing to share our struggles an successes. Just like my Epbot Peeps! :-) There is good out there, and we are proof. (Wow, I say peeps a lot when I write...)

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  72. Yep! Vitamin D + treatment for Hashimoto's worked for me. I have an added wrinkle that I can't break down the supplemental T4 correctly, so I take mostly T3 supplements. Thyroid meds helped the tiredness; the vitamin D restored my "cheerful unflappability"

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  73. I have Hashimoto's as well. I also have Addison's Disease. There are some amazing support groups out there and it looks like tons of support here. Gotta love the Epbot peeps! I take Vit. D as well and it does help. Mine thyroid and adrenals are completely dead though, so my treatment will be lifelong. Lots of hugs and prayers! Never get discouraged when dealing with a diagnosis. There will be good days and bad days, and worse days, and there may be times when your meds need adjusting, but just hang in there.

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  74. Dear Jen,

    I have "basic" hypothyroid and both my endocrinologist and my psychologist will tell you that my depression is linked to it. My sister had almost non-existent vitamin D levels and she ended up on an anti-depressant. I know you have anxiety, not depression, but just because something isn't a major side effect doesn't mean that the correlation isn't there. Good luck and keep up the good work!

    PS -- I'm also insanely jealous of John because my hearing loss is in the cochlea and isn't bad enough for an implant but is bad enough for hearing aids. There's no surgery to fix mine.

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  75. Hi Jen,

    A little late to the party, but I wanted to let you know that if you haven't been, please be checked for Celiac disease. It often co-occurs with Hashimoto's (I have several friends with both). I myself have only Celiac, but before I was diagnosed and gave up gluten, I had very severe anxiety, agorophobia, and depression. These almost completely resolved once my autoimmune inflammation was under control, but they come right back if I am exposed to gluten :(

    Good luck, hopefully you will feel better as your body becomes balanced!

    Kate

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