Why I Felt Like I Was Dying: Hashimoto’s
Today I’m talking about what I felt like I was dying (spoiler alert: Hashimoto’s). You may have noticed I’ve been a little MIA lately, so today I’m finally sharing why. And no, there’s no bambino cooking in this oven! Sorry, Mom. Again.
I’ve been hesitant to share because I like this to be a happy escape, full of Palm Spring wishes and ice cream dreams, and let’s face it, that doesn’t normally include health hiccups. But what I’ve recently learned is so eye-opening and potentially life-changing, that if it helps just one person, it is totally worth being “off-brand” for a bit. Perhaps I will make Off Brand a new series? Where we can talk about ugly things, but with pretty pictures? TBD…
But today, let’s talk about a little something called Hashimoto’s. Here’s why I felt like I ws dying and what I’m doing to heal with dietary changes like AIP (AutoImmune Protocol).
Hashi-what-os? It sounds like a Japanese cereal, I know.
But I digress.
What Is Hashimoto’s?
Hashimoto’s hypothyroidism is the autoimmune form of hypothyroidism. Hypothyroidism is where your thyroid is underactive. I was diagnosed with hypothyroidism when I was 15 during a routine sports physical. I felt totally fine then, and was super active, playing volleyball, running track, and yes, even cheerleading. Ra-ra-ra-sis-boom-ba. I was on the honor roll. I was involved in school, was very social, and basically a super happy kid. I may have weighed 80 pounds soaking wet, so if anything I was surprised I didn’t have hyperthyroidism (an overactive thyroid, where often times people can’t put on weight).
The treatment? My doctor told me to take a tiny pill of Synthroid (synthetic thyroid hormone) for the rest of my life and come in occasionally for blood work to make sure my levels were fine. My Mom had had Grave’s disease, which is the auto-immune form of hyperthyroidism, which they treat by killing your thyroid, causing you have hypothyroidism, and where she had to take a little pill every day. Hyperthyroidism causes things like heart palpitations, and can be dangerous, which is why hypothyroidism is the lesser of the two evils. My mom seemed fine, so it didn’t seem like a huge deal. Especially since I already felt fine.
But close to starting college, and ever since, I’ve never truly felt healthy. Having an under-active thyroid makes you super sluggish, so instead of feeling like you can do anything, you start to feel really lazy and down and depressed, and cold all the time, among other things — dry hair, brittle nails, just plain off. Brain fog central. Which was not at all like my typically optimistic personality.
I started having terrible stomach problems. No matter what I ate, it seemed to make me sick. Maybe I was lactose-intolerant, I wondered? But it wasn’t just dairy. It was everything. Maybe it’s IBS, a catch-all for when they don’t really know what’s wrong with you? The only upside? I could eat anything and stay skinny! I jest. Getting sick multiple times a day kind of depletes your energy.
When we lived in San Francisco, I wasn’t doing so hot. I went to one doctor who found out my Vitamin D levels were really low, so he told me to get more sun and take Vitamin D supplements.
I also saw an endocrinologist who diagnosed me with Hashimoto’s Thyroiditis, the auto-immune form of hypothyroidism (i.e. where your body attacks itself). She said to take the Synthroid pill everyday, but eventually my thyroid would just burn out altogether and stop working. And then they would just up my dosage more.
But in the last few years, everything seemed to get worse. Along with all the typical symptoms, I also started having vertigo and anxiety, which lead to me not driving anymore. There’s something about suddenly getting really dizzy and feeling like you’re falling that doesn’t inspire you to drive. Go figure!
And I started getting colds and flus all the time. My sister would ask “Why are you always sick?” I don’t know!, I wanted to scream, but who had the energy?
And while my stomach issues had improved a lot once I realized garlic and onions were making me super sick (and making me look like I was 9 months pregnant), lately it’s been things that I never had a problem with, like avocados and papayas causing fevers and flus after I ate them.
The weirdest things would happen too. I would drink half a glass of champagne and then the person I was talking to suddenly would have one eye, instead of two (perhaps I had Cyclops Syndrome?). Pinot Grigio would make half of my head go numb. I realize how ridiculous that sounds. And doctors, among others, definitely give you side eye like you’re a total hypochondriac when you tell them these things. Even I think it sounds crazy!
I have burst into tears on more than one visit to the doctor’s office in the past few years because not only do I feel like I don’t have the energy to hold my head up, I also feel like nobody believes me or cares.
It, quite frankly, sucks.
Along with all the above, I’d also started to have these episodes where I would get really confused. I would be wrapping presents and have had no problem wrapping one gift, only to move on to the next and get super confused about how to do it. And again, burst into tears. It felt like I had Alzheimer’s. Or I was pregnant (hormones!).
So…last year I saw an endocrinologist at Cedars-Sinai, who I had waited nine months to get an appointment with. NINE months. I was so hopeful that she could help me.
While I was waiting for the doctor to come in, I was looking over my blood work my primary care doctor had sent over. Though she never told me, my Vitamin B levels were low and the lab stated that a small percentage of patients in that low range may exhibit psychiatric problems such as confusion, disorientation and lightheadedness. Ding, ding, ding!
When the doctor finally showed up, I told her what I had discovered – Eureka! — only to have her tell me that she only has ever seen that with elderly patients so that didn’t apply to me. She then proceeded to tell me how her cat seemed depressed and she gave him thyroid medication and he improved greatly. However she would not recommend me taking Vitamin B or B12 supplements.
Upon the advice of my M-I-L, who also has hypothyroidism (as does Oprah, thankyouverymuch), I asked for a prescription for Armour thyroid, which is a naturally derived thyroid hormone. My M-I-L saw big improvements on it, over the synthetic brand Synthroid. Doctors are hesitant to prescribe it because it’s not as easy to regulate the dosage. But I insisted.
Starting Armour was life-changing. The very first day on it, I felt completely drugged and could barely walk. But on Day 2 it was like brand new Golightly! I had energy. I woke up in the morning. That never happens. I hit up five stores in a day. Normally a visit to one would deplete me. It was amazing. Even a lot of my stomach problems subsided. Along with the Armour, I also started taking Vitamin B and felt drastic improvements. It was a whole new me! <Insert Kathy Lee singing If they could see me now! here.)
But recently… it’s all started getting worse again.
I’ve been walking around hunched over because I don’t have enough strength to stand up straight. My hips have started to hurt every day. My voice is weak. I feel like I’m 80. I’m not getting out of bed until after noon. It seems I have a cold or flu every other week.
The thing with Hashimoto’s and all of this thyroid stuff, is that it always kind of a slowly creeps up on you. You gradually start having these symptoms, and you forget Oh wait, this has happened before. It’s really important to have someone in your life that can help you with that, and I’m lucky to have Fred Baby. But even he forgets sometimes. For both of us, it’s always a big slap-on-the-forehead moment, like Duh, it’s thyroid!
We both began doing some research on our own to see what’s what, as doctors have never been much help. And what we’re finding out is shocking. And enlightening. Which is the reason I wanted to share, because if there’s a chance this may help you with Hashimoto’s or any auto-immune disease or chronic disease for that matter, then it’s worth this unusually long and “off-brand” post and fear of looking like a crazy lady.
Note: If you have any autoimmune disease, or struggle with depression, anxiety, IBS, ADD/ADHD, RA, can’t lose weight, or have any chronic illness, all of this stuff seems to be linked.
So here goes:
First discovery: A huge percentage of people with Hashimoto’s (and many auto-immune diseases) are also gluten-intolerant. Although talk about gluten has been floating around the past few years, it’s the one thing I was almost certain did not cause my health woes. In fact, I found that if I ate a piece of white bread before my meals that I was less likely to have stomach problems. But it turns out gluten causes inflammation. And leaky gut. Eew, I know. But basically, the gluten enzymes/proteins seep into your blood stream, not only causing digestive inflammation, but brain inflammation as well. It’s literally killing your brain! They even believe this may be linked to Alzheimer’s. Scary! But it could explain that brain fog and confusion.
Note: The body often confuses dairy for gluten, which is why you might need to avoid it as well. It sees it as a foreign invader it can’t break down, so also causes inflammation.
Second discovery: If you have Hashimoto’s, your thyroid basically goes spastic and you can vary between having hypo and hyperthyroidism.
Which leads me to The Autoimmune Protocol diet, or AIP, for short.
I hesitate to call it a diet because this in no way is about losing weight, or being trendy, as so many people seem to think when you go gluten-free. (Heads up: Nobody wants to stop eating gluten or bread, so it’s kind of obnoxious to tell someone they’re being trendy for going gluten-free. They’re doing it because something is wrong and they’ll do anything, including giving up their beloved pain au chocolat, to feel better. Rant over.).
AIP is very similar to Paleo in that you cut out all grains, sugar, and dairy. The aim is to heal your leaky gut, which is caused by things like gluten and processed foods.
— NO, that’s not rain you hear, it’s the sound of my tears! —
No more croissants?! Or mocha freezes?! Or Cokes?! Or milkshakes?! Milkshakes were in our wedding vows for goodness sake.
About 10 days ago, I started by cutting out gluten, but after Fred Baby sweetly made me a delicious gluten-free chocolate cake for my birthday, and it made me sick TWICE, I was open-minded to trying anything.
So I tried AIP. It’s been just over a week since I went gluten-free, sugar-free, and dairy-free and the change is already tremendous. It’s still too early to draw any definite conclusions, but it’s amazing how your body responds positively to only getting real nutrients (duh!).
And while the first few days were rough, you only need remind yourself that you’re killing your brain to not reach for that soda.
Note: AIP recommends skipping gluten-free products because they’re often not truly gluten-free. Yikes!
It is a BIG mental shift. While you’re likely not that surprised to have to give up soda and chocolate and bread and alcohol, it IS surprising to find out that if you have Hashimoto’s, you also shouldn’t have eggs, or nuts or tomatoes either.
There’s even debate over kale and iodized salt, too! In fact, it seems iodine is a big no-no if you have Hashimoto’s. (Kale, as long as it’s cooked, should be okay.)
Breakfast is the biggest hurdle. Because literally every American breakfast you think of includes something you can’t have (pancakes, French toast, cereal, eggs – hasta la vista babies).
Plus, you’re supposed to eat things like bone broth. Bone broth?! I didn’t even know what it was and it sure didn’t sound appetizing.
But you know what? I now eat homemade chicken soup every morning for breakfast. And it’s delicious. Within days, your cravings completely shift to things that are good for you. And none of it makes you sick! Hoorah! Which is the biggest encouragement for sticking to it.
AIP is recommended for at least 30 days, and then you slowly start to introduce foods back in to your diet to see what you are sensitive to. But there are things on the AIP diet that you’re even not supposed to have if you have Hashimoto’s, so I really recommend THIS book. It’s been the most helpful in telling you what you can and cannot have. Try to focus on what you CAN have. It makes it much more optimistic. And keep a food diary.
The Digestion Sessions videos on thyroid have also been so helpful. It’s scary to learn that doctors are 17 years behind when it comes to digestive problems. I don’t know about you, but I’ve already wasted a good 17 years of my life not feeling great, I’m not willing to go another 17.
The focus of both the above book and videos are on getting to the root cause. Not just adding water to a bucket filled with holes, which is the medication-only approach that most doctors take.
Many people have even been able to reverse their Hashimoto’s by healing their gut with this diet and lifestyle modification and following an AIP/Paleo lifestyle. Now THAT is encouraging!
It’s also quite amazing that conventional doctors do not recommend any lifestyle modifications if you have Hashimoto’s. They just tell you to take a pill and that your thyroid will eventually burn out and stop working. If you have Diabetes, doctors recommend not eating sugar and to exercise regularly. If you have high cholesterol, they recommend a low-fat diet. I can’t think of any other organ or body part where a doctor would just tell you, Yeah it’s eventually just going to stop working and burn out. So take this pill. Can you? It doesn’t pass the logic test.
And your thyroid affects every single cell in your body.
So it’s kind of an important one! And for those of you interested in such things, it really affects fertility. Getting pregnant is more challenging and miscarriages are a higher risk if you have thyroid problems. And if your doses of thyroid are off, it can cause birth defects. It’s serious to get it right.
Anyway, there’s so much I could go into but it can get overwhelming quickly and I’m not a medical professional, so I will leave you with a few links to things I have found the most helpful, in hopes that it may help you too. And it’s not just for those with Hashimoto’s.
If you have any autoimmune disease, or struggle with depression, anxiety, IBS, ADD/ADHD, Rheumatoid Arthritis, can’t lose weight, or have any chronic illness, all of this stuff seems to be linked.
So it’s worth exploring.
I have an appointment with a functional medicine doctor, who can hopefully help me sort this all out, and I will be sure to share, if you’re interested.
Have you ever done AIP or Paleo? Do you have Hashimoto’s? Or an autoimmune disease or chronic illness?
I’d love to hear from you. And know that you are not alone. We’re in this together!
What Is Autoimmune Paleo or AIP Diet? – what it is + what you can & cannot eat, plus recipes
Wellness Mama – Also a great explanation + list of what to eat on AIP
Autoimmune Paleo – great blog and resource and community of other AIPers
Gluten Thyroid Issues Podcast with Datis Kharrazian – the first aha moment for me!
Why Do I Still Have Thyroid Symptoms? – great book by Datis Kharrazian
Why Isn’t My Brain Wokring? – insert joke here. Also by Datis Kharrazian
Sugar + Candida video – zoinks!
Hashimoto’s Thyroiditis book – I felt like I was writing this book. I couldn’t believe someone was saying the exact words I’ve uttered over the years. Best info + lists for what you can & can’t eat & why (merges AIP with Hashimoto’s-specific restrictions) written by a pharmacist with Hashimoto’s.
Digestion Sessions – I watch a new video every night as I fall asleep & it’s better than any doctor I’ve ever been to. Plus, when your brain is not at its best, it can be a little challenging to keep what you’re reading straight. So I find the videos easier to comprehend than the books and websites.
Note: There are certain things allowed on AIP that may not be good for YOU. Every body is different. For instance, coconut definitely makes me sick, so while it’s allowed on AIP, I avoid it. Once you narrow down what you’re eating, it quickly becomes clear which things you are sensitive to.
WHAT TO EAT WHEN YOU HAVE HASHIMOTO’S
*Updated July 2020*
Wondering what to eat? Here’s a roundup of gluten-free, AIP, paleo, lectin-free cookbooks I’ve found helpful over the years for eating well when you have Hashimoto’s.
Better Together! Join our colorful community! Sign up for sunshine in your inbox here + wellness & lifestyle tips:
A big smooch and thank you to my darling Fred Baby, who has not only taken care of me so selflessly over the years, but who also has taken as much interest in this topic as I have. And has even gone on the AIP diet with me. I couldn’t do it without you.
Disclaimer: I am not a medical professional. I am just a girl sharing my own experience. I highly recommend consulting with your doctor before beginning any new regime.
MY HEALTH UPDATE AS OF 2023:
How Long It Took Me to Heal from Hashimoto’s (yes, it DOES get better!)
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Thanks for sharing Kelly. What a story, and how scary!! I’m sorry to hear you have been having such a rough time, but I am excited to hear that the new diet seems to be helping. So many women seem to have thyroid issues these days. Really makes you wonder what’s going on. That its our food makes tons of sense.
Thank you, it is SCARY what’s going on with our food supply. Did you watch the Candida video? Unreal.
My husband just caught me tearing up as I read your post, and I freaked out telling him about our similarities. I can’t thank you enough for opening up and sharing your struggle. I am a bit shocked and very relieved to know I’m not alone.
To make a long, long, long story short – I was diagnosed with Hashimoto’s about 10 years ago, when I was 20ish. My thyroid levels fluctuated and I eventually stopped taking medication for hypothyroidism after I stopped with the birth control method I was using. I feel very strongly that the hormones in the medication were having an affect on my thyroid function. I have suffered from anxiety and depression since I can remember, and take Lexapro and other drugs to combat that. I’ve had tons of blood work done and have had similar results with my vitamin B levels (admittedly, I need to be retested and take a daily dose). I also have an autoimmune disorder called Lichen Planus, which is an ugly skin disorder, similar to psoriasis that affects every part (I mean EVERY) of the body (in my case). After reading about the link between auto immune disorders and gluten intolerance, I decided to go gluten-free.
Since February, I’ve tried to maintain a gluten-free diet (I cheat with burritos every once in a while). The brain fog, fatigue, vertigo, and stomach pain you described is all spot on for me. Although doctors seemed to find a simple and temporary solution, I couldn’t help but feel these issues were somehow related. After reading your post, I am absolutely convinced that they are linked. I thought I was taking crazy pills! Naps at 11 a.m.?! Why can’t I seem to lose weight? Why is my amazing memory zapped? WTF?
Going gluten-free makes a world of difference for me. I feel like I have some energy back, I don’t feel as “foggy” all the time, and I don’t crawl into the fetal position after every meal. I found a wonderful gluten-free bakery in my neighborhood that I sneak away to (it also makes me feel a sense of kinship with other customers). And thank you for the note about why people go gluten-free. I was shocked by the number of people who asked me, “Why?”, like it was a new weight loss gimmick. That’s like asking someone who’s allergic to cats why they don’t own a cat.
One of my close friends is studying for her Master’s in nutrition, and she’s opened up a whole world for me about gut health. I had no idea how much our stomach health directly relates to our emotional health. A healthy gut really sets the tone for the rest of our bodies.
I don’t mean to overstep, but I would love to chat with you or exchange emails if possible. I am definitely going to check out those books, but I feel like having someone to vent to and get tips from would be so beneficial. This is honestly blowing my mind – I’ve followed your blog for a while now, and I can’t believe there’s someone out there who’s going through the same crap. Please know that you are NOT a crazy lady and that your story is meaningful. Truly!
Lots of love,
I’m so saddened to know you are experiencing the same thing but also comforted to know we’re not alone in this. Of course please feel free to email me at Kelly@kellygolightly.com.
I had the same reaction when I started reading Hashimoto’s Thyroiditis book. The author was literally saying exact words I had uttered, but never heard anyone else say before. I was in disbelief that someone had the same weird symptoms. Same when my husband and I listened to the Gluten Thyroid Issues Podcast with Datis Kharrazian. We literally sat there with our mouths open in shock. Start with that, and then read the Hashimoto’s Thyroiditis book & I believe you will be amazed and find it so helpful.
And though I forgot to include it above, I also stopped taking my birth control pills a year or so ago because I suspected they were making everything worse (my vertigo especially). I wanted to start with as clean a slate as possible. That said, I would highly recommend NOT stopping your thyroid medication. I did that once in my early twenties and now believe I lost many good years because of it. But I completely understand the instinct to do so. Also, re: BC pills. I originally took them because I had debilitating cramps (suspected endometriosis). However, since going off of them I have had ZERO pain. I can’t even begin to explain it. Anyway, it definitely makes sense that the BC affects your thyroid because the thyroid regulates hormones.
And one more note. Not to be the bearer of (more) bad news, but after everything I’ve read so far you might want to avoid the gluten-free bakery. At least for 30 days while doing the AIP. It seems sugar and gluten-free alternatives are not our friends either. I know, THAT makes me want to cry. But when you feel SO much better, it’s worth it. Bascilly, heal your gut and then I think (and hope anyway!) that everything improves!
I completely agree that I should stay away from sweets! I am definitely interested in trying the AIP diet (lifestyle?) for a bit to heal myself. I also want to read up on all of the great items you suggested. It’s soooo appreciated. 🙂 I’ll check in with you to see how you’re doing and let you know if I have any improvements. Best of luck and feel better soon!
PS- this reminded me of you. Might need to treat yo self. 😉
Oh, Kelly, I sure hope you start feeling better soon. Stay positive and try to keep your focus elsewhere. You mentioned bone broth…I put Great Lakes Gelatin Collagen Hydrolysate Unflavored Beef Kosher Gelatin in my coffee every morning to reap the benefits and healthy goodness of bone broth. Definitely give that a try! Xoxo.
Thank you so much for the kind words and for the recommendation. I will certainly check that out!
Thank you so much for sharing your story. I only recently started following you and I was so surprised to come across this post. I was just diagnosed with ms 🙁 and although it’s not Hashimotos or hypothyroidism I do believe that autoimmune disorders share similarities in regards to inflammation and “flare ups”.
My sister and I were just discussing changing my eating habits and have been looking for something specific to ms but all I’ve found are sites that say to avoid dairy, eggs and gluten. I had no idea there was already a well documented diet for Auto immune disorders. I will definitely look into it.
Coincidentally I’ve also been thinking of starting a blog to document and share my experiences. it’s always helpful to hear how others cope with serious health issues and the less glamorous parts of life but I think it would resonate with people, it definitely does with me.
Jacqueline, I’m so sorry to hear about your recent diagnosis. And I agree, all of these autoimmune disorders seem to be linked and share similarities when it comes to inflammation and gluten, etc. exacerbating them.
Do keep me posted on if the AIP helps you — I truly hope it does. And if you start a blog, let me know — I’d love to read it!
Wow-thank you for sharing. About a year and a half ago I became so ill. Sick all the time and never wanted to eat because of it. Climbing four stairs winded me. I found out I had acute thyroiditis which was cause by a regular old virus (could just be the common cold) that decided to attack my thyroid. It swung me hyper first and that was when I was diagnosed. The good part was that it is one of those things your body fights off itself – like a cold – and after a swing to hypo as my otherwise healthy thyroid remembered how to work and I was back to normal. Having dealt with that temporarily, I cannot imagine what you’ve been through. Having since had a baby, my experience with thyroiditis made pregnancy a breeze! Nothing was as bad as that! Wishing you health and happiness!
Oh wow, I’m so glad to hear that it was only temporary for you. The more I’m learning, it seems like if you catch it early, then with short-term thyroid hormone medication and lifestyle modifications (diet), it can be something that is just temporary if your body is able to heal itself. That gives a lot of hope — and a new way of treatment — to people newly diagnosed.
I’d love to see a recipe post for your chicken soup breakfast. And any other meal suggestions. I’ve been struggling with this diet for a couple months now to deal with a candida overgrowth and who knows what. Thinking of things to eat is a constant struggle. Thank you for posting this. I feel renewed in my endeavour to better health!
Hi Lindsey! I know what you mean, it’s so daunting. I will do a full post soon but don’t want you to have to wait so here’s what I do:
I roast a whole chicken for 90-120 minutes in an electric roaster (you can also do it in the oven). I simply rinse off the raw chicken, stuff half a lemon in the cavity, and place it in the roaster. Drizzle with olive oil and freshly squeezed lemon juice. I also add some carrots and celery. Cover and let cook. Once done, I slice off all of the meat and usually enjoy it for dinner that night, along with the carrots and celery (I have the leftovers for lunch the next day or two).
Then take the carcass (bones) and put into a crock pot. Pour the liquid from the bottom of your roaster into the crock pot and add a cup or two of filtered/distilled water. Cover and let cook on low for at least 8 hours, but ideally 24. (It sounds gross, but the idea is that you want the bones to release all the gelatin and collagen because it’s really supposed to heal your gut.) Then I pour everything through a strainer/colander over a large bowl (you want to keep all the liquid and get rid of the bones and any meat left on the bones, etc.). This is your bone broth. You can just drink the broth plain, but I like to make chicken soup.
To do so, in large pot on the stovetop, heat olive oil and add chopped carrots and celery. Cook until tender, about 5-7 mins. Then add in the broth. Add more water. Then I add in some of the leftover chicken. Cook until it comes to a boil. This lasts us several days ( I just keep adding water each day).
*I’ve read that ideally you would do three chicken carcasses at a time, so you get a really potent broth, but this is what works for me right now. Baby steps.
I have the soup for breakfast. For lunch and dinner, I have roasted chicken with a a butter lettuce salad (dressing is just olive pil + fresh lemon and it’s delicious!). For dinner we often make a salmon and green salad.
Blueberries as a snack.
Hope that helps!
You can make bone broth easily from beef,chicken,pork bones. Just uncooked bones, water,some veggies,spices, it’s freezable as well, I brew up on it, and my kids could eat it several times a week.
Kelly, I’m so sorry to hear what you’re going through. I’ve had rheumatoid arthritis since I was 15. Of the dozen doctors I’ve seen over the years, hardly any of them will address diet. I went gluten-free about 6 years ago. It has definitely helped. I should probably go all-out with the AIP, and you’ve got me more determined to do that. It’s hard to avoid gluten when you travel often, don’t you think? Oh, I second Natalie on the Great Lakes gelatin.
Please don’t feel guilty if you don’t have the energy to post. We’ll all be here when you get back. I hope you are lounging on Swannie in beautiful Palm Springs and feeling better soon!
You are so sweet! Thank you for that, on behalf of me and Swannie. 😉
I’m so sorry you are dealing with RA. My mom does too. Glad to know going gluten-free has helped. I would encourage you to try AIP to see if it helps even more. (I know it’s not easy.). But I just remind myself that it’s also causing brain inflammation and it keeps me away from the stuff that’s bad for me.
I have no idea how this will go once we travel. Which is a concern because as you know we travel a lot. But I’m hoping to get some good habits developed at home to make it easier. The issue with eating out is not knowing what they put in your food, especially when it comes to iodized salt. When we were in Canada last month, they were SO great about food allergies (garlic and onion), like they hear it all the time. I didn’t find that to be the case in the States, sadly, where instead they act very inconvenienced. Hopefully that will change soon. But something like a salad is probably safest eating out. I just ask for olive oil and lemon as the dressing.
I will definitely look into the Great Lakes gelatin too – thank you!
Oh, Kelly, I hope you start feeling better soon. I can’t believe you’ve been suffering this long, but I’m glad to see that you’re working on feeling better. Thank you for sharing your story- I’m sure it’s going to help others. Sending you lots of love & hugs! A + A
Thank you so much, A+A. I can’t believe how many people are suffering with these same (or similar) problems. It’s tragic. Hopefully things begin to change soon. Onwards + upwards!
Kelly, I loved this post. Thank you for sharing so honestly. I battled hyperthyroidism for several years and had to eventually TWICE have radioactive iodine therapy to have my thyroid removed. I am now hypo and take a very large dose of synthroid. Being gluten free did work for me in terms of feeling better for 11 months but now I just try to limit it and I also limit my dairy. It has helped in how I feel so much! Also, sleep is so important. It’s scary to think how much our thyroid controls in our body and it has been such an ongoing struggle for me for over 4 years so I sympathize so much for anyone going through this. I’m so glad you shared your story and are finally on a path to wellness. Hang in there!!
Thank you so much for sharing your story as well! How terrible for you to have to go through, but very happy to hear you are feeling better going mostly gluten-free and dairy-free.
I just can’t get over how many people are struggling with this.
I just love your blog and how you totally stayed on brand even with this daunting topic. You’re a pro. I have two selfish follow-up questions for you, if you’re game.
1. How do you get the photos (and rights) for the AH photos you use? I’m also starting a blog and I want my photos to be as beautiful as yours (even though I don’t have a Fred Baby.)
2. Did you choose who wins the Poolside Reunion photo? We snapped a pic at Just Modern. Not a very good one, but I Instagrammed it to you anyway. Let us know who gets it!
Hope you feel better.
Thank you for the kind words. For photos, you should credit the original photographer or source (which I embarrassingly forgot to do on this post – they were all found on Pinterest).
We’ll be choosing the Poolside Reunion winner on May 6th – stay tuned!
Thank you, Kelly. Lots for me to learn so it’s gracious of you to respond. Especially to such a basic question!
BTW, you can buy healthy bone broth on line and have it delivered to you. I also found a guy at my farmer’s market (in Marin County) who makes it every week.
Keep up the good work. Taking care of yourself is like a prayer to the universe to help you heal. You do your part and the universe does hers.
Thank you for being so brave and sharing your struggles. This post is truly inspirational… and I love how you were able to weave appropriate Audrey photos throughout!!! Wishing you loads of positive, healthy vibes!
Hi Kelly…Thanks for sharing about your experience with Hashimoto’s. I was diagnosed years ago and just about a month ago became extremely serious about my diet. That has made the difference in my life. I can see my health beginning to take a turn towards healing and I am so happy about that. Diet in my opinion makes a huge difference with this disease. I am on AIP and even though it is hard initially on many fronts, if we stay focused on what we can eat, instead of on what we have to eliminate for a period of time, it will be easier. I have eliminated soy, dairy, gluten, grains, nightshades, sugar except wild honey, eggs and the majority of nuts unless soaked and sprouted. I wish we had a small group in PS who could meet together occasionally and share what they have learned with one another. It is so nice to live life together and share what has worked and was hasn’t in the life of this disease. I did mess up and had a major setback by overdosing on Kale (a goitrogenic food). I had a major panic attack! I am now determined to reduce those foods!
It’s so wonderful for you to share your experience with everyone Kelly. And I’m so happy you’re feeling better xoxo
Kelly , that is great that you have identified what potentially can turn your life around. So sorry that you have gone through all of this! As someone “living” and not dying of stage 4 breast cancer, I would be happy to share with you what I was able to do for myself to put my “innumerable” (per the docs – we stopped counting at 25) cancerous tumors riddling my entire bod. Trust me, I was skeptical but I am alive 2 years after my diagnosis and feel like I did when I was in my 20s! (I’ll be 50 this year!) I think this can help you immensely. If you are at all interested please reach out.
How awful for you. If you’d like to see a type of doctor that will provide lifestyle changes you might try an Ayurvedic or Chinese Oriental Medicine doctor. Whatever measures you take I hope you feel better.
Hey Kelly, I have only been reading your blog for about a month now and love it! Hope you are feeling better! Have you ever been tested for Lyme disease???
Hi Kelly-I found your site through jenny and have been following your INSTA for fun vintage fashion. I just read your story and well welcome to my boat just away Hashimoto’s for Celiac Disease. Leaky gut/Candida overgrowth/vitamin deficiencies the list goes on is my boat. And I am a certified health coach. I invite you to check out Sarah Wilsons website as she has Hashimoto’s and healed her autoimmune thru diet and lifestyle. Her other site I QUIT SUGAR is also amazing and you may find some good recipes. Also check out Andrea Beaman’s website who also healed her Thyroid disease though diet and lifestyle. Nom Nom Paleo is excellent site for recipes, so is ricki heller’s vegan anti Candida gluten free site and one of my favs is The Healthy Apple by Amie Valpone who specializes in autoimmune and has fantabulous recipes. All of their stories are remarkable. It is a known fact that if you have autoimmune with Thyroid it is imperative you go gluten free. And doctors DO advise this. You just have to go to the right kind of doctor. And finding the right one is a long journey. Any Functional Integrative Doctor will prescribe diet before pills. I’m sorry it took you so long on your journey to get to a healing place I definitely agree that sucks as I’m in your boat. I have done Paleo twice, yeast free, Candida diet and obviously gluten free for life. I don’t eat eggs, or nuts or coconut. You may find some good recipes on my Instagram that will tickle your fancy. While I love your article – I have to dispute your comment on gluten free products not really being gluten-free. While I eat a non processed clean diet, I can tell you the the gluten free products on the market are actually gluten free. They are just contaminated with tons of other processed ingredients that are unhealthy. I wish you the best on your healing journey!
Kelly, I so appreciate you sharing this! I just passed it on to 2 friends, one recently diagnosed with Hashimoto’s, another who’s had a lifetime of similar symptoms but no diagnosis.
While I don’t have an autoimmune disease, I do have a rare chronic illness & can completely relate to what I’ve started calling “The Magical Medical Mystery Tour” — the endless doctors, treatments, supplements, late night google sessions, “side eye” & outright mockery when I try to describe some of the wackier symptoms. It has been the loneliest, most distressing experience of my life & one saving grace has been finding people online who’ve had similar struggles. I highly encourage you to go forth with this “Off Brand” series — this first entry has obviously resonated with a lot of people x
I have Hashi too, and your story resonates so strongly with me. I doubt my endo would go for the Armour because my numbers are all over the place, but I’m sure gonna advocate to switch to it! Also my doc is always saying “autoimmune begets autoimmune” so she is always keen on looking out for others to pop up… I hope you continue to experience treatment success!!
I really suggest you look at what is kicking off the AutoImmune response. We are seeing such a strong correlation to diet, I think that’s likely a great place to start.
BTW: If you don’t feel like your doctor is listening to you, switch your doctor! The number of times we have run into a brick wall with docs who won’t look outside of their narrow area of responsibility is stunning. Endocrinologist seem to be among the worst at that.
I’ve had hashis for 20 years but since 2010 have been hardly able to stay symptom free. I also have EBV but thanks so much for your post about “I felt like i,was dying”. This was such a Blessing from God bc after being to several docs and even some N.D., when I told them I felt like I was dying when this comes something sucking life out of me like a tidal wave including all the other things you described, they say “O no you must have something else bc that’s not how hashimotos is. Inside I know they’ve never had it and it’s bc of their book info. Anyway they have just kept wanting to drop my dose to get their perfect TSH. They throw me off the cliff I dive again and so now praying for the right person again to see. But I’ve been working on the diet and I will get there too. Thanks for the validation of your testimony…”I felt like I was dying”. God is Good!
Thank you for posting! I recommend reading The Autoimmune Solution by Dr. Amy Myers. She practices functional medicine. I have Hashimoto’s too and struggled for years with conventional medicine only treating my symptoms or doing nothing at all because my thyroid levels were “normal” but I was gaining weight and had a laundry list of symptoms. It’s all about mindset so when you think about what you can eat/drink and how good they make you feel, the healing process is so much easier!
Thanks so much for this great article. I had recently been diagnosed with hyperthyroidism and over the past 8 weeks have seen my thyroid levels normalise being on the AIP diet. Prior to this I had IBS problems and felt like I was always catching a cold or flu, always felt unwell. My doctor recently said they had no answers for me in regards to why/how I have improved, and prior to that the only recommended option was radioactive iodine therapy. I can’t recommend to people enough that they try the Auto immune protocol. It has changed my life and I’m so thankful to bloggers like Kelly who share their stories of success and give some hope where modern medicine has failed.
Thank you so much, Micheil. I’m so happy to hear that you are doing so well on AIP. I only wish I had known about it years ago and wish that doctors would recommend it to all of their patients, so they don’t need to suffer needlessly for so many years.
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I remember reading this entry when you first posted it. I hope you’re feeling better. I recently sought this entry out because my sister was diagnosed with a low-grade form of Hashimoto’s. She’s been trying to get pregnant, and while she is able to GET pregnant, she hasn’t been able to STAY pregnant. Needless to say, it’s been a tough year. She has also gone gluten-free in order to prevent any more miscarriages and hopefully we’ll have a niece in February 2017! I’m sending her this post so she knows she’s not alone out there.
Anyhoo, thanks for sharing this and for providing resources and materials to further educate. So much of the time it feels like doctors are just guessing and that can be so frustrating. Life is for living, no?
Thank you so much for going “off brand” and sharing your experience! I was recently diagnosed with Hashimoto’s after having thyroid cancer a few years ago. I felt ok until moving from Phoenix to Ohio about two years ago and started to have muscle aches, began to gain weight and experienced depression. My doctor diagnosed me with Fibromyalgia but it seemed to conform more to the Hashi symptoms (tho neither doctor agrees with me). I’ve also had IBS symptoms for most of my life. So, knowing that it can present differently (you are slim and petite while I am 6’4 but obese) and all the resources you’ve offered – along with your terrible journey is SO helpful. Thank you so much for sharing! I’m starting day 1 of Paleo. I thought I’d ease in and do 30 of Paleo while I figure out what to make for breakfast, my favorite meal and then start my 30 of AIP. I wish you lots of health and success and am excited to see the changes in your new home.
Thank you for your wonderful post. It was great reading an honest and still cheerful post about Hashimoto’s, especially cause your story resembles mine so much.
I was diagnosed with Hashimoto’s a year after stopping the birth control pill. I stopped cause I was going bonkers with swollen limbs and serious diarrhea – and obviously I was underweight because of that. I strongly believe that I was hyperthyroid while taking the birth control pill.
Before put on synthetic hormones, I was treated with a meno-pause course over 3 months. I felt great while taking it and very bad after stopping. And this is where I am stuck, as I always felt better on these sexual hormone replacements than any thyroid hormones.
Long story short; The synthetic hormones were too strong for me, I am now taking Erfa, also a natural thyroid hormone (if I had a pig I would name it Erfa, I think the name fits perfectly). Doing better on it, but not perfect at all.
Recently I started seeing a Chinese Practicioner (I moved to Asia), including acupuncuture and chinese herbs (uurghh!) every day. She diagnosed me being “cold and damp”, and now I basically have to cut everthing cold and damp (no cold water neither!) I guess that fits the AIP diet quite well. I am seeing improvement only after 1 week, but chinese medicine takes time.
Still, the meno-pause pills are swirling in my head as the best treatment. I sometimes wonder if I actually have Hashimotos, or if its just caused by sexual hormones being out of range. Do you have any experience with that?
I will definetly buy the book you recommended.
wow. amazingly well researched and thoughtfully written!
I have had hashimotos for the last 7 years and is been a series of ups and downs. I’m now in the process of getting medically more under control with the help of an endo. Next step is to try this diet. It’s going to be tough, especially as I’m a vegetarian. However your post has inspired me to try!
thanks for sharing. X
I have hasimotos disease – and I desperately want to sort it out – and I am going to use my diet etc to do it – I will keep you posted- I take L-thyroxine -150mcg but it has done nothing !! Go figure !
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April 4 is my birthday, and I’m ordering “Hashimoto’s Thyroiditis: Lifesyle Interventions for Finding and Treating the ROOT CAUSE” by Thyroid Pharmacist, Dr. Izabella Wentz, who is a wonderful person, as my own birthday present. Thank you so much, Kelly, for sharing your personal experience and cheers to the modern-day audrey hepburns of the world, celebrating the art of living a colorful life. In heartfelt gratitude Xx
Oh my goodness, I could have written so much of this — except the trips to the doctor. After suffering and figuring it was “normal” for 20 years, I finally got an ulcer and went to an amazing DO who ran bloodwork and stool samples and diagnosed me IMMEDIATELY, and she told me to quit gluten, soy, and dairy forever (cue tears). I found AIP on my own, and all of that took place 6 months ago. My most recent labs show all of my thyroid panels improving, and I finally understand how the rest of the world must feel in regards to energy and enthusiasm for life.
Thank you for sharing your story. I know this post is a couple of years old, but I appreciate and identify with your journey.
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I’m sorry someone else has gone through this but so glad I’m not crazy and not alone. I was diagnosed four years ago and have been on levoxyl since then. But I keep getting the “flu”. Finally with a temp over 105 for several days and 101 now for over a week they ran tests and found the Hashimoto’s had reached a new level and has begun to attack other organs. Stopping the levoxyl and trying Armour. Going to a healthy life center for a health scan and to reboot and to teach me to calm down eat right and take care of myself. Praying this works!
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Dear Kelly – could you give me an update on how you are doing now? Thanks! Lynnda
Yes Im interested too
How much of this is applicable if you just have regular hypothyroid ( no auto-immune disease)?
Dear Kelly, I just discovered your helpful blog. I trust you are well these days. My story is diagnosis of Graves/hyperthyroid almost three yrs ago, after losing 30lbs within 3 wks, doing nothing different, often 9lbs overnight. While I am now 62 and have put off having my thyroid removed (and the radiation), I am taking methimazole that has slowed me to a snail’s pace and put on 40 lbs. I guess my question to you would be is this advice also helpful for Graves? Thank you and God Bless you.
I realize this was written some time ago, but its SO WONDERFUL you got it all in there. I resonate with all you wrote and know how time consuming it is to create a true picture of this ailment. I am about to try Amour and already on the diets and my previously life saving protocols. I’m fearful of the meds, but I’m in a danger zone now.
Thank you for taking the time for yourself and for the rest of us.
Audrey (named after Ms. Hepburn by my actor parents) : )
I want the chicken soup recipe please
I have hashimoto’s but I use Yerba Prima’s Whole Psyllium husks & mix it with 1 envelope of Knox unflavored gelatin and that fixed my leaky gut. It also improved my hair, skin & nails.
Exactly… I go back and forth with all you’re been through. I am on Armour thyroid now. I was AIP and later relaxed into Paleo. It truly helped. I have been to many endocrinologists and no you ne will listen.
I can’t do B vitamins either, due to MTHFR.. The bad part, is I had to run this on my own, very little direction has been given to me through any doctor. And the battle has taken its toll on my body.
I am having stomach problems now, hip pain, my knees go out, I cant lose weight, brain fog comes and goes… You know the score… But I have had to change my diet some due to my husband’s cancer. So, I know you’re right. The further I get away from paleo, the worse it gets. I can’t hardly digest any cheese, or wheat products without experiencing great pain and discomfort…
So thanks for putting this article out! This needs to be heard, because what I’m finding that most doctors have no idea!
Thank you Kelly.I was just diagnosed with Hyperparathyoidism.Scared the Bejesus out of me.It can cause osteoporosis. And kidney problems.
Thats terrible for me that i take thyroid medication, use AIP diet, i tried everything and nothing works. AIP diet only make my symptoms less painfull. Ah and have no strength to do anything.
Hello! Thank you for sharing! I feel horrible everyday! I was wondering, did you end up quitting your Armour completely? I too have had issues!
Thank you for sharing your story and in such an interesting way. Mine is longer, weirder and less certain in some ways. But, yes, I have Hashimoto’s
I’d like to tell you – or, maybe not specifically you, since you found a good way to eat for yourself – that I ran into some information about people with Hashimoto’s who adopted Dr. McDougall’s high starch plan (usually minus wheat and citrus) who thrived on it.
One of the thing I keep reading over and over is that, like with Crohn’s and the low FODMAP diet, there can be wide variations in what one may or may not be able to eat to self-treat thyroid problems.
Oh thank you so much for thus. Struggled over 4 years with symptoms and diagnosed 2 years ago. I’m so ill and something new each day! It’s relentless. I was recommended a functional medicine doctor and wondered how you got on with yours?
I’m Wendy 57 year old UK Nurse.
Hope to hear from you soon.
I’m so sorry you are struggling.I have been there and am happy to say that it does indeed get MUCH better. I just sent you a note on what helped me to heal the most, but you can also find that info here:
If you have any questions, please feel free to send them my way.
Here’s to healing,