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!)
Shop the new accessories collection I designed for Beth Ladd!read more
Here are the 16 Best Cyber Monday deals, sales and promo codes, including where to get The Samsung Frame TV for $500 off!read more
I'm obsessed with this TV that looks like art -- The Frame TV by Samsung! See why, plus where you can get it for $500 off!read more
Here’s what you need to re-create Rory Gilmore’s Chilton uniform for Halloween!read more
If you’d like to dress up as Holly Golightly for Halloween, I’ve got the scoop on where to get a Holly Golightly costume! It’s easy, really….read more