A Whole Lot is New, and I am Not OK (Guest Post)

My favorite guest poster: My beautiful wife, Devorah. I’ll let her words speak for themselves.

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These days, when I bump into friends and they ask “How are you? What’s new?” I have to rack my brain for an answer that adheres to social niceties. Usually I’ll say “I’m ok, not much new. Just life.” But I’m actually lying. A white lie, if you will. However, I doubt John Doe wants to hear about all the new medical stuff I’ve been dealing with and how complicated it’s all been. It’s just small talk, after all. You, on the other hand, I suspect are a bit more curious… 

Six months ago I let myself succumb to my afternoon grogginess. It was a turning point for me. I once again felt the awful tiredness that sets in after lunch, and thought, “Well, maybe if my body is this tired, it needs the rest.” And I stopped fighting it. This was a tiredness I had fought many many times. Possibly years.

Like many in this day and age, I Googled what I can do about it. I tried to see if there were any underlying causes for it. Nothing clear-cut came up. Lack of iron always seemed to be a suspect for women. I amped up the iron, especially after my cycle. I also adopted the internet’s suggestions of eating fewer carbs and more protein for lunch and staying away from anything sugary. Sadly, nothing helped. 

Everything is Normal

More recently, I’d been regularly asking my doctor to check my blood work. Every time it was the same script: I’m tired, maybe we can check my vitamins? My iron levels? Anything else you can think of? Nothing came up. Ever. Everything was within the normal range.

I got a referral to a dietitian. The dietician admitted she’s been seeing a lot of patients who were tired. It’s winter, there’s a pandemic, you’re moving less. “All that can make you tired”, she said. “Makes sense”, I said. 

But that day I went back to bed and took a nap, and something changed in me. I slept for hours. I did it again the next day. And the next. Something was wrong. I knew it. I just didn’t know what. All the blood tests were absolutely fine. 

Around this time I started reading a book. It discussed some medical issues that often go undetected. Low Vitamin D, Celiac, and Hypothyroid. I had just gotten tested for Celiac (again), and it came back negative. The last time my Vitamin D was checked I was told that “my levels are beautiful”. So that left one area to check. I Googled “Hypothyroid”. Never in my life had I resonated with just about every single symptom on a list:

Fatigue 

Weight Gain

Dry Hair 

Brain Fog

Gut Issues

Anxiety 

To name just a few. 

I hadn’t been tested yet, but I knew: I was hypothyroid. 

Whatever that means.

Am I Really Hypothyroid?

The book suggested testing T3 and T4, not just TSH. This meant nothing to me, but I knew I hadn’t been tested for those. So I went back to the doctor and asked to get my T3 and T4 tested.

She told me that my thyroid is totally fine and it is only a myth that other levels will be off if TSH is fine. She told me that tiredness is usually psychological. She told me that 90% of the time they see nothing in blood tests that allude to why a person is tired. And she told me that my insurance will not test for T3 and T4, since my TSH is within range. 

“I can’t stay awake. I need a nap every single day!” I pleaded. 

“You know what? Why don’t we test your TSH again?” she replied. 

I felt like she was doing me a favor. 

The day I got my blood results back still seems blurry. 

My TSH was not within range. 

It was so out of range it made me wonder how it was within range just a few months prior. My doctor called me quickly so we can retest and make sure the test came back correct. She said it looks like hypothyroid and to see an Endocrinologist, pleased with herself for finding the cause of my fatigue.

I rushed to see an Endocrinologist. I actually pushed and shoved until I got an appointment, calling anyone I could, begging for the one opening that was reserved for already existing patients. The Endo wasn’t too happy about that part and spent half our time trying to figure out how I got the appointment. During the other half, she gave me a prescription and said to wait on it till my new blood test comes back to take the meds. “After all, we don’t want to put you on meds for the rest of your life before we are sure.” Umm, what? Sure of what? What do you mean the rest of my life? I had no idea what was going on. 

And the Meds Begin

My new blood test came back. My numbers suddenly jacked up even more. The doctor called me to instruct me on my lifelong meds.

The very next day I drove my husband to the hospital for surgery. When it rains it pours.

While we were at the hospital I picked up my first dose of meds. I read the leaflet. I always do… I’m one of those. I read: “Do not use the medication if there is known sensitivity to any of the ingredients”. I scanned down to the ingredients: Lactose. An ingredient I had cut out of my diet years ago because it sent me rushing to the bathroom. Great. But I took it anyway.

 A few hours later I rushed to the bathroom. And this became my new everyday reality.

I went to a different Endo, with all the questions that my brain had been racking up. 

Yes, this is for life. Yes, you have Hashimoto’s as well. Yes, the lactose could be the cause of the diarrhea. No, there’s no explanation why you became hypothyroid out of the blue. No, there’s nothing you can do besides take meds. No, nutrition doesn’t help. 

While I didn’t really expect different answers, I was still hoping for them. 

She switched my meds to ones without lactose and told me that it’ll still take a few weeks until the medicine lowers my numbers within range. (Spoiler alert: It took days)  

So Much Information!

Hashimoto’s, I learned, was the reason my Thyroid went out of whack. It’s an autoimmune disease that will eventually hit and destroy your thyroid.

As obscure as it may sound, it’s actually considered fairly common. I even found out recently that Joe Rogan has it (watch here).

The only problem is the vast majority will go untested for years. Mostly because the medical world has no treatment for Hashimoto’s. Once it hits the thyroid and shows up on your TSH, then they could prescribe hormones. The caveat is that meds may or may not help with symptoms. You have to get the right meds and the exact amount. Any swaying from accuracy can cause you to feel like hell.

Heck, from what I was seeing online, you can even have it all correct and still feel like hell.

So I did what I always do. Despite what the Endo said, I turned to diet. I am a complete believer in diet changing health. No one will ever be able to convince me otherwise. It may not be the only component of great health, but it’s a big one. For all those shaking their heads right now–another spoiler–I didn’t go and throw my meds out. I was still faithfully taking them first thing in the morning. But despite taking them, and despite changing them, I still felt awful. In fact, shortly after switching meds, I felt worse. 

Basically, at this point I was battling old symptoms, new symptoms, and my insurance for better meds. I suffered through all the symptoms on the list. Even the ones I read about in other people’s stories, when I felt relief of that not being my life. But now it was my life. My hair was falling out, my muscles hurt, my joints hurt, I couldn’t recall information or finish sentences without getting all jumbled up. And I was still having bathroom issues.

So… What’s New?

I quickly got my hands on books, interviews, podcasts–anything that would shed more light onto this life sentence. I ordered a book off of Book Depository and I started following the program, slowly transitioning into the Autoimmune Protocol (AIP).

I’ve done a lot of complex food transitions in my life. I started having gut issues at age 14 and was diagnosed with IBS in my early twenties. I’ve tried many things to assist with that over the years. I cut out gluten, dairy, and sugar. I tried Veganism (way before it was cool), Food Combining, The Whole30, and Fodmaps, to name a few. AIP is harder. But here’s the crazy thing: One-by-one, my symptoms were disappearing. 

AIP is an elimination diet. Which means, you cut out foods and slowly reintroduce them to pinpoint what your body is reacting to. It’s a slow and lengthy process. It makes socializing extremely difficult and going out to eat impossible. It requires hours of prep in the kitchen to have compliant foods on hand, let alone feeding your family. It also makes you rethink food. How am I fueling my body? What benefits am I getting from what I’m ingesting? 

So that’s what’s new, my friends. It’s been six months now. I’m on a journey. I am by no means done. I suspect my meds aren’t quite right yet. I’ll know more at my next blood test. There are still days I need naps. There are still ways I’d like to improve. I want to lower my antibodies, but will probably have to find a private place to get my levels checked or be ready for another insurance battle. Ideally I’d love to go into remission. People do it. It’s hard work. But one thing I know for sure: If there is anything worth fighting for in this world, it’s your health.