Me, Myself and Hashimoto's Disease: My Journey from Diagnosis to Remission
This coming Monday, May 25th, is World Thyroid Day and I have been racking my brain thinking about how best to spread awareness about thyroid disease. In the past, I have focused on the biological processes of the thyroid and how thyroid disease manifests in our bodies. I have looked at it from more of a scientific angle, researching the many physiological facets of hypothyroidism and autoimmune thyroiditis (Hashimoto’s Disease). What I haven’t done is share with you my story, from diagnosis to remission. Though I have given some detail in a few separate blogs, whether it be about my mental health struggles, my poor experience with conventional doctors, my switch to naturopathic medicine or my medication changes, I have never actually written out my story from start to finish. So, in honour of this day, and in an attempt to spread awareness, I am going to be open and honest about my experience with this illness, from diagnosis to remission.
For those of you who have followed my social media and blog for some time now, you’ll know that this past November, I found out my Hashimoto’s disease was in remission. I wrote a detailed, 3 part blog highlighting the key steps that I took to achieve remission, and how you can do it too. If you didn’t read those and would like to, you can find them here - Part 1, Part 2, and Part 3.
Though I think those posts are immensely helpful and wish that I had that information when I was first diagnosed, achieving remission was so much more than simply following steps to recover from the myriad of symptoms that comes along with your thyroid diagnosis. It was more than finding a good doctor, healing my gut, detoxing my liver, taking supplements and medication changes. It was more than diet changes and spending my Friday nights researching a disease that only a few shorts years ago, I had never heard of. Achieving remission started the moment my body rejected its own tissue, which was likely years before my diagnosis.
So, if you’re interested, here is my story about me, myself and Hashimoto’s disease.
They say that most people with Hashimoto’s disease have had the illness for up to a decade before their diagnosis. By the time you have developed Hypothyroidism and are symptomatic, your immune system would have been targeting the thyroid gland for quite a while. Your thyroid doesn’t just give up on you that easy. I was diagnosed at 14, but had symptoms for as long as I could remember leading up to it. I had struggled with my weight my whole childhood, even though I was eating the same as my family and all my friends, in fact, my parents were fairly strict with the foods that we ate and it was rare that you would see me eating fast foods. I was lucky, and was diagnosed sort of by accident. I was at my annual physical, dreading stepping on the scale, before my MD told me I was overweight (as if I wasn’t painfully aware), and that I needed to stop eating fast food. I practically had to beg her for an ultrasound as my stomach pains had become so severe and I knew gallstones had run in my family. She decided I should also do blood work to rule out any other triggers accounting for my stomach pains. That’s when my TSH came back sky high and I was immediately sent to see an endocrinologist for further testing.
Here was the information I was given:
"You have a condition called Hashimoto’s Thyroiditis and an under-active thyroid. All you have to do is take a pill for the rest of your life and you will be fine. This is probably the reason you are overweight. Oh, and when you get pregnant come back, we will have to adjust your dose."
At 14, all I could think of during this appointment was, “wait, is this pill going to make me lose weight because GIVE IT TO ME”. What else would a girl about to go to high school really care about? Well that’s pretty much what it did. I have to give myself some credit, I went on a gluten-free diet, not because anyone told me to but because I was hyper aware of all the dieting information that swears by going “low-carb”. In 8 months I lost nearly 100 pounds, had long, thick hair, was full of energy and finally living the life I deserved to be living. Shortly after, one of my closest childhood friends passed away tragically, five days before christmas. Through the process of grieving her death, I was diagnosed with a generalized anxiety disorder (though now it is very clear to me that it was an expression of grief and not a disorder) and that was the start of my declining health.
I’ll spare you the details of the year following my friends death, mostly because I don’t remember a whole lot about it. My mind had really blocked out a large chunk of that time. After years of dealing with anxiety and grief, I had gotten really sick. I was in my second year of university, and suddenly going to class became a task I couldn’t bring myself to do. I was top of my class, and then suddenly I couldn’t keep up. If I did make it to class, I was plagued by severe fatigue to the point where I was drifting off in lecture. I vividly remember forcing my watering eyes to stay open on the bus home from school because I would miss my stop if I didn't. This was not normal exhaustion, it was like gravity had become too heavy for me, like there were weights on my heels and shoulders, begging me to lay down. I couldn’t get through regular life tasks like working, school and social outings with friends. One night out with friends meant weeks of paying for it.
The brain fog...
If that wasn’t enough, my brain started to become “foggy”. I recall sitting at my computer working on an assignment and getting a call from my boss asking where I was. I had never missed a shift in my life. I promised her it would never happen again, but it did, again, and again and again. I knew something was wrong, but I didn’t want to admit it, so I lied about why I was late for shifts or why I couldn’t make it at all. I had completed assignments and never handed them in because I just “forgot” about them. I ran through 2 red lights (that I can recall), and almost went through another while my friend was in the passenger seat. I remember going home that night and balling my eyes out because not only was I putting my life in danger and whoever else was on the road (or god forbid walking) but now I was putting my friends life at risk too. I was forgetting basic things, like how yogurt goes in the fridge not the cupboard, how to get to a friends house that I routinely visited, I lost coordination and would drop cups and plates, would walk into doors, trip over my own feet and had unknown bruises all the time. I couldn’t explain this to people because it was always chalked up to being “stress” or “distraction” or just being “clumsy”. But I knew I wasn’t “clumsy”. I knew something was wrong. It got to the point where I was scared of getting behind the wheel, wasn’t sure if I could manage school any longer, and was worried about my own safety and the safety of those around me.
In late 2017, I fell into a deep depression. The only thing that made me feel better was finding my routine in a gym, so that’s how I began to fill my days. Day after day in the gym, lifting weights that were too heavy for me, doing too many reps and ignoring my body’s silent scream for help. If I felt ‘burnt out’ after a workout I would often mask it by doing another workout, drinking protein shakes (not healthy ones) and waiting desperately for the day to be over so I could go to bed. I started to kinda enjoy this routine. It gave me an excuse to leave the house without going too far, I could listen to music and didn’t have to worry about talking to people. I could, for an hour or two, escape the life I was living, because as soon as I parked my car back in the driveway of my home, I knew my body would begin to retaliate.
The weight gain...
After a few short months (that felt incredibly long) I stepped on the scale and was 17 pounds heavier than my most consistent weight. 17 pounds. How was I working out everyday, eating a gluten-free diet and gaining that kind of weight in under 2 months? I had been overweight before and I was not willing to go back there. It didn’t matter though, my body did not appear to be on my side. So here I was, 19 years old, gained 17 pounds, struggled to get out of bed every day, depressed, anxious, losing my hair, brain fog, suffering from cold and night sweats, and more.
I had started with google searches,
“why am I cold all the time?”
“why do I feel like I have the flu every day?”
“why don’t I have energy anymore”
“can you gain 17 pounds of muscle in 2 months?”
“why am I gaining weight and tired all the time?”
BOOM, thyroid, thyroid, thyroid.
But how? I was taking a pill every day for that. I was told that as long as I take that pill I would be fine, and I am most certainly not fine. So, one of my last strength training sessions I decided I would listen to a podcast about thyroid health. That is when I came across Elle Russ. The podcast had mentioned how excessive exercise increases cortisol which can cause you to gain weight. High cortisol levels and under-active thyroids go hand-in-hand. It all started to make sense. I became obsessed and would listen to her podcasts every day, I ordered her book, “The Paleo Thyroid Solution” and my eyes began to open. I was convinced my medication was not working and that is why I got sick.
The doctor's visit...
I knew it was time to see a doctor. My naive self assumed this would be an easy task. I mean, I basically did the job for them. I knew what was wrong and all I needed was for a doctor to agree and tell me my next steps. Man was I wrong. As I sat in my former doctors office (emphasis on ‘former’), telling him my symptoms while he only half listened, I began to realize that this appointment wasn’t going to end how I had originally thought. After listing my symptoms and telling him that I think it is my thyroid causing this distress, my doctor responded with this:
“Your TSH looks fine, it sounds to me like it’s ‘just’ depression.”
I was appalled. ‘Just’ depression? He ignored obvious symptoms and shut me up by printing a “depression questionnaire” off of google and then began writing on his computer a prescription for an antidepressant. So I cried. Actually, I cried hysterically, embarrassing, uncontrollable tears that I had yet to let out on my own. I realize now that this wasn't my finest timing. That ought to show him I wasn't depressed...
So as he stared at me with a disgusted look in his eyes, he said to me:
“You’ve struggled with mental illness before, it seems to be getting worse. This is all in your head. I will write you a prescription for an antidepressant and you will be fine.”
First of all, I had learned that “take this pill and you will be fine” is one of the biggest lies our doctors tell us, but I also realized that this doctor was using my friend's death and my experience with grief, to make me feel crazy. As if everything I was feeling on such a deep, physical level was all in my head. As if having depression wasn't enough to warrant the attention of the doctor who was supposed to be caring for my health.
The truth is, I was depressed.
Depressed because my life was deteriorating at such a young age. Depressed because I wasn’t in control of how my body felt and acted. Depressed because I thought I would never have my old life back. Depressed because I was not passionate about anything anymore. Depressed because I feared my friendships would slip away. Depressed because no one listened to me when I tried to express how I was feeling. Depressed because I couldn’t fathom the pain of living like that much longer. It was like a never ending nightmare. I just wanted to wake up and realize that it had all been a bad dream.
I sat in my car outside the clinic and cried. I must have cried for an hour straight. My glands hurt from hyperventilating, my eyes burned from tears and my skin was hot with anger. I wanted so badly at that moment to just give up.
My body had other plans...
No matter how exhausted you are, no matter how much you feel like giving up, no matter how many times you are knocked down, your body will fight back. It is an innate impulse that we are all born with. You can’t just give up, your body won’t let you. It didn’t matter that I had decided I was giving up, because my body felt otherwise and if i’ve learned anything from this experience, it's that my body will make its own decisions. And so I fought. I fought really freaking hard. I am still fighting. Sometimes, it takes hitting rock bottom to realize there’s nowhere else to go but up.
That's when the healing began...
I never filled the antidepressant prescription. In January of 2018 I saw a naturopathic physician who specializes in autoimmune disease and women’s health. She listened to me. She believed me. She knew that I wasn’t crazy. I made some serious dietary changes, healed my gut, stopped the excessive workouts and switched to walking, yoga and light exercise. I started a rigorous supplement regimen, and changed my prescription thyroid medication. There were good days and there were awful days. Putting my Hashimoto’s into remission took hard work, determination like you wouldn’t believe, and a lot of saying no. It took giving up my old life and allowing my illness to tell me what I needed to do to find this new version of me. That’s why when people say, “you aren’t your illness” I kinda laugh. I spend every waking hour thinking about disease, our health care system, nutrition, physicians, medicines, research, supplements, etc. I only read health-related books, and listen to podcasts about disease. I analyze every single food I eat, and every single product I put on my skin. I spend most of my money on maintaining optimal health. I run a blog and social media page dedicated to my illness. I changed my life plans from working in a big PR firm to desperately and passionately wanting to change health policy. I went from a future in an office cubicle to throwing away my degree and going into sciences. I dream about working in medicine. I think about it every single day. I think about it more than the normal things a girl my age is thinking about. My illness IS my life. It has taught me lessons that I would have never learned anywhere else. It gave me purpose and a passion. It has given me the motivation to help others, and the aspiration to change the current landscape of healthcare. I see it every day on my blog when I read your stories, so similar to mine, and though it makes me angry, it also fuels me.
Here's my advice to you...
Your disease doesn’t have to fuel you. It doesn’t have to run your life, but let it teach you a lesson. Let your body receive the message from your illness that something needs to change. Let it force you to un-become all of the things that made you sick in the first place. Let it unravel all of the suppressed feelings you’ve kept inside all these years. There’s a message in there somewhere waiting to be understood.
Remission is more than just a step-by-step, how-to guide. It is more than fixing my gut, healing my adrenals, and balancing my thyroid levels. It is more than weight loss. It is more than a life of energy and happiness and passion. It is a reminder, that no matter how bad your life may seem right now, no matter what circumstances you are dealing with, and no matter what path you chose to take in life, your body will fight for you. That body that you can’t stand to look at right now, that body that seems to betray you every single day, it is going to fight, no matter how tired you are and no matter how close you are to giving up. I mean, if you didn’t want to fight, why else would you be reading my blogs? (aside from my mom, she has to read my blogs).
So, if you’ve made it here, know that your body will fight for you too. It already is in so many ways. Like the concept of the butterfly effect suggests, everything that has happened in your life has led you here.
Diagnosed with Hashimoto’s Disease and Hypothyroidism, Victoria explores the reality of living with chronic illness through her blog, The Butterfly Effect.
Victoria seeks to spread awareness of autoimmunity and writes to inspire chronically ill patients to live wholesome lives beyond their health struggles.