I recently received a private message on Instagram asking about what symptoms I had when I was diagnosed with my autoimmune disease, Hashimoto’s Thyroiditis. I realized that I spend a lot of time talking about life post-remission, but don’t talk about life before. There is a reason I do this and it’s because it frickin’ hurts. But, if sharing my “before” can help someone find the hope to reach their after then it’s totally worth it! So here are some of the symptoms that lead to my diagnosis of Hashimoto’s Thyroiditis.
THE SLEEP. The number one symptom I was experiencing before my Hashimoto’s diagnosis was sleep. My head would hit the pillow at night and I’d fall asleep instantly. The problem was that from the time my head hit the pillow until the time my alarm clock went off I was dreaming. I have jumped from planes and landed in a field of bumblebees, I’ve fought to save my loved ones numerous times, I’ve run marathons, grocery shopped and even fled the country. These dreams were so real that I’d often have to confirm with my husband what was real and what happened in my sleep. I did not have one single night of peace for years. Sleep deprivation is a form of torture and if you’ve ever been sleep deprived you know what I’m talking about. It wasn’t days, weeks or months of this … it was YEARS of restless nights. I was tired. Not the kind of tired that prompts you to take a nap. The kind of tired that makes the thought of moving your body from horizontal to vertical excruciating. Every flight of stairs I climbed left my head spinning. I’d have to lay down after bringing groceries in from the car. At times, the intense dizziness I felt upon standing would bring me to my knees. Sometimes a co-worker would find out I hadn’t slept in two years. They’d ask how I was still functioning and I’d laugh it off. On the inside I was screaming “I’M NOT! I’m not functioning at all and every single day I’m afraid someone is going to find that out.” I had to turn down office happy hours, dinner plans and more because I just couldn’t find the energy to participate.
THE PAIN. Despite being in my early 20’s I constantly felt pain in my body. The inflammation from this disease left me with pain in my bones, my joints and even my skin. I wasn’t “sick” yet constantly felt like my body had the flu.
THE BRAIN FOG. The lack of sleep didn’t help this one! I didn’t know what was happening, but I constantly felt stupid. I would leave work meetings and not remember what the meeting was about. I would be trying so hard to focus yet I wouldn’t be able to follow brainstorming sessions. I would have to write down every task I was given otherwise I would forget it immediately. I couldn’t remember conversations from earlier that day and remembering names of new people I’d meet was out of the question. I’d forget how I got on the highway and wouldn’t remember what exit to look for.
THE CRYING. I had never been an overly emotional person, but the lack of sleep and the pain and the doctors telling me I was crazy changed that. I would wake up in the morning and cry because I didn’t know how I’d find the energy to make it through the day. I’d cry at night because I knew I’d have to wake up the next day and do it all over. I’d cry on my way home from work, I’d cry in the doctor’s office when they told me my blood work was “normal” and I’d cry at the thought of having to live the rest of my life feeling that way. I’ll never forget the day I came home from work, collapsed in my husbands arms and cried for the next three hours straight. I felt so completely and entirely hopeless in my search to find just ONE doctor who could give me some answers.
THE PANIC ATTACKS. I can see why doctors would mistake my Hashimoto’s for anxiety or depression because it wouldn’t be uncommon for me to have multiple panic attacks per week. I’ve probably had at least 8 panic attacks in Trader Joe’s parking lots over the years. My face would go numb, my hands would go numb, I’d get dizzy and my vision would blur until I could stop the hyperventilating and calm myself down.
While all of this was happening I didn’t have a diagnosis yet. My doctors were telling me it was all in my head and I didn’t want to feel like a burden so I just blamed everything on being tired. I’m taking my time climbing the stairs because I’m tired, not because my joints ache like I have the flu. I’m asking you to repeat the question because I didn’t sleep well last night, not because my brain fog has me in a different dimension. I’m crying because I’m really tired, not because I’m scared the rest of my life will look like this.
What happened when I finally received my diagnosis is an entirely different story, but I write this to tell you that I wasn’t crazy and you’re not either. My doctors said it was in my head because they didn’t know what it was. I knew something was off and I knew it was something more. There were breaks in my search for answers because sometimes I just couldn’t bring myself to go see another doctor, but my search didn’t stop until I got my diagnosis and achieved remission.
If you know someone who is suffering with an autoimmune disease or invisible illness, then be patient. Know that the pain you’re seeing them go through is only the tip of the iceberg when it comes to the pain they’re feeling. Be patient when they ask you the same question for the 18th time. Be patient when they’ve been crying for the past 3 hours and don’t have a reason why. Be understanding when they don’t have the energy to go out or stay up late. Be calm when they come to you to tell you about their storm.
If you’re suffering with an autoimmune disease, know that things WILL get better. You are not alone in your struggle and you will come out of this a stronger human being. DO NOT GIVE UP. If you need advice, someone to commiserate with you or just a friend to chat with, I’M HERE for you.
Disclaimer: This post is not meant to treat, diagnose or replace the advice of a medical professional. If you have Hashimoto’s Thyroiditis you might experience different symptoms. Only the appropriate blood panel and sonogram can determine if you have Hashimoto’s.