One of the biggest things I have had to accept in my life is the fact I live with an autoimmune disease. Mine happens to attack my thyroid and it is my underlying cause of being hypothyroid. I was diagnosed with hypothyroidism in 2012. At the time, everyone told me that once I was on the right dosage of medicine, I would feel back to normal and weight would fly off. Little did I know at the time, that was the furthest thing from the truth. For over two years, the nurse practitioner I was seeing at the time, was only testing my Thyroid Stimulating Hormone (TSH) and dosing based solely on that number. I kept feeling worse and worse, and at the time, had no idea why. Turns out, TSH is the last number to change when you have an autoimmune thyroid disease, so my thyroid has been under-functioning for a long time. This is an article that is simplified and shows how the disease progresses.
I have about 10 books related to Hypothyroidism and Hashimoto’s. Once I started researching more and really digging into all things thyroid, I learned that mainstream doctors almost always only check TSH, and maybe Free T4 and I realized that I needed to be my own advocate, because I knew something wasn’t right. I found a lab on my own, where I could request the tests that I wanted. I had a full thyroid panel done to include TSH, Free T4, Free T3, Reverse T3, and both thyroid antibody tests.
Those test showed that 1.) I had been under-medicated because of only testing TSH, and 2.) my TPO antibodies were high showing that I indeed had an autoimmune disease. That was in early 2015. I have a full thyroid panel completed every three months. And it isn’t surprising to me when my medicine needs adjusting, which typically happens 2-3 times a year. Once I did my outside panel, I found a functional medicine doctor that I now see.
So, what are my symptoms? Everyone with this disease sees it show up in different ways with varying severities. For me, the biggest is fatigue. It is a tiredness that sleep doesn’t cure. It is a tiredness that I can’t just ‘push through’, because it gets worse. It is a tiredness that has put in me in bed for days at a time. Another that I deal with is brain fog. Some days it is impossible to concentrate. It took me a really long time to actually study for, and pass, my licensing exams at work because I would go weeks where I didn’t recall anything I was supposed to be learning. I have muscle aches – most often in my arms and legs, and when they are too bad, I have to wrap something tight around them. Crazy mood swings? Angry for no reason? Sad and crying for no reason? That’s me! My hair falls out, sometimes in large amounts. It is really hard to lose weight. For some people, they cannot do higher intensity workouts, and must stick to things like yoga or walking. My chances of developing other autoimmune diseases is also increased. I was tested for Celiac in 2016, and I had some antibodies, but not enough at that time to be considered Celiac. Sleep problems are also common. Sometimes I sleep like a baby. Other times I suffer from insomnia. I’ve also suffered with feeling detached from my life, depressed, and anxious. I’ve skipped dog shows and other things I enjoy because I just didn’t feel like going.
These are just a few of the things I’ve encountered. There are more, but these are the most frequent. The most frustrating part is that most of these are invisible to the outside world, and it can be hard to be taken seriously, even to doctors. I’ve been offered depression medication from one doctor, and I’ve been called a hypochondriac. I try to keep my personal and sick days, other than a few hours for doctors appointments every few months because I typically have to use them for my bad symptom days.
So, if I disappear from social media for days at a time, without a trip or something going on, this is probably why. I do try to push through, but I’m still learning the limits of my personal experience with this disease. If I feel like my body needs a day or two of rest from workouts, I take them. The last thing I want is to be in the bed for days, or in pain, or depressed. Another thing that is crucial for me is stress management. Stress is a huge trigger, and it is something I have never been the best at controlling. I have a very type-A personality, so I typically take on too much, hate asking for help, and I’m horrible at sharing tasks, especially at work.
Here I am, still learning the best way to manage this thing. I try to be upbeat and as happy as I can be on the outside. Sometimes it is hard because it is the exact opposite than what I feel on the inside. Sometimes it it is what I feel (thanks mood swings). And sometimes I fail, and I huddle up in my house and binge watch Netflix and take a lot of naps.