September was Thyroid Cancer Awareness month, which is what inspired me to write this article. After all, what better month for me to tell my story and spread the word? I wanted to write this not to get sympathy, but for people to understand what an impact your thyroid has on your body. The easiest way to put it, as my doctor said, “Your body is the United States and your thyroid is the President”. I have an autoimmune disease called Hashimoto’s. I believe I have been misdiagnosed for at least 26 years of my life, which has ultimately resulted in my diagnosis with thyroid cancer. My thyroid was removed at the end of January 2013. I have been cancer-free for seven months.
I went in for my yearly physical on November 8 2012 and, like most of us, I will never forget that date. At the normal yearly physical this past year, my doctor was concentrating an awful lot on my neck. At that time little did I know what a thyroid was, what it does and where it was for that matter. I also didn’t know that all thyroid numbers are not checked in your blood work for a yearly physical. My doctor’s office only checks three out of six normally.
My doctor decided to do an extensive test (which my insurance company didn’t cover), we got the results back and, sure enough, my body is producing antibodies. They should be under 60 and my great number is 1,276. What’s an antibody, I thought? Just another thing I didn’t know. It’s a sign of your body self-destructing. So the process begins: extra blood work, ultrasound, specialist, biopsy (undetectable), second opinion specialist, surgeon and the end result being surgery on January 29 2013 – yet another unforgettable date.
Surgery went well and the surgeon wasn’t too concerned with it coming back as cancer. “It was a 20 percent chance,” he said. They did a biopsy after surgery, the surgeon was shocked and told me it was cancer. I was probably too drugged at the time to comprehend what had actually happened. My parathyroid glands weren’t working so my one-day hospital visit turned into a three-day visit. I was released three days later and able to go home to recover. I went through surgeon follow-ups, specialist appointments, blood work, Thyrogen shots and radioactive iodine – all before the end of April 2013.
I reached out to the first specialist I was referred to in April 2013. I should have known better as she was the specialist who wanted to wait and revisit the matter in six months, based on the undetectable biopsy before my surgery. I’m thankful I decided to get other specialist’s opinions and not listen to her advice. I kept telling them something is wrong. I found myself lying on the floor at night just asking God to take my life as I didn’t have it in me to fight anymore. I reached out to someone who is now very close to me. He helped me try and focus, to get the strength and to fight back. I’m thankful every day that he was there to pick me up when I was struggling.
I started doing my own research, researching doctors in my area who specialized in autoimmune disease and thyroid cancer. I ended up finding one and getting in to see her within a few weeks. The nurse checked my blood pressure a few times and said she would be right back. The doctor immediately came in and my blood pressure was at 188/122. I knew something wasn’t right, my body was screaming at me and I found a doctor who was concerned and willing to listen. I’m thankful for finding a new specialist who isn’t concerned with my numbers, but what my body is saying. Since I have an autoimmune disease my thyroid blood work numbers never tell the whole story.
I think surgery was the easiest part of my “President” being removed from my body. I am amazed to find myself searching for my old self. Not knowing who I am, I’m questioning myself about my life and who I want to be. The girl before my “President” was removed just doesn’t exist anymore. I still deal with this daily struggle. It’s a process of increasing medication every four to six weeks, as my numbers are still not right. I have learned to be patient throughout this process. Every day is a new day and I never know how I’m going to feel. I take one day at a time so I don’t get overwhelmed, frustrated, or break down for that matter. I can’t tell you the amount of joint pain, swelling, water weight, hair loss, anger, rage, frustration, weight gain, muscle cramps, brain fog and lack of concentration I deal with, usually on a daily basis. That list is what I can remember. There are a few other symptoms, but I will spare you the details.
Throughout the years, my disease has caused me to be diagnosed with an abnormal white blood cell count, to have extensive tests done, be treated for ovarian cysts, abnormal menstrual cycles, miscarriages, one stillborn, pre-cancerous cells on my cervix, one reaction with hives, anxiety attacks, depression, fatigue, yearly bronchitis, multiple cases of walking pneumonia, unknown number of UTIs , IBS and iron deficiency. It has caused me socially and mentally an unknown number of childhood memories lost (minimal memories before age 12), numerous missed days of high school, numerous failed friendships, numerous failed relationships, one failed marriage, one failed engagement, years of missed work, an unknown amount of lost income, an unknown number of social functions missed, withdrawing from numerous family functions, withdrawing from family in general, many hurtful words said and wrong decisions made.
Most, but not all, of these symptoms I have listed I believe stem from my misdiagnosed autoimmune disease of Hashimoto’s and low thyroid function. I do not have any children, not that my ex-husband and I didn’t try, but I think that my undetected autoimmune disease has led to infertility as well.
I struggle daily, but push forward, wanting nothing more than to reach out and raise awareness. I want to help people avoid going through years of misdiagnoses, frustration and struggles like I have. So please learn how to check your neck, ask your doctor to during your yearly visits and request a thorough thyroid workup, which should ideally also include Free T3, Free T4, Reverse T3 and thyroid antibodies.