A-Two-Year-Journey-With-Undiagnosed-Autoimmune-Thyroiditis
Anna De Carlo, Thyroid Thriver
Thyroid Nation

41 years young
New Jersey
Celiac Disease, Raynaud’s Disease, Graves’ Disease, Hashimoto’s and thyroiditis

My Journey With Thyroid Autoimmune Diseases

I must have retyped this about 100 times in the last few days. To be honest, I am not sure where I should start with this crazy, upside-down journey of mine. I’ll just let my fingers do the talking. Two years ago, my life changed in what seemed like in an instant. My health did a complete 180. I was a healthy, energetic, spunky, outgoing 40 year-old. Suddenly, I was experiencing high heart rates that would start up out of nowhere. I would wind up in the Emergency Room with a heart rate of between 125 bpm and 215 bpm. I should have a VIP pass for the ER, since I was constantly in and out of there with tachycardia, anxiety, getting EKGs and a bag of saline. The Emergency Room was a like a second home with a revolving door to me. Eventually, I was referred to a cardiologist, who diagnosed me with SVT (Supraventricular Tachycardia) and placed me on a beta blocker.

In And Out Of The ER

Over the next few months, I was still visiting the ER often with tachycardia and anxiety, and my beta blocker was switched many times to different brands and dosages. I was also starting to notice my hair falling out enough that it was clogging up the bathtub drain. I would run my fingers though my hair and get a handful of it each and every time. Additionally, I had hand tremors, muscles aches and cramps, constant fatigue and frequent, terrible brain fog. I was really starting to get scared of what was going on, so I called my general practitioner. He ran many blood tests for different health problems (including thyroid). However, he told me my blood work looked fine. My problems did not go away. I was also starting to notice that my fingers would turn blue when I was washing dishes or folding laundry. Sometimes I would even get a tingling and numb sensation when typing on the computer or my cellphone. I was still in and out of the ER with the tachycardia and anxiety and still dealing with all the symptoms. My GP kept running labs and they kept coming back normal. He suggested that I go on Alprazolam. I refused, profusely. I kept saying, “I am not crazy. I know something is not right with me.”

“There Is Nothing Wrong With You.”

I was getting tired of the fact that my doctor never paid any attention to my symptoms or how I felt, and only went by lab results. So I started to study and research for hours and hours on end on the symptoms that I was experiencing. I kept coming back to thyroid disease. My GP had only been testing TSH, so I asked him to run a full thyroid panel. I handed him a list on what to test, and he refused. He kept saying, “There is nothing wrong with you.” So I decided to join a few groups for support, and to get information on how to get tested. I was bullied by some group members because I did not have a diagnosis yet. However, I also made some really close friends. I ended up switching GPs, because the one I had was ignoring my symptoms, wouldn’t run a full thyroid panel, and wouldn’t refer me to an endocrinologist. This turned out to be a blessing in disguise. My new GP mentioned that all my symptoms seemed to be an autoimmune disease and thyroid related. After extensive testing, I was diagnosed with Celiac Disease and Raynaud’s Disease, and was told to go on a strict gluten-free diet. Ray who? And a lifestyle change! Lucky me!!!

My Symptoms Remained, Despite Dietary Changes

It was back to learning and researching this new lifestyle, which my life depends on. I also found out that I was lactose intolerant, and that I have GERD and IBS, too. I had already removed gluten from my diet… I now had to remove dairy, too? “What else is going to go wrong with me?” I asked myself. Over the next several months, both gluten and dairy-free, I was unfortunately still suffering with symptoms, and they were starting to intensify. I was still experiencing rapid heartbeats that would result with me in the Emergency Room. Finally, an ER doctor ran a full set of labs, and it showed that I was hyperthyroid. So it was off to an endocrinologist. At last! If you feel deep down that something is not right with your body, then it isn’t. Click To Tweet When I saw the endocrinologist for the first time, I told her all my symptoms, and she checked my vitals and reflexes. She also had me stick my arms out in front of me (like a zombie) and placed a folded paper across my hands. She saw the paper dancing on top of my hands. She handed me a script for blood work (a full set of thyroid labs but not antibodies) and set up another appointment for two weeks later. I got the call that my labs came back normal and to keep my appointment. A few days later I wound up back in the ER with tachycardia and the ER doctor ran my thyroid labs again. My thyroid levels came back as hyper. It was back to calling the endocrinologist. She would send me off to get labs done again (no antibodies) and they would come back normal.

This back and forth between me in the ER having their labs, and also having my endocrinologist’s labs, was happening every two weeks. This was over a three-month period. So my endo sent me off to have RAIU (Radioactive iodine uptake scan) and it came back with me having severe Thyroiditis, with hyperthyroidism, and I was put on Methimazole 5mg. I was starting to really feel good on Methimazole, I felt like I was becoming myself again. But unfortunately, within 3 weeks of taking it, I wound up in the ER again, with huge welts all over me. I was told that I had an allergic reaction, and was taken off the Methimazole. So I had to make another appointment with my endocrinologist. She finally ran a set of labs that included antibodies. I tested positive for Graves’ Disease and Hashimoto’s, with severe Thyroiditis. I become both hyper and hypo (my thyroid levels flip-flop like a fish out of water within a two-week span).

Become Your Own Advocate

I suffered for two long years before my diagnosis. I made enemies, was bullied, intimidated, called names. But I also made some friends, and some close friends ones, too, throughout this journey. I want to thank the ones who stuck by my side throughout this, and I will never forget. My advice to anyone out there looking for answers and support is do not give up, listen to your body and demand what you believe in. Don’t ever (EVER!) let a group member or doctors bully you. You pay for the doctors to work for you, and support group members are meant to support, not bully. If you feel deep down that something is not right with your body, then it isn’t. Speak up and do something about it. Become your own advocate. My experiences led me to start my own support groups for Graves’, Hashimoto’s, and Celiac Disease. My groups are filled with lovely, warm and clever people who want help each other. My journey, like all thyroid warriors, is long, but I have learned so much and have come to a place where I feel lucky that I am able to help others who are new and are on that journey with me.

Also, please check out Anna’s Facebook Groups, FWTO Graves, FWTO Hashimotos and Celiac Disease Gluten Free.

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