Q: Please share your thyroid journey from diagnosis, to treatment.
A: It began in 2009 when I was diagnosed with autoimmune hepatitis (AIH), a rare form of liver disease. I had regular labs run for my liver disease to check my liver enzyme levels. I had already been diagnosed with thyroid disease, hypothyroidism in 2008, and I was taking a low-dose of generic Synthroid, levothyroxine sodium.
As time progressed, it became apparent to my Internal Medicine physician that my thyroid hormone levels were not stable. I had to increase my thyroid hormone levels, and I was referred to a local endocrinologist for treatment in 2010. My endocrinologist confirmed that my thyroid problems were related to Hashimoto’s thyroiditis, an autoimmune thyroid disease causing hypothyroidism.
From 2010 to December, 2012, I was regularly monitored with routine lab checks to monitor my thyroid hormones. I was experiencing a great deal of throat swelling and difficulty breathing and swallowing. These symptoms were quite alarming to me and physically uncomfortable. I had a prominent goiter, which was a constant cause of embarrassment for me. I was very self-conscious and panic-stricken about the problems the goiter was causing me.
By December 2012, my thyroid symptoms reached a critical point. I had developed a dry, unproductive cough, along with a persistent hoarseness in my voice. My goiter had increased in size. I had not been sleeping well, and I had gained an alarming amount of weight. I was plagued with fatigue and constant worry over not being able to breathe or swallow without difficulty.
By the time I saw my ENT surgeon for another thyroid evaluation, he didn’t hesitate to suggest that the time had come to completely remove my thyroid. We scheduled my thyroidectomy for January 11, 2013. The pathology report indicated that I had two small areas of cancer cells within my thyroid. Since my ENT surgeon removed all the thyroid tissue, he didn’t recommend chemotherapy because the cancer cells had not spread to the outer edges of my thyroid. Removing the thyroid, removed all the cancer cells. I will have a follow-up appointment with my endocrinologist to decide if a round of radioactive iodine therapy is advised as a precautionary measure.
Q: What have you learned along this journey from having thyroid cancer, to surgery, to being a survivor?
A: I have learned to ask for help when dealing with a major health crisis. I credit the kindness of strangers in guiding me through the scary process of having a thyroidectomy and coping with thyroid cancer. I lean heavily on my faith in times of personal crisis. I know that I drew strength from people I met through social media as I dealt with my thyroid crisis, my AIH support buddies, family and friends.
Q: What do you hope people will learn from your story?
A: I hope people will learn to listen to their bodies and take a pro-active stand on having annual physical examinations. Know your family medical history and write-it down for your family members. When a new family diagnosis happens, add it to the shared family medical history list.
Since my multiple autoimmune diagnoses, I’ve learned that it’s important to put a face on illness, particularly when it impacts other members in the family. I have been able to trace my autoimmune disorders and other autoimmune diseases to my maternal side of the family tree by interviewing other family members who knew about our shared medical history. Raising AIH and autoimmune disease awareness is the reason why I became a self-appointed AIH crusader and put a public face on AIH and Hashimoto’s thyroiditis.
Q: Tell me about your blog and what you hope people will take away from it?
A: When I was diagnosed with AIH, I enrolled in graduate school at Florida State University in the Master of Science in Library and Information Studies degree program. Out of frustration and a desire to learn a new skill-set to embark on a new career path, I decided to become a librarian in hopes of learning to conduct an effective search for medical information using Internet resources and commonly used library databases. I wanted to share my AIH and autoimmune disease resources with others, like me, newly diagnosed and scared about learning to live with a rare form of liver disease. My blog, Ask Me About AIH (Autoimmune Hepatitis) gave me a way to share my AIH journey with other AIH patients, raise AIH awareness, and serves as a source of educational resources for AIH patients and care-providers.
Q: Is there anything else you would like to say that I didn't ask?
A: My thyroid journey doesn’t end with my thyroidectomy. For the rest of my life, I must have regular labs run to evaluate my thyroid hormone levels and keep them stabilized.
To learn more about autoimmune hepatitis and other autoimmune diseases, please check out my blog posts. Always remember that one person’s autoimmune disease journey is different from others. We may have similarities in our disease progression and symptoms, but treatment plans are individualized based on an individual’s health needs. Do not self-diagnosis. See a doctor for a physical and treatment options for thyroid disease.
To learn more about Maggie Hoomes, or to contact her directly, visit her website Ask Me About AIH (Autoimmune Hepatitis) at http://askmeaboutaih.wordpress.com/