My Thyroid Story: Diagnosis (Part One of Four)

March 25th marks the one-year anniversary of my being diagnosed with Graves' Disease. In the months that followed, I learned I had thyroid cancer as well. But through all of the repetitive testing and unexpected procedures I found there were few sources which documented events specifically. I would have anticipated, in this enormous blogosphere of ours, at least two or three personal experiences with Graves' -- not so. Of course, I couldn't resist taking a crack at changing all that.

In December of 2013 I got one of those colds that just won't quit. As much as I hated to admit it, I was on the short run to age 50, and figured that was the reason I was finding it so hard to shake. By January, a persistent cough (Scott called it my "TB cough") had become just that -- persistent. My energy level still had not returned.

By February I had begun to notice, despite getting an eye exam and new glasses only weeks before, I was having trouble focusing, particularly in dimly lit areas, and it almost seemed as if a veil hung before my eyes, darkening and obscuring my vision. My contacts were uncomfortable for periods of time longer than a couple of hours, and my eyes always seemed to be dry or "picking." As those of us who maintain an irrational aversion to the hard-working, altruistic folks that call themselves medical professionals are wont to do, I put off seeing the doctor by attributing my vision issues to allergies. In addition to this I was itching uncontrollably ("dry skin" -- it was winter, after all), I had ridiculous hand tremors ("must be a temporary dietary thing"), heart palpitations ("stress"), difficulty breathing ("darn cold must've gone right to my chest") and I was having hot flashes like crazy ("The Change" -- I was actually excited about that!).

By March the shakes had gotten so bad I could barely recognize my own handwriting, and I was starting to notice a tremendous amount of muscle loss despite my continued workouts. The bouts of diarrhea and weight loss even though my appetite had increased, and my insatiable cravings for sugar, couldn't be anything too serious, right? After all, anything with side-effects that include extreme weight loss while binging on chocolate can't be all bad. But by this time Mr. Murphy had stepped in: "Call the doctor or I will."

Well, have you ever locked yourself in the bathroom, retching and heaving for six days, with the last ounce of strength left in your ravaged body dialed the doctor's number and with your dying breath made an appointment, only to find as you sat waiting in the examination room later on that afternoon, your temperature returned to normal, the snotworks honored the cease and desist order you'd given them days ago, and the doctor could find absolutely nothing wrong with you? Yeah, that didn't happen. The day I saw my NP -- to whom I owe my deepest thanks and my firstborn (Stacey, if you want him he's 24, he comes with a lovely wife and an enormous appetite) -- my legs had swollen to twice their normal size, and my blood pressure was through the roof. She sent me for a chest x-ray and, of course, blood work. "I think we could be dealing with a thyroid issue here."

When the test results came back, she had my diagnosis: Graves' Disease. Graves' is an autoimmune disorder which affects the thyroid, resulting I an overproduction of thyroid hormones, or hyperthyroidism, and can affect the eyes as well. My Nurse Practitioner sent me to a local Endocrinologist. This is where it gets a little ugly. Through an ultrasound completed in his office and a review of the blood work, he confirmed I had Graves'. He also discussed three options for treatment: drug therapy (Tapazole, aka Methimazole, a drug which would help to bring my thyroid hormones under control), RAI (radioactive iodine, an ablative treatment to destroy thyroid tissue, more or less removing the target for Graves' Disease), or a complete thyroidectomy. Drug therapy was of course, the least invasive and, based on my age and general health, probably my best option. He sent the script to the pharmacy and told me to schedule a three-month follow-up on my way out.

It was a beautiful warm, sunny day, so I ran a few errands, giving the pharmacy enough time to do their thing. By the time I got home with my cute little orange bottle of "quick fix" in my hand, I had a message on the answering machine: "DO NOT take the medicine! You must have more blood work. Have a nice day." Huh? Inquiring minds want to know, right? So I immediately fired up my Google machine to check the side effects. "This medication may rarely cause very serious blood disorders (such as a low number of red cells, white cells, and platelets), especially during the first few months of treatment." Less than an hour earlier I had been sitting across from this "specialist" discussing my previous issues with anemia. I called.

"I was just in the office. Dr. X diagnosed me with Graves' Disease and prescribed for me Tapazole. I got home from picking up the script to find a message from your office telling me not to take the medication, and to have more blood work."

"Yes, your blood work indicates your hemoglobin levels are extremely low: seven. You should not take the Tapazole."

"Ok...so when should I have my blood retested?"

"When did the doctor say he wanted to see you again?"

"Three months."

"Okaaaay, in three months, then." (Like. Duh.)

Now, I'm no doctor, but I do know that palpitations, high blood pressure, tremors, and extreme weight loss are probably not issues you wanna put on ice for the next three months (even though I'd been quite ready to do so before I found out I truly had something). And since they were progressing at a rate faster than tax day coming... (By that time, I had become so weak I couldn't even kneel to the bottom shelf in the grocery store without having to use the upper shelves to pull myself back up.) I started searching. Endocrinologists in Delaware County are few and far between, so even the other offices were too full to take on new patients, or couldn't see me for three months. I called my NP and explained the situation hoping she could pull some strings and get me in somewhere. Her nurse recommended an office in West Chester -- a bit of a hike, but at this point I was ready to go to the moon.

During my initial appointment, my new -- and wonderful! -- Endocrinologist reviewed the blood work done previously, confirmed the diagnosis, also determined the presence of at least one nodule on my thyroid, and discussed my history. Because of my issues with Tapazole, we moved on to discuss the possibility of RAI. This would require more blood work, this time targeting my T4 levels (elevated T4 during RAI could cause thyroid storm, a life-threatening condition). In the meantime, she prescribed Metoprolol and Potassium Iodide to control symptoms. You wanna talk about feeling like a new woman? Though some symptoms persisted, the medication took the edge off and lessened their impact on my life. My workouts, which had ceased shortly after my diagnosis were even somewhat possible again!

Test results, however, indicated RAI would not be possible, and my Endocrinologist recommended a surgeon. The surgeon saw me almost immediately, but would not consider surgery until she received satisfactory white and red blood cell counts. This delayed scheduling of my surgery for about three weeks as she and I worked with diet and I underwent a round of steroids to reduce the swelling in my thyroid.

In the meantime, she scheduled a CT Scan to sort of "get the lay of the land" before she started cutting into me. I appreciated that. The scan required no special preparation and took less than an hour from arrival to departure. At the hospital I changed into a gown, and dye was injected into my arm as contrast was required to highlight the "offending area." The scan itself was painless: a cushion behind my neck tilted my head back to expose the entire front of my neck, and I was not allowed to swallow while the actual scan was being performed (a period of only a few seconds).

D-Day came (Determination Day)! The CT pics and blood tests were back. Surgery was a go, and everything should be pretty routine from here on out!