Embracing Normalcy

Despite being only 27, I’ve had more than my fair share of medical issues, especially during the last three years. I’ve been spoiled with a good medical team, and I’m convinced that makes a difference in one’s recovery. I hear horror stories of people with doctors who have no bedside manner, are downright rude, discount their symptoms as imagined or exaggerated, or worse, dismiss them as patients altogether. I’m fortunate to have been blessed with good, caring, knowledgeable doctors and nurses. Until now.

One of the worst parts of leaving Florida was leaving my endocrinologist. I cried in his office the week before I moved when I informed him it’d be our last appointment together. He was so kind and caring, but also very smart and experienced with Graves disease. He was the one to tell me my bulging eyes were not an infection or allergies like the ophthalmologist tried to tell me (OK, so he was the one idiot in my Graves journey) but in fact thyroid eye disease. He sent me directly from his office to the neuro-ophthalmologist’s office so that I could begin immediate treatment on my eyes – ‘roids, and not the “get big and strong” kind. Just the “get fat and acne” kind. My endocrinologist (we’ll call him Dr. L) acknowledged every symptom or side effect I had, and either attributed it to my thyroid, or sent me to the appropriate specialist. He was the one to tell me my difficulty swallowing was not due to the tumor on my thyroid but probably to acid erosion and a constricted esophagus – a lot of tests and a little bit of anesthesia later confirmed this.

I had appointments scheduled with two different endocrinologists when I moved home – Dr. H and Dr. K. Dr. H was in the big medical group where my primary care physician is, and Dr. K spoke at last year’s Graves’ Disease and Thyroid Foundation annual conference, and I liked that. When I met my eye surgeon, I mentioned both doctors and he told me his own story of Hashimoto’s (another thyroid disease) and that he really liked Dr. C both personally and professionally. So I canceled my appointments with Drs. H and K and made one with Dr. C. I liked him, except when he got out his thyroid model and started explained thyroid function to me. Hi, buddy. I’ve had Graves for two-and-a-half years. I am an informed patient. More than that, I’m an advocate. I’m active with the Foundation, and have read more peer-reviewed articles about thyroids and eyes than a lay person should. Regardless, he was just doing his job and everything else about our appointment was great. He agreed that not everyone feels good with the same thyroid levels – that I might feel better on one end of the “normal” spectrum or the other. He said it’s not just about lab results but also about how I feel. Thank you!

Well, I haven’t seen him since. They canceled the two-month follow-up appointment saying it wasn’t necessary. Still, I was sent for labs every six weeks. Within a week, his office would call me back to tell me I was still hypothyroid, and to up my replacement dosage. This process was working for me.

And then I had my next set of labs done August 29, first thing in the morning. A week later, I called the office looking for my results. No dice. I called the next two days in a row – still nothing. The receptionists kept telling me they were leaving messages for the nurse, who would call by the end of the day.

Finally, in Saturday’s mail, I received a piece of paper I have never seen before. It basically said: Your lab results were normal. If you’re on thyroid replacement, stay on the same dose. The End. Um, this doesn’t work for me. I needed to know what the actual results were (they test three different thyroid hormones), and when I could get them checked again. So I planned to call a fourth business day in a row when his nurse finally called me during my drive to work this morning. She gave me the results, and I requested she send me hard copies of all my labs since becoming his patient. She said he wants to see me back in six months, and will check my levels again then. Wait…in six months?! No, no, no. That’s too long. This is the first time in three years that my labs have come back normal. I have been tested at least every two months since then, but usually every six weeks. I am so not comfortable waiting six months to see if my body is working correctly. Especially since it is a proven fact that physucal and psychological stress can cause thyroid levels to fluctuate, and with my major surgery just two weeks away, a lot could change between now and March 2013.

During our 20-minute phone call, the nurse (Joyce) kept putting me on hold to talk to Dr. C. He said A. yes it’s fine for me to have a flu shot B. my surgery won’t affect anything C. the fact that I still feel hypo (tired, weak, bloated) is due to something else and D. my levels will not change at all in the next six months.

I am tempted to tell him to suck it. I think a new endocrinologist is in my near future. This is just ridiculous. I realize I may be more informed and thus more easily concerned than other patients, but this is my health we’re talking about. If my insurance is willing to pay for a $25 blood test every six weeks, why wouldn’t my doctor let me have it?

In the end, the nurse agreed to send me a slip I can take to the lab and get my levels checked whenever I want...but just once. She said, “If it comes back normal again in six weeks, where do we go from there?” as if I refused to believe I could ever be euthyroid (normal thyroid levels) again. I said, “Then great. I will be happy to continue my current dose with labs every six months.” Sheesh! Is it so much to ask that we don’t wipe our hands of my thyroid issues after one normal blood test despite 15-20 abnormal tests in three years? Apparently so. At the end of the day, I was shocked but pleased that my results came back normal. I don't feel any different or better than I did when I was severely hypothyroid, but sometimes symptoms can lag a bit. I will be thrilled if I never have to change my dosage ever again, but that isn't realistic for Graves patients.