This is a huge topic I hope to tackle in small bite-sized pieces, this year. This is only Part I.
It’s not for everyone and a bit out-of-character for me. But here goes.
After a routine OB/GYN exam during the summer of 2006, I got a call stating my thyroid blood work was at “dangerous levels” and I was referred to an Endocrinologist. The very first appointment with Endo #1 resulted in a sonogram and needle biopsy, that very day. Needless to say, I was scared.to.death. I never once thought of cancer, I was only terrified about four tiny needles being inserted in my neck – on both sides – which added up to …eight tiny needles. No anesthesia. No topical/surface numbing help, just my neck and needles.
I was diagnosed with HYPER-thyroid due to benign nodules on both sides of my thyroid gland. My metabolism was in overdrive. The protocol was, and still is, RAI, or Radioactive Iodine Treatment. RAI is based on the idea that the thyroid gland will absorb all ingested iodine first and very little, if any at all, is passed into the rest of your body. Following along with this logic, radioactive chemicals and iodine are combined in a pill form and when swallowed the thyroid gland will absorb all of the toxins and eventually die off. Once the thyroid gland is dead, determined by blood work, patients are then given thyroid hormone replacement to, theoretically, supplement everything the body needs. Just one little pill, daily. Simple as that. I was never informed that I would live the rest of my life in a HYPO state.
As the old saying goes, hindsight truly is 20/20. Pre-2006 I was starving. For years I had been hypersensitive about the next meal, always planning, always preparing, always hungry. Hungry to the point of serious desperation and anger if we didn’t eat on time. I chalked it up to having two babies back to back and nursing both for long periods of time. During the course of seven years, between the year Our Firstborn (1995) was born and our Thirdborn (in 2002) I had three miscarriages. I was always extremely exhausted but pushed harder thinking I was lazy. I should also interject here that we traveled the country with Hubby’s job two separate times within these years. It was easy to think I was exhausted for other reasons. I have no idea how long I suffered with HYPER-thyroid but looking back now, I know it was many years.
I distinctly remember the few weeks that I felt normal after RAI. Hubby had a project in Los Angeles and I actually drove several hundred miles of that stretch. I had not been able to drive much at all during those many months of traveling because I would literally fall asleep at the wheel. That trip lead us right into 2007 when I began my prescription of Synthroid. By the Fall of 2007 (we were in Wisconsin by then) I distinctly remember speaking with my Endo over the phone while she was at a park with her children. I suppose I had called enough times (stating SOMETHING IS WRONG WITH MY BODY!) that she decided to call me herself. Our conversation went well and she expressed how imporant it was that my levels be checked regularly and that I should never miss an appointment. Since there had been very little mention of the degree of seriousness that went along with my “levels”, if we were out of town with Phillip’s work, I would just make an appointment when we were in town. At this point, early on, I truly had no clue and depended solely on whatever she and her nurse told me. My faith in her settled and Lord knows I tried (hard) to keep her.
However, weird symptoms kept cropping up. I’d call and the nurse would always leave a message stating that my symptoms were not thyroid-related and that I should consult my primary care physician. Looking back now, I honestly don’t know how she sleeps at night. Knowing what I know now, I’m absolutely positive she got numerous calls a day about the same weird symptoms. – Well, not willing to give up (the symptoms are way to scary to give up!) I did see a nurse practitioner who diagnosed me with anxiety. She prescribed Xanax. Desperate, I took one on the way home from her office and was asleep by the time we pulled up in the driveway. (Hubby driving, of course) I asked my RN sister about Xanax and I will never forget her words: “Absolutely NOT.” I had no clue. She explained how addictive it can be, and that I did not need Xanax. She was right. Even though I cut a few in half trying to make them work, they didn’t. I was just a very drunk, sleepy thyroid patient with the very same symptoms I’d always had. I eventually flushed the Xanax.
Finally coming to terms with the painfully obvious fact that Endo #1 wasn’t listening, during another routine OB/GYN visit, I asked to be referred to another Endo. I saw him only once. I began to explain several symptoms, including my weight. His suggestion was to see a nutritionist in preparation for gastric bypass surgery. He failed to let me know that I was VitD difficient but perhaps it was because he left the country shortly after my visit. It was within a few weeks that I received a referral letter stating that Endo #2 had left to practice in another country. On to Endo #3.
I saw her only once. She was emphatic that I take a multi-vitamin every day and that I should probably consider walking at least 30 minutes a day. Nice try, lady.
As weird symptoms persisted month after month, I decided to get a second opinion regarding the anxiety diagnosis so I went to our local family doctor and, though she listened and seemed genuinely interested, in the end I was still stamped with an anxiety diagnosis. Needless to say, I felt utterly defeated. I’d never had a history of anxiety even with plenty of life circumstances that could’ve easily caused panic/anxiety. It just didn’t make sense. I made the commitment (to myself) that I would take Lexapro for one year. During that year, I gained 30 MORE pounds and as I mentioned with the xanax scenario, I was just a very flatlined, easy-come-easy-go, thyroid patient with the very same symptoms I’d always had.
After a little over a year, I bravely weaned myself off Lexapro. It was a great decision. I realized through the experience that I had no emotion at all. I found that I couldn’t muster up the emotion or strength to write anymore; that alone was enough for me to call it quits but in all honesty Lexapro did nothing for the underlying, untreated, undermedicated issues at hand. Months went by, long after I knew the Lexapro was out of my bloodstream, and I continued to decline. The last few years, particularly the last 16 months, I’ve declined at an even more rapid rate. I knew something had to change or I was going to die.
In a desperate, last-ditch effort I reached out to an online group. I explained my history, symptoms, and fears. Within just a few minutes there were several comments on the thread I’d started and we ended up “chatting” the entire day. I’d finally found a glimpse of hope.