I got some bad news yesterday. My parathyroids seem to be failing.
Removing My Thyroid
I had my damaged thyroid surgically removed in 2009, after precancerous Hurthle cells were found in a biopsy of a thyroid nodule. My father died of aggressive thyroid cancer, and I was exposed to significant levels of radioactive iodine in utero, during infancy and childhood in Richland. I was at significant risk, my doctors advised.
That surgery resulted in loss of half of my parathyroid glands as well. Most people have four parathyroid glands, tiny glands which adhere to the back of the thyroid gland. The parathyroids control blood and bone calcium levels. My thyroid, upon removal, was a non-functioning inflamed mass, as the autoimmune process had slowly destroyed it over the years since exposure. My surgeon and her team were unable to locate my fourth parathyroid within that inflamed mass that used to be my thyroid. I therefore lost that parathyroid. One additional parathyroid became disconnected from its blood supply and had to be autotransplanted under my clavicle.
I awoke from the surgery to find my arms were both without feeling. I was to learn that this was a symptom of hypoparathyroidism. I was quickly infused with calcium, and began my new life with a rare disease that can cause seizures and other neuromuscular and neurologic problems.
Now I Have Seizures
Lately, I have begun to experience increasing “tetanic” seizures of my feet, legs, and hands—my muscles seize up painfully, and without warning when my calcium levels fall below a certain level. I have thus far not been able to control these seizures, and must wear carry calcium with me at all times. I also wear a Med Alert bracelet when I travel so that people know how to help me should these seizures occur. If I don’t receive calcium quickly, these seizures can advance to bronchospasms, where I can’t breathe, and laryngospasms, where my throat closes up.
The Experimental Next Step
My primary physician referred me to a specialty clinic at UCSF, which deals with parathyroid disease. I had my consult yesterday.
The theory developed during that consult is that all of my parathyroids are failing, possibly because of the autoimmune process (which originated from autoimmune thyroiditis), or because the blood supply to the parathyroids didn’t re-establish after surgery. Either way, I may be in a whole lot of trouble here.
I did a load of blood tests, including several to see whether my parathyroid hormone levels at this point are even detectable. As conventional oral calcium doesn’t seem to be working to control this disease, my options may be limited to repeated daily injections of experimental synthetic parathyroid hormone, which has been associated in animal studies with risk of bone cancer.
I’ll keep you posted here on my progress, and am working hard on staying resilient!