My Account of Hyperparathyroidism and Parathyroid Surgery Part 1
Turning forty is hard enough. Add two deaths in the family, a family feud, raising two kids under six and a parathyroid surgery, and turning forty becomes a test. Welcome to middle age!
According to the Columbia University Medical Center Department of Surgery, each year, 100,000 new cases of primary hyperparathyroidism are diagnosed in the United States, affecting 0.2% to 0.5% of the population. Women are more commonly affected than men and the incidence of the disease increases with age.
My health issues with primary hyperparathyroidism began in April 2008 with a routine blood test. (My story is a case for getting that annual physical and blood work done.) My routine blood test results indicated that my blood calcium level was 10.4 (10.2 is the high). This prompted my primary care physician to order another blood test. The second blood test indicated my blood calcium level was now at 11 and my Parathyroid Hormone (PTH) levels were through the roof at 110 (10-65PG/ML is the normal range).
Meet Your Parathyroid Glands
Not to be confused with the thyroid, the parathyroid glands are small endocrine glands that produce parathyroid hormone. Parathyroid hormone regulates serum calcium levels within the blood and bones. We have four parathyroid glands, found behind the thyroid gland. In rare cases, parathyroid glands may be located within the thyroid or the chest.
That second blood test, resulting in high parathyroid hormone (PTH) levels, indicated that I almost certainly had what is called hyperparathyroidism. Hyperparathyroidism occurs when the parathyroid glands secrete too much PTH and the fine balance of calcium and phosphorus in the blood is impaired. My blood calcium was rising and my blood phosphorus was falling. This is the most common type of hyperparathyroidism, also known as Primary Hyperparathyroidism.
Severe elevations in calcium can result in thirst, excessive urination, kidney stones, thinned bones or inflammation of the pancreas.
Causes of Hyperparathyroidism
The most common cause of hyperparathyroidism (85% of cases) occurs when one of the four parathyroid glands becomes enlarged and becomes a benign tumor called a parathyroid adenoma. Test results would later reveal it was my lower left parathyroid that had become a benign tumor that was overactive and essentially going haywire - producing too much parathyroid hormone and too much calcium in my blood. In some cases (15%) multiple glands become enlarged simultaneously; called parathyroid hyperplasia. In very rare cases (1%) hyperparathyroidism is caused by a parathyroid cancer. Imagine my reaction after reading that, knowing that thyroid cancer runs in my family.
Surgery to remove the enlarged gland is the only treatment for this disorder. Surgery results in a complete cure in 95-98% of patients with hyperparathyroidism. I would soon find out that surgery is recommended to all patients who have symptoms and to all patients with more than mild elevations in blood calcium.
Symptoms of Hyperparathyroidism
- Mood Swings/Irritability
- Difficulty with Concentration
- Bone and Joint Aches
- Loss of Appetite
I actually experienced about four of those above symptoms, a loss of appetite was unfortunately not one of them! My husband will be the first in line to testify that the mood swings, depression and irritability are indeed real-life symptoms. I also can attest to being fatigued during the day and I experienced some insomnia, waking up in the middle of the night, every night for at least two hours.
But I must note, like many other women my age, I did have other stuff going on. I just stopped taking an anti-depressant the very same month (no, not cold turkey.) I was approaching forty (June) and I thought the mood swings might be due to hormonal changes that occur during perimenopause. I was very confused as to what was mentally and hormonally going on with me that year. Now, looking back two years later after my surgery, I have no doubt that it was hyperparathyroidism that was causing all of my symptoms.
Taking Health Care into My Own Hands
After my second blood test, I waited for the results. The results never came. What did come was a letter from my primary care doctor informing me that I had an appointment with a local endocrinologist in August. I didn’t receive a phone call, and there was no explanation in the letter as to why I needed to see an Endocrinologist. (Remember, at this point, I don’t even know what the second test results are.)
Having learned on my own about Primary Hyperparthyroidism, I knew I couldn’t sit around for three months waiting to see a local endocrinologist. I mentioned that thyroid cancer runs in my family. I understood my medical condition involved the parathyroid and not the thyroid and that my chances of having a cancerous tumor were about 1% which was comforting. Still, my father had portions of his cancerous thyroid removed in two surgeries by the same surgeon who operated out of Beth Israel Deaconess Medical Center in Boston. (I am happy to say that each surgery was successful. My father is on medication for life, but is doing quite well.) If I was going to have to have surgery, I believed I would be in the best of hands with his surgeon whose specialty was thyroid and parathyroid surgery. It only made sense that I seek out an endocrinologist and turn over my case to Beth Israel Deaconess Medical Center, a Harvard-affiliated teaching hospital located in Boston, MA.
Each year, about a quarter million patients and their families count on Beth Israel Deaconess Medical Center. BIDMC has a state-of-the-art trauma center, and developed sophisticated minimally invasive techniques, and called on innovative training and technology to ensure the highest level of patient safety and quality of care.
This concludes part I of a this three-part series. In part 2, I will discuss meeting with my BIDMC endocrinologist, the tests that I was required to undergo, meeting my surgeon and my experiences up to my surgery. Part III will consist of details of the actual surgery. (Sorry no video.)