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BLOG: Doc, you need a doctor, part 2
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It was summer of August 2014 when I sustained a compression vertebral fracture while vacationing with my family in Mackinac Island, Michigan. The diagnosis — a severe case of osteoporosis — was made 3 weeks later.
My T-score was –3.9 at the spine.
The credit for making this diagnosis goes to my mentor and friend Dan Duick, MD (Scottsdale, AZ). I called him with the MRI finding (Schmorl’s phenomenon) and explaining the back pain I experienced.
“Get a bone density,” he said.
“But why would I have osteoporosis?” I replied.
As I explained in a prior post, Schmorl's phenomenon is a herniation of an intervertebral disc into the body of the vertebra beneath it. It occurs in osteoporosis because the bone of the vertebrae is fragile, and so it gives way during minimal trauma, permitting the collapse of the disc. That is apparently what happened to me while I was riding the bicycle, speeding as I was traversing the perimeter of Mackinac island, jumping over road bumps.
Dr. Duick immediately guessed the diagnosis, though it eluded me and my doctor. He was absolutely right; my bone density did show osteoporosis, and a severe case thereof.
My doctor checked me for all the plausible causes. When we encounter patients with osteoporosis who are not at high risk for osteoporosis (older adults or postmenopausal women), we do a workup to rule out secondary causes of osteoporosis. These secondary causes include low vitamin D, overactive parathyroid glands, steroid use, low testosterone in males and premature ovarian failure in females. Strong family history of osteoporosis also increases an individual’s risk of osteoporosis.
Apart from low vitamin D, I tested negative for all major secondary causes. I thought I had a family history; my late mother, who died in her 60’s, most likely had osteoporosis in view of severe kyphosis, but I was not sure since she never had a bone density study.
Whatever my risk was, I had a severe case of osteoporosis.
This disease is perhaps amongst the few diseases that have not seen many advances in terms of diagnosis. Furthermore, osteoporosis medications have not seen significant advances until about a decade ago, with the introduction of anabolic medications and monoclonal antibodies.
Osteoporosis is less common in men, and, certainly, osteoporosis is less common in males who are not old (I was diagnosed in my mid-50s). Yet, I have only seen my very abnormal T-score in perhaps only few of my patients, and I am not sure if I have seen T-scores that were worse.
On a serious note, I must have had osteoporosis for a long time prior to diagnosis. Osteoporosis does not come overnight!
The traditional medical literature on osteoporosis has focused on postmenopausal women. The reasoning is that the two most common causes of osteoporosis are aging and loss of estrogen in women after menopause (roughly around the mid-late 50’s). Men can develop osteoporosis with age, but because men do not typically experience cessation of gonadal function (that is, loss of testosterone), men develop osteoporosis at a much older age than women. Receiving this diagnosis at a young age honestly frustrated me!
Let us discuss few scientific concepts related to osteoporosis. T-score is the principal concept for diagnosing osteoporosis and staging its severity. As many of the readers would recall, the bone density (DXA scan) report will also mention the Z-score. I will also discuss the concept of Z-score.
The early studies focused on osteoporosis in postmenopausal women. The DXA scan was first developed only for women. The study utilizes low dose CT scan technique which then gets analyzed to measure bone strength in a two-dimensional density, that is measured as gm/cm2, rather than the original density measurement (gm/cm3). The famous measures of bone density are the T-score and the Z-score, which denote standard deviations from the mean. The reference point was originally designated to bone density of women in their late 20’s as the T-score, while age-matched scores are labelled Z-scores. Later, the T-scores and Z-scores were further developed for males.
I will conclude this post with the experience of being a patient. That is, when the doctor becomes the patient.
The first painful experience was that my insurance declined covering powerful medications, namely teriparatide (Forteo, Lilly) or denosumab (Prolia, Amgen). So, I had to take a bisphosphonate. I took alendronate (Fosamax) for 1 year, but it did not touch my osteoporosis.
Then, the insurance covered Forteo. I was prescribed Forteo for 2 years, but it, too, did not touch my osteoporosis. This is not because it was ineffective, but because I was non-compliant with taking the daily injection. That is another painful experience of being a patient. We always criticize those patients of ours who we call “non-compliant,” but when we become patients, some of us, too become “non-compliant.”
So, the next step was to use Prolia, a biannual injection that is given at the doctor’s office. I have been on Prolia for 18 months.
The last painful experience of being a patient was the fact that my insurance would not approve a repeat DXA scan before 2 years from the prior one. My doctor and I wanted to know if my T-scores have improved on Prolia after 6-12 months of the medication. I will have to wait another 6 months for the next bone density scan. What if Prolia will be ineffective? What should I do?
I do not know.
At the end of the day, I am just a patient and I need a doctor. Just like my patient with the thyroid nodule told me: “Doc, you need a doctor!”