Yesterday, in the more formal, non-Notes precincts of the Atlantic’s site, I did a post occasioned by Garry Shandling’s death. It’s about the disorder Shandling said he had been diagnosed with, shortly before he died from a heart attack at the (relatively) young age of 66. The disorder is hyperparathyroidism, which I had never heard of before I learned I had the same condition ten years ago.
The reason for my post was to emphasize a lesson-of-experience I wish I’d known a decade ago, and that might help others now. The lesson is that “watchful waiting,” generally so wise an approach to life, is a mistake in this case. Once you’ve gotten indications that you have a parathyroid gland problem, mainly through a higher-than-normal calcium level in your blood, waiting is the wrong strategy. The odds are that you’re doing yourself real damage with every week you delay before having the bad parathyroid gland surgically removed.
Some details of how and why are in the main piece. (Including why it was a mistake for me to roam around in China for three years, as this condition got worse.) My point in telling the story was to spare others my predicament of (a) never having heard of a certain disorder, and thus (b) thinking, as I did, Aww, what’s the rush? on the question of surgery.
Here are two of the many reader accounts that have arrived overnight on this theme. First, from a woman in Alaska:
I suffered for nine years going to an endocrinologist who every time I saw him said "we'll wait a little longer and repeat the tests again...for 9 years! I got sicker and sicker, and I really think I was dying.
A friend of mine who lives in a small town in Alaska had the same disease, but he researched it on the Internet and ended up going to [a well-known parathyroid center in Florida, which I’m not naming because I don’t want to get into the medical-referral business—JF]. They removed his adenoma and he was immediately well again.
On that strength I self-referred to [the same place] and had surgery on February 2. Many people were skeptical, but I forged ahead. I am a new woman!
And from another woman:
Thank you for bringing this scourge to light, both to patients and to physicians. But so much more needs to be said. So many other people are out there suffering needlessly either due to their own ignorance or their physician's.
Hopefully you will write a follow up article that will get picked up by the broader news service. There needs to be a discussion of the outdated criteria for making the diagnosis. This is a whole lot more common than originally thought.
Doctors also need to get rid of the old idea of watch and wait. In experienced hands the newer procedures are much less traumatic than they used to be so there is no need to wait and hope things get better while risking kidney stones, heart attacks and a dozen other things instead.
Research needs to be done on possible genetic links. There are too many people showing up with this in families that are not part of MENs 1 or 2 etc. [JF: MEN 1 and 2, for Multiple Endocrine Neoplasia, are glandular disorders with a known genetic link.]
And finally, doctors need to entertain the idea that patients with persistent symptoms may have a 2nd bad para that was missed (maybe hiding in the chest like yours) or those with recurring symptoms after initial resolution may have additional adenomas spring forth like mine did.
For busyness-of-life reasons, I’m not likely to write more about this topic. But I’m happy to do what I can to call attention to it, mainly because it’s an exception to the generally sound “when in doubt, wait” approach. Thanks to these readers and others, and thanks to Drs. Brian McBreen, of Washington, and Quan Duh, of San Francisco, for diagnosing and then treating my own parathyroid case.