Readers on Their Parathyroid Experiences: ‘It’s Up to You’

What we’re talking about (Wikimedia)

This is part of a brand-new Thread, kicked off for this reason:

As I mentioned in yesterday’s Note, I’m not in a position to do follow-up reporting on a topic I mentioned after Garry Shandling’s death. That topic was the disease Shandling suffered from, hyperparathyroidism, and why it deserves more attention than it gets. Those posts also explained how my own experience with this disease had taught me that it was an exception to the “when in doubt, wait” strategy I generally apply before taking dramatic steps. The longer you wait before getting the operation that is the only known cure for this disease, the more damage it will do.

“Don’t be bullied into waiting.” A reader in Los Angeles writes:

My sister and I have both had surgery (she twice) to remove a total of five tumors between us … thereby revealing the inaccuracy of the endocrinology community’s assertion that there is no genetic predisposition to the condition. (Our brother is currently suspect and being tested.)

I lost productive years of my life arguing with my [one major LA-area medical center] endocrinologist about whether my calcium levels were “high enough” to warrant action. Finally found a guy at [another center in the area] who believed me when I said I was suicidal from the symptoms. I absolutely would be dead if he hadn't listened to me, and will be forever grateful even though —

— one of my vocal cords was paralyzed while “spelunking” for the second tumor.  Sounds much like your experience with your wandering para; you were just a little luckier.  I lost my career because my speaking voice is now raspy and annoying, usually failing entirely by mid-day— but I would do it again.

My sister and I are both medically savvy (she is an R.N.) and capable of advocating for ourselves, but we still had trouble getting endocrinologists to take us seriously.  We do not understand why that specialty is so reluctant to admit that there are a lot of sick people out there suffering needlessly.

We are heartened by the part you have played in spreading the word, even if you must now bow out of the arena to get back to the rest of your life, and we thank you for joining us in encouraging patients not to be bullied into waiting.

Update from a reader who works as a geneticist (posted by CB):

I just wanted to note one inaccuracy in one of the readers comments on hyperparathyroidism: “My sister and I have both had surgery (she twice) to remove a total of five tumors between us ... thereby revealing the inaccuracy of the endocrinology community’s assertion that there is no genetic predisposition to the condition.”

While I am not an endocrinologist, I am a geneticist, and the fact that this person and his/her sister both had tumors doesn’t prove anything about the genetics of the disease—neither in the population at large nor in the specific case of these siblings.  It is impossible and improper to generalize anything about the cause of their tumors or about these tumors in general based on their one specific case.

For example, if I am correct in assuming that these siblings grew up together, then they shared a rather similar environment. According to the reader, the endocrinology community hasn’t found any genetic factors that influence predisposition—that doesn’t mean there aren’t any; it just means that if there are, their effects are not large enough to be able to be detected in the studies, or perhaps that several factors need to be found together in just the right combinations which happened to appear in these siblings but rarely otherwise, or that these combinations of genetic factors aren’t rare but need to be in just the right environment in order to produce tumors, etc.

Biology is messy. If indeed this disease runs in the reader’s family, then I would encourage them to talk to a genetic endocrinologist about studying their family.  Targeted family or pedigree studies can be quite powerful in identifying genetic factors and can be an important complement to studies of larger populations.

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“Feeling like shit.” A less positive experience from a reader in Seattle:

I also had the PT surgery three years ago from the most experienced surgeon in Seattle. Three hours of digging in my neck. They could not find it and told me to wait till it gets bigger and have a better chance of finding it.

Feeling like shit.

Glad yours turned out successful.

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“Your situation is anomalous.” A doctor writes:

Your situation is unusual, because of such a hard to find tumor. Both you are Mr. Shandling were a bit anomalous because of gender; the disease is most prevalent in older women.

Making an accurate diagnosis for elevated calcium levels is important as medications, cancers and other diseases can cause it.

When I completed training almost 30 years ago the standard was to operate unless there was a very compelling reason not to. That has changed to operating when there is some reason, e.g. bone loss, kidney stones, rising levels….  

All should seek a surgeon with experience and where intra-operative PTH testing is done (I think this is universal now). [JF note: This refers to real-time readings of parathyroid hormone (PTH) level while the operation is going on. The PTH level declines very rapidly as soon as a diseased PT gland has been cut out. So if it stays high after one bad gland is removed, that tells the surgeons they have to look for another.]

One of your respondents mentions a place in FL. I have seen their website and despite some distaste for their self-promotion, I bet they do an excellent job.  And your readers should know that 5 hours is highly unusual (lucky you!); an hour or less is more typical.

This gets into the tricky terrain of recommending doctors or hospitals, which for obvious reasons I’m not going to do. As with any complex procedure, it makes sense to choose a facility and doctor that perform the operations frequently rather than rarely. When we were asking around, eight years ago, the UCSF hospital and Dr. Quan Duh came highly recommended on those grounds (and I have since heard from other patients grateful for his treatment there).

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“The place in FL.” I deliberately removed the name of this “place in FL” from a previous reader’s message, because I’ve had no first-hand experience with it. But because it absolutely dominates on-line discussions of parathyroid issues, and will come up at the top of any search you do, and actually runs the site parathyroid.com, there’s no reason to be coy. The place is called the Norman Parathyroid Center, and it is in Tampa. My friend Phil Baker of San Diego, a tech industry veteran and writer, did a long post last week, after Shandling’s death, about his own experience at Norman. You can read it here.

Phil Baker ends with an observation on health care in the internet age:

When [the local surgeon in San Diego] ran his tests and was unable to determine which of the four parathyroid glands needed to be removed, he suggested waiting six months until it might become clearer, as the disease progressed.

So my options came down to relying on my local doctors and living with the disease for another six months or more, or relying on the advice from the [Norman Center] website…. [Which Phil then extensively researched.]

A few weeks later my wife and I flew to Tampa and went to the clinic the next morning at 5 a.m. … I was given one test, received a light anesthesia, and had the short operation. In my case it lasted 19 minutes. About a half hour later when I awoke, the doctor gave me a photo of the diseased parathyroid, and told me I was completely cured, and could leave. We walked out of the hospital at 11 a.m. and went out to lunch.

What I learned is that when it comes to your own health, you need to take charge and do your own research. As good as our doctors may be, they’re not always aware of other options, beyond what they are familiar with in their own community…. Your doctor doesn’t have the time to research every disease and option; therefore, it’s up to you.