The Parathyroid Experts Speak
To round out some of the reader accounts and other reports collected in his thread, occasioned by Garry Shandling’s death, here without further setup are statements from some authorities.
1) The “Parathyroid Peeps.” Barbara Creamer, one of the founders of a patient-advocacy group called Parathyroid Peeps, writes:
We are 3 San Francisco Bay Area women who suffered from primary hyperparathyroid disease. We all had our surgeries performed at the Norman Parathyroid Center in Tampa, Florida - one of us in 2011 another in 2013 and the third most recently in 2014 to remove parathyroid tumors. The surgeries all took less than 21 minutes. You can read our stories here. We didn't know one another prior to meeting in an on-line support group...
There were number of problems we personally experienced that contributed to a delay in diagnosis and surgical treatment. Though cured ourselves, we felt compelled to educate others about the disease to move the larger conversation forward to create change. Thus our education and advocacy group Parathyroid Peeps came into being. You can read about our mission here….
One major issue [in missed diagnoses] is that laboratories do not necessarily take into consideration a person's age when reporting normal calcium values - the first lab test that indicates that one or more of the glands are not function properly. As a result, high values for patients 30+ are often ignored and further testing is delayed.
Another is the "wait and see" model of care that many doctors ascribe to due to the American Association of Endocrine Surgeon's and the Endocrine Society's Positions and Guidelines.
Surgical techniques also vary dramatically and are surgeon specific…. As a result, many patients who are referred to their local surgeons, who are not experts, suffer needlessly. We hear reports of good parathyroid glands being removed inadvertently, 3 1/2 gland being removed unnecessarily causing HYPOparathyroidism ( devastating condition) and/or a second rogue gland being missed. That is why we are also advocating for improvement for surgical treatment.
2. From the treatment center. As best I can tell, most of the parathyroid surgeries that are done anywhere in the United States are now done in one place, the aforementioned Norman Parathyroid Center in Tampa. (For instance, check out this startling chart.) As mentioned before, I have no experience them and am not touting this center or anyplace else. But I received this note from Dr. Deva Boone, one of the staff surgeons at Norman:
I am one of the six surgeons at the Norman Parathyroid Center in Tampa, Florida. I wanted to say thank you for highlighting the disease and allowing your readers to share their stories.
Most of our patients have had high calcium levels for years prior to seeing us, due to the "watchful waiting" approach of their physicians. We know from experience (we operate on over 60 patients a week with parathyroid disease) that high calcium always leads to problems over time. Its effects occur throughout the body - on the brain, bones, kidneys, heart, etc. and it can make people miserable from extreme fatigue and body aches. There is no reason to wait for serious complications like kidney failure or heart attacks to pursue a curative operation. We know that the longer you have it, the worse it gets.
Our hope is that your article and others like it will empower those who are currently receiving "watchful waiting" and convince them to pursue the treatment they deserve.
3) Watch those changing age-adjusted levels. A reader makes a point stressed in other messages I’ve received:
One thing I don't think I've seen mentioned is this important fact - as you get older, your [target] blood calcium numbers go down with age. As a result, when the lab says your numbers are in range, this may not be true. It may be in range for a 40 year old, but as an older patient, that number would indicate a parathyroid problem.
That's exactly what happened to my sister. For 5 years, she kept complaining about a myriad of symptoms but because she had other health issues, they were always attributed to side effects. Two years ago, one of her doctors mentioned that her blood calcium number was a tiny bit high, but so slight that it was no big deal.
My sister decided to to check it out herself and quickly found that that a number in that range was not "slightly elevated" for an over fifty woman and that every symptom she had experienced for the past five years was attributable to hyperparathyroidism. She made an appointment with an endocrinologist the next day and a month later had surgery. It was a miracle how much better she immediately felt.
The takeaway here is that once you hit 50, ask for a blood calcium test, especially if you're female (1 in 50 woman over 50 have a parathyroid problem). And ask to see the numbers yourself and know the correct range.
4) Other tricks of diagnosis. A doctor in New Zealand on further fine points:
Although not in the US or an endocrinologist I am a physician, have worked in endocrine and have few comments.
As mentioned it is commonly found in elderly women, not middle aged men. In addition, hypercalcaemia is far more common than hyperparathyroidism. [JF: This is, a high blood-calcium level doesn’t automatically mean you have this disease.] That’s (presumably) why many readers have stories of being “ignored”.
OTOH, the key to understanding endocrinology is feedback loops and getting to grips with “inappropriately normal” results. For example, a person with a corrected calcium of 2.9mmol/L (ref range: 2.4-2.6) and PTH of 6 pmol/L(ref range 1.5-6) has an inappropriately normal PTH – it should be fully suppressed by the elevated calcium (in order to return the serum calcium level to normal). This is difficult for anyone to get their head around, especially if it isn’t part of your daily routine workload. [JF: If you’re healthy, you shouldn’t have both a high blood-calcium level, and a high parathyroid hormone level. If the first is high, the second should be low, and vice versa.]
My final piece of wisdom is psuedopseudohyperparathyroidis
m is a poor word choice in “hangman” games… albeit it does scare everyone at the beginning.