PRIMARY HYPERPARATHYROID DISEASE
RAISING AWARENESS AND ADVOCATING FOR IMPROVEMENT IN DIAGNOSIS AND STANDARDS FOR SURGICAL TREATMENT
ABOUT US….We are 3 San Francisco Bay Area women who are sharing our personal journeys of overcoming the debilitating symptoms of primary hyperparathyroid disease through surgical removal of our non-cancerous adenoma(s). Our purpose is to raise awareness and advocate for improvement in diagnosis and standards for surgical treatment of primary hyperparathyroid disease. Meet the PEEPS !
HIGH BLOOD CALCIUM IS BAD!
Check that your serum calcium values are ALWAYS within the tight range of normal for your age. Mature adults should generally not exceed a calcium value of 10.1 mg/dl (US)
Here is a link to a page that offers a hypercalciumia calculator to find the upper limit of blood calcium for your age.
It is not at all unusual for a patient to go undiagnosed for many years. General physicians are often not knowledgeable about primary hyperparathyroid disease – the symptoms or diagnostic process. High blood calcium is bad!
THE BIG PROBLEM: Labs do not always correct blood calcium for a person’s age. Normal ranges for serum calcium are age-dependent. Yet labs will often give a normal range for “all humans” and that normal range may go up to 10.5 or even 10.7 mg/dl. This results in mature adults with serum calcium values over 10.1 being reported as “normal” which often delays diagnosis. According to experts, those whose calcium values fluctuate and/or exceed the upper limit for their age, should be evaluated for primary hyperparathyroid disease.
Note: Canada and Europe
Your calcium levels are reported in mmole/L, not mg/dl like in the US.
- To convert: Calcium level in mg/dl multiplied by 0.2495 = mmol/L.
- To convert the other way around: Calcium in mmole/L divided by 0.2495 = mg/dl.
Thus, a calcium level of 10.1 mg/dl =2.52 mmole/L and a calcium of 11.0 mg/dl = 2.75 mmole/L.
(Referenced from parathyroid.com)
THE “WAIT AND SEE” MODEL OF CARE – If patients with primary hyperparathyroid disease are referred to an endocrinologist, there are often delays in being referred for surgery. Many endocrinologists believe in the “wait and see” model of care when calcium levels are just slightly elevated, for those who they believe are asymptomatic or have what is perceived as a “mild” case. Others require a positive scan in order to refer the patient to a surgeon. This “wait and see” model of care that many doctors ascribe to can lead to many serious health problems including severe osteoporosis, kidney stones, mental health problems and heart attacks.
Parathyroid experts have learned, based on patient data, that how high calcium happens to be is a very poor indicator of the severity of primary hyperparathyroidism. Apparently a blood calcium of 11.5 is not any more dangerous than a blood calcium of 10.5.
Learn more about shortened life expectancy from the American Association of Endocrine Surgeons here.
MISDIAGNOSED AS SECONDARY HYPERPARATHYROID DISEASE – Then there are patients who have primary hyperparathyroid disease but instead are misdiagnosed as having secondary hyperparathyroid disease, a condition where too much parathyroid activity is caused by something other than an adenoma. Learn more here.
Needless suffering occurs as a result, as surgery is the only cure for primary hyperparathyroid disease.
OUR CURE – For us, a minimally invasive surgery lasting between 17-21 minutes where all four parathyroid glands are checked, was the solution. The procedure was performed by expert surgeons who have an intricate understanding of the neck’s anatomy which enables them to find the adenoma(s) WITHOUT exploring . Thus it is important to note that the radio-guided probe was not used to find the adenomas. It was used only to measure parathyroid hormone output of both the adenoma and biopsies of the other (generally three) remaining parathyroid glands.
As patients who have been affected by this disease, we are working to educate the public so that..
- Patients as well as medical and mental healthcare professionals understand the symptoms and biochemical presentations of the disease so that diagnosis is timely.
- Medical professionals understand that the “wait and see” model of care is inadequate and leads to more serious health issues. Hyperparthyroid disease is a silent killer.
- Patients understand that currently surgical techniques vary dramatically. Change is needed to ensure the most advanced techniques are the standard of care.
View our full Mission/Vision
HOW YOU CAN HELP …
Like the Parathyroid Peeps Facebook page! A simple way to stay informed.
Serve as an authentic patient voice with us on Inspire. Parathyroidpeeps.inspire.com Learn more about Inspire here.
Learn more about our vision and mission and contact us if you would like to help.
Inquire about how to become a guest contributor to our Para-blog.
Schedule us to speak at your next meeting /event.