Avoid The Pitfalls That Delay Diagnosis & Treatment of Primary Hyperparathyroid Disease is a series of blogs that shed light on the most common issues patients face that delay diagnosis and surgical treatment.
#5. Classic symptoms are often treated by specialists who do not necessarily consider primary hyperparathyroid disease as a possible root cause.
Some of the symptoms patients report are more generalized, and can be attributed to any number of health issues. However, there are several classic symptoms associated with primary hyperparathyroid disease. Medical students are often taught a rhyme to recall the effects of excess blood calcium levels. It goes something like this…
“Moans, Stones, Groans and Bones”
Each word in the short rhyme references common ailments typically associated with primary hyperparathyroid disease…
Moans (gastrointestinal conditions):
- Decreased appetite
- Abdominal pain
- Peptic ulcer disease
Stones (kidney-related conditions):
- Kidney stones
- Flank pain
- Frequent urination
Groans (psychological conditions):
- Memory loss
Bones (bone pain and bone-related conditions):
- Bone aches and pain
- Curving of the spine and loss of height
As patients, we may present with some, but not necessarily all, of these symptoms over time. You are invited to read Barbara, Sophie and Joyce’s stories to learn more about the symptoms we suffered from.
Sadly, specialists who are treating some of the classic symptoms of primary hyperparathyroid disease are not necessarily well-versed in primary hyperparathyroid disease.
One might expect the specialist to have a thorough understanding of a related disease that is known to be a possible root cause of a condition they treat on a daily basis. However, for many of us, this has not been our experience.
No correlations were considered and therefore no attempts were made to discover the root cause – only symptoms were treated.
Gastroenterologists are the medical professionals who treat the “moans”. They may very easily overlook high calcium as a root cause of certain gastrointestinal issues. The story of a fellow advocate, and blogger Lora Park’s comes to mind. In her story she highlights the challenging gastrointestinal issues she faced and laments that she suffered for years without a diagnosis …
Did it start in 1980 when i started getting ‘fainty’ if i didn’t eat every 3 hours? Was it in 1987 when i kept going in to the Dr. complaining that everything was making me ill and having them look at me and say i was young and ‘perfect’ and it COULD be just nervous stomach, anxiety… or was it one of the numerous mysterious trips to ER with vomiting and cramping and being told my appendix needed to come out “STAT” only to find out a few minutes later that everything was ‘fine’.
Eventually, it was an astute RN who alerted Lora to the fact that she had an elevated calcium value.
Urologists are the ones to treat patients who are suffering from kidney stones. Though there are a variety of reasons people get stones, primary hyperparathyroid disease is one root cause. While we are asked to catch our stones to determine the type, it may end there. It would seem prudent to rule out whether the person has primary hyperparathyroid disease by doing a thorough diagnostic workup.
Psychologists will likely see patients who present with the “groans”. Patients report having episodes of severe anxiety, depression and/or brain fog. While many of these professionals are now well-versed in understanding the psychological symptoms often associated with thyroid conditions, more education is needed to raise awareness among mental healthcare professionals so they are able to do the same for those potentially suffering from primary hyperparathyroid disease.
General Practitioners, Internists, Rheumatologists, Endocrinologists treat diseases of the bone. Many PHPT sufferers report being diagnosed with osteoporosis and have shared with us that they were put on bone drugs for osteoporosis without having gone through a thorough diagnostic process. Or if they did, the physician did not necessarily understand the various biochemical presentations of primary hyperparathyroid disease and the diagnosis was overlooked. Sandi, a fellow patient advocate who suffered from osteoporosis for years shares her story in this 28 minute video and expert parathyroid surgeon Dr. Boone, an expert in parathyroid disease, summarizes some of the hurdles in this 6.5 minute video.
Others have reported that they were encouraged to take bone drugs after diagnosis as part of a “wait and see” model of care. This happened in Sophie’s case and it made no sense to her to take a medication that would not address the root cause. After doing her own research, she declined and self-referred to a parathyroid surgical center. Bone drugs will not help improve the bone health of a person if there is an underlying condition of primary hyperparathyroid disease.
Dentists may also see rapid changes/deterioration in dental health in patients who have primary hyperparathyroid . Patients would benefit from dentists being familiar with the various symptoms (deterioration of bones and teeth specifically) and biochemical presentations. Dentists could then suggest that these patients follow-up with their personal physician to determine if primary hyperparathyroid disease is possibly the underlying cause.
A glaring group of conditions treated by Cardiologists that is not addressed in the memorable rhyme, are those that effect the heart and blood vessels, including high blood pressure (hypertension), hardening of the arteries (atherosclerosis), coronary artery disease, an enlarging heart (left ventricular hypertrophy), and abnormalities in the normal electrical activity of the heart. Learn more here.
A patient may report having a fluttering, racing heart and /or it is discovered that they have high blood pressure. When the doctor cannot find anything else particularly wrong with the patient, they may put the patient on blood pressure medications. Yet elevated calcium values may not be considered and/or ignored if mildly elevated. Once diagnosed, patients have realized that their blood calcium were elevated during that time and found that their heart stopped fluttering/racing and blood pressure returned to normal following surgical removal of the diseased parathyroid gland(s).
Conclusion: We understand it is not at all unusual for patients suffering from primary hyperparathyroid disease to go undiagnosed for many years. Parathyroid experts believe the average patients goes undiagnosed at least 8 years, if not longer. Remember that it is the length of time that calcium values are elevated outside of normal range which wreaks havoc in our bodies, rather than the degree to which calcium is elevated. Thus, the condition should not be referred to as “mild” if serum blood calcium is slightly elevated. A “wait and see” approach is actually very harmful to our health. Of course, we cannot attribute the delays in diagnosis entirely to the specialists treating our symptoms. Remember that in our first blog in this series, we discussed that labs often do not report calcium values based on a persons age. However, an excellent understanding of primary hyperparathyroid disease by healthcare professionals across all specializations who treat related symptoms and conditions, would help drastically reduce the delays in diagnosis we experience as patients.
RESOURCES FOR YOU:
Hypercalcemica Calculator: Here is a link to the Norman Parathyroid Center’s hypercalcemia calculator to find the upper limit of blood calcium for your age. Note that when you enter your age in the calculator that your upper limit will appear in the paragraph below in both mg/dl (USA) or mmil/L in most other countries. See the example image below for someone who is 50 years of age.
A new way to help us remember the symptoms of Primary Hyperparathyroid Disease : See our High Calcium Is Bad symptom list.
Help Advocate – Raise Awareness – Provide & Receive Support: Learn more about our Parathyroid Peeps Community on Inspire through this link. PLEASE JOIN US ON INSPIRE
If you missed the previous blogs in the series, Avoid The Pitfalls That Delay Diagnosis & Treatment of Primary Hyperparathyroid Disease, here are links to catch up:
#1. Your doctor reports your serum blood calcium is in “normal” range . What could be the problem?
#2. Slightly elevated calcium values are ignored.
#3. A doctor does not want to confirm a diagnosis of primary hyperparathyroid disease or refer for surgery until the adenoma is visible on a scan .
#4. A patient may be incorrectly diagnosed as having secondary hyperparathyroidism when they instead have primary hyperparathyroid disease that requires surgical treatment