A patient may be incorrectly diagnosed as having secondary hyperparathyroidism when they instead have primary hyperparathyroid disease that requires surgical treatment – Avoid The Pitfalls That Delay Diagnosis & Treatment

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.

#4  A patient may be incorrectly diagnosed as having secondary hyperparathyroidism when they instead have primary hyperparathyroid disease that requires surgical treatment.

Primary hyperparathyroid disease means the hyperactivity of one or more parathyroid glands is caused by the gland(s) becoming a non-cancerous adenoma. Secondary hyperparathyroidism means that a disease or issue outside of the parathyroid glands is causing the glands to become enlarged and hyperactive.

Here are some of the reasons why a person might experience secondary hyperparathyroidism:

Kidney failure requiring dialysis (GFR less than 25) 

According to American Association of Endocrine Surgeons Patient Education Site:

It is usually caused by kidney failure, a problem where the kidney is unable to clean the blood of phosphorus produced by the body and unable to make enough vitamin D (specifically calcitriol, the active form of vitamin D). The build-up of phosphorous leads to low levels of calcium in the blood, which in turn stimulates the parathyroid glands to increase parathyroid hormone (PTH) production, which in turn causes them to grow. As the disease progresses, the parathyroid glands no longer respond normally to calcium and Vitamin D.

Malabsorption Syndromes when the intestines do not absorb vitamins and minerals properly or as a result of malnutrition. This can occur as a result of:

  • Gastric Stapling
  • Gastric (stomach) bypass
  • Intestinal bypass
  • Roux-n-Y Bypass
  • Celiac Disease
  • Crohn’s Disease

Severe Vitamin D deficiency is another reason 

It is often presumed that a patient’s low Vitamin D is the reason their calcium values are high. The patient is then given the diagnosis of having secondary hyperparathyroidism and given a protocol for Vitamin D supplementation. Patients report this as a common hurdle faced when trying to get a correct diagnosis. Supplementing with Vitamin D only made their symptoms worse and further delayed surgical treatment.

While severe Vitamin D deficiency can indeed be a secondary cause, we have learned that there is a flaw in many people’s understanding of the relationship of blood calcium values to inactive Vitamin D  (Vitamin D 25-OH ) which is most commonly being measured.

A patient will actually have low inactive Vitamin D BECAUSE the calcium is high when presenting with primary hyperparathyroid disease. In a recent blog hosted on our website, Dr. Deva Boone, an expert in parathyroid disease, discussed the role of Vitamin D in relation to primary hyperparathyroid disease in great detail.

Click here to read the informative article to learn more about the conversion process of Vitamin D 25-OH inactive to Vitamin D 1,25-OH2 active, and why inactive Vitamin D is so often low when a person is suffering from primary hyperparathyroid disease.

Resource link: Norman Parathyroid Center – secondary hyperparathyroidism.

Sadly, this misunderstanding often causes delays in diagnosis even when a patient has a classic biochemical presentation –  high blood calcium, high parathyroid hormone levels and low inactive Vitamin D – which should make it exceptionally easy to make a proper diagnosis.  

Were you told that you had secondary hyperparathyroidism when in fact it was primary? Please join us in our community on Inspire to share your story.  

If you missed the previous blogs in the series Avoid The Pitfalls That Delay Diagnosis & Treatment of Primary Hyperparathyroid Disease here are the 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 .

Please remember that we are not medical professionals. Read our Terms of Use/Disclaimer. 

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