Checks if you have primary hyperparathyroidism
In primary hyperparathyroidism, one or more parathyroid glands in the neck make too much parathyroid hormone, which raises the calcium level in the blood. MedlinePlus says it typically occurs between ages 40 and 65, affects more women than men, and is often found when a blood test done for another reason shows a high calcium level. (MedlinePlus) This page covers the follow-up checks guidance lists for adults with mild primary hyperparathyroidism who are being watched, not treatment.
The main guidance
In the UK, NICE published guideline NG132 on diagnosis, assessment and initial management in May 2019, including a monitoring table. (NICE NG132, 2019) An international group of over 50 experts published the Fifth International Workshop guidelines in 2022, which revised the kidney criteria from the last workshop. (Fifth International Workshop, 2022 (abstract)) The Workshop details on this page come from an open-access summary published in Reumatologia in 2023. (Workshop summary, Reumatologia 2023) The American Association of Endocrine Surgeons (AAES) published guidelines in 2016. (AAES, 2016 (abstract))
Checks when it is first found
NICE says that for people with a confirmed diagnosis, the doctor should assess symptoms and other conditions, measure eGFR or serum creatinine, do a DXA scan of the lumbar spine, distal radius and hip, and do an ultrasound scan of the kidneys and urinary tract. It also says to measure vitamin D, and to measure urine calcium to tell primary hyperparathyroidism apart from familial hypocalciuric hypercalcaemia, an inherited condition. (NICE NG132, 2019) The Workshop summary lists blood calcium adjusted for albumin, phosphorus, parathyroid hormone, 25-hydroxyvitamin D and creatinine; DXA at the lumbar spine, hip and distal one-third radius; spine X-rays or a vertebral fracture assessment on a DXA scanner; creatinine clearance or eGFR; 24-hour urine calcium; and kidney imaging for stones or calcium deposits (X-ray, ultrasound or CT). (Workshop summary, Reumatologia 2023) The AAES says the first evaluation should include vitamin D, 24-hour urine calcium and a DXA scan. (AAES, 2016 (abstract))
Follow-up checks the guidance lists
| Check | How often | Source |
|---|---|---|
| Albumin-adjusted blood calcium | Once a year (NICE); at least once a year (Workshop) | (NICE NG132, 2019)(Workshop summary, Reumatologia 2023) |
| Kidney function: eGFR or creatinine (NICE); creatinine with eGFR, or preferably creatinine clearance (Workshop) | Once a year (NICE); at least once a year (Workshop) | (NICE NG132, 2019)(Workshop summary, Reumatologia 2023) |
| Vitamin D (25-hydroxyvitamin D) | At least once a year (Workshop) | (Workshop summary, Reumatologia 2023) |
| Bone density (DXA) at lumbar spine, hip and forearm | Consider at diagnosis and every 2 to 3 years (NICE); every 1 or 2 years on the same machine (Workshop) | (NICE NG132, 2019)(Workshop summary, Reumatologia 2023) |
| Kidney and urinary tract ultrasound | At diagnosis and if a kidney stone is suspected (NICE); no routine repeat imaging unless there is a clinical reason (Workshop) | (NICE NG132, 2019)(Workshop summary, Reumatologia 2023) |
| 24-hour urine calcium, spine X-ray or vertebral fracture assessment | No routine repeat unless there is a clinical reason (Workshop) | (Workshop summary, Reumatologia 2023) |
| Heart disease risk and fracture risk | Assess for everyone with primary hyperparathyroidism (NICE) | (NICE NG132, 2019) |
Calcium, kidney and vitamin D tests
For people who have not had parathyroid surgery, NICE says to measure albumin-adjusted calcium and eGFR or serum creatinine once a year. (NICE NG132, 2019) The Workshop summary says monitoring includes at least yearly calcium, 25-hydroxyvitamin D and creatinine with eGFR, or preferably a creatinine clearance measurement, and that parathyroid hormone results say less about how severe the condition is but are reasonable when there is a clinical reason. (Workshop summary, Reumatologia 2023) MedlinePlus explains that a calcium blood test is often part of a basic or comprehensive metabolic panel. (MedlinePlus lab tests) See metabolic panel results, kidney test results and who needs a vitamin D test.
Bone density
The Workshop summary says bone density is lowered even in mild primary hyperparathyroidism, most at the forearm (the distal one-third radius) and least at the lumbar spine, which is why all three sites are measured. (Workshop summary, Reumatologia 2023) NICE says to consider a DXA scan at diagnosis and every 2 to 3 years, and, for people with osteoporosis, to seek a specialist opinion on monitoring. (NICE NG132, 2019) See how often to have a bone density test and bone density test results.
Kidney stones
NICE says to offer an ultrasound of the kidneys and urinary tract at diagnosis, when a person presents, and if a kidney stone is suspected, and, for people who have kidney stones, to seek a specialist opinion on monitoring. (NICE NG132, 2019) The Workshop summary lists kidney imaging at the first evaluation, with CT as the most accurate test, and says there is no need for routine repeat abdominal ultrasound, CT or X-ray unless there is a clinical reason. (Workshop summary, Reumatologia 2023)
When guidance says to refer or think again
NICE says to refer people with confirmed primary hyperparathyroidism to a parathyroid surgeon if they have symptoms of high calcium (such as thirst, passing urine often or constipation), kidney stones, fragility fractures or osteoporosis, or an albumin-adjusted calcium of 2.85 mmol/litre or above, and to consider referral even without these. It says that if monitoring results raise concerns, the referral recommendation applies. (NICE NG132, 2019) The Workshop summary lists these results for people without symptoms: calcium more than 0.25 mmol/litre (1 mg/dl) above the upper limit of normal; a spine fracture on imaging or a T-score of minus 2.5 or lower at the spine, hip or forearm; creatinine clearance or eGFR below 60 ml/min, kidney stones or calcium deposits in the kidney, or high urine calcium; or age under 50. It says people being watched should be reassessed if calcium rises, a fracture happens without injury, bone density falls to that level, a kidney stone appears or kidney function falls. (Workshop summary, Reumatologia 2023) NICE says women who are pregnant should have monitoring advice from a specialist centre team. (NICE NG132, 2019)
Genetic testing when young or in families
The Workshop summary says more than 10 percent of cases are genetic, that people with inherited forms are generally younger, and that genetic testing should be considered for people under 30, people with more than one affected parathyroid gland and people with a family history of high calcium or a syndrome linked to primary hyperparathyroidism. It says confirming a gene change allows early identification of family members who may or may not be at risk. (Workshop summary, Reumatologia 2023) MedlinePlus names multiple endocrine neoplasia type 1 (MEN1) as one of these syndromes. (MedlinePlus) The AAES says familial primary hyperparathyroidism needs special consideration and expertise. (AAES, 2016 (abstract)) See screenings for people with multiple endocrine neoplasia.
Routine age-based screening
These checks are added to, not instead of, the routine screenings for your age and sex; see screenings by age and gender and preventive screenings for older adults. NICE says to assess heart disease risk and fracture risk for everyone with primary hyperparathyroidism in line with its general guidelines. (NICE NG132, 2019)
Where they differ:
- How often for bone density. NICE says consider DXA at diagnosis and every 2 to 3 years; the Workshop summary says every 1 or 2 years. (NICE NG132, 2019)(Workshop summary, Reumatologia 2023)
- Yearly vitamin D. The Workshop summary lists vitamin D in the yearly blood tests; the NICE monitoring table lists calcium and kidney function only, with vitamin D measured at diagnosis. (NICE NG132, 2019)(Workshop summary, Reumatologia 2023)
- First checks. The Workshop summary and the AAES list 24-hour urine calcium at the start; NICE uses a urine calcium test to rule out familial hypocalciuric hypercalcaemia and accepts a 24-hour test or a random urine ratio. The Workshop summary also lists spine X-rays or a vertebral fracture assessment, which the NICE first checks do not include. (Workshop summary, Reumatologia 2023)(AAES, 2016 (abstract))(NICE NG132, 2019)
- Calcium level for referral. NICE uses an albumin-adjusted calcium of 2.85 mmol/litre or above; the Workshop summary uses more than 0.25 mmol/litre above the upper limit of normal, and also lists age under 50, which NICE does not. (NICE NG132, 2019)(Workshop summary, Reumatologia 2023)
- Genetic testing. The Workshop summary lists who should be considered for genetic testing; the NICE recommendations do not set out a genetic testing list. (Workshop summary, Reumatologia 2023)(NICE NG132, 2019)
Your doctor decides what your result means for you.
Questions people ask
How is primary hyperparathyroidism usually found?
Often by chance. MedlinePlus says many people have no symptoms and the condition is often found when blood tests done for another reason show a high calcium level. (MedlinePlus)
How often are blood tests repeated if I am being watched?
NICE says to measure albumin-adjusted calcium and kidney function (eGFR or creatinine) once a year. The Fifth International Workshop guidelines, as summarized in an open-access review, list at least yearly calcium, vitamin D (25-hydroxyvitamin D) and creatinine with eGFR or, preferably, creatinine clearance. (NICE NG132, 2019) (Workshop summary, Reumatologia 2023)
How often is a bone density scan done?
NICE says to consider a DXA scan at diagnosis and every 2 to 3 years. The Fifth International Workshop guidelines, as summarized in an open-access review, say every 1 or 2 years at the lumbar spine, hip and distal one-third radius, using the same DXA machine. (NICE NG132, 2019) (Workshop summary, Reumatologia 2023)
Is a kidney scan repeated every year?
No. NICE says to offer a renal tract ultrasound at diagnosis and if a kidney stone is suspected. The Workshop summary says there is no need for routine repeat abdominal ultrasound, CT or X-ray unless there is a clinical reason. (NICE NG132, 2019) (Workshop summary, Reumatologia 2023)
Who should think about genetic testing?
The Fifth International Workshop guidelines, as summarized in an open-access review, say genetic testing should be considered for people under 30, people with more than one affected parathyroid gland and people with a family history of high calcium or a related syndrome. (Workshop summary, Reumatologia 2023)
Related
- Kidney stone found by chance: follow-up
- Adrenal mass found by chance: follow-up tests
- Metabolic panel results
- Kidney test results
- Who needs a vitamin D test
- How often to have a bone density test
- Bone density test results
- Screenings for people with multiple endocrine neoplasia
- Checks if you have MGUS
- Screenings by age and gender
- Questions to ask your doctor