Primary Hyperparathyroidism in my own words;..
Primary Hyperparathyroidism (PHPT) is a complicated name for an extremely common, yet widely under recognised and misdiagnosed endocrine condition. Parathyroid glands regulate calcium in our blood in the same way a thermostat regulates temperature. When our blood calcium becomes too low, parathyroid glands stimulate the release of calcium from our bones, to bring our calcium levels up. When blood calcium becomes too high, the parathyroid glands stop stimulating the release of calcium from our bones. This perpetual motion occurs every day of our lives. If our boiler stops regulating temperature, we get it repaired. If our parathyroid glands stop regulating calcium, they need to be repaired also. Primary hyperparathyroidism occurs when one or more parathyroid glands continue to stimulate parathyroid hormone needlessly. This action causes both too much calcium in our blood, and too much calcium to be released from bones leading to osteopenia, then osteoporosis. The effects of too much calcium in our blood begins to affect all areas of the body serviced by blood. Soft tissues can become calcified. Some people will form stones in their kidneys, most people will experience joint pain, cognitive dysfunction, overwhelming fatigue, anxiety, depression, insomnia and many other symptoms listed on our website. Some people will experience heart disease leading to cardiac arrest, strokes and sudden death. Not everybody experiences the same level of symptoms, because the variance of blood calcium levels as well as the other variants like general health and fitness, diet, having other health conditions, and the length of time before treatment can impact the severity of this disease.
One of the most important messages we need to get across to doctors and endocrinologists; supposed to be experts in the field of endocrinology, whilst many are sadly lacking in their knowledge of PHPT; is that the level of calcium does not determine the severity of this disease. People who have suffered a long time with unregulated calcium may only have a marginally raised calcium level presenting with an inappropriate parathyroid hormone level, but have osteoporosis and kidney stones, whilst someone with a considerably high calcium level picked up quickly might have fewer symptoms, no kidney stones and healthier bone density. I campaigned for NICE guidelines for Primary Hyperparathyroidism with the help of members of my support group Hyperparathyroid UK Action 4 Change. We were registered stakeholders and committed many hours to public consultations, hoping they would make a difference to the diagnostic failings of our doctors. We were bitterly disappointed when we saw the draft scope, as many of our comments and the evidence we supplied were dismissed. The guideline appears to have been engineered to steer patients away from the NHS and towards private treatment with their restrictive boundaries for surgery. We are often sickened to find endocrinologists using these guidelines to deflect patients and make them wait until their calcium reaches 2.85mmol/L, they have kidney stones or osteoporosis. Many patients will suffer years of extremely debilitating health, lose their jobs, businesses, partners, families and friends, whilst they fall apart mentally and physically. Sadly some will even lose their lives. We currently have 2.200 members in our patient to patient support group. We have a medical group called HPT UK Medical where medical professionals or students can join to learn and interact with our members, and our website hyperparathyroiduk.com is for non-members to use as a learning tool. We need media attention to alert the public and the NHS to the plight of thousands who we estimate are suffering with PHPT, which their doctors have either missed or dismissed due to their misconceptions of the severity of PHPT with lower levels of calcium, or that have been misdiagnosed as having fibromyalgia. We believe from patient experience that many diagnosed with fibromyalgia might actually have primary hyperparathyroidism. It is essential they get their calcium, PTH, vitamin D and magnesium levels tested and that their doctors and hospital labs do not dismiss testing PTH in the presence of a normal calcium level. They must appreciate the severity of normocalcemic primary hyperparathyroidism (NCPHPT), its impact long term on their patients’ health, and that it should be treated in the same way as those with hypercalcaemic primary hyperparathyroidism. Surgical removal of affected parathyroid glands by an experienced parathyroid surgeon is the only cure.
Sallie Powell Founder of Hyperparathyroid UK Action 4 Change