It's Not All About the Levels: Normocalcaemic Primary HyperPARAthyroidism (NCPHPT)

By Sallie Powell

The astonishing medical mystery surrounding normocalcaemic primary hyperparathyroidism (NCPHPT) is that many clinicians claim not only is it controversial, but it doesn''t exist and doesn''t need surgery; a parathyroidectomy ( the only cure ) which is offered to hypercalcaemic PHPT patients. The reason given is ''because ''NCPHPT can''t cause symptoms'' which is nonsense (known as Medical Gaslighting). Example: Two patients; each with a parathyroid adenoma (benign tumour) in their neck making them extremely unwell. They both have osteoporosis. They are the same age. One is offered surgery with calcium over 2.8mmol/L. The other is told they will be reviewed yearly, because their calcium isn''t high enough. NCPHPT is still PHPT; but with calcium levels often found within the normal population reference range and a corresponding inappropriate PTH level. Calcium levels DO NOT determine the severity of symptoms in primary hyperparathyroidism The ''Watch and Wait'' approach forced on many symptomatic patients because their calcium levels are not high enough, can cause them serious harm.. Untreated PHPT of any classification can cause a myriad of debilitating symptoms such as bone pain, kidney stones, osteoporosis, cardiac disease, cognition malfunction, muscular pain, anxiety, and depression, yet patients are often described as asymptomatic unless they present with end organ damage. Many are made to suffer and wait until they do have end organ damage. I''m sure if any of the guideline creators or dismissive doctors became unlucky enough to find themselves with primary hyperparathyroidism, they would not choose to ''watch and wait'' until their calcium levels exceeded 2.85mmol/L, and they certainly wouldn''t consider themselves asymptomatic as they cry out in pain trying to walk, attempt stairs, both up and down, try to stand after sitting in a chair, or try to sleep at night on bones that cause terrible pain (and so much more). Often, patients are left to suffer many years, even multiple decades, refused referrals for scans and surgery by doctors who tell them their levels aren''t high enough to be causing their symptoms or to warrant surgery. Those doctors are mistaken. Whether they are basing their beliefs on NICE guidelines (NG132) published 23 May 2019, or their own personal misguided understanding, most doctors are relaying misinformation to their patients which puts them at risk of harm. If patients can learn about Primary Hyperparathyroidism, why can''t clinicians? The underlying message to the majority of normocalcaemic hyperparathyroid patients from their clinicians is, ''Your opinion is irrelevant, you''re symptoms are not important, you don''t matter to us, we don''t care how much you think you''ve learnt, how much you hurt, and your quality of life is of no concern to us'' Imagine crying to doctors about agonising bone and muscle pain, inability to work, sleep, walk, drive, or even wash; kidney stones, stents, sepsis, fearing dementia and death, to be told: ''There is a cure, but your calcium isn''t high enough yet, let''s review you annually.'' This is the reality for many hyperparathyroid patients, especially normocalcaemic hyperparathyroid patients and patients with calcium below 2.85mmol/L. This book is for anyone who suspects they have hyperparathyroidism who has been told '' your levels are not high enough to cause your symptoms'' ; anyone suffering symptoms who have been denied a PTH blood test because calcium falls within the normal range, any symptomatic people refused investigation for PHPT who may be taking calcium lowering medication, or have other conditions which may reduce serum calcium, but not exclude PHPT. It is also for clinicians to learn the truth about NCPHPT and to modernise treatment plans, and for hospital labs who refuse to test PTH with normal calcium.

• Format: Paperback
• Language: English
• ISBN: B0BHLH1BRF
• ISBN13: 9798357345424
• Release Date: October 2022
• Publisher: Independently published
• Length: 471 Pages
• Weight: 1.74 lbs.
• Dimensions: 9.0" x 1.1" x 6.0"