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

Powell, Sallie

Couverture souple

ISBN 13 : 9798357345424

Editeur : Independently published, 2022

Synopsis

The astonishing medical mystery surrounding Normocalcaemic Primary Hyperparathyroidism (NCPHPT) is that many clinicians not only claim it is controversial, but it doesn’t exist and/or doesn’t need surgery; a parathyroidectomy (the only cure) which is offered to hypercalcaemic PHPT patients. The reason given is ‘because 'Normocalcaemic PHPT can’t cause symptoms’ which is nonsense (known as Medical Gaslighting).

Example:
Two patients; each with a parathyroid adenoma (benign tumour) making them extremely unwell. They both have osteoporosis. They are the same age. One is offered surgery with calcium over 2.84mmol/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 within the normal population reference range with an inappropriate corresponding 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 serious harm. Untreated PHPT of any classification can cause a myriad of debilitating symptoms such as bone pain, joint pain, kidney stones, osteoporosis, cardiac disease, cognitive impairment, muscular pain, anxiety, and depression, yet patients are often described as asymptomatic unless they present with end organ damage. They are left to suffer the consequences of end organ damage for years, even decades. 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 exceed 2.84mmol/L, and they certainly wouldn’t consider themselves asymptomatic as they cry out in pain trying to walk, attempt stairs, sit or stand, or try to sleep at night on bones that cause terrible pain (and so much more).

NCPHPT patients are often refused PTH blood tests (or PTH is incorrectly tested), scans and referrals to surgeons, by doctors, based on their calcium levels alone. Those doctors are mistaken. Whether basing their beliefs on NICE guidelines (NG132) published 23 May 2019, or their own personal misguided understanding of NCPHPT, most doctors are relaying misinformation to their patients which puts them at risk of serious harm, including cardiac events and Sudden Cardiac Death, (linked to elevated PTH). 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 think, talk, 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 primary hyperparathyroidism who has been told ‘your levels are not high enough to cause your symptoms’; anyone suffering symptoms who has 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 medications, 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 their treatment plans, and for hospital labs who refuse to test PTH with normal calcium.

Détails de l'édition

• Éditeur: Independently published
• Date d'édition: 2022
• Langue: anglais
• ISBN 13: 9798357345424
• Reliure: Broché
• Nombre de pages: 471
• Coordonnées du fabricant: Manufactured by Amazon on behalf of the author; https://www.amazon.fr/hz/contact-us; ; c/o Amazon Media EU S.à.r.l., 38 Avenue John F. Kennedy; Luxembourg; L-1855; Luxembourg