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Primary Hyperparathyroidism in my own words;..

Writer's picture: Sallie PowellSallie Powell

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

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Books published by Sallie Powell
A Normal Christmas - Lighthearted HyperPARAthyroid adaptation of 'A Christmas Carol'

Written in 2020 after seeing many operations cancelled due to the pandemic. The aim was to try to get across a very serious message to clinicians, using a well known Christmas story with an important lesson to learn, to raise awareness of surgery benefits for patients with normocalcemic primary hyperparathyroidism, a very common endocrine disease which is sadly still under recognised and under treated in the UK. The main character in A Normal Christmas, is a very kind parathyroid surgeon about to experience a very different Christmas Eve after a very different 2020.


There are of course, three Ghosts of Christmas Past, Present and Future, very unlike those in other adaptations of A Christmas Carol, as well as a lovely dog named Bella (RIP my darling girl). A fictional story based very loosely on true stories. I've included medical studies in Chapter Six to show how normocalcemic PHPT isn't fictional at all, but has been written about since 1969.

If your clinician doesn't believe in Normocalcemic Primary Hyperparathyroidism, maybe buy them a copy of this book for Christmas.

 

'A Normal Christmas' has a happy ending. That's all hyperparathyroid patients are looking for, our happy ending. 
 

True case stories are included at the end of the book. Available from Amazon on paperback or Kindle (£5.99/£3.99) 
 

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It's Not All About the Levels - Normocalcaemic Primary HyperPARAthyroidism

The astonishing medical mystery surrounding Normocalcaemic Primary Hyperparathyroidism (NCPHPT) is that many clinicians claim it is controversial, or it doesn’t exist and/or doesn’t need surgery (parathyroidectomy -the only cure) which is offered to hypercalcaemic PHPT patients. The reason they cite is 'Normocalcaemic PHPT can’t cause symptoms.’ which is nonsense (known as Medical Gaslighting).  NCPHPT patients are often refused PTH blood tests, scans and referrals to surgeons, by doctors, based on 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 patients, putting them at risk of serious harm, including cardiac events including sudden cardiac death, (linked to elevated PTH). If patients can learn about Primary Hyperparathyroidism, why can’t clinicians? I've included 60 case stories including my own and many reasons for serum calcium levels being reduced, which does not exclude Primary Hyperparathyroidism. Reasons which have escaped clinicians until now. I hope if they read this book, they will say to themselves, oh crikey, how did we not know that?...The time to change is NOW.

 

It's Not All About the Levels: Normocalcaemic Primary HyperPARAthyroidism (NCPHPT): Amazon.co.uk: Powell, Sallie: 9798357345424: Books

Available only on paperback currently at Amazon, but hoping to be available on Kindle by in 2025. (delayed by an unfortunate diagnosis of BC - SJP)

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One Hundred Letters

Over one hundred letters were sent by our group members on 15th March 2021, to Sir Simon Stevens, CEO of NHS England. The heartfelt letters described years of misdiagnosis, the pointless and cruel 'Watch and Wait' regime upheld by many endocrinologists, and the battle many of us face to be heard by doctors who seem determined to find any other reason for our symptoms, rather than primary hyperparathyroidism. The only reason we can see for this barbaric practice, is ignorance, but how can so many clinicians still be completely ignorant about this disease, when patients can learn the complexities of PHPT (because they are left with no choice, in order to educate their doctors). 

 

We wrote asking them to take our health seriously and to help us to get a timely diagnosis of hyperparathyroidism and surgery.  We asked them to instigate a review of the disappointing NICE guidelines NG132. We also sent letters to Professor Amanda Howe, at RCGP, and I sent copies to the CEO s of Wales and Scotland, and the Minsters for Health in Ireland and Northern Ireland.  Robin Swann sent a very gracious response. Wales sent a very quick response saying there isn't a problem with diagnosis and how easy it is... Which is the opposite of feedback from members in Wales.

NHS England and RCGP responses, one from a representative at RCGP, and two from Jan, a case officer for NHS England (one to London and one to Australia) were dismissive, disinterested and frankly an insult, considering the nature of the letters, and the effort put into writing them (in vain) hoping someone at the top of the NHS might give a damn about the poor treatment and neglect of patients.  I felt the letters deserved to be read, so I published them. One Hundred Letters is available on kindle or paperback at Amazon: 

One Hundred Letters by Sallie Powell and members of Hyperparathyroid UK Action4Change, is available on kindle or paperback from Amazon. Follow the link below or scan the code. https://www.amazon.co.uk/One-Hundred-Letters-Hyperparathyroidism-professionals/dp/B094T5SJ6S/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=

 

If you read these letters, a review would be very much appreciated.  Thank you.

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