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National increase of PTH upper bracket throughout UK to prevent a diagnosis of Normocalcemic PHPT

  • Writer: Sallie Powell
    Sallie Powell
  • Jul 30, 2021
  • 2 min read

Just when we thought there was a chink of hope for wider recognition in the UK of Normocalcemic Primary Hyperparathyroidism upon hearing that BAETS hosted a webinar on NCPHPT, we found out that the astonishing rumour of the upper bracket of normal range PTH levels being raised are actually TRUE! We have yet to find out who has sanctioned this devious and highly unethical change. The outcome, of course, is that even fewer people will be diagnosed with normocalcemic primary hyperparathyroidism. Despite published studies dating back as far as 1969 stating the cardiac and skeletal risks of normocalcemic PHPT are equal to or greater than hypercalcemic PHPT patients, they will be further denied a diagnosis and parathyroidectomy. and left to suffer the often excruciating symptoms of kidney stones and shattered bones. If anybody knows who sanctioned this increase to 11.00pmol/L, please do let me know. You can read the reactions of some of our members on Twitter by following me; @SpSallie If 'they' decided to increase the upper level of blood sugar to reduce the incidences of diabetes, people would be up in arms about it. People should be up in arms about this cruel prejudiced tactic also.

Here are a few studies about the risks of normocalcemic primary hyperparathyroidism; 'Parathyroidectomy improves cardiovascular risk factors in normocalcemic and hypercalcemic primary hyperparathyroidism;https://bmccardiovascdisord.biomedcentral.com/articles/10.1186/s12872-019-1093-4?fbclid=IwAR3yi5CLaZE7yKREb7clDIhdaLefhjYAbEjElAALmetmUYtbgDc6u4dkl0E#citeas

'High Rate of Occult Urolithiasis in Normocalcemic Primary Hyperparathyroidism'; https://www.karger.com/Article/Abstract/502578 'Patients seen in a referral centre with normocalcemic hyperparathyroidism have more substantial skeletal involvement than is typical in PHPT and develop more features and complications over time'; https://academic.oup.com/jcem/article/92/8/3001/2597709


NCPHT is NOT a new phenotype. See this study from 1975; https://www.surgjournal.com/article/0039-6060(75)90057-4/fulltext


'In normocalcemic patients, parathyroidectomy is as safe and effective as in hypercalcemic patients'; https://link.springer.com/article/10.1007/s00423-018-1659-0


'Early intervention for this group with mild PHPT may prevent progression of bone, psychiatric, and renal complications'; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4153463/?fbclid=IwAR0U6qZLpN7UHKYkOjW7myEQ_6%20ebP37WE3uxk5C7B1Zd1n8knMZ9U5jtV9c


Ignoring the term 'mild' in the article above, we relate more to this statement; 'Since the only difference is in terms of bone resorption parameters, in most cases it seems to be an attenuated form or even similar to the classical presentation'; https://www.sciencedirect.com/science/article/abs/pii/S0002961019309390


'Parathyroidectomy improves cardiovascular risk factors in normocalcemic and hypercalcemic primary hyperparathyroidism; https://bmccardiovascdisord.biomedcentral.com/articles/10.1186/s12872-019-1093-4?fbclid=IwAR1L4FcgIJGeTSMqC0euUMPCgKGi5TS5tdT2JUBx1if4iR9VIvLiAGAjGvg#citeas


We have plenty more where they came from.


Sallie Powell


 
 
 

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1 comentário


Membro desconhecido
31 de jul. de 2021

I recall some medic explaining to me in great detail how they establish the normal ranges and the resultant bell curve. Surely they can't just increase the PTH range by 50% without doing the same work they did originally, sampling the population and establishing the percentage of people affected, obtaining their readings and then plotting them?

Curtir
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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