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Hyperparathyroidism and Cardiovascular Disease.

  • Writer: Sallie Powell
    Sallie Powell
  • Sep 30, 2023
  • 3 min read

Updated: Oct 1, 2023

It is likely you've been told by doctors there is no connection... Think Again.

If any doctor thinks sick patients enjoy having to research their condition, they should try to understand that many of us feel we have no option if we are to survive it. Faced with a clinician we rely on to help us, who isn't up to date, is very daunting. Many hyperparathyroid patients understand what 'fighting for my life' implies. Fight or flight is 'an instinctive physiological response to a threatening situation which readies one to resist forcibly or run away.' We hear from many more patients who had to fight for their life compared to those who tell us diagnosis was a straight forward procedure.


One example is when a patient is told that hyperparathyroidism doesn't cause cardiac disease. Oh dear, that is so untrue. Please read the following reviews or do your own research to catch up with us;


The Parathyroid Gland and Heart Disease (2017). 'This review evaluates current studies and relationships between parathyroid disease and the cardiovascular system and highlights the important implications for mortality and morbidity stemming from these disorders'; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5512678/?fbclid=IwAR37-JHVZRIrKElLeADWf9TVRLJNygcYRY1xJp3yneZPRR78I9cL7hXu9Hg


You may have seen my posts about the recent increase in the upper PTH range, which started off in Oxford and Birmingham, and is slowly spreading to other NHS Trusts...


Many patients are aware that the NHS often refuses to test PTH if calcium isn't elevated, to save £8 per person (according to 2019 costings in NG132). I was informed by a biochemist in Oxford that the increase of upper PTH range was 'because healthy people were found to have a PTH of 12pmol/L.'

How healthy were their hearts? How many of them are consequently heading unknowingly to a final destination?

Have a read of this;

PTH: A New Target in Arteriosclerosis? 'Growing evidence demonstrates that hyperparathyroidism is associated with an increased risk of cardiovascular morbidity and mortality.'

'The presence of serum PTH levels within the upper normal range is highly related to CVD. This association may partly be explained by calcifications of the abdominal aorta. Because CVD poses an important health risk, further elucidation of the role of serum PTH in CVD and arteriosclerosis is relevant'; https://academic.oup.com/jcem/article/98/10/E1583/2833385... I posted that in our support group last week. A member pointed out it was quite dated from 2013, and asked if there were any more recent studies. I thought, 'it's been known about for a decade?' I went on to find these;


2018: Association between Serum Parathyroid Hormone Levels and the Prevalence of Atrial Fibrillation: the Dong-gu Study

'Conclusions; Higher levels of serum PTH were associated with higher prevalence of AF. Further studies are needed to determine whether this association is present in other populations and in a prospective study setting.'


2019; Serum parathyroid hormone levels in patients with chronic right heart failure. https://www.spandidos-publications.com/10.3892/br.2019.1262?fbclid=IwAR2R6xYV2zvXGB8ezhXJdhtB3AXsUMHP1SSJg-bK8Z2lEYRsB91dXC5ZSpo;

https://doi.org/10.3892/br.2019.126

'Parathyroid hormone (PTH) is a novel cardiovascular biomarker which is particularly useful for detection and assessment of heart failure (HF).''There an increasing number of studies demonstrating that PTH serves an important role in the development and progression of cardiovascular diseases, particularly in HF. PTH can independently predict the incidence of non-ischemic and whole HF, improve the risk stratification of patients with HF and assist in the determination of the optimal hospitalization time for outpatients with HF. It may also be used to guide individualized treatment of HF.' 'The present study serves as a preliminary analysis of the relationship between PTH levels and clinical indices of right HF. The conclusions made within, provide a starting point for future research, which should include determination of the role and underlying mechanisms of serum PTH levels in right HF.' 'In conclusion, the serum PTH levels are correlated with right HF, and thus may be used for the clinical assessment of right heart function.'


I'm currently processing data regarding primary hyperparathyroidism, hypercalcaemia, heart attacks and strokes, across NHS Trusts from 2019-2022. The numbers I've seen so far, are quite horrific. I know there will have been great numbers of patients with normocalcaemic PHPT undetected or dismissed, so it is very unlikely PTH will have been recorded in the vast numbers of heart attacks and Ischaemic strokes recorded.

In the meantime in Turkey:

2020; The Association Between Hyperparathyroidism and Ischemic Stroke Subtypes https://www.neurores.org/index.php/neurores/article/view/564/526?fbclid=IwAR1iREqjCVWrsUBJohDkD5Y9TO2bIXeixcdscdn10NWl-y9CVDv9kSyOtoI doi: https://doi.org/10.14740/jnr564

'Conclusions: We have found a high rate of hyperparathyroidism in our group of patients with ischemic stroke. Remarkably, the elevation of PTH was found to be significantly associated with the ischemic stroke subtype of extracranial atherosclerosis. Clarification of these results in the future large-scale studies may provide crucial perspectives regarding our understanding of the pathophysiology of some subtypes of ischemic stroke and potentially lead to a large public health implication in this area.'


I hope some doctors will find this information very helpful...





 
 
 

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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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