Sallie Powell

Hoards of #hyperparathyroid patients are outside several NHS Trust Hospitals. #Endocrinologists are leaning out of the windows shouting, 'Our MDT panels want you to go away and not come back until your calcium exceeds 2.85mmol/L...'

A lady had a #parathyroid adenoma removed this week, described as the size of a golf ball, by her surgeon Neil Patel in Cardiff. Pre op calcium 2.69mmol/L Pre op PTH 14.9 CT scan was negative. Post op calcium 2.34 Post op PTH 4 What a great result for her. Many people with calcium below 2.85mmol/L, are refused referals to surgeons. Many patients with negative scans are refused surgery. Yet another example that Primary #Hyperparathyroidism is not all about excessively high levels of calcium. Many clinicians would have told her, 'Oh, but your calcium isn't THAT high...

Once upon a time in #Parathyroid Land, patients felt like they'd entered The Magic Roundabout, a world where doctors kept telling them their calcium had to reach the magic number 2.85 in order for them to be saved. Patients knew that made up figure was an evil spell concocted to keep them sick, or to pay surgeons lots of money to save them from primary #hyperparathyroidism and to escape the #NHS. They saw other people get their lives back with calcium much lower, and knew they needed to escape the doctors mesmerised by the magic number or private care. Florence and her friends tried to get the magic number banished for all the people in the land who couldn't afford to pay. In some areas of the land (UK) they were successful, but still the evil number exists in national guidelines, and for many unfortunate #PHPT patients, round and round they go... @RCGP @BAETS_UK @ESEndocrinology @Soc_Endo @ptsafetyNHS @NHSEngland @NICEGetInvolved

Some spooky but true facts about Primary Hyperparathyroidism this Halloween, from expert parathyroid surgeon; Dr Larian! facebook.com/share/r/1A3LN5o…

A lady diagnosed with primary #hyperparathyroidism asked us what she should do because her scans looking for #parathyroid adenomas have all been negative so the surgeon is not keen to operate. He told her, 'Calcium 2.78 isn't that high anyway, wont be causing your symptoms, osteopenia is probably caused by the menopause, and the marker for surgery is 2.85...' Like many other doctors and consultants he likely doesn't even know that 2.85 is a made up number. Professor Fausto Palazzo, a very high volume surgeon at Hammersmith Hospital, has been doing well over 100 parathyroid ops per year for over ten years, was the surgeon on the executive committee for NICE guidelines NG132, which absurdly quotes that imagined figure pulling the wool over the eyes of many clinicians, said to me very recently: 'For the avoidance of doubt, it is not necessary for pHPT patients to have a corrected calcium of 2.85mmol/L or more to have parathyroid surgery. The NICE guidelines state clearly that parathyroid surgery should be considered in all patients with pHPT irrespective of the biochemistry.' I advised the lady to quote FP. I'm sure he won't mind. Our advice to her is to request a referral to Liverpool or Newcastle (based on her location) who won't refuse parathyroid surgery based on negative scans, or a number pulled from a hat. All requests to @NICEGetInvolved to remove the damaging 2.85 and recommendation 1.3.1 from NG132 have been ignored. That recommendation has been ruining peoples lives for 8 years... We don't expect a full review, just delete 1.3.1, replace it with 1.3.2 The statement below the title: 'What NICE does' is completely contradicted by the figure 2.85.

Primary #Hyperparathyrodism When doctors spend years looking at random puzzle pieces and wonder why they can't see the full picture. Misdiagnosis after misdiagnosis...

Our members are writing to @Soc_Endo this week. Primary #hyperparathyroid (PHPT) patients are bewildered by many endocrinologists whose lack of appropriate understanding of their common #endocrine condition leads to serious harm and untenable treatment delays. In ten years since I last wrote to them, we've seen little improvement. My letter includes: 'A recent survey in our support group showed only 33% of patients had positive experiences. The remainder reported that their consultants were not following guidance from international endocrine workshops or NICE guidelines NG132. Patients feel that these failings are a reflection upon your society, as the national voice for endocrinology across the entire United Kingdom. I would like to ask if you will accept some accountability and take action to halt the preventable harm caused to patients, due to consequences of untreated PHPT. Whilst we strongly oppose recommendation 5.1.4, in the summary statement from the Fifth International Endocrine Workshop (stating patients should be under 50), we agree with: 5.1.1: Serum calcium >1mg/dl (0.25mmol/L) above the upper limit of normal. 5.2: Surgery should be performed by an experienced parathyroid surgeon. Normocalcemic PHPT (mentioned 21 times in the report from the Fifth International Workshop 2022), doesn’t even deserve consideration in the opinion of many endocrinologists, whether patients have bone and/or kidney disease or not. To refuse help to patients with hypercalcemia below 2.85 is completely beyond our comprehension. If you can help patients to overcome this widespread lack of due diligence in attending to responsibilities, and far reaching misguided opinions, by revalidatating endocrinology consultants, it would be massively appreciated. This ongoing issue is especially confusing when the opening statement to section 5 reads: ‘In patients with asymptomatic PHPT, we recommend surgery to cure the disease (strong recommendation/high quality evidence).’ Yet here we are in 2026, contacted by hundreds of women, refused referral to surgeons with calcium below 2.85mmol/L, or even refused appointments with endocrinologists if calcium is below that level. University Hospitals of Derby and Burton @UHDBTrust even display on their hospital website that patients with calcium <2.85 can be monitored annually in primary care. The ‘watch and wait’ saga enforced by endocrinologists throughout the UK not only exasperates patients, but creates fear, with many forced to escape the clutches of NHS endocrinology by self-funding surgery privately, out of desperation. But those who can’t source the finances to pay are left to suffer. The NICE guideline NG132 published 19 May 2019 has two recommendations for referral to surgery: 1.3.1 & 1.3.2. It is obvious many endocrinologists ignore recommendations from 5.1.1 in the Fifth International Workshop, and 1.3.2 in NICE guideline 132, and wilfully keep ‘2.85’ at the forefront of their minds when faced with PHPT patients. Please can you intervene as soon as possible to find a way to ensure all UK endocrinologists are offering patients valid care rather than current invalid, misappropriate care as experienced by many patients? I am sure they would likely listen to you. I am the founding member of Hyperparathyroid UK, established in September 2014. I endured PHPT for 21 years. I was only cured after my second parathyroidectomy in 2021. I was under a ‘watch & wait’ endocrinologist for 9 years with normocalcemic PHPT. The Fifth International Endocrine Workshop stated in 5.3: Surgery cannot be recommended to improve neurocognitive function, quality of life, and/or cardiovascular indices because the evidence is inconclusive. If you would like to gather evidence about those consequences of PHPT, we would be happy to work with you. We currently have over 5,500 members. I can recommend a publication in The Lancet, August 2025, about CVD and QOL associated with PHPT: thelancet.com/journals/lance…'