Hyperparathyroid UK
Action4Change
PHPT is NOT All About the Calcium Levels
The level of calcium does NOT determine the severity of symptoms
Hyper
Para
thyroid
UK.
Action 4
Change
The Truth about PHPT
Established 02.09.2014
UK surgeons with multiple positive reviews from our members.
NHS waiting times in most areas of the UK have become increasingly worse over the last three years. Many surgeons now operate privately. Where does that leave NHS patients? At the back of ever increasing queues, typically after crawling through a hazardous diagnosis journey via GPs and endocrinologists.
We try to help patients stuck in those endless queues, to avoid or escape them by recommending surgeons with shorter NHS waiting times, who have received multiple positive patient feedback. If PHPT patients skip endocrinologists, it will help them reach their end goal of renewed health much sooner. Surgeons are listed in order of current NHS waiting times (shortest first). NCPHPT surgeons are identified with '*'. Ask surgeons if they offer bilateral explorations, and use IoPTH, even if only one adenoma is identified by scans. Anything less is often equivalent to rolling a dice. Who wants to go through this nightmare a second time because the surgeon didn't look at all glands? Too many have that outcome.
BAETS publish surgery audits listing quantities of surgeries for their members, (NHS & Private figures lumped together) which can be downloaded, but they do not include success rates or failure to cure. https://baets.org.uk/reports/
Paul Dent * Croydon University Hospital. Exclusively NHS Home | Croydon Health Services NHS Trusthttps://www.stgeorges.nhs.uk/
Neil Houghton * - Liverpool. Exclusively NHS https://www.uhliverpool.nhs.uk/
David Cunliffe * - Torbay & South Devon. https://www.torbayandsouthdevon.nhs.uk/
Shad Khan * - Oxford. Oxford University Hospitals (ouh.nhs.uk) https://thefoscotehospital.co.uk/consultants/mr-shad-khan/
Alison Waghorn * - Liverpool. https://www.uhliverpool.nhs.uk/
Helen Perry * - Liverpool. https://www.uhliverpool.nhs.uk/
Susannah Shore * - Liverpool. https://www.liverpoolft.nhs.uk
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Tarek Abdel-Aziz * - UCLH London. https://www.uclh.nhs.uk/ https://mrabdel-aziz.co.uk/
Edward Chisholm * - Taunton and Somerset. https://www.somersetft.nhs.uk/ent/https://somersetent.co.uk/about-mr-chisholm/
Peter Truran * - Newcastle. https://www.newcastle-hospitals.nhs.uk/hospitals/royal-victoria-infirmary/
Matthew Ward * - Portsmouth. Home | Solent Parathyroid | Portsmouth
Ram Moorthy - Slough, Berkshire. https://www.fhft.nhs.uk/ https://www.finder.bupa.co.uk/Consultant/view/161452/mr_ram_moorthy
Titus Cvasciuc - Ulster, Northern Ireland. https://belfasttrust.hscni.net/hospitals/rvh/
Harpeet Uppal - Stoke. https://www.uhnm.nhs.uk/consultant-directory/uppal-harpreet/
Jason Ramsingh * - Newcastle. https://www.newcastle-hospitals.nhs.uk/hospitals/royal-victoria-infirmary/
Carol Watson * Glasgow. https://www.nhsggc.scot/hospitals-services/main-hospitals/queen-elizabeth/
Stuart Gillette - Bath. https://www.ruh.nhs.uk/ https://www.sulishospital.com/specialists/stuart-gillett
Sebastian Aspinall - Aberdeen. https://www.nhsgrampian.org/https://www.circlehealthgroup.co.uk/consultants/sebastian-aspinall
Frank Agada * - York. https://www.yorkhospitals.nhs.uk Mr Frank Agada : Ear, nose and throat surgery (bupa.co.uk)
Gerard Walls - Lancaster. https://www.uhmb.nhs.uk/
Venkat Reddy - Cornwall. https://rocketreach.co/venkat-reddy-email_57804372
Aimee Di Marco - Hammersmith London. https://www.imperial.nhs.uk/consultant-directory/aimee-di-marco
Richard Townsley - Ayrshire. https://www.nhsaaa.net/services/hospitals/university-hospital-crosshouse/
Enyo Ofo - SW London. https://www.stgeorges.nhs.uk/ https://www.newvictoria.co.uk/consultants/mr-enyi-ofo/
Orla Young - Galway. https://www.saolta.ie/hospital/university-hospital-galway
We can recommend surgeons based on experiences from our members but it is important for you to chart your levels, do your own research and ask your doctors to do the same. You are not obliged to stay in your catchment area if your surgeon refuses surgery, i.e. if they wont operate on negative scan or Normocalcemic PHPT patients.
If you have elevated calcium, elevated PTH, and positive scans, you are a straightforward diagnostic case for any experienced parathyroid surgeon, but scans can't always be relied upon. I can't stress that enough based upon surgical results of hyperparathyroid patients over the last decade in our group. Ask if your surgeon will locate all glands and/or test PTH intraoperatively, and/or at what interval after removing diseased glands, to give yourself the best chance of a first time cure.
If you have elevated or inappropriately high normal PTH with high normal calcium, vitamin D is in range (preferably mid range), and magnesium is also mid range, with symptoms of PHPT, you need a surgeon who understands normocalcemic primary hyperparathyroidism and is prepared to operate.
It is bewildering how so many UK surgeons still do not accept NCPHPT exists, who refuse surgery based on calcium not being high enough. Look at our case stories for examples of people whose lives were miserably blighted by poor health for decades with NCPHPT (including my own) or look up population based studies on normocalcemic PHPT dating back to 1969. We have some amazing surgeons providing surgical evidence for our Gory Galleries, and changing lives by operating. Not everybody with NCPHPT will progress to classic PHPT, so it is vital to find a surgeon prepared to operate before this disease causes long-term and sometimes irreversible damage to your body. PLEASE DO NOT GIVE UP.
Note: Oxford Hospitals management are not taking out of area patients via GP referrals (because they became overwhelmed), but will accept GP referrals from surrounding areas and are now accepting out of area referrals from endocrinologists and surgeons.
Hyperparathyroid UK Action4Change would like to see the figure 2.85 abolished from all guidelines, not only because too many doctors are fixated with it, but because it is nonsense and causes patient harm, even death. A bizarre sort of Chinese whispers effect amongst doctors has extended to telling patients that calcium below 2.85 is usually asymptomatic. That is medical gaslighting and categorically untrue. We can't fathom why doctors think it is reasonable to force patients to wait for osteoporosis, kidney stones, NAFLD, CVD, and cognitive decline, or death, as they watch & wait for calcium to exceed 2.85.
It feels like doctors have all been brainwashed by 2.85, in the same way they have been brainwashed by the writer of the NHS Website for PHPT and Information for the public on NG132 (see screenshots below). Thank goodness for the doctors who think logically and realise it is nonsense. How can doctors not question this figure in their own minds? It feels like lemmings tumbling off a cliff. I'm unsure if the NICE guideline committee anticipated the mentality of many doctors to blindly quote 2.85 leading to neglect of the NHS Constitution, or if they set this figure to increase volume of private patients with calcium below that figure. if it's the latter, congratulations because it worked a treat!
All doctors need to read 1.3.2 of NG132 which recommends to ignore the brainwashing of 1.3.1:
'Consider referral to a surgeon with expertise in parathyroid surgery for people with a confirmed diagnosis of primary hyperparathyroidism even if they do not have the features listed in recommendation 1.3.1.'
Current NHS Website guidance for treatments of PHPT - from Parathyroid UK 2025-2028;
Information for the (stupid) public in the eyes of NG132 & Parathyroid UK. Note the last sentence - because of their recommended 2.85, we're nearly all without treatment on the NHS for many years!
If your surgeon wants to delay surgery to wait for your calcium levels to increase, or until you have osteoporosis and/or kidney stones, or if they say other patients are a higher priority, please exercise your right to a second opinion. Find out the number of parathyroid operations per year your proposed surgeon performs. Please feel free to contact us to ask our members about their experiences with the same surgeon.
Surgeons should make every effort to cure you first time. We know too well the consequences of a failed surgery and how hard it is trying to get re-operative surgery for persistent hyperparathyroidism.
If your surgeon refuses to offer a 4-gland exploration (recommended in NICE guidelines: https://www.nice.org.uk/guidance/NG132), it is important to ask why. Ask if they test PTH intraoperatively and at what interval after removal of an adenoma (5 minutes is too soon, it needs to be 15-20 minutes) or how soon after surgery they will test calcium and PTH. It is important to ask about follow up should your surgery not be successful.
We strongly believe all surgeons should offer post op advice for the weeks following surgery or direct you to us rather than simply discharge you back into the care of your GP, without instructions for post op care including required blood tests and supplements. It is important to know your magnesium levels are sufficient after surgery. Nearly all patients we see with extended stays in hospital due to 'parathyroid glands not yet waking up' have hypomagnesemia which needs correcting. Ask them to look up 'The paradoxical block of PTH by hypomagnesemia'. We offer post op instructions and advice in our FB group. Please contact us if appropriate post op follow up has not been provided.
Many people experience symptoms of a post-op 3rd day calcium reduction, and will need to supplement with vitamin D, magnesium and increase dietary calcium and/or take a supplement, even if their blood calcium levels are adequate.
Please get in touch with us if you are concerned about post op bone remineralisation and how to look after yourself in the days, weeks and months following surgery. We cant stress enough, how important this is. Not everybody will recover immediately from surgery, some take longer, often those who've suffered a long time before surgery. A parathyroidectomy will halt the progress of hyperparathyroidism. If some symptoms persist, we can likely help you to understand why, and offer advice and support via our Facebook support group.
See our Endocrinologists page to see two articles regarding post op hungry bone syndrome,
If any clinician believes that sick patients enjoy having to research their condition, please understand that many of us feel we have no option if we are to survive it. Faced with a clinician we are relying on to help us, who isn't up to date, is very daunting. We all 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.'
An example is when a patient is told that hyperparathyroidism doesn't cause cardiac disease. Oh dear, that is so untrue. Please read the following review, and my latest blog, or do your own research, and catch up with us; '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'.
The Parathyroid Gland and Heart Disease - PMC (nih.gov)
A reminder to ask surgeons to test magnesium levels before surgery and again after surgery if it was below 0.8 Most people we see readmitted after surgery, have hypomagnesemia, (<0.75) which is most likely to occur in patients going into surgery with low or low in the range magnesium, i.e. having been prescribed Cinacalcet, PPIs or with fibromyalgia, diabetes, hypothyroidism. This study describes changes in serum magnesium levels during cinacalcet therapy:
https://www.endocrine-abstracts.org/ea/0026/ea0026oc3.2
If your surgeon refuses to test Magnesium, ask them to read this study from February 2024 and ask why they don't know this or if it will change their opinion. Magnesium is a very cheap blood test for the NHS
https://pubmed.ncbi.nlm.nih.gov/37922091/ 'Hypomagnesemia may be associated with symptomatic disease in patients with primary hyperparathyroidism'
Normohormonal PHPT: Elevated/high normal calcium & non suppressed PTH.
See recommendation 1.1.8 of the NICE guideline for PHPT and remember 'above midpoint of the reference range'.
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NHPHPT is a distinct form of Primary Hyperparathyroidism. Here is a link from a 2017 study: https://www.medscape.com/medline/abstract/27866715
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A case study of an 'asymptomatic' patient from the Oxford Journal of Endocrinology: https://academic.oup.com/jcem/article/91/10/3826/2656399
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An extract from the conclusion: Patients with PHPT and either elevated or normal PTH levels present with similar symptoms and calcium levels. The majority of patients with normal PTH have SGD, although adenomas are smaller. This may explain why patients with normal PTH values have less sensitive imaging and more frequently require four-gland exploration. https://link.springer.com/article/10.1245/s10434-011-1744-x.
Intraoperative Parathyroid Hormone Monitoring In Normohormonal Primary Hyperparathyroidism: How Low Do You Go?
Primary Hyperparathyroidism can be a lonely, frustrating, depressing and debilitating disease, especially when friends, family and doctors don't understand how much we are suffering, or how worried we become when we find we have done much more research than the doctors in charge of our health.
Reaching out to others who do understand, and found themselves on the same path, or have recovered after surgery, can help you throughout your journey to surgery and beyond. Please consider joining our online support group. We likely have people in your area of the UK who can offer you local support and advice. https://www.facebook.com/groups/HyperparathyroidUKAction4Change/
Clinicians are very welcome to join our sister group HPT UK Medical: https://www.facebook.com/groups/309534823165675/
Hyperparathyroid UK Action4Change - What change do we want?
To hear, 'I just got diagnosed with hyperparathyroidism. My levels weren't too high, but my doctors wanted me to have surgery before this disease ruined my life, rather than after.'
That's it... Oh, and scan guided surgeons becoming obsolete of course
Nothing beats patient feedback.
If you've had a great experience with a parathyroid surgeon not on our recommended list, please contact us to share your feedback. Equally, please let us know about negative experiences. If you're a surgeon and would like to be listed on this page please ask your patients to join our Facebook private group, or contact me via this site to share their feedback.