Hyperparathyroid UK (HPT UK)
Action4Change
It's NOT All About the Calcium Levels...
Hyper
Para
thyroid
UK -
Action
for
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 not improved since the pandemic, but become increasingly worse. Many surgeons now operate privately. Where does that leave NHS patients? Usually at the back of ever increasing queues, after crawling through a hazardous diagnosis journey via GPs and endocrinologists, so we want to help to make sure that at the end of those long waiting times, patients get to see surgeons with positive patient feedback. Always ask surgeons if they offer bilateral explorations, even if only one adenoma has been identified by scans. anything less is equivalent to rolling a dice. Who wants to go through this nightmare a second time because their surgeon didn't look at the other glands?
BAETS publish surgery audits listing quantities of surgeries for their members which can be downloaded, but they do not include success rates/failure to cure. https://baets.org.uk/reports/
Shad Khan * - Oxford Oxford University Hospitals (ouh.nhs.uk) https://thefoscotehospital.co.uk/consultants/mr-shad-khan/
Tarek Abdel-Aziz * - UCLH London https://www.uclh.nhs.uk/ Mr Tarek Abdel-Aziz | Cleveland Clinic London
Neil Houghton * - Liverpool Exclusively NHS https://www.uhliverpool.nhs.uk/
Edward Chisholm - Taunton and Somerset https://www.somersetft.nhs.uk/ent/https://somersetent.co.uk/about-mr-chisholm/
Titus Cvasciuc - Ulster, Northern Ireland https://belfasttrust.hscni.net/hospitals/rvh/ https://www.ulsterindependentclinic.com/consultants/7061552
Tom Kurzawinski UCLH London University College Hospital : University College London
Peter Truran - Newcastle https://www.newcastle-hospitals.nhs.uk/hospitals/royal-victoria-infirmary/
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)
David Cunliffe - Torbay & South Devon https://www.torbayandsouthdevon.nhs.uk/
Aimee Di Marco - Hammersmith London https://www.imperial.nhs.uk/consultant-directory/aimee-di-marco
Paul Dent * Croydon University Hospital. Exclusively NHS Home | Croydon Health Services NHS Trusthttps://www.stgeorges.nhs.uk/
Helen Perry * - Liverpool https://www.uhliverpool.nhs.uk/
Matthew Ward * - Portsmouth https://www.porthosp.nhs.uk/departments-and-services/ear-nose-and-throat-ent Home | Solent Parathyroid | Portsmouth
Gerard Walls - Lancaster https://www.uhmb.nhs.uk/
Susannah Shore * - Liverpool https://www.liverpoolft.nhs.uk
Venkat Reddy - Cornwall https://rocketreach.co/venkat-reddy-email_57804372
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 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 because too many doctors are fixated with this number which causes patient harm.
A bizarre sort of Chinese whispers effect between many doctors has extended to telling patients that calcium below 2.85 is usually asymptomatic. That is medical gaslighting. It is categorically untrue.
We cant fathom why doctors think it is reasonable to force patients to wait for osteoporosis, kidney stones, NAFLD, CVD, and cognitive decline as they wait for calcium to exceed 2.85. How can doctors not question this in their own minds?
I'm unsure if the NICE guideline committee anticipated the mentality of many doctors to blindly quote 2.85 leading to them practicing monstrous neglect of the NHS Constitution, or if they set this figure to increase volume of private patients with calcium below that figure.
It is like many doctors have all been brainwashed by 2.85. thank goodness for the doctors who think logically and realise it is nonsense.
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.'
Shad Khan - Consultant Endocrine and General Surgeon. Oxford University Hospitals
"Normocalcaemic hyperparathyroidism (NCPHPT) is increasingly becoming accepted as a condition requiring surgical correction - much like primary hyperparathyroidism (PHPT). In this variant, patients have an elevated parathyroid hormone level whilst displaying normal calcium levels in the blood. Nevertheless, there is a growing body of evidence that suggests that kidney stones, osteoporosis, and a multitude of symptoms found in the more conventional PHPT occur to the same extent in NCPHPT.
Anecdotal evidence would suggest that a lot of benefits can be gained through surgical cure and there is growing concern about waiting until there is organ damage before offering surgery. Not many units are recognising this as yet but we are increasingly seeing NCPHPT patients with quality of life dramatically improving following successful surgery." (2022)
Tarek Abdel-Aziz - Consultant Endocrine Surgeon. UCLH and Cleveland Clinic, London.
I advocate surgery for normocalcaemic primary hyperparathyroidism, especially if the patient is symptomatic, or has underlying bone disease.
Symptoms can be subtle and variable, and commonly present with fatigue or brain fog. I operate, under the guidance of intraoperative PTH assays, which I use in all my cases, including if all scans are negative, to ensure a biochemical cure.'
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...
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.