Hyperparathyroid UK (HPT UK)
The level of calcium does NOT determine the severity of symptoms
It's Not All About the Levels...
Endocrinologists treat people with hormonal imbalances, typically from glands in the endocrine system. the overall goal of treatment is to restore the normal balance of hormones. The majority of endocrinologists do not understand hyperparathyroidism. they talk of managing the disease, and tell patients their calcium isn't high enough to cause symptoms, or high enough for surgery. They tell patients over fifty they will not benefit from surgery. Age should never be a consideration. Everybody will benefit from surgery to stop this progressive disease from causing further destruction. These doctors are letting their patients down due to a lack of up-to-date knowledge. We hoped the NICE guidelines might rectify this widespread misinformation and help these doctors to realise they are causing patients harm with their 'Watch and Wait' recommendations of waiting for calcium to increase. If patients can research and learn about primary hyperparathyroidism and correct procedures to follow, why can't they?
If your doctor mentions 'Watch and Wait', please show them this study of over 12000 patients which concludes 'End-organ manifestations of primary hyperparathyroidism develop before biochemical diagnosis or within 5 years in most patients. End-organ damage occurred more frequently in patients with classic primary hyperparathyroidism versus non classic primary hyperparathyroidism, regardless of the severity of hypercalcemia.'; https://pubmed.ncbi.nlm.nih.gov/30420089/
UK Endocrinologists recommended by our members
(Updated September 2022):
Jana Bujanova. Southampton general Hospital.
Jana Bujanova - Consultant Profile - NHS (www.nhs.uk)
Ahmed Yousseif. Royal Free Hospital. London.
Professor John Stevenson. Royal Brompton Hospital, Chelsea.
Claire Harrow. Ross Hall Hospital, Glasgow.
Victor Lawrence. St Mary's Hospital, IOW NHS
Richard Bell. Stepping Hill Hospital. Cheshire.
Mathias Toff. General/Geriatric Consultant. Dartford & Gravesend
David Carty, and Chris Jones, both at Greater Glasgow & Clyde.
Antoinette Tuthil. Cork University Hospital.
Amit Allahabadia. Royal Hallamshire Hospital, Sheffield.
Michael Stacey, Chelsea & Westminster Hospital.
Bushra Ahmad. Bristol Royal Infirmary and Spire Hospital
A C Madathil. Hexham Hospital, Northumbria
Andrew Gallagher QE University Hospital, Glasgow
1345 Govan Road, Glasgow, G51 4TE. (0141) 201 1100
S Pye - University of North Tees Hospital Cleveland.
Peter E Carey. Sunderland Royal.
Kayll Road. SR4 7TP. 0191 565 6256.
Adrian Heald. Leighton Hospital. Cheshire
Suresha Turuvekere Muniyappa. Doncaster & Bassetlaw Hospitals.
Farheen Razza. East Lancashire Hospitals
Professor Mark Walker Newcastle Hospitals
Ambar Basu. Bolton Royal Hospital
Sian Wynne - Arrowe Park Hospital. Arrowe Park Road, Upton, Wirral, Merseyside CH49 5PE Switchboard: (0151) 678 5111
Diabetes and Endocrinology | Wirral University Hospital NHS Foundation Trust (wuth.nhs.uk)
Akila De Silva Lincolnshire
Hisham Maksoud Derby/Nottingham
James. Ahlquist. Southend on Sea
Mark Spring. Surrey
Parag Singhal. Weston Super Mare
James Lawrence. Salisbury District Hospital.
Ruth Pool. Poole NHS Hospital Trust Poole
Adeel Ghaffer. Dorset County Hospital
Jamie Smith & Parag Thaware. Torbay.
Desmond Patrick Rooney. Antrim, Northern Ireland
Bradley in Craigavon Area Hospital
Over the last nine years, we have advised members to bypass endocrinology if possible and go straight to surgeon. Too few endocrinologists have a good enough understanding of Primary Hyperparathyroidism. It is our experience that many of them are not experts in bone metabolism. Many people wait up to a year for an appointment, then find they are discharged inappropriately by a consultant whose knowledge of Primary Hyperparathyroidism is very outdated, and they then either have to begin again or sadly give up. It's a very sorry state of affairs for PHPT patients. Our recommendation has been formed as a necessary means of getting treatment due to the wide-scale ignorance of primary hyperparathyroidism by endocrinologists. Some of the feedback from appointments is shocking. Patients in distress with more knowledge than their consultants are laughed at and mocked when told they have bone pain and poor quality of life.
If your blood levels are significantly indicating primary hyperparathyroidism in any classification; classic, normocalcemic, normohormonal, and your endocrinologist is employing the 'watch and wait' approach whilst this progressive disease takes hold, you can be referred directly by your GP to an experienced parathyroid surgeon.
2018/2019 were very busy years for us, working towards the new guidelines. We were hopeful 2020 would bring heightened awareness throughout the medical community for the benefit of both patients and the NHS. Like the rest of the world, we had no idea Covid-19 was just around the corner.
So all appointments and surgeries were cancelled throughout April, May, and June throughout lockdown. One member had surgery at the beginning of April in Manchester and another member had surgery at the beginning of June in Newcastle Australia. We are slowly beginning to see the return of some scan appointments, and telephone consultations adding people to surgical lists. We can only hope to see all our members who had to graciously accept cancellations will get their surgery before 2020 ends.
Update February 2022... Things are finally moving again. Nine members having their surgery this week!
Please ask your endocrinologist and surgeon about post-operative care and the need for calcium, vitamin D and magnesium after surgery. A drop in calcium can cause a tingly, pins and needs sensation in the hands and mouth area which can be resolved quickly with supplements. Left untreated this can result in a trip to A&E/ER for IV calcium.
it is important to try to rectify a vitamin D deficiency pre-op to prevent the risk of post-operative hungry bones syndrome. If your surgeon disputes this, please show them these articles. (please ignore the spelling error in the first article that nobody has corrected. Primary Hyperthyroidism should of course be Primary hyperparathyroidism):
Role of Magnesium in Vitamin D Activation and Function - The Journal of the American Osteopathic Association, March 2018, Vol. 118, 181-189.doi:
I'm sure many doctors would be upset to realise that the patient they just dismissed, was in the toilets or outside the building or even sat in their car sobbing, feeling they have come to the end of the road. Many patients are now able to conduct thorough research about their condition and interact with thousands of other people in support groups, to learn from shared experiences.
To our doctors, please will you appreciate and recognise this fact without scorning your patients. After all, we recognise that you are only human and don't know everything...
Doctor: Don't confuse your Google search with my 6 years at Medical School.
Patient: Please don't confuse the 1-hour lecture you had on my condition with my 20 years living with it
If you are a UK endocrinologist, private or NHS with a keen interest and understanding of hyperparathyroidism, and would like to interact with other professionals and our members, please request to join our private FB group HPT UK Medical:
We wrote to One hundred and thirty-one NHS Trusts about the diverse levels of knowledge about PHPT at endocrine levels, and recommended mentoring from our recommended lists. Very few responded.
We have many educated members with a greater understanding of the diagnosis and treatment of primary hyperparathyroidism than some of their endocrinologists. People with PHPT are in need of a surgical referral based on an accurate professional diagnosis. There are many endocrinologists letting down their patients and causing prolonged suffering due to ignorance of the relationship between calcium and PTH, poor understanding of long-term untreated PHPT, and very limited if any knowledge of parathyroid hyperplasia and/or normocalcemic PHPT.
The 'watch and wait' approach makes no sense, knowing this disease is progressive. We see the consequences daily, from many members who have to endure the torturous wait while they develop kidney stones, sepsis, endure multiple fractures, and very poor life quality. Many have to give up work.
A timely referral by an endocrinologist to an experienced parathyroid surgeon can prevent all of this.
Please read the positive feedback below. If these clinicians can get it right, why and how can so many be getting it so wrong? Scroll down further to see just how wrong!
The Good Guys...
To the few doctors and endocrinologists who are up to date with Primary Hyperparathyroidism, show empathy and care, and want to see their patients become well again; We appreciate you SO much. Thank you.
The doctors and endocrinologists who are up to date with primary hyperparathyroidism, show empathy, understanding, and care. We appreciate you so much... Thank You
Michael Stacey of Chelsea and Westminster Hospital. He broke everything down with a full explanation of what and why he wanted to do tests and what he was ruling out. Listened to me and answered all of my questions and concerns honestly with kindness! Pleasant, no ‘usual’ Dr ‘arrogance’ rate him 10/10!
I had a good experience with Dr Amit Allabadhia Royal Hallamshire Sheffield. Very thorough, knowledgeable, friendly, and easy to speak with. He referred me to MDT then for relevant tests/scans, then on to the surgeon. His staff are very helpful too.
Dr Antoinette Tuthil Cork University Hospital (CUH) Ireland - no messing, referred to the surgeon, knows that surgery is the only cure for HPT.
Dr Chris Jones, at Inverclyde Royal Hospital, is always at the end of the phone to answer questions either from me or my GP. He phoned me post-op and we were on the call for 45 minutes as he explained our plan going forward and what to look out for/expect.
I'd recommend David Carty to anyone in the North Glasgow area, as he was happy to listen to me, and at no point did he make me feel "silly" he actually said it sounded like I knew quite a bit about my situation. David Carty, endo in the North Glasgow area gets the thumbs up from me.
Dr Mathias Toth - saw him privately at Nuffield Brentwood and he also works out of Gravesend. One of the nicest medics I’ve ever seen. Incredibly knowledgeable and talks through everything. At my initial consultation with him, I told him I had high calcium and had kidney stones. he asked me a few questions and said he wanted blood tests but that he thought I had hyperparathyroidism and surgery was the only option. Arranged all the tests within a couple of days.
Professor John Stevenson, Royal Brompton Hospital, Chelsea, London. He referred me to a surgeon on the bases of my symptoms , regardless of my marginally alleviated Ca+ & PTH. My vitamin D was low, and I had osteopenia.
Claire Harrow at Ross Hall hospital in Glasgow referred me for surgery which I chose to have on the NHS. This was at a time when I was clueless about parathyroid problems (before I found this group) and I would have accepted a 'watch and wait' approach. I am pleased she knew what she was doing
Consultant John Ayuk at Queen Elizabeth hospital, BMH, Birmingham. The right diagnosis the first time, fought but failed to get me the op in 8 weeks. Happy to discuss and recommend support groups by opening his laptop - and also happy to discuss the stupidity of defining PHPT by the Ca level - very clear that he knew I was suffering terribly and horrified he had to classify my level of illness as mild because I have mild hypercalcemia.
DR Haq. Bassetlaw hospital Worksop. Recommended me straight away for more tests and ultrasounds and scans, also told me last week that my PTH would continue to rise and my problems would get worse unless it is taken out, even though my calcium is now within the range at 2.53.
Dr. Ahmed at Lincoln County referred me straight away to Sheffield.
Dr. Bennett has been amazing I had an appointment on the 11th of July he did bloods and ordered an ultrasound straight away, then had another set of bloods a few weeks later and referred me straight to the surgeon, Miss Lim.
Dr. Richardson (endo) at Bournemouth Hospital and Mr. Skene (surgeon) at Bournemouth. Unlike Poole hospital who tried to fob me off with wait and see, they listened and said I was too young at 56 to have to put up with symptoms!
Dr. Maria Byrne, Mater Hospital, Dublin 7, was diagnosed very quickly with onward referral to the surgeon.
My Endo is Dr. Miguel Debono (Sheffield). I've only met him once but he saw my results (low-normal Calcium, slightly raised PTH) & thought that I might be normocalcemic or have secondary HPT - his words, I didn't need to mention them! I'm now on high Vit D & undergoing some other tests such as a DEXA scan.
Andrew Johnson Bristol, who got me diagnosed and referred to Justin Morgan very quickly and efficiently.
I'd recommend Professor Gittoes at University Hospital Birmingham if anyone is having difficulty getting a diagnosis. Mine was given at my first consultation as being NCPHPT. Then referred for scans quickly. Became a little more complicated referring for surgery but by standards, I have heard within the group much more straightforward. Had I stayed at this hospital, the surgeon did state he would be in no rush to do it. I then asked GP for a referral to another surgeon and to have my surgery within 18 weeks.
Dr. Colin Johnston, Endocrinologist at St.Albans Hospital, Herts. Diagnosed Hyperparathyroidism and done 24hr urine and blood test, prescribed Vit D. Explained everything, doesn't rush the appointment.
After a rocky start when I found her intimidating, she promptly organised tests and referred me to a surgeon on my second appointment with her. From seeing her on 8 Jan, saw surgeon 4 weeks later and surgery date 16 April, would have been sooner but he was away for a month. So a total of 12 and a half weeks from seeing Endo to surgery, as long as it's not cancelled: Dr. V Greener, Chelsea, and Westminster Hospital.
Telephone appointment with Dr. Bushra Ahmad from the Bristol Royal Infirmary: She was excellent, asked about my symptoms and family history, has reviewed my bloods and urine samples since Oct 2019, and suggests there is a problem with one of my parathyroids despite some readings being in what is classed as within the normal range - highest I think is 2.77, she says my body is clearly trying to get rid of excess calcium in my urine. She is referring me for bone and para scans and to the surgeon, ordered more bloods including cortisol to get an up-to-date picture as I am feeling very drained and generally low. Was also pleased I have been taking some Vitamin D. Says she thinks it will be a while before surgery but at least I will be on the list. I feel so relieved that I didn’t have to argue my case and would recommend her.
Endocrine true Horror Stories
When I walked into the endocrinologist's office it was very clear I knew more about the disease than he did. Talk about scary! The "specialist" who is supposed to be helping you can't even answer your questions.
'One endo, who was registrar level, said he didn't know much about hyperparathyroidism so checked in his book. Fair enough I thought, but then another member of this group saw him several weeks later and he told her he knew for certain that her vitamin D would be low and she should take a high dose. This was without testing it and she already had very high calcium and normal levels of D. Luckily his superior rang her several days later to tell her not to take them in case her calcium rose further'.
' Yes, that's right. He also had the cheek to suggest that the blood in my urine was probably not caused by those teeny tiny painful kidney stones, but probably my menstrual cycle and I was mistaken'. Wouldn’t mind but if he’d read my notes he would know that I haven’t had a period since I was around 19 years old'.
Generally, my main endo was very helpful but I have a letter from him which states categorically that my palpitations could not possibly be caused by hyperparathyroidism because my calcium was not high enough and would definitely not go away after surgery (they did).
'Your symptoms could be caused by any number of things but not hyperparathyroidism. As you have had a PTH over range and one under, there is no need for further investigation or blood tests, you are discharged'
The worst comment I had was from the endo consultant who is the clinical Dean of Cambridge medical school, so responsible for teaching the next generation of medics: " The symptoms only come from high calcium. You don't have very high calcium, so you can't be having any symptoms."
My GP, when confronted with my high Ca and low vitamin D, in five years of letters (2011-2016) said "it can't be HPT that's incredibly rare. There hasn't ever been a case at this practice so it's much more likely to be diabetes or thyroid but I suppose I could check your PTH". Two days later she said, "you were right, you have a tumour and I've missed it for at least 10 years. Are you going to sue me?"
I was explaining my hot flushes followed by feeling very cold. He said, "well that would be menopause ". To which I replied "but I'm 73 "
'We took the wrong one out, come back in a year's time and we will review it. ' Yeah okay, then 16 months later and still nothing from them.
My first endo said it was my thyroid without seeing any labs - then after she saw my high Ca in the labs she said I was dehydrated. The second endo said I have PTH but that at age 59 I was too old for surgery.
I was hospitalized with major depression for the second time in three years, the Mental health Drs didn't think my high levels of calcium and parathyroid hormone were enough to cause my depression They treated me erroneously with psych meds...
Endocrine surgeon: Calcium 10.7, PTH 54.. he declared I definitely did NOT have HPT!! He said he would send my urologist an e-mail informing him that HPT was not the cause of my 30+ kidney stones in the last ten years so he could look for another reason why!!!
The endocrine surgeon didn't believe I had an adenoma. Luckily for me, I also had Graves Disease so he agreed to remove my thyroid and "surprisingly" found the adenoma I told him was there behind it.
Endo felt because my levels always just elevated, there was nothing at all wrong, admitted yes low Vitamin D...and dismissed all my symptoms as me making things up.
After telling my endo for several years that I felt all my symptoms were coming back, I was in a lot of pain and that I wasn't cured, he said 'Your levels show you do not have primary hyperparathyroidism, but if you do, it's mild'. I had a second adenoma removed after getting a second opinion. He refused to see me himself but passed on the message that he was delighted I was cured, but he wouldn't have done anything differently if it happened again...
I was just recently diagnosed with hyperparathyroidism, Apparently "mild". My symptoms don't feel mild but the endocrinologist said unless I developed kidney stones or osteoporosis that I don't need surgery, I have to just sit and wait. Meanwhile, I feel constantly sick, in pain, weird heartbeat, and have a fuzzy head. I did try and say to him that I had heard that it doesn't matter if it is mild, the symptoms can still be severe, but he just talked me down and smiled at me.