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Endocrinologists

Endocrinologists treat hormonal imbalances, typically from glands in the endocrine system. The overall goal of treatment is supposedly to restore the normal balance of hormones. Feedback from thousands of patients is that many endocrinologists have a very poor understanding of primary hyperparathyroidism. They talk about managing PHPT. They tell patients that their calcium isn't high enough to cause symptoms, or high enough for surgery, or tell patients over fifty that they will not benefit from surgery. Firstly, age should never be a tool used to deflect surgery.  Everybody will benefit from surgery to stop the progression of PHPT causing further destruction. Some doctors excuse using the 'over fifty' restriction by suggesting younger people will suffer more serious consequences because they have a longer life ahead of them than over fifties. Yes, I agree with those thoughts you're having about this right now... Many doctors reel off nonsense to patients  without apparently thinking for themselves that  what they are saying makes no sense at all. Many are letting patients down, and contributing to actual harm due to a lack of up-to-date knowledge. The term medical gaslighting will be recognised by many hundreds of endocrine patients. Elevated parathyroid hormone is recorded to increase risks of gallstones, cardiovascular disease, heart attacks and ischemic strokes. Yet doctors want to make patients wait until their calcium is above 2.85 and disregard PTH.

 

We hoped NICE guidelines (NG132) would rectify widespread misinformation and help doctors to realise they are causing patients harm with their 'Watch and Wait' practice; waiting for calcium to increase. If patients can research and learn about PHPT, why can't they?  If your doctor suggests 'Watch and Wait', please show them this 2019 study of over 12 000 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/

 

How many doctors have a thought process about possible reasons for high normal calcium with inappropriate PTH and symptoms of PHPT such as medications like PPIs, HRT, bisphosphonates, steroids, metformin? Barely any of them.  Here are some examples.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3849680/ 'In a multi-ethnic cohort of postmenopausal women, ET use was associated with lower serum calcium, lower serum phosphorus, suggesting these associations are attributable to increased calcium intake into bone and increased urinary phosphorus excretion.'

https://academic.oup.com/qjmed/article/104/12/1091/1544822   Note; lady in this study whilst on HRT had serum corrected calcium 13 months before admission had been 2.54 mmol/l (normal =2.15–2.6 mmol/l).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5237770/#:~:text=If%2025(OH)D%20and,risk%20is%20estimated%20as%2083.4%25.

'In conclusion, PTH levels were increased, while 25(OH)D levels were decreased in patients with stroke. Both PTH and vitamin D appear to be separate risk factors for stroke. 25(OH)D was the most powerful marker for the predicting the stroke risk, followed by HT and PTH, in descending order. In addition to 25(OH)D, PTH serum levels should be considered, and both predictors should be assessed in conjunction for more accurate determination of stroke risk.' 

Endocrinologists recommended by our members updated December 2023
 

Peter Hammond - Harrogate/York 

https://www.hdft.nhs.uk/consultants/dr-peter-hammond/
https://harrogateharlow.co.uk/portfolio-item/hammond-peter/

Mo AyeHull University Teaching Hospitals NHS Trust (hey.nhs.uk)
Dr Mo Aye | RCP London

Rupinder Kochhar - Salford Royal Northern Care Alliance
Dr. Rupinder Kochhar | Diabetes & Endocrinology Specialist in Bolton - Doctify

Siva Sivappriyan - Home - Maidstone and Tunbridge Wells NHS Trust (mtw.nhs.uk)
Dr Siva Sivappriyan : Endocrinology and diabetes mellitus , General (internal) medicine (bupa.co.uk)

 

Claire Harrow - Ross Hall Hospital, Glasgow.

https://www.nhsggc.org.uk/patients-and-visitors/main-hospital-sites/vale-of-leven/vision-for-the-vale-of-leven/information-for-gps/outpatient-services/diabetes-and-endocrinology/#
 

Jana Bujanova - Southampton general Hospital.
Jana Bujanova - Consultant Profile - NHS (www.nhs.uk)

Ahmed Yousseif - Royal Free Hospital. London.

https://www.royalfree.nhs.uk/services/staff-a-z/dr-ahmed-yousseif/
 

Professor John Stevenson - Royal Brompton Hospital, Chelsea.
https://www.rbht.nhs.uk/specialists/professor-john-stevenson

 

Victor Lawrence -  St Mary's Hospital, IOW NHS

https://www.nhs.uk/Services/hospitals/Services/Service/DefaultView.aspx?id=350181
 

Richard Bell - Stepping Hill Hospital. Cheshire.

https://www.nhs.uk/Services/hospitals/Services/Service/Team/DefaultView.aspx?id=93097

Mathias Toff - General/Geriatric Consultant. Dartford & Gravesend 

https://www.dgt.nhs.uk/services/a-z-consultants/mathias-toth

David Carty and Chris Jones - Greater Glasgow & Clyde.

https://www.nhsggc.org.uk/
 

Antoinette Tuthil - Cork University Hospital.

https://www.cuh.hse.ie/our-services/our-specialities-a-z-/endocrinology-diabetes/

Amit Allahabadia - Royal Hallamshire Hospital, Sheffield.
https://www.nhs.uk/profiles/consultant/3561757

 

Michael Stacey - Chelsea & Westminster Hospital.
https://www.chelwest.nhs.uk/services/medicine/endocrinology

Bushra Ahmad - Bristol Royal Infirmary and Spire Hospital

https://www.spirehealthcare.com/consultant-profiles/dr-bushra-ahmad-c4107853/

A C Madathil - Hexham Hospital, Northumbria

https://www.nhs.uk/Services/hospitals/Services/Service/DefaultView.aspx?id=90415

Andrew Gallagher -  QE University Hospital, Glasgow

1345 Govan Road, Glasgow, G51 4TE. (0141) 201 1100

 

S Pye - University of North Tees Hospital Cleveland.

https://www.nth.nhs.uk/hospitals/north-tees/


Peter E Carey - Sunderland Royal.

Kayll Road. SR4 7TP. 0191 565 6256.

 

Adrian Heald - Leighton Hospital. Cheshire

http://www.nhs.uk/Services/hospitals/Services/Service/DefaultView.aspx?id=91260
 

Suresha Turuvekere Muniyappa - Doncaster & Bassetlaw Hospitals.
https://www.nhs.uk/profiles/consultant/6049849

Farheen Razza -  East Lancashire Hospitals

https://www.nhs.uk/profiles/consultant/6053569

Professor Mark Walker -  Newcastle Hospitals

http://www.newcastle-hospitals.org.uk/staff-profiles/11943.aspx

 

Ambar Basu -  Bolton Royal Hospital

http://www.boltonft.nhs.uk/consultants/dr-ambar-basu/

 

Mark Spring Surrey

https://www.newvictoria.co.uk/consultants/dr-mark-spring/

Parag Singhal - Weston Super Mare
http://www.doctoralia.co.uk/consultant/parag+singhal-12192236

 

James Lawrence -  Salisbury District Hospital.

https://www.nhs.uk/profiles/consultant/3584462#

 

Ruth Pool - Poole NHS Hospital Trust Poole

https://www.poole.nhs.uk/our-services/consultant-directory/consultant-directory---p-t/dr-ruth-poole.aspx

 

Adeel Ghaffer - Dorset County Hospital  

https://www.myhealthspecialist.com/patient/specialist/17/Adeel%20Ghaffar

Desmond Patrick Rooney - Antrim, Northern Ireland
http://www.northerntrust.hscni.net/hospitals/303.htm

 

Bradley in Craigavon Area Hospital

http://www.southerntrust.hscni.net/1539.htm

 

Since 2014, we've advised many members to bypass endocrinology if possible and go straight to a parathyroid surgeon. Too few endos have a good enough understanding of PHPT.  In our experience most are not experts in bone metabolism.

Many patients wait up to two years (2023 times) for an appointment, then find they are discharged inappropriately by a consultant whose knowledge of PHPT is very outdated. They then either begin again or give up, a very sorry state of affairs for PHPT patients. Our advice has been formed as a necessary means to getting treatment due to wide-scale ignorance of PHPT by endocrinologists. Feedback from many appointments is shocking. Patients in distress, with more knowledge than their consultants, are laughed at, even mocked after saying they have bone pain and poor quality of life.  


If your symptoms and blood levels indicate PHPT (after ruling our secondary), in any classification; classic, normocalcemic, normohormonal, and your endocrinologist is employing the 'watch and wait' approach as this progressive disease takes hold, you can be referred directly by your GP to many experienced parathyroid surgeons.

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 an intense tingly, pins and needles sensation, beginning in the hands, feet and mouth which can spread quickly from head to toes. This can be resolved quickly with supplements. Left untreated, it 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 (ignore the spelling error in the first article that nobody has corrected. Primary Hyperthyroidism should of course be Primary Hyperparathyroidism):

https://www.longdom.org/open-access/hungry-bone-syndrome-after-parathyroidectomy-for-primary-hyperthyroidism-2161-1076-4-168.pdf

Role of Magnesium in Vitamin D Activation and Function - The Journal of the American Osteopathic Association, March 2018, Vol. 118, 181-189.doi:
https://doi.org/10.7556/jaoa.2018.037: https://jaoa.org/article.aspx?articleid=2673882&fbclid=IwAR1TlrGp8Pscl4l9e598rQf6YOMj5OkZPRM9NrEKroU7cQhl15kDGPdyzEA

I'm sure many doctors would be upset to realise that the patient they just dismissed, was sobbing in the toilets, outside the building or sat in their car, feeling they have come to the end of the road, all hope lost.

Many patients are able to conduct thorough research about their condition and interact with thousands of other sufferers in support groups, to learn from shared experiences. 
To 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.

To the doctors brandishing their certificates or Google logo mug; 'Don't confuse your Google search with my years at Medical School',  
Please don't confuse the 1-hour lecture you had on hyperparathyroidism with patients' 10-20 years of living with it. Thank you

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:

 

https://www.facebook.com/groups/309534823165675/

 

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 many of their endocrinologists.  People with PHPT are in need of a surgical referral based on an accurate professional diagnosis. There are still too many endocrinologists letting down (that's putting it very mildly) their patients and causing prolonged suffering  and serious increased risks of cardiac events and death, 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. Its really NOT all about the levels, but very much about the relationship between calcium and PTH. We believe very strongly that magnesium and vitamin D should always be known alongside Ca/PTH. 

 

Just one example from December 2023; Sestamibi scan located 2cm adenoma in a lady with these levels;  Ca 2.6 PTH 11. Vit D 49 

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!

Hyperparathyroid UK Action4Change produced educational leaflets in June 2023. With so many doctors still oblivious to the harm caused by PHPT, and the surgical benefits to both patients and to ease the strain of untreated PHPT added to the NHS, we felt these leaflets were a necessary aid to try to reduce these issues. They are a truthful contrast to leaflets circulated by the renamed Parathyroid UK, which have contributed to harm since 2010. Clinical appreciation of this disease by many doctors in still stuck in 1980, which leaves patients in despair. We hope these leaflets will help patients to assist their doctors in removing the blinkers which appear to be obscuring a rational view. See these sample  screenshots. They are now available in packs of ten. Please see our contact page to order: Contact us.

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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

  • 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.

  • 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.

  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.

Est. 02.09.2014

 Hyperparathyroid UK (HPT UK)

Action4Change

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