What does an Endocrinologist do?
Endocrinologists treat people who suffer from hormonal imbalances, typically from glands in the endocrine system. The overall goal of treatment is to restore the normal balance of hormones found in a patient's body.
We hear repeated stories of endocrinologists who do NOT understand hyperparathyroidism, who talk of managing the disease and who tell patients their calcium isn't high enough for surgery or that because they are over 50 they will not benefit from surgery. Equally, we hear often that some endocrinologists tell patients that because they are under 50 they will qualify for surgery. Age should not even be a consideration. Everybody will benefit from surgery. These doctors are letting their patients down due to lack of knowledge. We hope that with new guidelines created these endocrinologists will start to research hyperparathyroidism. Here is a list of endocrinologists recommended by our members. Scroll down the page for comments regarding The Good Guys, and Endo real Horror Stories.
UK Endocrinologists recommended by our members:
Dr. Bushra Ahmad. Bristol Royal Infirmary and Spire Hospital
Dr. A C Madathil. Hexham Hospital, Northumbria
Dr. Andrew Gallagher QE University Hospital, Glasgow
1345 Govan Road, Glasgow, G51 4TE. (0141) 201 1100
Dr. S Pye - University of North Tees Hospital Cleveland.
Dr. Peter E Carey. Sunderland Royal.
Kayll Road. SR4 7TP. 0191 565 6256.
Dr. Adrian Heald. Leighton Hospital. Cheshire
Professor Mark Walker Newcastle Hospitals
Professor Peter Selby Manchester Royal
Dr Ambar Basu. Botlon Royal Hospital
Dr. Wyn - Arrowe Park Hospital. Arrowe Park Road, Upton, Wirral, Merseyside CH49 5PE Switchboard: (0151) 678 5111
David Walmsley Royal Lancaster Infirmary
Dr Akila De Silva Lincolnshire
Dr. Hisham Maksoud Derby/Nottingham
John Ayuk. QE Birmingham
Dr. Parag Singhal. Weston Super Mare
Dr. James Lawrence. Salisbury District Hospital.
Ruth Pool. Poole NHS Hospital Trust Poole
Dr. Adeel Ghaffer - Dorset County Hospital
Dr. Jamie Smith & Dr. Parag Thaware. Torbay.
Desmond Patrick Rooney. Antrim, Northern Ireland
Dr Bradley in Craigavon Area Hospital
If you are a UK endocrinologist either private or NHS and you have a keen interest and understanding of hyperparathyroidism, please do contact us or request to join our FB group HPT UK Medical. We wrote to 131 NHS Trusts advising of diverse levels of understanding at an endocrine level and recommended mentoring from our recommended lists. Very few responded.
We have members in some areas who have a greater education and understanding about diagnosis and treatment than their endocrinologists and are in need of a referral based on an accurate professional diagnosis. We have many endocrinologists who are letting their patients down 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 normocalcemic PHPT.
The 'watch and wait' approach makes no sense at all knowing this disease is progressive. We sadly see the consequences daily of many members who have to endure the torturous wait while they develop gallstones, kidney stones, tumours elsewhere, and very poor life quality, many having to give up work. Timely referral to an experienced parathyroid surgeon can prevent all of this.
Endocrinologists recommended by non-UK members:
Dr Jennifer Kelly
Syracuse, NY. Joslin Centre.
Dr Jose Santini, Nice France
Dr Eyad Hamoudeh, Worcester, Massachusetts
Dr Georgios Papageorgio
Lifecheck. Vas. Sofias 8, Athens. Mob: 0030 6936 657 224
Over the years we have coined a phrase #SkipThatEndo. This doesn't make us feel good or proud. It has been formed as a necessary means to getting treatment due to wide-scale ignorance of primary hyperparathyroidism by endocrinologists. Some of the feedback from appointments is absolutely 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 a 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 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.
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:https://doi.org/10.7556/jaoa.2018.037 : https://jaoa.org/article.aspx?articleid=2673882&fbclid=IwAR1TlrGp8Pscl4l9e598rQf6YOMj5OkZPRM9NrEKroU7cQhl15kDGPdyzEA
Endocrinologists with an enthusiasm for keeping up to date with PHPT and who would like to interact with our members, learn from case stories and our research please follow this link request to join HPT UK Medical on FB: https://www.facebook.com/groups/309534823165675/
As in our main group, our golden rule is respect to each other. We maintain a peaceful atmosphere. This group is for learning from each other. There is an option not to interact for your privacy which will be respected.
I'm certain many doctors would be upset to know the patient they just dismissed is 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 on their condition and interact with thousands of other people in support groups to learn from their experiences. Please doctors, will you appreciate and recognise this, without scorning your patients. We, after all, 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
The Good Guys...
The doctors and endocrinologists who are up to date with primary hyperparathyroidism, show empathy, understanding, and care. We appreciate you so much... Thank You
Consultant John Ayuk at Queen Elizabeth hospital, BMH, Birmingham. The right diagnosis 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 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, 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 DEXA scan.
Andrew Johnson Bristol who got me diagnosed and referred to Mr 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 referral to another surgeon and have my surgery within the 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 reviews 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 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 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.
Endo true Horror Stories
updates for 2020 coming soon...unfortunately
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 a 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 the menopause ". To which I replied "but I'm 73 "
'We took the wrong one out, come back in a years time and we will review it' yeh 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.
The 1st time around when I was hospitalized with major depression for the 2nd time in 3 yrs, 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.
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 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.