The following UK surgeons have received multiple positive feedback from our members:
Surgeons known by us to understand normocalcemic PHPT, are limited in the UK, despite many of our successful case stories. Recommended surgeons for NCPHPT have an * after their name.
Justin Morgan. * Endocrine Surgeon, Bristol.
Frank Agada. *York Teaching Hospitals.
Sheila Fraser. Consultant Endocrine Surgeon . St James Hospital, Leeds
Peter Truran. RVI Newcastle. http://www.newcastle-hospitals.org.uk/services/surgical_services_endocrine-and-thyroid-surgery_staff-profiles.aspx
David Smith. Ninewells Hospital Dundee
Paul Wilson NHS West Midlands Stoke-on-Trent
Enyi Ofo. St Georges and Kingston Hospitals.
Mark Lansdown. Leeds Hospitals
Stephen Shering. Bridgend Wales
Mr. Demetrios Hadjiminas. Hammersmith. London
Mr. Ahmed Sweed. Cheshire.
Professor Henry Paul Redmond Cork University Hospital
Murat Akyol. Edinburgh Royal Infirmary
Professor Dae Kim London, Portsmouth
Antonio Belloso. Blackburn Royal Hospital
Charles Zammit. Princess Royal Hospital Haywards Heath
Abigail Evans. Poole Hospital NHS Trust
Ms. Anna Aertson. Salisbury District Hospital.
Amir Bhatti. Washington Spire Hospital, Durham.
Alison Waghorn. Liverpool
Deborah Markham. Warwick Hospital
The following surgeons have received positive feedback from our non-UK members:
Dr. Babak Larian. LA
Julie Miller, Melbourne, Australia
Dr. Scott Albert Syracuse, US
NY Upstate Hospital. Oncologist specialising in Parathyroidectomy.
Dr Janusic. Croatia
Germany: Prof. Dr. med. Dr. h. c. mult. Henning Dralle, Universitätsklinikum Essen
Dr. Marlon Guerrero. Tucson University Medical Center. Arizona, US.
Pisa Hospital, Tuscany
We can recommend surgeons based on experiences from our members but it is still essential for you to chart your levels and do your research. If you have elevated calcium, elevated PTH, and positive scans then you are a straightforward case for any of our experienced parathyroid surgeons.
If you have persistent elevated PTH but normal calcium then you need a surgeon who understands normocalcemic primary hyperparathyroidism and is prepared to operate. It is surprising and how many surgeons still do not accept NCPHPT exists and refuse surgery. We are aware of some high profile parathyroid surgeons who are actively discouraging surgery for people with NCPHPT. We find this shocking. Look at Eileen McDonald Sayer in our case stories for an example of somebody whose life was miserably blighted by very poor health for decades with NCPHPT yet Justin Morgan removed a marble sized adenoma from between her carotid artery and her spine in June 2018. How other surgeons can justify refusing her surgery is beyond me.
We have so many successful case stories of people post-op who had NCPHPT. Here is a link to BMJ Best practice for Primary Hyperparathyroidism. They clearly state that not everybody with NCPHPT will go on to develop classic PHPT of elevated Ca and PTH. It is really important for doctors and surgeons to recognise this fact. There is NO good reason to 'watch and wait'.
You are not obliged to stay in your catchment area if your surgeon refuses surgery. Not everybody with NCPHPT will progress to classic PHPT, so it is important to find a surgeon prepared to operate before this disease causes long-term and sometimes irreversible damage to your body. DO NOT GIVE UP.
Elevated/high normal calcium & non suppressed PTH.
NHPHPT is a distinct form of Primary Hyperparathyroidism. Here is a link from a 2017 study: https://www.medscape.com/medline/abstract/27866715
Here is a case study of a 57 years old asymptomatic patient from the Oxford Journal of Endocrinology: https://academic.oup.com/jcem/article/91/10/3826/2656399.
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.
If you have had a great experience with a parathyroid surgeon who isn't on our recommended list, please do get in contact with us and tell us about your recommendation.
If your surgeon suggests waiting until your levels increase, or until you have osteoporosis and/or kidney stones, (he/she may suggest you are not a priority if you don't have either kidney stones or osteoporosis), please exercise your right to a second opinion.
Please find out how many parathyroidectomies per year your proposed surgeon performs. If he/she performs less than 40 a year (ideally 50), please contact us to ask if our members have experience with the same surgeon. It is essential that your surgeon gets it right FIRST time. We know too well the consequences of a failed surgery and the difficulty entailed in chasing a second surgery or diagnosis for persistent hyperparathyroidism.
If your surgeon refuses to offer a 4 gland exploration
(as recommended in the new NICE guidelines:
https://www.nice.org.uk/guidance/NG132), it is important to ask why? It is important to ask if they test PTH intraoperatively. It is important to ask how soon after surgery they will test calcium and PTH, and it is important to ask about follow up should surgery be consequently unsuccessful.
We strongly believe all surgeons should offer post op advice in the weeks following surgery rather than simply discharge you back into the care of your GP without instructions for post op care including required blood tests and supplements. We have post op instructions and advice in our files. Please contact if appropriate post op follow up has not been provided.
Many people experience symptoms of a post-op 3rd day calcium crash and will need to supplement with vitamin D, magnesium and increase calcium in the diet, 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. 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.
Primary Hyperparathyroidism can be a very lonely and debilitating disease, especially when friends, family and doctors dont understand how much we are suffering inside.
Reaching out to others who do understand, can help you on your journey to surgery and beyond.