Society for Endocrinology (SfE) Endocrine Academy
Birmingham, April 2022
Jane & Steve Compton
Jane writes: We had a brisk and busy first day with lots of interest in our leaflets and our poster below:
‘How can endocrine nurses help patients with hypoparathyroidism?
Be our named nurse
Be contactable by email
Understand our condition and the need for regular blood testing with results returned the same or next day.
Appreciate hypoparathyroidism is a rare condition.
This led to numerous conversations and many nurses said they really appreciated this guidance. I spoke to one nurse who said she will change her practice now that she understands how urgent our need for blood tests can be and will have a slot in her clinics for patients to come on demand if they need to. It would be so good if this practice became nationwide.
The second day was nice and busy at the stand again and we took many bulk orders for our leaflets from both nurses and trainees. The workshop I attended today for trainee endocrinologists was about osteoporosis secondary to recurrent hyperparathyroidism. You can read the abstract here https://www.endocrine-abstracts.org/ea/0082/ea0082wf1
Once again, it was a very rewarding experience to be able to talk to young medics about life with hyperpara and hypopara who often have no idea about the impact of these conditions. We feel that our presence at the conference is always very worthwhile especially when we can actively participate in workshops.
British Association for Endocrine & Thyroid Surgeons (BAETS)
Bournemouth, October 2022
Weigall & Caroline Dow
Lucy writes: It was a fascinating couple of days at the conference. To speak to so many people who were clearly so passionate about making our lives better, validating out experience and wanting to make knowledge better in the wider medical community was revitalising! It’s really got me thinking about all the things we can do and get involved in.
We spoke to many surgeons over the two days. Most knew about Parathyroid UK and were keen to have patients referred to them. Other were keen to learn more and several asked for more patient stories to be filmed.
We heard about new drugs (Transcon PTH) and the ongoing NIfTY trial on intra-op imaging devices from Saba Balasubramanian. Saba is also involved in the Paracan trial on parathyroid cancer Three further trials are proposed – parathyroid transplants (Radu Mihai), quality of life (Saba) and the ablation of adenomas to avoid need for surgery (Neil Sharma). The parathyroid stem cell research sadly closed in the UK due to lack of funding but the project has been taken up at Harvard University, USA.
There was an interesting presentation on quality of life in 159 primary hyperparathyroidism patients (min age 62, max 80) who were studied at 1 and 3 years post parathyroidectomy. Results showed significant improvement in QoL in younger patients (with particular emphasis on brain improvement) but much less in older patients. After 3 years the 80 yr olds’ quality of life was less good but obviously very difficult to analyse as quality of life tends to diminish post 80 anyway.
A new study on quality of life in hypoparathyroidism by Sarah Hillary is now published
Sebastian Aspinall, audit lead for BAETS, spoke about the de – anonymised lists. These have been updated and will be published on the website early next year. Providing data to the BAETS audit is still voluntary, unfortunately, so if a parathyroidectomy is unsuccessful or adenomas can’t be found there is no pressure on the surgeon to report the op and the audit therefore gives a somewhat skewed suggestion of the success rate. A government run app is to be developed where results of all surgeries will have to be recorded should give a much better idea of how many thyroidectomies and parathyroidectomies are actually being done. Seb Aspinall also spoke about the importance of high volume surgeons as highlighted by the GIRFT report. Officially, high volume surgeons are required to do 20 operations a year but the aim is to increase this to 50 ( which we are campaigning for).
The Parathyroid Symposium chaired by Fausto Palazzo & Jennifer Downs was very interesting.
- There was a lot of discussion on when surgery should be advised. Currently the presence of high calcium, high pth and osteoporosis meet the NICE guidelines but this is often too late. NICE guidelines are now to be revised next year.
- Many patients with calcium levels within normal range but elevated PTH levels ae not being diagnosed.
- Symptoms often confused with menopause
- Currently significant improvement in brain health after surgery and significant improvement in bone turnover markers from day 1. Quality of life research is needed.
- VitD was discussed in relation to hypoparathyroidism. One ENT surgeon said he will always prescribe before thyroid surgery because hypopara is so common after certain thyroidectomies. Between 40-60% of people with PTH problems are deficient in vitamin D .
- The term “mild” primary hyperparathyroidism is leading some practitioners not to operate.
- Should bisphosphonates be prescribed post parathyroidectomy? Opinions differ!
- Dexa scan recommended two years post surgery and is in the guidelines.
Tristan Richardson then spoke about markers of hyperparathyroidism beyond calcium and PTH and Tony Skene discussed the 2019 NICE primary hyperparathyroidism guidelines and the update which is now in progress. James Kirkby-Bott and Neil Tolley chaired a mini symposium on Voice which included presentations on continuous intra-operative nerve monitoring by George Mochloulis and on evidence based voice pathway for patients undergoing thyroid surgery by Kate Heathcote and Ricard Simo.
There was also a very interesting talk by Professor Dame Lesley Fallowfield on communicating risk, communicating with patients generally and how to help patients decide on a course of treatment. It was suggested that numerical or percentage rates of success not well understood by the majority. Lots of evidence shows that the treatment the surgeon wants is most often chosen by the patient. Maybe consultants are sometimes not sufficiently clear about risk.
Tom Kurzawinsky updated us on the calcium home tester. It works very well and accurately on venous blood but not yet so well on capillary or saliva. There needs to be more research done before it can be approved but trials will continue. Tom also gave a presentation on paediatric differentiated thyroid carcinoma: a UK national clinical practice consensus guideline.
Thank you to President Radu Mihai and all our advisors for their ongoing work and continuing support. Alison Waghorn will be president of BAETS next year. She is now on our advisory team and is very keen to set up an information talk with patients online. She would also like us to give a presentation at the next BAETS conference.
Next year’s BAETS meeting will be held in Athens and we are also invited to exhibit at the next World Congress on Thyroid Cancer which will be in London in June.
Caroline writes: I really had no idea what to expect never having been to a medical conference before. It was a very enlightening couple of days. All the people we spoke to were extremely positive about the organisation and were very happy to talk about what is needed to make parathyroid patients’ lives better. It’s obvious that there’s a lot of different opinions about most things and I got the impression from the surgeons that some (maybe many) doctors don’t recognise post op chronic hypoparathyroidism. But Parathyroid UK clearly is making a difference so we just have to push on.
Society for Endocrinology BES
Harrogate, November 2022
Mandy writes: It was an honour to represent Parathyroid UK at the SfE BES2022 conference in Harrogate. After a turbulent few years it was fantastic to be able to be there again – raising awareness, catching up with our medical advisors, attending talks to keep up with the latest research and chatting with doctors, nurses and students from all over the world. It was lovely to be able to meet up with people from all the other patient groups that I’ve gotten to know over the years as well! As always, I’m very grateful to the Society for Endocrinology for giving us the opportunity to attend such a brilliant and productive event.
Dr Marian Schini from Sheffield asked how to manage normocalcaemic hyperparathyroidism, what do we know about it and what still needs to be researched?
You can read her abstract here. In summary, more research is needed but meanwhile the recommendation is to ‘observe and follow up these patients with blood tests and BMD measurements.’ I agree with being careful to correctly identify the condition and am aware that research and data is limited, but I feel that listening to the patient should be very important here. Symptoms and quality of life should be well considered during treatment discussions.
Dr Kreepa Kooblall, on Prof Raj Thakker’s team, presented new research on AXT914, a calcilytic compound for Autosomal Dominant Hypocalcaemia Type 1 (ADH1) for which there is currently a high unmet clinical need for better treatment. This was a very informative and exciting presentation and I am very hopeful for continued positive results as this could be a life changing treatment. There was also a presentation by Sandra Halim on ‘The management of ADH with CaSR mutation in pregnancy and breastfeeding.
If you haven’t seen the comic on Primary Hyperparathyroidism its worth a look. It was fascinating to see the amount of work and research that goes into these comics and to find out that they are mostly made by students and junior doctors in their own time. It seems to be a very effective way to reach people and is excellent for people who learn differently. Congratulations to Dr Punith Kempegowda for winning the SfE Teaching Achievement award!
Congratulations also to our very own Professor Karim Meeran who deservedly won the Outstanding Clinical Practitioner Award this year. His award talk was about how previous research on the effect of T3 has been misleading and how to successfully withdraw T3 from specific patients who have been wrongly prescribed and are still suffering. This will be a controversial issue for some patients. I agree that patients should be protected and must be careful of buying and taking things they don’t need. However, although the placebo effect is real and appears to be very strong here (and of course cost must be considered), I would still prefer T3 to remain an option if all other factors had been thoroughly investigated. Read the abstract here
This was very well presented and Professor Jeremy Turner was extremely engaging as always. Despite being quite technical at times, he made it easy to follow and the process of elimination during diagnosis and the testing pathway was well explained.
Perimenopause can cause severe calcium issues for people with hypopara and is frequently misdiagnosed in cases of hyperpara. Dr Annice Mukherjee gave a talk on the Clinical Management of Menopause, an overview of current national recommendations, implications of greater awareness and new treatment. She also gave a presentation on Menopause : it’s not just a hot flush‘ to the Nurses Session.
It was fantastic to see the progress being made with this initiative and to know that the desire for improvement and standardisation is so strong. It’s excellent news that the Society for Endocrinology plan to run courses for endocrine specialist nurses.
CALCIUM HOME TESTER
It was great to see a presentation of the work done by Mr Tom Kurzawinski regarding a home testing device for calcium, particularly as Parathyroid UK provided funding towards this. It was a little disappointing to discover that further work still needs to be done to make this device accurate enough to use fingerprick sampling but also very heartening to hear that Mr Kurzawinski intends to continue this work and I am very hopeful for a patient trial in future.
An interesting poster for us was ‘Hypocalcaemia Driven by Proton Pump Inhibitors: An Increasing but Poorly Recognised Problem’ by Diba Debnath. If you are interested you can search for and read further abstracts on the SfE website.
SfE BONE & CALCIUM ENDOCRINE NETWORK MEETING
This meeting, for bone and calcium specialists and those with an interest like us, was largely about raising awareness about the network and what education and collaborations are needed to grow the group and disseminate knowledge. Emma Duncan, Professor of Endocrinology at Kings College London, is the new convenor.
SfE ENDOCRINE PATIENT SUPPORT GROUPS MEETING
All the endocrine patient group leaders meet regularly during the year on Zoom and face to face at the conference. I was pleased to be able to represent Parathyroid UK this year. Better care and understanding of our rare conditions by GPs was the main topic of discussion. We spoke with SfE about how we might collaborate with GPs and help raise their awareness of our endocrine conditions. As a start, a footer will go out on all consultant letters to GPs to inform them about our groups.
- Next year’s BES will be in Glasgow