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    Hypoparathyroidism

     

    Read our Quick Guide to Hypopara

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Our wish for 2022

31st December 2021

We wish you all a hopeful and healthy New Year. With a major national review of endocrinology management out recently and new guidelines on hypo- and hyperparathyroidism soon to be published as well as a patient/clinician collaboration on what the future of endocrinology might look like AND a home tester trial in the offing 2022 is definitely looking brighter for parathyroid patients.

We will be working with other patient groups and the European Society of Endocrinology to further understanding of hypoparathyroidism. We bring you the  words of Andrea Giustina, former President of the ESE, who sums up all our hopes for the future when he tweets:  

“A wish for 2022 is that parathyroids are ALWAYS preserved during thyroid surgery to avoid serious systemic complications due to persistent hypoparathyroidism which is still incredibly thought to be easy to manage with low clinical impact! It is a pleasure and honour to be at your side close to persons with hypoparathyroidism advocating at every level for necessary prevention and optimal management of this severe and invalidating disease. ”   

After so many years of raising awareness about hypopara it means so much to have our plight publicly acknowledged by those few specialists who have truly understood it’s impact. 

We will continue to campaign for better diagnosis and treatment for primary hyperparathyroidism and working, in particular, with GPs to raise awareness. Last month, findings from a huge study on 75 year olds indicated that parathyroidectomy is associated with lower fracture risk among older adults with PHPT and should be considered for this age group.  Guidelines were published this year in Germany and a new consensus statement from Australia has just stated that

Parathyroidectomy is the only definitive treatment and is warranted for all symptomatic patients and should be considered for asymptomatic patients without contraindications to surgery

We hope studies like this will help to finally debunk the long held practice of ‘watch and wait’, replace outdated guidelines.

Our greatest wish for all of us, whether for those living with hypopara for the rest of their lives or those who have been living with undiagnosed hyperpara for many years, is for endocrinologists to take heed, to learn about our conditions, acknowledge our symptoms and work with us to help us gain some quality of life. 

Meanwhile we will continue to support your in our groups, send all our love to those who  have been affected by Covid and wish you all a safe and healthy 2022.

Happy New Year!

 

We are proud to be affiliated with:

ESE logo

Our information is also endorsed by:

BMA logo
British Thyroid Association
World Hypopara Awareness Day logo

We are members of:

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Genetic Alliance UK
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Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

Let’s not forget that 75% of patients living with #hypoparathyroidism suffer a double whammy post thyroidectomy when they become hypothyroid AND hypoparathyroid. #WorldThyroidDay2023 twitter.com/physorg_…

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10:22 pm · 25th May 2023
Twitter
BTF Thyroid
BTF Thyroid
@britishthyroid

Peri/menopause added to an existing thyroid condition can make it a challenging time for some midlife women. We’ve worked with Prof Annice Mukherjee on some new resources to help Read our article ↘ btf-thyroid.org/thyr… #WorldThyroidDay #menopause #perimenopause #thyroid pic.twitter.com/qIKS…

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10:10 pm · 25th May 2023 ·
Retweeted by Parathyroid UK
Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

“The causes of death in 12 patients appeared to be unrelated to HP but we found a high prevalence of chronic organ damages/comorbidities related to it in this group. Less than 25% documented HP correctly in the discharge letters, which indicates a high potential for improvement.” twitter.com/sociedad…

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6:29 am · 18th May 2023
Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

The ESE and affiliated patient groups were able to meet online and in person at the #ECE2023 this morning to discuss EDCs, drug shortages and future events. pic.twitter.com/TWAa…

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9:32 pm · 16th May 2023
Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

It’s been really encouraging to see so much great work going on into #parathyroids - and to be able to see it all online. Thanks to everyone and to @ESEndocrinology #ECE2023 pic.twitter.com/aMYZ…

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9:21 pm · 16th May 2023

Read our quick guide to hypoparathyroidism

All about hyperparathyroidism

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