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    Hypoparathyroidism

     

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Patient stories

Here some of our members share their experiences of being diagnosed with, and treated for, rare parathyroid conditions. If you’d like to share your story here please contact us.

  • Ray

    There is still life with hypoparathyroidism. PTH (human parathyroid hormone) may not cure everybody, but it’s as close to it as I have come.

  • Al

    I asked my GP to refer me for a second opinion, knowing that I needed surgery, but he refused. I left the GP practice that day and joined my partners’ GP surgery. Within a couple of weeks, I had an appointment with my new GP who was very helpful and understanding

  • Des

    There are times, particularly when I have healthy periods, the last thing I want to do is to reflect on my chronic illness. But there are also times when I want to engage with people who understand—really understand—the unique challenges of this condition.

  • Stephanie

    I hope my experience will inform others and make them more aware. Never be afraid to ask and voice your concerns about being pregnant and having hypoparathyroidism.

  • Mary

    I had a blood test for vague symptoms, when my doctor noticed my calcium was slightly high. I was on the internet straight away looking for causes for high calcium, when I came across a site for hyperparathyroidism…. I couldn’t believe it when I read the list of symptoms … bones, stones, moans, and groans! Apart from kidney stones, I had the lot!

  • Jane

    In April last year I was lucky enough to get funding to try this drug as I was so difficult to manage on the other drugs. I am happy to say that since starting the injections my quality of life is hugely improved. My calcium level is much more stable, and as a consequence I can do much more of what I have planned.

  • Beryl

    I decided to get a second opinion and after doing my own research online I discovered the Hypopara UK and this is where I received the most helpful, understanding and positive advice that I could have had. This led me to make a private appointment with a consultant in endocrine surgery at the Hammersmith Hospital in London.

  • Jan

    Jan Cobley had surgery for hyperparathyroidism and now has hypoparathyroidism. But she doesn’t let it get her down, especially with her dog Cleo at her side! In 1999 Jan Cobley and her husband Jim had decided to invest in a rental property in Portugal when their plans had to go on hold while Jan was […]

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Parathyroid UK
Parathyroid UK
@ParathyroidUK

Delighted to announce that winner of the World Hypopara Day Party prize for best UK post by a child is Amelie-Eve. Congratulations to Amelie met our CEO Liz Glenister last week to receive her giant teddy. We hope you’re enjoying the bear hugs, Amelie! facebook.com/groups/… pic.twitter.com/vaDc…

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4:51 pm · 17th June 2022
Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

Hypopara patients from a record 48 countries joined our awareness day party this year! (27 last year.) We had over 3,000 views, reached nearly 7,000 people with posts from people with post surgical, autoimmune, idiopathic, genetic, HDR, PHP, congenital & ADH. #HypoparaDay2022 pic.twitter.com/ONcr…

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4:49 pm · 16th June 2022
Twitter
National Voices
National Voices
@NVTweeting

Today one of our members @ThyroidTrust have released a new T3 Prescribing Report, highlighting the poor access to T3/liothyronine📰 Read the report in full here👉bit.ly/3NM3NOb twitter.com/ThyroidT…

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11:04 am · 14th June 2022 ·
Retweeted by Parathyroid UK
Twitter
Omair Shariq
Omair Shariq
@OmairShariq

John Bilezikian provides an update on upcoming guidelines from the 5th Intl. Workshop on Hyperpara highlighting involvement of multiple groups inc. @TheAAES. Grateful for opportunity to contribute as a (very) Jr. member of the surgical taskforce led by @DrNancyPerrier #ENDO2022 pic.twitter.com/63oE…

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11:44 pm · 12th June 2022 ·
Retweeted by Parathyroid UK
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Joy Wu
Joy Wu
@JoyYWu

Congratulations to John Wass, MD, MA, FRCP, winner of @TheEndoSociety Outstanding Leadership in Endocrinology Award #ENDO2022 pic.twitter.com/vtIP…

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11:38 pm · 12th June 2022 ·
Retweeted by Parathyroid UK

Read our quick guide to hypoparathyroidism

All about hyperparathyroidism

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