• Skip to primary navigation
  • Skip to main content
  • Skip to footer
Parathyroid UK Homepage

The national voice for people living with parathyroid conditions

Helpline 01342 324091
  • Donate
  • About us
    • Our Teams
      • Board of Trustees
      • CEO & Management Committee
      • Support Team
    • Our Medical Advisors
    • Our history
    • Annual reports
    • Contact Us
  • Shop
  • News
    • Latest News
    • Newsletters
  • Home
  • Hypoparathyroidism

    Hypoparathyroidism

     

    Read our Quick Guide to Hypopara

    Suspect you have hypopara?

    Recently been diagnosed with hypopara?

    Find out more about hypopara

    What is hypopara?

    Causes of hypopara

    Diagnosis of hypopara

    Symptoms of hypopara

    Treatment of hypopara

    Related reading

    Thyroid cancer

    Thyroid surgery

    Related conditions

    CaSR

    • A quick guide to hypopara
    • Suspect you have hypopara?
    • Recently been diagnosed?
    • Causes
    • Diagnosis
    • Symptoms
    • Current Treatment
    • New Treatments
    • Thyroid cancer
    • What you should know before – and after – thyroid surgery
    • Calcium-sensing Receptor (CaSR)
    • Related conditions
  • Living with Hypopara
    • Get support
    • Self Help Guide
      • Understanding the basics
      • How to manage your calcium levels – practical steps
      • Understanding your tests
      • Understanding your medication
      • Diet in Hypoparathyroidism : general guidance
        • Diet in Hypoparathyroidism Part 1 : Calcium
        • Diet in Hypoparathyroidism Part 2 : Phosphate
      • Exercise
      • Employment and Benefits
      • What else can I do to help myself?
    • For Women
      • Your hormones and calcium
      • For our hypopara mums
      • Your pregnancy, birth & breastfeeding journey
    • For Parents
      • Fertility and starting a family
      • My baby has hypoparathyroidism
      • Looking after children with Hypopara
    • Emergency ID items
    • Patient stories
    • Hypopara patient videos
    • Hypopara patient podcasts
  • Hyperparathyroidism
    • Support
    • Your parathyroid glands
    • Primary Hyperparathyroidism
    • Secondary Hyperparathyroidism
    • Tertiary Hyperparathryoidism
    • Parathyroid cancer
    • Hyperpara Patient Videos
    • Patient stories
  • Get Involved
    • Become a member
    • Clinical Trials
      • Current clinical trials & studies
    • Donate
    • Buy a Gift
    • Shop
    • Fundraise for us
    • Sponsor a fundraiser
      • World Hypopara Awareness Day 2022
    • Support Groups
  • Resources
    • Patient information leaflets & other publications
    • Support Groups
    • Emergency ID items
    • Find a Doctor
    • Guidelines
    • Key Research on Hypoparathyroidism
    • Newsletters
      • World Hypopara Awareness Day 2021
    • Key Research on Primary Hyperparathyroidism
    • Useful links for patients
    • European and Global Hypopara organisations
    • Health Organisations
  • Join us
  • Medical Professionals
    • Our Medical Advisors
    • Guidelines
    • Clinical trials & studies
    • Order resources
    • Learning resources for healthcare professionals
      • Hypoparathyroidism for professionals
      • Hyperparathyroidism
      • Patients’ lived experiences
    • For Endocrine Nurses
    • For GPs
  • Get support
  • Self Help Guide
  • For Women
  • For Parents
  • Emergency ID items
  • Patient stories
  • Hypopara patient videos
  • Hypopara patient podcasts

Des

After a long day of teaching, I was standing in a crowded tube making the all too familiar commute back to my then home in Acton Town, in Central London. I’d been unwell for most of the day, and this feeling that something was not quite right had been plaguing me for many months. I’d been experiencing muscular aches and pains, exhaustion, stomach cramps and a frightening mental fogginess paralysing my ability to focus on my work. My legs were trembling. I’d been to the GP several times, but the doctors always sent me home, assuming that whatever it was would probably go away by itself. One of the doctors I saw believed I was experiencing depression, but I never felt depressed.

As the train doors opened and the passengers spilled out onto the platform, my legs gave way entirely. I lay with my face pressed against the cold, grey platform floor, listening to the centipede of commuter feet around my head. Shocked and confused by my legs’ reluctance to cooperate, nonetheless I was determined to make my way home. I crawled for several metres along the ground, up and down two flights of stairs, to catch my connecting train on the adjacent platform.  When I eventually got to Acton, I crawled for half an hour back to my house. I removed the keys from my bag and tried to reach the keyhole, but it was too high. I felt like a baby, arms outstretched, in a futile attempt to grasp the cookie jar on the kitchen counter. After several minutes of banging my fist at the door, my then-girlfriend let me in. I remember being amused by the whole affair, no doubt still in shock. ‘My legs have stopped working’, I laughed.

After several months in bed and many trips to the hospital, I was diagnosed with hyperparathyroidism, the result of a rare genetic condition. It was a relief to finally have a diagnosis for the overwhelming exhaustion and the unexplained aches and pains. I was told I needed minor surgery – a simple procedure involving the removal of all but one-half of my parathyroid glands – but that the waiting list was six-months long. Fortunately, my employers, keen for me to get back to work, paid for me to go privately.

My surgeon explained that once the glands were removed, I’d “feel as right as rain”. What he neglected to mention was that I would never feel quite “normal”: that I would have to spend the rest of my life feeling permanently under the weather, that a host of other peculiar symptoms would manifest in the years after my operation, and that from then on, my life would be a daily struggle with exhaustion. And although I’ve achieved a great deal since my operation, more than I did before my diagnosis, I would come to realise that some of those battles I would have to learn to lose and days would be lost to my bed. Many have referred to this condition as an invisible disease: I look “normal” and can do all the things I used to do at least some of the time, but day-to-day my life is that much harder. I’ve learned to fake being healthy.

I was finally diagnosed with post-surgical hypoparathyroidism about 2 years after my operation. Until then, I had only been given calcium tablets but eventually my GP put me on calcitriol (after a bad reaction to alfacalcidol) which made a big difference.

After months of frustrating conversations with endocrinologists, many seeming apathetic towards my concerns about my post-operative health, I stumbled across a Facebook group set up by Hypopara UK. The group consisted of people from various walks of life, young and old, all wanting to know if others had similar experiences with a bizarre assortment of symptoms. Like me, many were frustrated by the absence of aftercare following their surgical procedures. Others, whose sons, daughters, husbands and wives were born with the condition, were keen to discuss their experiences. We shared test results, information about medication and nutrition, and lifestyle advice. It was a revelation to see not only the diversity of people coping with the condition, but also the similarity of the stories. Like me, many others were confounded by the lack of information about the disease.

By chance, I recently met someone who has just been diagnosed with the condition. They seemed relieved to hear about my experiences. I told them about the wonderful work of Hypopara UK, and of Liz Glenister in particular, and the usefulness of Hypopara UK’s Facebook group. 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. And the group is a rich source of practical advice, some of which has been positively transformative for my quality of life. Even during those periods when my involvement is sparse, it is of great comfort to know that there is a place where I can go for friendly support.

more stories
« Dr Denise Adams (GP)
Ben’s family »

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:

Rare Diseases UK logo
Genetic Alliance UK
National Voices logo

Footer

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_…

reply retweet favourite
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…

reply retweet favourite
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…

reply retweet favourite
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…

reply retweet favourite
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…

reply retweet favourite
9:21 pm · 16th May 2023

Read our quick guide to hypoparathyroidism

All about hyperparathyroidism

Parathyroid UK
6 The Meads
East Grinstead
West Sussex
RH19 4DF

Contact us

Helpline: 01342 324091

© 2023 Parathyroid UK · All Rights Reserved · Privacy · Disclaimer · Site by Charity & Biscuits.