• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • 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

Patient stories

Are you newly diagnosed with a parathyroid condition? Are you a medical student wanting to understand more about the impact of parathyroid conditions? Here, some of our members have written about their own experiences for you which you might find helpful. Use the filter to select the condition you wish to read about. If you’d like to share your story here we’d love to hear from you. Please contact us here.

  • Mandy

    I’d like to remind everyone just how important knowledge is. If all the doctors I’ve met along the way had more practical knowledge of HPTH, I might not have had such a hard time getting treatment.

  • 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

  • Ben’s family

    We were referred for IVF with the knowledge I had hypoparathyroidism but the fertility consultants did not investigate my calcium levels. Three failed cycles later we discovered some literature linking calcium with fertility and three months after my levels normalised we fell pregnant.

  • 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.

  • Dr Denise Adams (GP)

    I have realised how difficult it must be for patients to continue to trust their doctors when faced with chronic illness.

  • Shamso

    Without the support and advice of the other mums in the brilliant facebook support group during my pregnancy I don’t know where I’d be. The group empowered me to stand up for what I knew I needed, such as my birth plan. I had to fight all the way.‘

  • Jackie

    One Saturday I woke up in total body muscle spasms, an ambulance was called and I was taken to a local hospital for incurable diseases as they thought I had tetanus

  • Alfie

    ‘I remember thinking, ‘Oh it’s only low calcium,’ and we were given tablets and told he would live a normal life on this medication.

  • 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.

  • Claire

    I feel confident with my doctors. However, I do think you are left to cope on your own too much and in between appointments you have to manage things yourself, which is difficult as there is no home testing kit for calcium levels.

  • 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.

  • 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.

  • Emma

    It came as a terrible shock to be made so suddenly aware of my mortality and fragility when I was in my 20s. I have always said I don’t want hypoparathyroidism to define me but in reality it is a huge and permanent part of my life. I’ve lived a lot of half days

  • Fiona

    my new endo decided my calcium was too low and increased my Adcal from four to six tablets a day. I questioned her at the time but at this point I knew very little about hypopara because I was so well maintained on Adcal and when I was first diagnosed there was no info on it.

  • Sarah

    Calcium levels should be one of the standard tests for GPs. I would have been diagnosed possibly years ago if this was the case.

  • Gillian

    I went armed with information from the Hypopara facebook group and asked if my calcium tablets could be reduced, alfacalcidol increased and could I have some prescription vitamin D3 please? To my delight, my endo was very happy to comply.

  • Hannah

    You only have one life - see everything you want to and don’t let this condition take over!

  • 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.

  • 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 […]

  • Liz

    Before the operation I had no idea what the parathyroids were. They were never mentioned and there was no information available then to help me ask the right questions.

  • 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!

  • Isabel

    I was fifteen when I knew something was seriously wrong with me. My neck had swollen to twice its size and felt like a solid mass. My then GP didn’t believe I was sick and told me I was just going through puberty. It was only the protruding hard lump that had appeared in the […]

  • Natalie

    I feel like I’m in control of my hypoparathyroidism now. We need to live our lives with hypoparathyroidism and try and just be proud of ourselves. We are lucky we have doctors helping us and that we have medicine to treat it and maybe one day we will find a cure!

  • Bridget

    I went through surgery for one endocrine disorder and ended up with another

Primary Sidebar

Filter these stories

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
BTF Thyroid
BTF Thyroid
@britishthyroid

Patient feedback needed please: If you've been asked to complete a Low Iodine Diet before radioiodine treatment, please complete this short, anonymous survey -> bit.ly/3YOgSvc pic.twitter.com/cc62…

reply retweet favourite
7:45 am · 16th March 2023 ·
Retweeted by Parathyroid UK
Twitter
Mo Aye
Mo Aye
@MoAye

With our new generation. For the future of the #NHS #JuniorDoctorsStrike pic.twitter.com/zD2C…

reply retweet favourite
9:43 am · 15th March 2023 ·
Retweeted by Parathyroid UK
Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

We shall be following with interest #scarlessthyroid twitter.com/rammoort…

reply retweet favourite
10:42 am · 12th March 2023
Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

Happy #WomensDay to the thousands of amazing women living with horrible #parathyroid conditions and to all the women charity volunteers, NHS staff and society members who support them and work to improve their lives. @Soc_Endo @ESEndocrinology @BAETS_UK

reply retweet favourite
10:56 am · 8th March 2023
Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

Thank you @Isika_1985 for all the hard work by you and your team - and congratulations! 👏 twitter.com/Isika_19…

reply retweet favourite
4:51 pm · 7th March 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.