• 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

Natalie

Natalie has autoimmune polyglandular syndrome


I was a very sick child and was in and out of hospital all the time. It started when I was about one year old and my mum noticed I was acting strangely. I would stare into space for ages and topple over more than was normal. As I got older the staring carried on and I was also ignoring everyone when they spoke to me as if couldn’t hear them. My hands would go into spasm and I would drag my leg when I was walking. Once I started school the teachers complained that I was daydreaming and that I was behind in class. I was tested for deafness but the tests said my hearing was fine. Then I started having seizures and no one could put their finger on what was wrong, until one night, when I was about six, I had a very high temperature and sweating and I had a grand mal seizure. I was taken straight to hospital where they tested me for everything and concluded I must have adult epilepsy but luckily for me a visiting professor came along. He walked in and tapped my face and said ’she has hypoparathyroidism!’.

From that day on I was treated and given medication and all the pieces came together for my parents, they now knew that I might have had hypoparathyroidism from birth which would explain the staring and toppling over. The doctors said it would have been ’mini-seizures’ and that my brain would just shut down for a couple of minutes. Because of that I missed almost everything I was taught in school, so I had a lot of catching up to do.

For a few years I was taking about 11 Sandocal tablets a day plus AT-10 and I was getting bloods tested weekly at the hospital. The doctor became concerned after a while because of the amount of sandocal I was on so he scanned my brain and my kidneys and found out there was calcium deposits in both so I was started on Alphacalcidol and only took Sandocal if I needed it which was great for me as I had nightmares about the stuff. My mum and dad tried everything to get me to take it – bribery, mixing it with juice, and telling me how important it was, but I hated the stuff and still do.

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!

My calcium stayed under control for a while, but then there was the damage it had done to my teeth to repair! I had to have 11 teeth taken out in hospital and spent many years in the dentist’s chair getting drilled and having crowns put on and even with all that my teeth were horrible. I was bullied in school, you can imagine how cruel they were. I’m still having lots of work done on my teeth but I am still traumatised from all the experiences I’ve had with dentists.

Later I found out I had hypoparathyroidism as part of autoimmune polyglandular syndrome. During my teens I found out that my ovaries had failed and that I couldn’t have my own children, when it had always been my dream to have a big family. When I was 18 I just spiralled out of control. My way of dealing with the pain was to party night and day and I would hardly ever take my medication. I was hardly sleeping too. Sometimes my calcium crashed and I would collapse or have a seizure and end up in hospital on drips. This carried on for about a year or so and I was in and out of hospital every couple of weeks until I realised how dangerous it was, and stopped. Now I take better care of myself, I eat right and party once a month if I’m lucky. I’m not willing to give in to hypoparathyroidism and stop having fun and being a normal young woman, but there is a line that I wouldn’t cross now, for example I wouldn’t not take my medication as I now understand how important it is, and I’ve learned to eat and cook very healthy meals which I think helps me control my calcium levels.

I’m now 26 and feel like I’m in control of my hypoparathyroidism now. Sometimes I know things the doctors themselves don’t know. I find it a very interesting condition, and I tell anyone who will listen about it and try and raise awareness and help people understand as much as I can as all of us with hypoparathyroidism are learning new things about our condition daily.

As of right now I couldn’t be happier with my life, I’m in control and loving it! I’m now married and we are trying for a child with IVF. And I’m writing a cookbook to raise money for HPTH UK!

On World Hypoparathyroidism Awareness Day Natalie’s message is: ‘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!’

more stories
« Bridget
Isabel »

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.