• 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
    • Treatment
    • 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
        • Diet in Hypoparathyroidism : Calcium
      • 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
    • 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
    • Research
    • 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

Jackie

Jackie, who has four boys, has idiopathic (unexplained) hypoparathyroidism


The year was 1966 and I was six years old. I was experiencing the symptoms of a severe stomach bug, vomiting and diarrhoea, I couldn’t stand the sight of food – not even a picture or on television. When my mum was cooking dinner I would shut myself in my room because the sight and smell would make me heave. Meal times consisted of trying to make me eat, it was a living hell.  I constantly had an upset stomach and this caused severe blistering making it hard for me to walk.

My parents took me to see our GP as I was getting sicker and sicker but he told them there was nothing wrong with me.  I was sent to school every day but I would just put my head on the desk and go to sleep.  My teacher realised there was something wrong and would send me home, my parents would then take me back to the doctor again who would tell them nothing was wrong and that I was a naughty girl seeking attention so I didn’t have to go to school. No tests were ever done; this went on for a few weeks.

One Saturday I woke up in total body muscle spasms, an ambulance was called and I was taken to a local hospital (Westcliff-on-sea) for incurable diseases as they thought I had tetanus; by that time I was in considerable pain.  I couldn’t bear blankets touching me or even people talking around me as the noise hurt my ears. Here blood tests were done but I don’t think they knew yet what was wrong.


A paediatrician from the Southend General Hospital used to walk the wards and came across me.  He diagnosed me with hypocalcaemia and a calcium IV was set up. This worked temporarily but they could not sustain the level, so I was transferred from Westcliff to Southend hospital to his care.

The medication they gave me was Sandocal calcium with cod liver oil on top which was the vitamin D I needed to absorb the calcium. It did not go down well with a six-year-old but I would drink it after looking at it for hours.

After a while I was transferred to The Royal London Hospital under the care of an endocrinologist.  Sandocal and Calciferol were given. I was getting better but still survived on very small amounts of food, mainly chicken and cheese, and I would only drink Lucozade which was a brand new drink then.  I credit that for saving my life as it was all I could keep down when I was at my worst.


Today I try not to take the calcium supplements as they have damaged my kidneys, but I take as much calcium as I can from diet and top up with the calcium supplements at the end of the day so that I have around 800mgs daily and have one-alpha capsules (Alphacalcidol/Vitamin D).

In my teenage years my calcium levels were very erratic and I had mainly high calcium as I did not have the knowledge to adjust levels.  During my pregnancies – I have four boys – the calcium levels changed, but by then I could usually tell what was happening so they didn’t go out of control. By the third trimester of each pregnancy the calcium intake had to be tripled to cope with both the baby’s and my needs.

‘I often wonder what it’s like to be ‘normal’ but I can’t remember my life before hypoparathyroidism’

My condition is described as idiopathic hypoparathyroidism as they do not know the reason for my parathyroid glands failing. I have had genetic tests and it is not a hereditary illness in my family. I often wonder about being ‘normal’ but I have no recollection of my life before HPTH. I manage day to day almost instinctively feeling what amounts I need for the activities I am doing that day. I have dips and highs in levels but I correct them myself.


It would be nice in the future to have a home monitoring device as diabetics do to be able to check instant calcium levels in the blood, this would help with preserving our kidneys. I compare HPTH with diabetes but we do not get the same level of care, calcium is a very destructive mineral.

My kidneys are at stage 3CKD, and my wish for the not too distant future, would be the approval by NICE of parathyroid hormone for treatment of HPTH. This is what I need to make my body function normally.  You wouldn’t deprive a diabetic of insulin would you!

more stories
« Alfie
Shamso »

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
Thyroid Journal
Thyroid Journal
@thyroidjournal

The Results Are In! 2022 Top-Read Articles! What is the evidence to support #ActiveSurveillance vs #Thyroid #Surgery for #Thyroidcancer? ow.ly/7Qf350MwZt1 @AngelaLeung9 @Jasosamd @EndocrinologyM @OhioStateMed @hopkins_ent @UCLAHealth @UCSFMedicine #medtwitter #endotwitter pic.twitter.com/Glvt…

reply retweet favourite
7:28 pm · 24th January 2023 ·
Retweeted by Parathyroid UK
Twitter
British Association of Endocrine&Thyroid Surgeons
British Association of Endocrine&Thyroid Surgeons
@BAETS_UK

Spaces still available at the BAETS thyroid & parathyroid masterclass. Provisional programme attached, book a place soon! pic.twitter.com/lG1J…

reply retweet favourite
2:22 pm · 20th January 2023 ·
Retweeted by Parathyroid UK
Twitter
Radu Mihai
Radu Mihai
@RaduMiSurgeon

Looking forward to meeting trainees and Consultants with an interest in endocrine surgery at the annual BAETS masterclass in thyroid-parathyroid surgery due on 6th March in Birmingham. A day of lectures and case-discussions, meeting friends and mentors. pic.twitter.com/d8xD…

reply retweet favourite
11:03 pm · 12th January 2023 ·
Retweeted by Parathyroid UK
Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

pic.twitter.com/Q3fc…

reply retweet favourite
12:28 am · 22nd December 2022
Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

Parathyroids are glands too…. twitter.com/Your_Hor…

reply retweet favourite
12:42 am · 20th December 2022

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.