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.
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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 […]
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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.
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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!
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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.
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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.
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Bridget
I went through surgery for one endocrine disorder and ended up with another
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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.
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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
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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.‘
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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.
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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.
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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.
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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.
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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!
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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.
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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.
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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.
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Hannah
You only have one life - see everything you want to and don’t let this condition take over!
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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.
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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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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
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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.
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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.
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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