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    Hypoparathyroidism

     

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Stephanie

Stephanie writes: I’m a mother of four children. The first two children were born before my diagnosis of thyroid cancer in 2008 and my last two with my condition hypoparathyroidism. My story started when I was 24. I had two healthy children aged six months and two years old.

“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.”

The day after my son’s second birthday I was diagnosed with papillary thyroid cancer. This came as a huge shock to my whole family and I was faced with how aggressive the surgery and treatment would be. I was informed that not only would I need a total thyroidectomy but a complete radical neck dissection taking away the muscle in my neck, my left jugular vein and lymph nodes and much more. Not only that but more surgery might follow involving taking away my voice box and oesophagus.


Having to deal with being told you have cancer is one thing but to have your children living with a mum who can’t sing or talk in a normal way was heart-breaking. However to my huge relief I recovered from a thirteen hour surgery to be told that my surgeon managed to save my voice box and oesophagus.

I felt so blessed and eternally grateful to my surgeon. My recovery was very bumpy. I spent the first couple of years in and out of hospital being treated for hypocalcaemia as during surgery my parathyroids were removed. Little did I know that these tiny pea-like glands have such an important role in your body’s function and now I had to take medication to help with the condition.

My career as a nurse has also helped me understand my condition even more and I’m in a fortunate position that if I’m ever unwell I’m in the best possible place. Also I have a fantastic support network around me and without my family I wouldn’t have got through it with two young babies at the time.

Fast forward six years and I’m now blessed with my third child Gabriel. I chose this name as it means God is my strength and I truly believe my baby is a miracle. My third pregnancy actually went rather smoothly. My condition was very well-controlled and my medication never required to be changed however after Gabriel was born I breastfeed him for 13 weeks and I began to feel suddenly unwell.

I decided to stop breastfeeding and with no warning my calcium crashed requiring me to be admitted to hospital for treatment. Unfortunately this was a huge mistake made on the endocrine side of things as they had failed to monitor my bloods or warn me of the effect of weaning off the breast and the implications that can have if you have hypopara.

This was a very difficult time for me as my treatment had to change in regards to my alfacalcidol and calcium being increased. Things began to improve and then to our absolute surprise my husband and I discovered I was pregnant again!! This pregnancy has been the hardest as my calcium and alfacalcidol have been increased twice so far. I attend a medical obstetrics clinic every three weeks where I have my calcium and thyroxine levels and urine checked.


Between 20 and 30 weeks pregnant was the most difficult as my calcium was low despite increasing my medication. However, the last few weeks things seem to have settled more and I’m having less tingling and numbness and other symptoms associated with hypoparathyroidism.

This time round I have made sure that in my birthing plan I require my bloods to be checked on admission when in labour and throughout and that I’m monitored closely post-natal to avoid any calcium crashes.

more stories
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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_…

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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…

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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…

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6:29 am · 18th May 2023
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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…

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9:32 pm · 16th May 2023
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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…

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9:21 pm · 16th May 2023

Read our quick guide to hypoparathyroidism

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