My name is Sharon, I am 59 years old. I have Surgical Induced Hypoparathyroidism, following a Total Thyroidectomy for a benign Retrosternal goitre.
This was diagnosed following symptoms of a choking feeling and the goitre was confirmed benign on Ultrasound and cytology. My surgery was 8 years ago.
Being a nurse, I extensively researched Surgeons, and chose a Specialist Endocrine Surgeon, who came highly recommended.
At my first consult, I was advised of the risks of surgery, those being:
Low Calcium levels
I might add here that despite being a registered nurse I knew nothing about Hypoparathyroidism, and when the surgeon told me that I may require Calcium tablets for the rest of my life, I thought, “that’s the least of my problems”, how wrong was I ?
I duly signed the consent form, stating that I was aware of all the Post-operative risks, and wished to proceed.
The day after my surgery, my surgeon told me that all went well and that he had Auto transplanted two Parathyroid glands into my neck. I later found out that in fact there were 3 parathyroid Glands in the specimen sent to Pathology.
I had a ‘Stormy’ Post-operative period, in an attempt to stabilise me so I could be discharged. Six days later, I was discharged on Caltrate, Rocaltrol and Ostelin, to be followed up by my GP for regular Serum Calcium monitoring. My Endocrine Surgeon discharged me. My GP knew nothing about Hypoparathyroidism.
I experienced Hypocalcaemia symptoms the very next morning, I began to experience tingling around my lips and in my fingers, my Corrected Calcium level was 1.5 (Normal Lab values recommend a range of 2.5 – 2.60). A Calcium infusion was commenced, , however, the rate at which this drug was being administered to me was too fast- I experienced rapid heart rate, headache, felt faint and had a feeling of ‘Impending doom’. A ‘Code Blue’˜was called, in case I needed resuscitation. They eventually slowed the Intravenous rate down, and my symptoms dissipated.
I was kept in for 6 days, and discharged with a Corrected calcium of 2.11. The Surgeon prescribed 3 Calcium tablets 3 times a day, and 3 Calcitrol 0.25 microgram tablets 3 times a day- He discharged me into the care of my GP. The medication, (which unknown to me was an extremely large dosage), hence 2 days later I was in ED Resus again, this time with HYPERCALCAEMIA.
My surgeon was contacted and despite my Corrected Calcium being 4.3, he advised that my symptoms were NOT endocrine or Surgery related, he suggested I saw a Neurologist.
I continued to be symptomatic, requiring frequent visits to ED for Calcium Infusions, and eventually referred to an Endocrinologist, whom in turn referred me to another Endocrinologist who specialised in Calcium and Bone Metabolism. I continue to be treated by him, and I am now on Parathyroid Hormone Replacement Injections daily called Forteo- Teriparatide 1-134,as my condition deteriorated.
I won’t bore you with all the’Referrals’ to specialists I was sent to, suffice to say it consisted of:
‘Epilepsy Specialists – I was subjected to a 5 day admission wired to an EEG, to exclude Epilepsy- Excluded
‘Psychiatrists – It was suspected I had a condition called ‘Conversion Disorder’“ excluded
For me, the major disabilities are:
processing thoughts – ‘Brain Fog’
Tetany / Jerking of all limbs
Prior to my surgery, I was a fully functioning employee, as a nurse. I have been nursing since I was 16, and now am 59. Nursing is the very ‘Core’ of me. I was also a wife, mother, grandmother and friend to many. I used to be quick witted, happy and outgoing. I used to be active, and enjoyed planning family holidays. Now, I can no longer function in my role as a nurse as I once did before surgery, and recently have had to resign secondary to not being able to meet the ‘Physical Demands’ my profession calls for. I am not entitled to any benefits.
My Family now has an enormous burden to manage, coping with the daily fluctuations of my calcium levels, the subsequent symptoms and deteriorating cognition and personality. My friends have diminished as I can no longer commit to catch ups’, as I cannot guarantee I will be well on the day.
We don’t go out much anymore, and don’t plan holidays too far from an Emergency Department, in case I get sick and need lifesaving Calcium Infusions, to stabilise my mineral status.
This condition has ‘Robbed’ me of the very essence of myself.
I founded the Australian Organisation of Hypopara Australia in 2011, after feeling completely alone and that I was going Crazy. Liz Glennister from Hypopara UK and James Sanders from the US Hypoparathyroid Association helped me immensely in setting up what we have today. The Hypopara Australia site and Facebook group continues to grow, but will be an excellent resource centre for new and experienced Hypopara’s. We now have a very committed team to raising Global awareness and joining other groups around the world in educating the medical community of the ‘IMPACT’ of this condition.