Turns out there was something wrong

The story of Shevaun

For the first 25 odd years of my life I struggled with brain fog, pins and needles, vertigo, insomnia, depression, anxiety and a general sense of never really feeling well.  I went to doctors but got dismissed or outright tools I was a hypochondriac.  So, I gave up and stopped questioning it, ignored symptoms and carried on for another twelve years.

Then, out of the blue, I started getting migraines with no history of migraine.  I was sent for blood tests and a CT scan which ruled out anything sinister (Turns out they were stress induced, I changed job and they went away!).  But, they did see some numbers and changes in my arteries that didn’t make sense for a healthy adult female in her thirties.  I was sent to the endocrinologist who asked me a battery of seemingly random questions, took enough blood to fill Elizabeth Bathory’s tub and made me do a 24 hour urine test (a delightful exercise).  At the end of it he told me I had this incredibly rare disease, hypoparathyroidism, made even rarer because I was not post injury or surgery.  To be told that most of my symptoms could be treated by simply taking (admittedly huge) doses of extra vitamin D a day and a high calcium diet was incredible.  

I’m lucky.  My case is very mild and, because I’ve always had it, my body has adjusted to deal with it.  I take my vitamin D every day and I have noticed a marked improvement in my well being.  I wear a medical alert tag to be on the safe side, in case I’m in an accident, and I am learning to monitor my own body and chug some yoghurt if I’m feeling symptomatic.  

The endocrinologist (or “endo” as they are affectionately known in our support group) has referred me for genetic testing to try and establish the cause, but it is possible it will never be known, which is fine.  

I can’t thank Parathyroid UK enough for their work running a support network and for campaigning on behalf of those of us with this condition (and for not forgetting those of us who aren’t post surgical!).  The network is incredibly supportive, and everyone has a good sense of humour and are there with advice or just a virtual shoulder to cry on.