The story of Carol
For years I experienced palpitations, night sweats and a pale face. I put it down to too much caffeine and sweats possibly the start of early menopause. (I was in my early 40’s) In 2015 I went to see my GP as I would have episodes of my heart racing, the feeling of my head going to explode and breathlessness that often resulted in vomiting. I was told it was panic attacks. As a result I was diagnosed with anxiety and depression, given anti-depressants and sent for counselling. At the end of 2016 nothing was working, my symptoms worse and I was signed of sick for 2 months with depression.
After I finished a counselling session where I ended up counselling my counsellor, I decided I needed to just try and get on with it and get back to work despite my symptoms worsening and the ‘panic attacks’ triggered with any kind of physical exertion and strangely laying flat on my back!
Spring 2017, I came down with a bad sickness and diarrhoea bug after working in the slums in Romania and ended up taking a month to recover. It was also discovered I had ridiculously high blood pressure and was pre diabetic.
My ‘panic attacks’ were now daily occurrences and more debilitating than ever with countless episodes in any one day. But my stubbornness made me battle on. I felt so Ill but even the doctor’s at work (I work in pharmacy for a GP surgery) insisted it was stress related! A couple of months later, I was now a full-blown diabetic!! I’ve always been fit and healthy and never overweight so was very upset about this!
In August 2017 I could no longer get out of bed without a ‘panic attack’ and knew something was seriously wrong. I begged my doctors and work colleagues as I knew something was wrong but to no avail.
Then on August 26th 2017, age 45, my body could take no more. I got up, had the usual ‘panic attack’ followed by vomiting. The last thing I remember is my hubbie taking away the sick bowl to clean. The next thing I know I’m laid on our living room floor with a room full of paramedics telling me I’d had a seizure. My blood pressure was off the scale and my sugar levels dangerously high.
What followed was an MRI head scan, which was clear, more blood pressure tablets and a referral to neurology. After 4 days in hospital and still no answers they attempted to send me home. I got halfway down the ward when I collapsed again. They explained to my worried girls who were taking me home that it would just be my blood pressure being a little low as I’d been in bed for a few days.
But I’m sure you’ve guessed right by now that actually it was dangerously high again and I didn’t get to go home.
What followed was talk of a rare condition (they didn’t say what) and wanted to do a 24hr urine collection. They sent me for an ultrasound on my kidneys the next day and that is when they accidentally found a 7.8cm mass on my right adrenal gland. The urine collection confirmed the diagnosis: phaeochromocytoma. Only one to two people in every million are diagnosed with this extremely rare tumour. One of the levels on the urine sample shouldn’t be higher than 500. Mine was 25,000!!
What followed was lots of new medication to stabilise and alpha block me and 4 weeks later I had surgery to remove both the tumour and my adrenal gland. My surgeon managed the surgery keyhole despite it being a large tumour, which actually measured 13.5cm by 9cm once removed!
I stayed in ICU for three days as my remaining adrenal gland took a while to wake up and begin to work after years of being dormant.
4 months after surgery I returned to work on a phased return and began Couch to 5k. I was no longer diabetic, BP normal, if a little low, on no medication at all and ran my first park run in June 2018.
I was sent for genetic testing. I thank God that the results showed I DID NOT have the type I could pass on to my precious girls.
I also returned to Romania leading an amazing team with my hubbie in October 2018.
To date, I ran my first 10km race in June 2019 and completed my 50th Park Run in 2020. It’s been quite a journey!
I have recently being under cardiology to make sure my heart is healthy after a few worrying symptoms and the results were normal! I also receive annual checks with my amazing endocrinologist for the rest of my life.
I firmly believe that I haven’t got this far to go backwards and will always seek to use my experience to help and encourage other patients, when diagnosed, with quite literally a one in a million tumour called Phaeochromocytoma.