The story of Crystal
My story started as many as 7 or 8 undiagnosed years ago. Silly,
Small symptoms, that went unnoticed, that were brushed under the carpet, and thought were down to other reasons!
After giving birth to my second child, I assumed my weight gain around my stomach was ‘baby weight’. I’d always had spots, but now I started getting unbearable acne, around my jawline and neck, so painful I found it hard to go out, found it hard to go to work. I went to gps about the weight and the spots. I tried creams for the spots, and gels, and tablets, and antibiotics. For the weight, they kept recommending ‘being more active’, I explained I had an active chef/managerial role which saw me doing 15,000 steps a day, the docs looked at me like they didn’t believe me! I was also competing in triathlons on a regular basis, and training often. They said I needed to eat better, and I said I was a chef who watched what I ate!
Next my periods completely stopped. I got tested for PCOS, went through blood tests and scans. They decided I didn’t have PCOS but then just dropped me, no follow up care. I was less than 35 and having increasing concerning symptoms with no answers. My weight was increasing, my joints and muscles were aching, then the migraines started! As I said, I would run, not hard or fast, but I would get a migraine that would last for 48 hours, debilitating. I kept being told I wasn’t hydrating enough. I couldn’t possibly drink any more water! I knew something was wrong. I started to Google, obsessively! In December 2020, whilst in lockdown, I had plenty of time on my hands, and even without the normal day-to-day stresses of my job, my symptoms were worsening, I found Cushings disease online and phoned my gp. They referred me to an endocrinologist, first appointment was April, but they started me on intensive testing. Cushings is extremely rare, with 1 in 1 million cases a year. Cushings disease is caused by a tumour on your pituitary gland which over producers cortisol. Cortisol is necessary to live, but too much will kill you, and I was slowly dying. My MRI before I’d even met my consultant confirmed I had a macroadenoma. Pituitary tumours are normally fairly small, less than 1cm, but mine was 1.7cm and extremely close to my carotid artery and visual fields. By the time I met my endocrinologist in April we knew I needed to prepare for surgery, but during covid, it was just when. Luckily my case was strong, and there was a centre of excellence nearby, I was booked in for September 1st, to rid me of the tumour. Long story short, surgery was complicated, and took 9.5 hours instead of 6, with a csf leak, and a week in high dependency unit, I was home, and in remission from Cushings. However, I swap one rare disease for another. I now have Addisons, as I currently have no ability to produce my own cortisol. I take steroids to live, and carry an emergency injection. I am not 1.5 years in from surgery and trying to reduce my dose age. There was no guarantee I would ever regain the function of producing my own cortisol, but it is looking good, and my numbers are steadily going up, so fingers crossed this time next year I’ll be free of the steroids. Though, you are never rid of Cushings disease, and recurrence rates are recorded in up to 46% of cases, therefore lifelong follow up is needed