This International Women’s Day we want to raise awareness of pituitary conditions, so that everyone gets a quicker diagnosis, especially taking into considering the issues that women face. Gender bias has a significant negative effect on medical diagnosis and the quality of healthcare women receive, leading to substantial delays in diagnosis.
Shelley’s Story
2008 – I was 30 years old, super active, working as a primary school teacher in London’s East End and embracing life to its fullest. It was during the summer holidays in August (sitting on a beach in Cornwall) that I noticed there may be a problem. Having tried surfing for the first time, I realised that my muscles just didn’t feel as powerful as they should. I had always been a strong swimmer and that day there was a serious lack of ‘juice’ in my legs and arms. And it carried on the next day and the next after that. In fact, since that first feeling, I have gradually lost all muscle tone across my body. I have yet to regain pre-2008 strength.
In hindsight, my Cushing’s Disease was and is pretty much textbook, but that’s the thing with rare diseases, there simply isn’t enough awareness and experience (and probably textbooks) to connect the dots. This will come as no surprise to fellow ‘Cushies’ but it took another 11 years to get a satisfactory answer to that initial ‘niggle’. And boy did we go around the houses!
The next concrete physical symptom presented in 2009, a few months after the beach moment, which was mild galactorrhea (excess breast milk). My GP and I ruled out lumps and pregnancy, so it was clearly hormonal. I was referred to St Bart’s Endocrinology Clinic (my local since I was based in LB Tower Hamlets).
In 2010, an MRI revealed a prolactinoma. Interestingly, I had passed a rather painful kidney stone around the same time. I had ALSO started gaining weight and was simply unable to shift it despite no change in a healthy lifestyle and always being of a medium build. Oh, if I’d known then what I know now about those early warning signs…
I became a regular at St Bart’s for an annual MRI and I was on cabergoline for the ‘prolactinoma’. This regimen would continue for another four years. The pituitary adenoma was deemed stable, benign and not really increasing in size. I was however still gaining weight relentlessly. By now I also had severe acne and facial hair. I repeatedly raised concerns about these other symptoms but they were always dismissed. The insinuation being that they were a separate problem and it must be my diet and lifestyle. I accepted this as a possibility and spent much time experimenting on myself. To no avail of course.
By 2015, my body was clearly in crisis. Hypertension and oedema, along with the ever-increasing weight meant that life was getting very uncomfortable and there seemed no way to stem the tide. The accompanying fatigue, anxiety and severe insomnia were rendering me unable to work full-time. This was untenable and unsustainable. Something needed to change so I decided to take radical action.
I grew up in South Africa. I have dual nationality and familial support in my hometown of Durban. There is high quality private healthcare available there, so I decided to move back for a patch to explore options in a different context.
Upon arriving in SA, my new medical team became rather obsessed with a diagnosis of PCOS. This has since been entirely thrown out. I’ll never know quite what made a highly-qualified radiographer, GP and eminent gynaecologist so sure of something which was untrue, but so certain they were, that I took unnecessary medication for four years and of course, nothing got better.
In May 2019, fed up and fatter than ever, I returned to London. It was crunch-time essentially. Get well or give up! In truth, giving up just doesn’t exist in my DNA so it was only ever option one. I spent a couple of months doing one last work contract to fill up the coffers, find some digs and get ready to take on the NHS one more time.
I was now in Barnet, North London. I saw my new GP on 19 August 2019. I used a very steady, low voice and told him in no uncertain terms that we were going to figure this out. And lo and behold we did!
As ever, all diagnostic journeys start with a blood test. The now very familiar ‘general hormonal screening’. I duly produced a vein and crossed my fingers that my body was finally ready to reveal its secret. In the end it was my extraordinarily high testosterone levels that broke the levee. They got the entire GP practice in a right panic. The first few theories were fairly dire and I was essentially told to put my affairs in order. Several referrals and a month of tests later, most of the list was ruled out and I was back where I had started a decade ago.
It was mid-October and one of the endocrinology team at Barnet Hospital looked at me, looked at my notes and said “It’s clearly neither a prolactinoma, nor PCOS. I’m thinking Cushing’s Disease – follow me’. We headed straight to the day clinic to get my urine test jug, book a Dex Test and get the MRI in the diary.
Fast forward to 17 February 2020, via a January IPSS, and I was waking up from successful transsphenoidal surgery at the National Hospital for Neurology and Neurosurgery. A small bout of diabetes insipidus and 12 nervous days waiting for my cortisol to drop, and I was home on 29 February -just managing to dodge Covid hitting hospitals, and in time to lock down with the rest of the world – phew!
Job done right? Well no. As any ‘Cushie’ will tell you, after the fight to get believed, comes the second fight.
Recovery
In a nutshell, I was on the couch or in my wheelchair, living the horrors of cortisol withdrawal, drug replacement and tapering, for 11 long months. It almost got too much after three months when a bout of Bell’s Palsy hit. Some up-dosing, an emergency break to Yorkshire for country air and on 28 June, I woke up and felt 20% better.
Looking back, I guess that was the first bit of pituitary function returning. This was followed by another major improvement on 9 October. Again, I simply woke up and knew that I could walk further, stand for longer, eat more and concentrate on higher level tasks. This spurred me on to complete the weaning process and take my final HC tablet, with the support of volunteers at The Pituitary Foundation, on 8 January 2021.
I even sailed through a very nasty gallbladder infection in March. No crisis and no need for up-dosing. This gave me the confidence to make a phased return to work in April of this year. I’ve just managed three months of teaching, working up to a solid three days a week by July. I’m a little battered but smiling.
As for my Cushing’s symptoms, I’m still fat but every so often the odd gram drops off (four kilograms in 18 months so far). My hair is finally thickening out and my skin has never looked so good. Currently, I’m working on bringing my blood pressure down and improving my sleep cycles.
I guess that the next few years will continue to be a steady climb/swim towards optimum health. Full recovery is in my sights and I count myself very lucky in that regard.
I aim to be surfing again by my 50th birthday. See you on the beach!