Patient perspective | Cushing’s – patient no.2

Patient perspectives can be very useful learning opportunities.

We know not every patient walks through the door with a textbook set of signs and symptoms, and hearing directly from patients about the progression of their condition can give us a greater understanding of complications.  We can also use these insights to gain empathy about the frustrations and struggles different patient groups may endure – in this case a patient with Cushing’s disease.

My journey started in 2012 when I visited my ENT consultant complaining about compromised taste and smell, and as I’d had previous sinus surgery he ordered an MRI. The result of this showed clear sinuses but a 1mm pituitary adenoma. I was referred to an Endocrinologist who ordered various tests which claimed that the pituitary wasn’t secreting excessive hormones. I would be reviewed on a yearly basis.

In February 2014 I had a total knee replacement; the other one had been replaced previously. I had already been diagnosed with osteoarthritis & rheumatoid arthritis was confirmed by a hand ultra sound scan although blood results were negative for the RA factor.

Following my knee surgery it was noted that my BP was elevated. I had been diagnosed with hypertension several years previous and was already on hypotensives. For several months my BP was monitored by my GP and more medication introduced however the BP was fairly resistant to medication. I frequently stated that this wasn’t normal for me; I ate healthily, (my husband being an insulin dependent diabetic) exercised, didn’t smoke and drank little alcohol. Eventually I was referred back to my endocrinologist who at that time was slow to respond. In the end it was my rheumatologist who felt that I exhibited signs of Cushing’s . She started the process of testing. My weight had increased but I felt that was due to not being able to exercise so much since the knee replacement. I have always been fit, walking the dogs for an hour plus each day; holidays were hill walking and swimming.

My endocrinologist took over the testing process and Cushing’s was confirmed in November 14. However it took a while to see the neurosurgeon who required more testing; he also wanted to do the surgery with an ENT surgeon due to my previous sinus surgery. Eventually it was scheduled for September 15, the surgeons were only allocated 2 days a month for theatre time.

I had gained nearly 2 stone in weight, not as much as some people. My muscles had become very weak and I had to resort to using a mobility scooter to get out as I couldn’t walk very far. I was on four different medications for my BP, I was being investigated for sleep apnoea prior to the surgery. I was diagnosed with sleep apnoea in November 15, stopping breathing 72 times an hour; I now use a CPAP machine.

Surgery went well although initially my cortisol levels were still quite high so they weren’t convinced that the surgery had been successful, however the levels did come down. Recovery is very slow, you’re not given enough information about the recovery, initially I had thought that the tumour would be removed and I would recover quickly. This hasn’t been the case. I am now nearly a year post op,  my BP is still elevated, I haven’t lost weight either. I am still struggling with muscle weakness even though I am actively trying to exercise with hydrotherapy. I take 20mgs of replacement hydrocortisone, taking it trying to mimic the circadian cycle.  A day curve showed that I needed replacement HC. I am due to have more tests soon to see what is going on, he plans to do saliva tests throughout the day.

Although my endocrinologist is good (he thinks outside of the box) I have had the greatest support via the internet community, learning far more there than from any doctor. Most of the groups are US based but the UK based Facebook group has 103 members which just goes to show that it isn’t as rare as we’re led to believe and that people are looking for support!  

We have another perspective on Cushing’s disease here written by another patient. On this post we have included some notes on the condition that you will find useful for you revision.

We are going to publish more patient perspectives with revision notes soon so please follow our blog or sign up to our newsletter to keep up to date with new posts. If you or anyone you know would like to contribute their story then please email us at [email protected] to find out more. All information is treated confidentially.