- Weight gain
- Sweating
- Psychological problems: depression, anxiety, insomnia
- Several skin problems: bruising easily, developing acne
Everyone had an answer for everything:
You’re putting on weight because you’re not eating right so just diet.
You’re sweating because you’re overweight.
You’re depressed because your weight gain has affected your self esteem.
Anxiety is normal at university.
Stress is what’s keeping you awake at night.
Everything is in your mind…
I have to admit, even I thought that maybe I was just “being a drama queen” and that it was a case of getting myself together.
So I started thinking about my “problems” and tried to figure out whether I really was to blame and what I could do about it. Weight gain is normal, but what isn’t, is gaining 20kgs (40lbs) in 6 months when you’re going to the gym regularly and eating a healthy, balanced diet! I also agree that with all the things I’d been through in the last few years (leaving stage school, living alone in London, going back to University etc.) it was normal that I might be a bit stressed, depressed and anxious, but what I couldn’t understand was that in fact, I was really happy with the direction my life was taking and I couldn’t explain why sometimes I just felt this overwhelming urge to cry or felt so anxious I would have a panic attack, or even woke up so fatigued and depressed that I didn’t even want to get out of bed! It just didn’t make any sense…
As a Psychology student, my first instinct was: Get help, deal with it yourself, it’s all in your mind. But as part of my studies, I also learned a bit about hormones and the effects these have on your body and mind. I’ll spare you all the technical details but basically I realised that everything I was experiencing was as if my hormones were out of balance, and I was right. The tumour on my pituitary gland (small gland located at the base of the brain) was basically making my body over produce the hormone Cortisol which is the hormone the body naturally releases in response to stress. But why is this such a bad thing? Well because Cortisol is only suppose to be released as a response when you are stressed and over short periods of time because it affects everything from your metabolism to your mood. In my case, my body was producing too much for too long and so this leads to the symptoms which I have mentioned before. But what makes Cushing’s disease even more problematic is that the longer it is left untreated the more life threatening it becomes.
Because my body has been constantly “under stress” for the last 9 years, I developed high blood pressure, my concentration was affected as well as my memory and I used to get disabilitating migraines. I suffered terrible mood swings, depression and anxiety which were hormone driven. Cushing’s disease also leads to muscle wastage and osteoporosis which is why for the last few years I have been suffering from constant backache and am unable to do any sports. My last year at University was a real challenge and it took a tremendous amount of effort to complete it which is why I am so proud to have graduated with a 2:1.
How I came to finally be diagnosed is also a very long story which I talk about in a different post (The Journey to Cushing's Syndrome), but what is relevant is that I was diagnosed back in September 2009 but it took over a year for me to receive treatment! This is due in part to the complete inefficiency of the NHS but also to the fact that Cushing’s, because it is so rare, is tricky to diagnose. During this extremely long testing process, I was grateful for the information and support which was available to me through the Pituitary foundation website and Cushing's help and support website because I don’t think I could have coped with being left in the dark.
My first pituitary surgery was in 2010 and unfortunately I discovered I had a recurrence in 2012. Because I was in Hong Kong completing a Masters of Social Science in Behavioural Health, it wasn't until beginning of 2013 that I underwent another 2 transsphenoidal surgeries. This time they removed half of my pituitary gland. To my greatest disappointment, this still did not cured me. I am now (summer 2013) having to decide how I want to have my pituitary gland removed, through another neurosurgery or radiotherapy. It appears this is my next treatment option. Though it is a difficult decision, the choice is less painful because I have already lost most of my hormone function after surgeries 2 and 3. The only addition hormone replacement I will have to add is Growth hormone (and of course cortisol since if I am cured I will no longer produce it naturally). But I am soldiering on and trying to stay focused on my Professional Doctorate in Counselling Psychology and building myself a life worth living.
For the full account of how I came to be diagnosed with Cushing's, have a look at: The Journey to Cushing's Syndrome and Part II: The Saga continues.
