The journey to Cushing's Syndrome...

This morning I was up at 6am because of serious heartburn, an aching back and an unquenchable thirst! I thought to myself: On no, it's gonna be one of those days again...

But I was wrong!

I turned on the computer, checked my emails, facebook and charity donation page and what I saw put a huge smile on my face! I had received several really encouraging, positive emails and messages and I'd already exceeded my target. Consequently I've raised it however I am SO proud of how generous all my friends and family have been!! But what has really touched me is the positive messages. When I was creating the page and thinking about starting a blog, I was really nervous and unsure about it. Part of me was reluctant to open up and tell everyone my story because to be honest I think part of me is a bit embarrassed. I know I have nothing to be ashamed about because it's not my fault that I have a tumour, but self disclosure is never an easy thing. And let's be honest, the symptoms of Cushing's aren't exactly "attractive"! In fact, this disease has brought on a lot of insecurities for me and destroyed a lot of my self esteem. Being overweight in an image conscious society is never an easy thing, even when you know that it's not entirely your fault! I'm happy to say that I am now finally able to not let it get to me as much, but no one is completely immune to the hurtfulness of disapproving looks... I know that when people look at me, they're probably thinking that I'm just lazy and greedy. To be completely honest, even I used to think that only lazy, overindulgent people gained weight! How wrong I was... Thankfully I'm older and wiser now! So all these positive messages have pushed to me to tackle the big one:

This post is about what has happened in the last 7 years and how I got diagnosed with Cushing's Syndrome!



Note that I wrote Syndrome and not Disease! This is because the diagnosis of Cushing's syndrome is given when you have confirmed elevated levels of cortisol. In order to decide whether you have the syndrome or the disease, you have to find out what causes the elevated levels. If it is an external source, e.g.through the use of steroids which are medically prescribed for several reasons, you only have the syndrome and your treatment is to stop the steroid use. But if like me, you aren't on any medication and apart from being overweight have no other health problems, then it means that it is something inside of you that is causing your body to over produce the Cortisol. In my case, a tumour on my pituitary gland.

But because what's happened between me being diagnosed with Cushing's syndrome and having a diagnosis of Cushing's Disease deserves a post of its own, today's post will lead up to September 2009.

I guess this is sort of like Part I of the diagnosis saga. I will try and write Part II tomorrow but I might give my readers a few days to digest Part I as it is fairly long already! =)


I haven't had a serious relationship in about 6years now. Ever since I broke up with my boyfriend of nearly 3years with whom I was living with. He dumped me saying: I love you but sometimes I just don't like you!
Talk about a comment that scars you for life!!! But the truth is, even at that time, I could understand his decision. I had put on weight, I was starting to get stretch marks and acne and most of all the depression and mood swings were in full force!! I was not an easy person to live with. Now I know that this was because I was already about 2 years into my Cushing's journey...

But at the time I was young and I really took it hard. I desperately wanted to get better! I wanted to lose weight and stop being so depressed and lazy. But it was imposible! I was eating fairly well and doing a good amount of exercise but nothing seemed to work! Most of all, I had started a college course which I LOVED but I was still having moments of depression. Consequently I kinda lost it. I thought If i'm gonna keep getting fat whilst watching what I eat I may aswell just enjoy myself! So I ended up developing a binge eating disorder. I also started skipping classes because I would wake up so depressed and fatigued that I just couldn't face going to college. Needless to say, I passed by the skin of my teeth and only because I spoke to my tutor explanning that I was suffering from depression!

This was summer 2005 and I was due to start my BSc in Psychology and Social Anthropolgy that September. But I couldn't do it! I just didn't want to start this new chapter of my life looking and feeling the way I did. So I deferred my entry and took a year out. I am lucky enough to have the most understanding and supportive parents in the world! They still live in Hong Kong and basically let me spend the year living with them and paying for all sorts of things to help me like a gym membership, a nutritionist and new clothes everytime I was dropping a dress size. Because folks, I did actually manage to shift the weight! In fact, I lost 55kgs (121lbs, 8.5 stone!!) in about 10 months. But it wasn't easy, I was on a seriously strict diet: no fats or oils at all and everything I ate, even fruit was weighed! I was basically eating less than 1000 calories a day. On top of that, I was at the gym every single day, rain or shine. It started off with just 30 minutes of brisk walking but as I was getting fitter and losing weight, I ended up spending on average 3hrs at the gym everyday. And I'm not exagerrating or including the time it took me to shower and get changed! This is 3hrs of actual workouts. I would usually do an hour of Muay Thai (thai kickboxing), a Body Pump class (weight lifting class) and then something for cardio like an aerobics class or running for an hour. Now bare in mind that you can burn up to 500 calories in a Body Pump class alone! So of course I lost weight. Simple maths: I was only putting in about 1000 calories but probably burning more than 3000 a day because on top of going to the gym I was making sure that I was being as active as possible. I would walk everywhere and always take the stairs instead of the lift if I could. I should point out that HK is known for it's skyrises and we used to live on the 17th floor!!!  So since a 2000 calorie intake is the requirement to maintain healthy body weight when you lead a fairly routine lifestyle of course I was burning off a hell of a lot of fat. But I started noticing other things, I was getting more stretch marks and was starting to get hairier. Now I know that anorexics develop more hair and technically I was sort of anorexic. I wasn't starving myself by skipping meals, but I was burning way more calories than I was consuming. Needless to say, that observation got laughed at because no one could believe you're anorexic when you weigh 70kgs (150lbs, 11 stone) even if you are 5'7". And when I mentioned the stretch marks, the doctor simply said that they were probably already there before but they were reddish purple and more noticeable now because I had lost weight. What was also puzzling me was that I was still having bouts of depression but I couldn't figure out why!? I was SO happy in HK. I had my family around, I was looking and feeling good and I had my uni course to look forward to. What was wrong with me? Was I just one of those people who was just never content?

So after this year out, I returned to London summer 2006, ready"ish" to start my degree. I was full of hope thinking I would make new friends, enjoy my course, possibly start dating again etc. But things quickly started to fall apart. Now that I was at uni, I couldn't go to the gym as much so I had to cut down to only an hour of running a day. I was also not being as careful with my food intake. I wasn't eating particularly badly, in fact I was eating the recommended 2000 calories, thinking that this would maintain the weight I was at because I was happy with it, but I was wrong. I started putting on weight again and within 3 months, I had put on 25kgs (55lbs, 4 stone). I was having difficulting making friends because I felt extremely uncomfortable in social situations. I wasn't my bubbly talkative self because I was so self conscious of my sweating, my acne and everything else (which I know now were Cushing's driven). I started to withdraw, was also not going out because I was feeling fatigued and I started binge eating again. But it was a weird time for me because in a way I was also feeling really good. I was loving my studies and was really positive about my life, my career direction, etc. I was studying psychology so got to know a bit more about different pathologies and started reading up about binge eating and things like that. At one point I thought that maybe I was bi-polar but that diagnosis didn't exactly fit either. And when I would talk to my friends about family about how I was feeling, they seemed to think that I was complaining about usual problems and that I just needed to sort my life out a bit and I would feel better. So I thought Ok, stop trying to find an excuse or something else to blame all your problems on like being bi-polar or whatever, just face facts, your problems come from you and you need to fix them!

So this time I thought: Well the reason I failed in HK was because I only tackled the physical side (i.e. being overweight) I didn't deal with the issues I have (i.e. lack of self-esteem, confidence, etc.) So I started seeing the counsellor at uni and asked her to write a letter to my doctor so I could get referred to the eating disorders clinic. At this point it is 2008. All this took AGES. Before I could get referred to ED I had to meet with a mental health worker so I finally got to ED just before summer 2009. In the meantime I was able to maintain good grades at uni but my health and mental well being were really starting to suffer. I was still putting on weight, mainly because I was binge eating but also because my appetite was off the charts (again, now I realise this is because of the Cushing's). I still had all the other symptoms and on top of them I was starting to have irregular periods, backaches, headaches and my concentration and memory were starting to get affected. And that's when I read about Cushing's online. I can't remember how I found it, probably from googling all my symptoms. But when I came across it and saw that it was a rare disease I thought Here you go again, trying to blame something else! But the more I was reading about it, including people's testimonials, the more I thought This is me!!

So many Cushing's patients talk about how it changed their lives completely. They used to be fit, healthy, happy people and then they gradually started turning into "monsters". They couldn't recognise themselves not only physically but psychologically as well. So I decided I had nothing to lose by bringing it up at the ED clinic to the head psychiatrist who was doing my assessment. And boy am I glad I did!!! The ED appointment was only an assessment and I was told that I was being recommended for individual therapy and would be placed on the waiting list. But a letter was sent to my doctor with the ED clinic's report and a small footnote: Please test cortisol levels to rule out Cushing's. I now know that that footnote has potentially saved my life!!

In September 2009, the start of my final year at university, I received the results of my first of MANY tests. It was a 24hr urine free cortisol test and the result was a staggering 921mmol/l. Now to most of you that probably means nothing so to put it into context, your normal cortisol levels rise and fall during the day but in a 24hr test the result should be between 10-100!!! So this is how I finally came to be diagnosed with Cushing's Syndrome.

To read about how they finally found my pituitary tumour and diagnosed me with Cushing's Disease, go to: Part II: The Saga continues...