For Cushing’s Awareness Day we want to share this story of Minal. She was diagnosed with Cushing’s after remembering a lecture about Cushing’s during her training to become a dentist. She share’s some of her symptoms, her journey to get diagnosed and how she looked after her mental health during her journey too. Her story is similar to many Cushing’s patients, so she is sharing her story to raise awareness in the hope that people will be able to get a quicker diagnosis. Minal has also raised over £10,000 for The Pituitary Foundation – we are very grateful!
“I remember looking at my face and body in the mirror one day and thinking ‘what if this is Cushing’s disease?’ I vaguely recalled learning about this in my second year of university, as we had to cover general medicine whilst I was studying to become a dentist. There was one specific lecture slide with a cartoon image of a human with such distinct characteristics that I just couldn’t forget – I felt that I was starting to resemble that image. The “moon face”, thinning hair, weight gain around the abdomen, buffalo hump, purple stretch marks and bruising with the absence of my period; all my symptoms finally clicked together.
Initial Symptoms
Rewind back to 2017, where I think it started. My menstrual cycle became fairly irregular and a blood test showed me to be high in a hormone called prolactin (the cause of period irregularity/ absence). My doctor thought this may be due to polycystic ovaries, however after numerous scans this wasn’t the case. The doctor was baffled and had no answers or explanations but told me to take the contraceptive pill to regulate my menstrual cycle and so I did. It was only in August 2020 when I decided to come off the pill that I started noticing subtle changes in myself. Being a fairly active and healthy person, I was training to run a half marathon and always considered myself to be quite fit. I was also always known to be the person who could eat whatever I wanted and never gain any weight. However, it felt like something had changed.
As time went by, I noticed when running, I was finding it quite hard to breathe and experiencing severe chest tightness. The Fitbit I used to wear at the time also showed I was always running at my peak heart rate and my VO2 was poor for my age. This seemed odd to me, as only a few months before, my VO2 said I was above average for my age. I assumed maybe my Fitbit just wasn’t working properly. I also noticed I had a little bulge growing on my lower abdomen and more hair growth around my upper back and lower face. My hair also started falling out and thinning to the point where in the space of two months nearly half my hair thickness on my head had been lost. I definitely knew something wasn’t right and it had to be hormone related.
At first, I thought maybe I have a thyroid problem as that runs in my family, so I went to see my GP, explained my symptoms and they requested a blood test to check. The blood test strangely revealed I had very high cholesterol. I was baffled, and so were my family. My GP referred me to a nutritionist who asked me to keep a diet diary for a month so we could discuss ways of lowering my cholesterol. As the month passed by, I noticed more symptoms. My face started to look quite round and puffy, I had developed purple stretch marks and bruises around my body and whenever I ate I felt bloated immediately after 2-3 spoons. I spoke to the nutritionist for the follow up who said the hair loss was common and didn’t appear abnormal (to which I disagreed) because I was vegetarian and may not have enough protein in my diet, and to maybe try and do more exercise but she had no explanation for why my face was puffy.
Frustrating GP appointments
At this point, I remember feeling quite frustrated and deflated. No matter how well I ate and how much exercise I did, I continued to gain weight. I even tried intermittent fasting and that made no difference. I’d look in my wardrobe and struggle to find clothes that would fit me. This was when it first crossed my mind ‘what if this is Cushing’s disease?’ I must have gone to my GP seven or eight times in the space of six months, complaining about various symptoms, although on numerous occasions I was simply told I was paranoid and anxious and these complaints were common from girls my age. Every time I wanted to approach my doctor I felt embarrassed and anxious as I thought they would think I was crazy. I confided in my family and partner who encouraged me to speak to my GP once more.
Towards the end of 2020, I finally gathered up the courage to say to my GP “I know it’s rare but I think I have Cushing’s disease and I would like you to refer me to check my cortisol”. Again, my GP said I was just being overly worried and there was no indication for a hospital referral to an endocrinologist but instead she would do a random cortisol blood test which she highlighted is fairly inaccurate and can give false negatives. At this point, I was confused as to why I was being given an inaccurate test and not a hospital referral and again I felt frustrated. I felt fed up and miserable, I didn’t feel or look like myself anymore. The psychological impact was really taking its toll on me.
At this point I had gained 14kg and my face was becoming increasingly abnormally round. I had never wished so much for a test to come back as abnormal, yet unfortunately for me it came back normal, and this was when my GP dismissed any more of my complaints saying they had now done all the checks they can. I can honestly say I had never truly experienced the feeling of anxiety until this day. I found it difficult to concentrate, even doing simple everyday tasks.
Finally getting a diagnosis
I refused to accept there wasn’t anything wrong with me and took it into my own hands to find a private endocrinologist. After consulting with the endocrinologist and showing him pictures, he pieced all my symptoms together, was shocked and was almost certain I had Cushing’s. After so long it finally felt like someone listened and believed me. However, he explained in order to have an official diagnosis and be accepted for surgery I had to provide five abnormal results in the following tests: three x 24h urine outputs showing high cortisol, an abnormal dexamethasone blood test, and a CT scan showing presence of a tumour. I felt like I was constantly having to battle to prove there was something wrong. It was a strange feeling; every time I received an abnormal result I was scared but at the same time so happy as I knew it meant I was one step closer to reaching a diagnosis.
I finally received my official diagnosis in March 2021. After countless nights of insomnia and feeling anxious and nearly even doubting myself and giving up, it finally felt like a huge weight was lifted off my shoulders. I was diagnosed with Cushing’s syndrome caused by an adrenal adenoma. I had a 3.5cm tumour on my left adrenal gland. The months from March until 9 August 2021 (the day of my adrenalectomy) felt like the longest wait of my life. I was immediately started on medications to control the tumour and my cortisol levels (which were approximately 10 times the normal). I had to attend hospital twice a week for blood tests, with weekly consultations, whilst still trying to balance working as a dentist and providing care for my own patients. I generally felt exhausted all the time.
Recovery
Counting down the days till the 9 August felt like counting down the days to Christmas. I couldn’t wait to be admitted into surgery and to finally start my journey to recovery. It finally felt like I could see light at the end of the tunnel after so long. I think when receiving a diagnosis like this, it not only affects your physical health but also has an enormous impact on your mental health and self-confidence. It is one thing not being able to control the physical changes happening, and on top of that then not being able to control your mood. I found it difficult to make anyone truly understand how I was feeling, but I have learnt it is OK to not feel OK. I found a lot of comfort in reading other patients journeys on how they coped, and it gave me confidence in reminding myself that things were going to get better. Daily journaling and meditation have helped me a lot from diagnosis and now in recovery.
Focusing on things that were in my control and that make me happy – such as spending time with my close friends and family and helping people through my work – definitely helped me to get through the darker days. I count myself grateful every day that there is a cure for me and the access we have to medicine is unbelievable. I have learnt an incredible amount about myself, my limits and the importance of putting myself first and I know I will be a much stronger person when I come out the other side of this. I am able to empathise more with my own patients at work, having now experienced being a patient myself. It really is true when they say you never know what someone is really going through so it’s important to always be kind and understanding. I hope by sharing my story, I can also provide comfort and awareness to anyone reading this that may be experiencing what I went through to know they aren’t alone.
With such a rare condition like Cushing’s I think the hardest step is getting the diagnosis in the first place and if I could share one message with anyone it would be that you have to trust your instinct and be your own doctor. You know yourself best and you know when something doesn’t feel right, so trust your own judgement and don’t give up, be persistent; I’ve read numerous stories detailing how patients accepted being told they had developed diabetes, high blood pressure or even misdiagnosed as having polycystic ovaries. Diabetes and high blood pressure are symptoms of Cushing’s which can develop if the tumour is left undiagnosed for so long. It’s worrying how if left undiagnosed or misdiagnosed, Cushing’s can be fatal.
I count myself lucky for being in the medical profession to even be aware about Cushing’s but not everyone is. And for those who know someone going through something like this, being caring and having patience goes a long way. I have been lucky enough to have an incredible team of nurses, endocrinologists and surgeons to help me through my journey and provide me with a successful surgery. Recovery has not been easy to say the least. My journey to recovery has only just started; from living with Cushing’s syndrome to now living with adrenal insufficiency feels like a rollercoaster already, and every day feels like a new challenge. In fact, I have probably felt worse post-surgery than pre-surgery but it has only been three months and seeing the physical changes to my face and body keeps me positive and reminds me I am on the right path to being myself again.
I am also blessed enough to have an amazing support system around me at home with my family, partner, friends and work colleagues who have all been so understanding and helpful when I have needed them the most. They’ve put up with me through the days when I have been at my lowest, with no complaints, and I couldn’t be more grateful. My family and friends undertook a challenge of completing 1,000,000 steps each, from the months of June-August, through which we managed to raise over £10,000 for The Pituitary Foundation. The support I have had in raising awareness about Cushing’s and coping through my own journey has been truly overwhelming for which I am forever grateful and I hope to continue to raise awareness around the condition to stop Cushing’s from going undiagnosed.