Natalie Stokes before her operation to remove a brain tumour known as Cushing's Disease.
Natalie Stokes before her operation to remove a brain tumour known as Cushing's Disease. Press People

How a brain tumour caused a mum to gain 63kg

A MUM piled on an incredible 63 kilograms in 18 months leaving her like a swollen Violet Beauregard from Charlie and the Chocolate Factory due to a rare brain tumour.

Natalie Stokes, 33, from Warwickshire in the UK, was accused of being a secret binge eater when she almost doubled in weight from 95kg, to more than 127kg; at which point her bathroom scales just read: "Error".

Despite eating just 1000 calories a day, the 5ft 2in accountant's frame increased by more than 20 dress sizes from a size 16 to a 34/36 resulting in having to buy clothes off the internet and abroad.

After years of misery and thinking she was a hypochondriac going mad a doctor referred her for an MRI scan which revealed a benign tumour in her brain was causing all her problems.

Natalie was told she had developed type two diabetes and was suffering with a range of other bizarre symptoms, including growing facial hair, extreme sweating, sickness, boils, memory loss and even an obsession with the opposite sex.

The 12mm growth on her pituitary gland, a symptom of Cushings Disease, caused a hormone imbalance which led her body to produce too much cortisole, leading her to store huge amounts of fat on her body - and which could have killed her if left undetected.

Now, after having the tumour surgically removed through her nose, she is thrilled that finally the weight is finally "melting away".

Natalie said: "I became so big I was like the character Violet Beauregarde in Charlie and the Chocolate Factory when she eats a stick of chewing gum and blows up like a giant blueberry.

"That's exactly how I looked - I had skinny arms and legs and a huge round trunk and tummy, which was caused by the fat being stored in my middle - a classic symptom of Cushings Disease.

"I'd always been the curvy one among my friends, but I was very active. I kept horses and rode as often as I could. I'd go beating with my dad, I loved fishing and country pursuits but despite all that, the scales kept going up and up. Even I couldn't believe how fast it went on.

"But there is also so much more to Cushing's Disease than just the physical side. The raging hormones mean you are on a constant emotional rollercoaster.

"It's because of the things you can't see that make this disease so awful. I'm aware I'm looking a lot healthier from my weight loss but this often doesn't reflect how I feel on the inside. I think this is also why some people can't understand it... I now look healthy but until my hormone levels regulate, which will take time, it's still like my body has a mind of it's own."

Throughout her teens and early twenties, Natalie put weight on and off like everyone else.

"I put on a few pounds if I over-indulged, but then if I cut back a bit it would all come off again," she said.

"I worked as an accounts administrator for 12 years and although it was a desk bound job, in my spare time I was always riding, which kept me fit. I had no problems jogging up the field to catch the horses."

Yet in her late twenties, the pounds began to stick around her middle and she began to feel unwell and exhausted.

"Despite being so active my tummy and middle just kept getting bigger and bigger," she said. "I started to struggle even getting on my horse - and I realised I was so heavy it was unfair to even ride him any more. That was devastating.

"I kept going to the doctor telling him I felt unwell but he said it was down to my weight.

"I was referred to dieticians, but I said: "I'm honestly trying to lose weight but nothing seems to be working".

"Then everything seemed to speed up and I started piling on weight even faster.

"Each time I went to the doctor I'd have put on a half a stone or more and finally he said: 'You must be secretly eating as no-one puts on weight for no reason. Only you can help yourself. No-one else can do this for you, if you really want to stop eating it's up to you to do it' - but I was adamant I honestly was not binge eating."

Ironically when she fell pregnant with son Charlie, she actually lost more than 25kg.

"I didn't eat any more healthily than I had been previously, but the pregnancy helped my body's hormones to regulate and that led the weight to drop off," she said.

"Sadly I didn't stay with Charlie's dad, but after I gave birth I passed 27 stone - the largest weight that registered on my bathroom scales.

"I did get heavier, but when ever I stepped on the scales it would just say: "Error".

"I'd go home and cry and I'd tell my mum: 'This is hopeless'. If I'm completely honest, I'm not sure at that stage if my mum even believed me, as I didn't live with her so she couldn't monitor what was going into my mouth.

"Even she'd tell me: 'Come on Nat, you must be doing something wrong, lets write down everything you eat so we can work it out. You're just one of those people who can't even look at a cream cake without putting on the pounds.'"

"When I went over the upper limit for my scales I said 'Mum, look at this - I've got so fat I can't even weigh myself any more.' I just felt terrible and ashamed.

"I'd watch TV programmes of morbidly obese people at 34 stone with a year to save their lives and I'd tell myself: 'I'm not at that stage yet' but I knew I was heading that way. As a parent I also felt a terrible guilt, as I was too fat to do things that other mums did and I was also too unwell."

In addition to the weight gain, she began to suffer other, bizarre and distressing symptoms.

"My hair started falling out, it got really thin on the top, I grew facial hair, I suffered with vision problems, I had constant feelings of overwhelming exhaustion, had splitting headaches and my body would ache so badly.

"I also had memory problems - I've trained as a counsellor and I realised something was really wrong when I read a new chapter and then I realised the notes in the margins were my hand writing. So clearly I'd clearly studied it before, but I had absolutely no recollection of it.

"I also forgot how to touch type and how to spell. I had to use the predictive text on my phone to get the words down. But I was so far off the mark with some words, that I even struggled with that. It was worse than having baby brain - with that you can get your head together and get back on track. This was much worse. I thought: 'When does this stop?' I feared that I'd end up like I had dementia. That was simply terrifying."

Initially Natalie was turned down for an NHS gastric bypass, as she was considered to be in otherwise good health.

But two years ago, her GP agreed to refer her again, when she continued to balloon.
"He told me in no uncertain terms that there was no point unless I was honest about how I was eating and I was prepared to help myself.

"I said: 'I'll take that chance, I want to go and see the consultant again please'.

"When I saw him he asked me if I'd ever heard of Cushings Disease - he explained that might be a possibility for such a large, unexplained weight gain.

"I told him I thought that was something that dogs and horses get. But apparently about one in a million humans can suffer from it too.

"He also described some other symptoms, including a round face, what I call 'Honey Monster shoulders' and 'buffalo hump' - where fat accumulates around the back, a red complexion, and an accumulation of fat around the stomach.

"One of the worst symptoms was that I had a very high level of testosterone - higher than a team of rugby players as the pituitary gland is the 'master gland' which regulates the whole body.

"That meant, as poorly as I was, I was obsessed by the opposite sex as my hormones were completely out of balance.

"I even told my Mum, 'I think I'm turning into a man as I'm thinking like one' as my symptoms were so extreme. "I'd walk down the street and I'd catch myself perving at men and think: 'I need to have a cold shower'. "It was totally unlike me - it was like my body was an alien. I wasn't dating and I felt mortified. I asked my doctor about the bizarre symptoms and he confirmed that was caused by Cushings. It may sound funny, but when you are so unwell it's actually horrible."

Natalie shows just how much weight she has gained and lost again.
Natalie shows just how much weight she has gained and lost again. Press People

After a battery of tests, including an MRI Scan, Cushings was confirmed and Natalie was referred to the Queen Elizabeth Hospital in Birmingham.

"By then my life was falling apart," she said.

"I was permanently exhausted. If I was in the supermarket, I would have happily climbed on top of the toilet rolls and gone to sleep.

"To be honest, getting a diagnosis of what was wrong with me led me to a feeling of overwhelming relief.

"For years I had been tarred with the brush of being fat and lazy and there was times I felt like a rubbish mum as I was too ill to take Charlie running round the park.

"I'd known for all this time I was ill. And now finally it had a name and I could be treated."

On June 3 2016 Natalie had an operation at the Queen Elizabeth Hospital Birmingham where surgeon Mr Ahmed removed the tumour through her nose using a pioneering Surgical Navigation System, which was funded by the QEHB Charity.

Natalie said: "The procedure was called transnasal surgery and they go up the back of your nose, cut a hole in your skull and cut through to reach the tumour, which meant I didn't have to have very invasive and drastic surgery.

"And the operation has been a success, so I've been given a second chance.

"I'm not completely well yet my nausea and emotional state still taunt me but a lot of things have improved purely from the weight loss, it's going to take time and I have to be patient as my body has been out of sync for so long, but I'm getting there slowly building strength. It's not been a smooth recovery with several scary and traumatic adrenal crises along the way resulting in extra weeks in hospital and time away from my son.

"I'm now down to 17 stone (107kg), and I'm still going down.

"I'm aware I'm looking a lot healthier from my weight loss but this often doesn't reflect how I feel on the inside. I think this is also why some people can't understand this Disease... I look healthy but my body is still healing.

"I also had a complication post surgery of Diabetes Insipidus. The main symptom is that you have an unquenchable thirst - it's so bad you could mug a granny for a bottle of water. But I'm now on medication to get things under control.

"I'm also awaiting the thumbs up health wise from the QE for a gastric bypass to go ahead to help me get the remainder of the weight off.

"So having the op is like having a second chance at life.

"I''ve kept some of my tops from when I was at my biggest and you could almost get another 'me' in them.

"Seeing them spurs me on to keep trying to lose the weight.

"And that's why I'm speaking out now, I was written off as been a fat, lazy blob, but I wasn't. I was sick with an unusual disease and I hope to help others by speaking out and raising awareness of this awful condition.

"As finally the future is looking brighter. "It won't be long now until I can start riding again and my aim is to run round the park with my son - that will be the most wonderful moment of my life."

QEHB Researcher Niki Karavitaki said: "The more research we are able to carry out means patients, like Natalie, with pituitary illnesses can be diagnosed and treated much quicker, improving the quality of their lives immensely."

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