The story of Tayla
Not too long after the birth of my son in August 2017, I’d tried to get back into the swing of my old lifestyle. I was embracing being a new mum but was really looking forward to being active again, getting back into the gym and spin classes and getting back into my old clothes. Before my son was born, even throughout my pregnancy, I enjoyed being fit and active. At 25 weeks pregnant I was still running a 5k three times a week, I was still weight-lifting in the gym and eating really healthily. By 30 weeks, pregnancy had got the better of me but I was still swimming 3 mornings a week. My son came early by emergency c-section at 35 weeks and we spent 10 days in hospital due to various pre-existing health conditions and new complications.
3 months after having my son, in the November of 2017, I had lost 2 stone naturally. I was only 1 stone away from my pre-pregnancy weight and I was almost back into my old clothes. I was eating sensibly because I was exclusively breastfeeding, and I had been back to a few spin classes. But this was when my weight loss stalled.
We approached Christmas and like most people do, I indulged in nice food and family time, but was determined to “start again” in the New Year. I knew I could do it again. I’d lost 5 stone before falling pregnant. After the death of our first son and then subsequent miscarriages, I knew that I wanted to be as healthy as possible before falling pregnant for the 4th time.
The New Year came round and I made a promise not only to myself, but to my son and my husband, that I was going to lose the weight. I wasn’t just being vain; I’d noticed that it had really affected my confidence and my mental health. I was a shadow of my pre-baby self, and whilst I knew that was somewhat normal when becoming a parent, I didn’t like how it made me feel when I thought that there was something I could do about it. I felt embarrassed about how I looked, I didn’t want to leave the house incase I saw someone that recognised me and saw the weight I had put on. Looking back, I know this was slightly irrational because I know now that a body changes after a baby, and he was still only a few months old. I probably did put too much pressure on myself, but because I knew I had done it before, and I was frustrated that I wasn’t even losing ounces anymore.
I was walking between 9 and 12 miles a day. The only way I could get my son to sleep during the day was in the pushchair. We used to walk approximately 3 miles, 3 times a day, for each nap time. I wore the wheels of the pushchair down, as well as the soles of my trainers. I kept my coat and trainers in the boot of the car, so that I could get out and walk at any opportunity. If he fell asleep in the car, rather than going home, I would drive to the nearest place I could think of to park up, put my trainers on and get some steps in before he woke up, rather than sitting at home.
I joined weight loss groups and went to the weekly weigh ins for motivation. I tried calorie counting because this is what was familiar to me and how I had lost 5 stone previously. I tried intense exercise classes like spinning and HIIT, as well as starting to lift light weights again. I bought numerous online exercise and nutrition programmes. I bought an exercise bike, so whilst my son was quite happy crawling around or entertaining himself, I would do 30 minutes at a time on the bike in the living room. I would create home workouts with my son, shoulder pressing him and squatting whilst holding him. I’d find dance workouts on YouTube and have him join in with me.
Then the weight started creeping ON. Despite everything I was trying, I was now putting weight ON. I couldn’t understand it. My husband was rolling his eyes. He was out at work all day so had no idea what exercise I was doing or what I was eating. He must have thought I was exaggerating how much walking I was doing, or I was being a secret eater. I admitted to not being 100% all of the time, because I’m just human. We would have a takeaway perhaps twice a month. At the weekend we would go out for dinner, or coffee and cake, or have some treats with a movie at home. My diet was probably 80% really good, on top of all the exercise I was trying to do. I couldn’t understand why I was putting weight on.
Then the pandemic came along and we went into lockdown. This hit my mental health hard. Forced to work from home with a 2 year old around, when I enjoyed my daily train commute into the city, working as a legal secretary. I was still getting out for our walks as much as I could, especially because we were blessed with such good weather.
I recognised that my mental health had taken a nose dive, but I couldn’t pinpoint why. Our first son had died in 2015, so I thought perhaps there was some grief resurfacing that I hadn’t dealt with. Perhaps my anxieties were around being a new mum and trying to juggle my time. Whilst he was a baby, I was also studying towards a law degree; perhaps I just had too much on my plate. I was on maternity leave and finances were tight, which probably added to my worries. And now lockdown, not being able to see our friends and family.
I looked into all the ways I could try and help myself, to pick myself up from this dark place I felt I was headed. I referred myself to a talking therapy provider, and had a course of counselling as well as CBT. I bought myself colouring books. I bought bath bombs, face masks, hair masks, nail kits, all to try and have some self pampering sessions. I changed my diet and started to eat better again, eating foods rich in magnesium to help lift my mood. I had a digital detox and tried to be really present at home, just myself, my son and I, and really appreciate all the little things in the hard time that we were having. I was having panic attacks, anxiety attacks. I was waking up in the night sweating, watching to scratch my skin off. I was crying all the time. I had convinced myself that I was a terrible mum and begged my husband to call social services and have someone else look after our son because I didn’t know how to. I’d entered that dark place and was desperate to get out.
I did some reading into the contraception I was on. I had the implant fitted, and I had read that there were links to weight gain, mood changes and anxiety and depression. I was now on a mission to have it removed. With us being in lockdown, I struggled to find someone who would see me in person to take it out. A few months passed with me begging various people to take it out, but I managed to get it taken out at a local family planning clinic. I thought that might be the answer. I thought I’d start to feel better in myself and perhaps then the weight would start to shift a little.
But nothing changed. Infact, I was putting more weight on and even quicker now. By 2021, I had now gained 3 stone since giving birth. Despite having managed to lose 2 stone after birth, I had now put that 2 stone back on, and another stone. I was getting so frustrated, which was contributing into my poor mental health. My whole anxiety came from not feeling like myself because of the weight gain, and now I was putting more and more weight on, despite trying all that I could to lose it.
Once restrictions started to lift, we moved house, and I again promised myself, and my son and my husband, that this would be a new start. I got out walking in our new neighbourhood, early mornings, late nights, whenever I could. I joined a new gym and saw a brilliant personal trainer. I was doing classes 3 times a week, as well as exercising at home inbetween. I bought kettlebells and weights to use at home. I was doing YouTube workouts, using battle ropes and tyres in the garden. Even my personal trainer couldn’t understand why weight wasn’t coming off. I had my thyroid checked twice in 6 months, but that was all fine. My GP suggested it was PCOS and told me I just needed to try harder. I was given leaflets about healthy eating and exercising.
One morning, I had uploaded a video to social media as I left the gym. I was talking about how frustrated I was getting, that I’m putting all this work in for nothing. I said I was going to look into the foods and any supplements that could reduce my insulin/glucose levels, perhaps this was why I was putting weight on? I said I was going to ask my GP to run blood tests and see if this was the culprit, but also to check all my hormone levels because I’d also not had a period since having my son over 3 years ago now. I got a message from a lady in response to the video, and this message quite possibly changed my life.
The message was along the lines of “I hope you don’t think I’m being rude but….”. She went on to say that her friend had struggled with weight loss, poor mental health, insulin resistance, and red/puffy cheeks (referring to the bright red cheeks I was showing in the video). She said her friend had just been diagnosed with a really rare disease, but that it took her a long time to get diagnosed because no-one believed her. She sent me a link to read more about the symptoms.
That disease was Cushing’s Disease. And from that moment, I was like a dog with a bone. It was like reading my story. Every symptom was there. I knew this was it. I knew this was why I wasn’t losing any weight and why I was feeling so down and irrational for the last few years. I told my husband and he rolled his eyes again. He was worried I was now pinning my hopes on something, thinking that I could be fixed, when actually, he probably thought I was still secret eating and just needed to try harder.
Cushing’s Disease is the over-production of the stress hormone, cortisol. This hormone has a lot to answer for when it comes to our bodies every day functioning. Excess cortisol results in weight gain, and the more cortisol you produce, the more weight you gain. But cortisol also stores it’s energy as fat, so it’s a vicious cycle. Then you exercise to lose weight, but your body is tricked into thinking it’s under stress, so it produces more cortisol.
Excess cortisol then also pushes everything else out of balance. It causes your blood to store glucose, so you then become diabetic. It raises your blood pressure. It weakens your muscles and your bones. It causes muscle, flu like aches. It can cause insomnia on some nights, and then extreme fatigue and tiredness on other days. It suppresses your immune system, making you more prone to illness and infection.
I went to my GP and specifically mentioned Cushing’s Disease. She agreed to test all my hormones but still thought it was likely to be PCOS. She did a physical examination and whilst she acknowledged that I had some of the physical symptoms, like the larger tummy, the round face, the bright purple stretch marks, she said I didn’t have the lump of fat at the back of my neck/shoulders, so “it can’t be Cushing’s Disease”. Even at that point, I disagreed.
My blood tests came back and confirmed that I was pre-diabetic and had high glucose levels, my testosterone levels were almost non-existent and my cortisol levels were raised. She booked repeat blood tests to check them again and referred me for an internal ultrasound on my ovaries.
The second lot of blood tests came back. My glucose levels were higher, my testosterone levels were untraceable, and my cortisol levels were higher again. The ultrasound didn’t find any cysts or anything abnormal on my ovaries.
She finally referred me to an endocrinologist for further testing.
I had my first appointment with an endocrinologist in January 2022. He looked over my lab results and then we discussed my symptoms and he did a physical examination. He noted the stretch marks, the large “trunk” being my large and overhanging stomach, the lump of fat on my neck that the GP said wasn’t there. He watched me try and stand from sitting in the chair, without holding on to anything. He asked how my symptoms were affecting me at home.
By this time, I was in a lot of pain. I had stopped walking, going to the gym and working out at home. My muscles couldn’t take it anymore. Every day felt like I either had flu, or like I’d done a workout the day before. I wasn’t able to do the school run anymore, I had to park as close to the school as I could for the shortest walk. I couldn’t step up a kerb or over my doorstep without holding onto something or lose my balance. I struggled to wash my hair in the shower because the pain was too much to hold my arms above my head for so long.
He said that he strongly suspected Cushing’s Disease but there were several tests I would need to satisfy for a diagnosis.
He said that no-one knows what causes Cushing’s Disease, but it could have been a number of factors. It’s almost a “chicken and the egg” situation, as in, no-one knows what comes first. Does the excess cortisol cause the poor mental health, or does having poor mental health and PTSD cause the excess cortisol? He said that having the implant could have caused it; my weight loss stalled in November 2017 when I had the implant fitted. The implant raises levels of cortisol, but usually those levels would stabilise or return to normal, particularly after removal, however mine did not. He said that the most cases of Cushing’s Disease are caused by overuse of steroids, which wasn’t applicable in my case. It could be a tumour on the pituitary gland in your brain, which then causes your brain to tell your adrenal glands to produce more cortisol. Or, in the rarest of cases, it’s caused by a tumour on the adrenal gland itself, which suppresses the adrenal gland and makes it produce more cortisol.
Cushing’s disease effects 0.002% of people worldwide, that’s between 40 and 70 people per million.
He sent me home with urine tests and saliva tests to do. I had to store 24 hours worth of urine and then at midnight, chew on a cotton swab. These were then sent off for the levels of cortisol to be tested. Over a 24 hour period, a “normal” person’s cortisol levels should score below 154; mine came back at 700. I repeated this 24 hour urine test 2 weeks later, and my score that time came back at over 900. That means I was producing over 700 times the amount of cortisol that a “normal” person should. I was given a tablets to take at 6 hour intervals over 24 hours, to see if this would reduce the amount of cortisol I was producing; this had no effect at all.
Once these results had been sent back to my endocrinologist, he ordered an MRI scan to confirm that there was a tumour. Due to some other blood results, he suspected that the tumour was on my adrenal gland on my kidney, rather than on the pituitary gland on my brain.
It was now October 2022 by the time I had an MRI scan. I had waited 9 months just to get to this point. The MRI confirmed that there was a 2.6cm tumour sitting on top of the adrenal gland of my right kidney. I received a letter to say that the cure would be to remove the tumour via surgery, and that my next appointment to discuss next steps would be in March 2023!
In the meantime, my condition was getting worse. My diabetes was untreated because my GP was holding out for me to have surgery. My blood pressure was now not controlled and my medication kept having to be increased. I was struggling to move around the house without holding onto things to steady myself. Folding the laundry was a struggle, the repetitive action in my shoulders hurt too much. I was working from home because going into the office was just too much. It hurt my hands and wrists to drive. And then by November, I’d picked up a nasty chest infection. Having a suppressed immune system made this much worse. I struggled through Christmas, feeling really poorly. Then in January, I decided that I was fed up of feeling so poorly and called 111. I’d noticed a new chest pain and was now struggling to even whisper.
They referred me to A&E as an emergency and told me to be there within the hour. When I arrived, within 15 minutes, I was on oxygen, I’d had an ECG, a Covid test and a CT scan had been ordered. Within just a couple of hours, I was diagnosed with a “major bilateral pulmonary embolism”. My chest was sore, I couldn’t talk at all now, I was needing a lot of oxygen and I was incredibly tired. I had no idea that I’d developed blood clots, but was told that I arrived at A&E at the right time; had I arrived any later then it could have been a very different story, due to the size and number of blood clots that were all over both lungs.
No-one can tell me whether this is linked to Cushing’s Disease or not. There may not be a direct link, but the disease has suppressed my immune system, which could be why the chest infection lingered for so long and eventually developed into blood clots. Or it could be totally unrelated to the chest infection, no-one knows. But this was a huge step backwards in terms of treatment. Having blood clots and spending a week in hospital would now delay any chance I had of having surgery to remove the tumour. I had been referred to a new endocrinologist in a specialist surgical hospital, and I knew that I had been discussed at their MDT meeting the same week that I was admitted to hospital.
As it turns out, with the pressures of the NHS, I didn’t see the consultant surgeon until May 2023. We discussed my recent PE and the plan that had been put in place for this. I would now have to take blood thinners for life. We again discussed what impact the symptoms of Cushing’s Disease were having on my everyday life. I was 29 years old but had been granted a Disabled Blue Badge and Personal Independence Payments because my mobility had been affected so much. I felt like I was trapped inside an 80 year old’s body.
A CT scan was ordered. Apparently they couldn’t agree to surgery based on MRI images, so a CT would be needed to obtain a clearer image of the tumour. I had this CT scan in August 2023, and they found that in just 9 months, the tumour had grown from 2.6cm to 3.9cm. I was told that I would now be put on the priority list to have surgery as soon as possible, but this could still be 4 months away.
I do have a date for surgery, of the 12th December this year. We had a once in a lifetime trip to Lapland booked for the 14th December, and to celebrate my 30th birthday on the 16th December. The trip has been cancelled, and I’ll more than likely spend my 30th birthday in bed. But this operation is so important to me, I can’t let anything get in the way. I’ve waited so long for this moment.
Getting a diagnosis of Cushing’s Disease was monumental for me. I knew for so long that something just wasn’t right. I knew that my lifestyle just didn’t warrant the 10 stone in weight that I have put on in just 5 years. Everyone thought I was lazy and just not trying hard enough, or that I was just anxious or irrational and not grieved for our son properly. I knew there was something going on and the diagnosis just proved that I wasn’t going crazy. I felt validated. And like there was finally an end in sight for the way I was feeling, for the pain I was in.
I have missed out on so much in the last 6 years. I don’t plan on having any more children, so all those “firsts” were also my “lasts” with my son, and a lot of things I’ve had to miss out on. I’ve never taken him swimming because I was always so self conscious in a swimsuit, and now I physically can’t find one big enough to fit me anyway. I’ve never been to a theme park with him because I don’t fit in the harnesses for the rides. I’ve never run around with him, I’ve never played football in the garden, I can’t go down the slides at the park. I can’t sit on the floor and play with him because it’s just too painful, and I can’t get back up. I’m tired all the time so lose my patience with him. We took him on an abroad holiday once and I struggled to fit in the plane seat back then, so we’ve never taken him abroad him again. Because I was so active through my pregnancy and in the early days, I thought I’d be the fun and active mum who joined in with all the fun activities and days out. Instead, I’ve spent most of the last 6 years sitting on the sidelines and just watching him. Before long, he isn’t going to want to have me doing those things with him, and then I really will have missed out.
There really is a lot riding on having this surgery and curing this Cushing’s disease.
They can’t remove the tumour on it’s own, so will be removing the entire adrenal gland on the right side. They think that the adrenal gland on the left side has been dormant for so long, that it is unlikely that it will ever kick in to produce the right amount of cortisol to keep me alive, so I’m likely to be on steroids for the rest of my life. But with the tumour gone, and me having a “normal” amount of cortisol, my life will change drastically. My blood pressure will come down, my diabetes will reduce, and I’ll start to lose weight naturally. And with the weight loss should come less pain, my muscles will slowly start to strengthen, and one day I should feel like a well human being again.
Most people dread turning 30, but I’m looking forward to having a new lease of life in my 30’s.