‘Drop everything and get to the hospital.’ The doctors were baffled. They couldn’t believe I was still standing.’: Woman diagnosed with Addison’s disease, ‘I’m alive by chance’

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“2020 was the year that changed my life. Yes, I know, not a massive statement. In 2020, most people’s lives changed in some way or another with the pandemic. But for me, 2020 was the year I almost didn’t get to see Christmas. 

I was extremely unwell, but by a stroke of luck, I’m here to tell my story. I have been unwell for a long time. I don’t ever remember feeling 100% well. For years, I suffered from extreme digestion issues and struggled to gain any weight. Instead, I constantly lost weight, no matter what I did. I was always exhausted, going to bed at 7 p.m. every night and waking up as if I hadn’t slept at all. I spent many days on the sofa, no energy to even grab a glass of water.

In the past 6 years or so, this all came to a head. I blacked out, delirious in the doctor’s, and had extremely low sodium. However, I was sent home. My weight got so low, strangers would ask if I had an eating disorder, and I was so weak I wasn’t able to even walk upstairs without collapsing at the top.

Courtesy of Billie Worsey

The doctors I saw were baffled. At one point, I was diagnosed with a heart condition called Postural Tachycardia syndrome. My heart rate jumped up and my blood pressure dropped whenever I sat up or stood. I was constantly dizzy and felt like I was going to faint. I always felt sick and the smallest thing could upset my stomach. I tried everything you can think of to get well again. I went gluten-free, low fodmap, vegan, hired a nutritionist, took vitamins, tried holistic therapies— nothing worked.

In July of this year, I had never felt worse. I couldn’t stand for very long and walking up the stairs was nearly impossible. I had two young children by this point and constantly felt so guilty I had no energy for them. I was always on the sofa wishing the day away until I could go to bed again. My day was spent conserving what little energy I had to do basic tasks. In the evenings, I would cry about how terrible I felt and how nothing was making me better.

One day, I’d had enough and called my doctor for advice. At the time, I assumed it was the postural tachycardia that was making me so unwell. The doctor I spoke to was extremely unhelpful. He mostly blamed how unwell I was on my anxiety and suggested I get therapy to help, which was soul-destroying to hear. I got angry, complained, and was given a blood test. That was the beginning of the end of my nightmare.

Courtesy of Billie Worsey

A few hours after the blood test, I got a call from the doctor telling me to drop everything and to get to the hospital. The blood tests showed my sodium levels were dangerously low. In fact, they couldn’t believe I was still able to stand. They explained I could have gone into a fit at any moment, a thought that still makes my blood run cold, thinking about myself alone with my two babies while my husband was at work.

It just so happened while I was in the hospital, an endocrinologist was in the same area where I was being seen and overheard my symptoms. He ordered another blood test and asked them to check my cortisol levels. He was shocked no one had checked them before. Cortisol is the stress hormone that is produced by the adrenal glands. They sit on top of our kidneys and you probably never knew you had them. Cortisol is extremely important. It affects every single part of our bodies. Without it, we can’t survive. A normal cortisol level is around 300 to 400. A cortisol level of 100 would warrant medical intervention. Mine was two. I have been told since they had never seen anyone with levels that low. I was going into failure. I was essentially dying. My consultant told me if I had left things any longer, I wouldn’t have survived.

Courtesy of Billie Worsey

Once they saw my levels, I was hooked up to a sodium drip. They injected cortisol into my arm every few hours and put me on to a ward for the night. It was a tough night, but by the morning, my levels were rising. The only way to check cortisol levels is by a blood test, so I was a human pin cushion, having blood drawn in every place they could find.

The next day, I got up to walk to the toilet. I suddenly realized I wasn’t dizzy, my heart wasn’t pounding, I didn’t feel sick. In fact, I felt really well! More tests followed, and I was diagnosed with Addison’s disease, a rare autoimmune condition that means my immune system attacks itself, stopping my adrenals from producing cortisol. The treatment for this is steroids to replace the missed hormones, for life.

My dad says, ‘It’s so hard for the Addison’s sufferer because unlike other debilitating conditions, most people have never heard of it and don’t know just how life-threatening it can be. There needs to be more general public knowledge and understanding of this pernicious disease. Not least because it will allow the Addison’s patient to get the support they need in any given situation.’

All thanks to a simple blood test, my life was saved and I can finally have dreams that extend beyond just getting well. When I got home from the hospital, the first thing I did was walk up the stairs to have a shower. I walked up them with no trouble, then I walked down them, then I ran up them, and sobbed. I couldn’t believe it. My life had completely changed overnight. I had gone from dying to being more alive than I ever have in less than 24 hours.

My husband, Sam, said, ‘I will forever be grateful to her for never giving up and always fighting to be healthy even in the worst times. I am proud of her and more in love with her now than ever.’

Courtesy of Billie Worsey

After that, I went from strength to strength. The medication was exactly what my body had been needing all this time. Every single symptom I had completely disappeared. Turns out, I didn’t ever have postural tachycardia syndrome. My heart rate returned to normal. I had bags of energy, I could eat whatever I fancied without my stomach reacting, I gained weight and I slept better. I had never felt that well in all my life. I asked my husband, ‘If this is how healthy people feel every day, why isn’t everyone jumping around happy all the time?’

Health is our biggest wealth, but it’s something that’s taken for granted so much. I remember reading the quote, ‘A healthy person can have a million goals, an unwell person only has one.’ It’s so true. Suddenly, I was able to have so many hopes and dreams that I could never have before. 

Mentally processing what had happened was pretty tricky. 4 months later, I still feel in shock about things. How I came so close to death. How I had years of illness without anyone finding the cause. How I now have a life-long serious medical condition that needs to be managed every day. I have learned you can choose how to look at these things. I am making a choice to not let the past and my diagnosis affect my future. I will not let my illness define who I am.

Courtesy of Billie Worsey

Eventually, the changes to my everyday life (taking medication multiple times a day and learning when to up-dose during illness or stressful times) will become normal. I want to learn to live with my illness side by side, and not let my illness completely rule my life.

Many people with Addison’s live long and exciting lives and those people give me hope. How long have I had it? We will never know. It could have been my whole life, it could be less. But the doctors are astounded I managed to live, I managed to have my babies, and I survived just long enough to get diagnosed. When they looked into this, the only explanation for it they can see is the inhaler I take for asthma has some steroids in it. That little dose of steroids every day, they believe, help me to keep surviving. I am alive purely by chance, and for that, I am so grateful.

Now, here I am, living rather than surviving. Every day thankful for my life. I’m getting to know my new self, loving every single second running after my babies and I am looking forward to the future. What happens to us doesn’t have to define our lives. We learn and grow from our experiences. They are a part of who we are, they make us more resilient. I believe everything happens for a reason, I survived for a reason. I hope to never take that for granted and to make a positive impact on the world.”

Courtesy of Billie Worsey

This story was submitted to Love What Matters by Billie Worsey. You can follow their journey on Instagram and their websiteDo you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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