Addison’s Disease Awareness Month

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There seems to be an awareness month or day for everything these days, but I’m going to take advantage of that and the fact that April is Adrenal Insufficiency awareness month.

I was diagnosed with Addison’s Disease in August 2018, so I’m still fairly new to the disease and very much still learning about managing it.  Addison’s Disease is also known as primary adrenal insufficiency and is a rare disorder of the adrenal glands. The adrenal glands are two small glands that sit on top of the kidneys. They produce essential hormones: cortisol, aldosterone and adrenaline. In short, having Addison’s Disease is usually the result of a problem with the immune system, which causes it to attack the outer layer of the adrenal gland (the adrenal cortex), disrupting the production of the steroid hormones aldosterone and cortisol. This means that my body doesn’t produce any cortisol. In a normal person, extra cortisol is released when they are unwell, have a shock or injury, so I need to be really careful when this happens and I will need to take medication for the rest of my life to replace the missing cortisol.

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When my cortisol is low and prior to diagnosis, I felt very unwell. I had such low energy levels that I spent more of my time in bed sleeping. No amount of sleep helped and it was a whole new level of exhaustion that I can’t put into words. As well as the exhaustion, I was also very weak: my legs would give way because my muscles felt so weak and mentally, I felt incredibly fragile and cried a lot.

Despite Addison’s being a rare disease, I found the diagnostic process pretty straight forward. I had a blood test to check my cortisol levels: at 9am they should be over 400… mine were are 87. Following on from this, I was referred to endocrinology to have a synacthen stimulation test, which is where a synthetic hormone is injected to encourage the adrenal glands to produce cortisol.  Mine didn’t produce the cortisol, which led to the diagnosis of Addison’s Disease.

Adapting to life with Addison’s has been hard. I think out of all the conditions that I have, Addison’s has been the condition which has had the biggest learning curve. Whilst my other conditions can mean that I feel very unwell, I can’t die from them: I could die from having Addison’s if it isn’t managed correctly. On the same day of diagnosis, I went into adrenal failure and was rushed into hospital. When Addison’s Disease is left untreated (or prior to diagnosis), the levels of hormones produced by the adrenal gland gradually decrease in the body. This causes symptoms to get progressively worse and eventually leads to a life-threatening situation, called an Adrenal Crisis.

I’ll be honest, I remember very little from being in crisis. I was very confused and dizzy and drifting in and out of consciousness. I couldn’t stop being sick and the weakness that I was already experiencing worsened to the point that I couldn’t stand up. It was a steep learning curve in how quickly it needs to be treated, had it been left I could have faced slipping into a coma or death. Scary shit.

One of the hardest things that I have to deal with are the rules surround sickness. In a normal person with Addison’s, if they are sick more than twice, they need to inject hydrocortisone and call 999, to be admitted to hospital for treatment. Because I have gastroparesis, I am sick. A lot. I am also prone to cyclical vomiting, which can be dangerous with Addison’s. Managing the two conditions side by side is a challenge but I have learnt to distinguish between my gastroparesis sickness and other sickness. Despite that, I still need to be vigilant and have spent many hours in A&E at risk of slipping into a crisis because of vomiting, praying that the magical anti sickness drugs will work.

Having Addison’s is made easier by the fact that I have an amazing team looking after me: shout out of the staff on Bagot and Drake Ward at the Churchill Hospital in Oxford for looking after me (and my mum) and answering all my endless questions to ease my anxiety.  I don’t dread endocrine hospital appointments because the staff are so lovely and friendly. I think the fact that I had already been diagnosed with long term illnesses, prior to my diagnosis of Addison’s made it slightly easier to get my head around, but it was still a shock, especially when it was hammered home that if I don’t look after myself, I could die.

I’m open to any and all questions about Addison’s Disease. I might not have all the answers but I’ll do my best or will signpost to support/information.

 

One thought on “Addison’s Disease Awareness Month

  1. This is a brilliant post to raise awareness of something many don’t know all that much about unless/until they’re diagnosed. I’m glad the diagnosis for you was at least reasonably straightforward with the blood testing. Thank you for sharing your experiences so openly, I think you’re doing a great job of raising awareness, showing others they’re not alone & providing support 🙂
    Caz xx

    Like

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