Life before Addison’s
I have always lived a very active life, taking part in exercise, enjoying studying alongside a busy family and work life. In January 2019 I was training for a 23km run in Chamonix, called The Cross Du Mont Blanc, a run I had completed twice previously. To my surprise I was finding it extremely difficult to run even a couple of miles. Within 2 weeks I could hardly walk up a hill without stopping for breath and I was becoming extremely tired.
As a nutritional therapist I knew something biochemically was wrong and booked to see my local GP. I had the normal run of blood tests, which came back all clear. I was told I probably had ME or fibromyalgia because all the tests were within limits. I often review blood test results in my clinic and I was not happy with the sodium and potassium figures, so I researched my symptoms and compared them to these blood figures. By the end of January I couldn’t stand up to make my children breakfast because my blood pressure was dropping dramatically, when I walked up my stairs I had to lie down, I was losing weight quickly and I looked gaunt. I established from my research that one of the symptoms of Addison’s is extreme muscle and joint pain, something I had be experiencing for about 6 months prior to January 2019, so much so that I felt my muscles were constantly hypertonic and tight. Another sign is darkening of the skin, which again I had noticed was happening. Compiling all this information together I went back to the GP to say I thought I had Addison’s disease and that I needed a referral to Endocrinology to have a morning cortisol test. As the weeks were ticking by and I still hadn’t received this referral or blood test, I was feeling more and more desperate as I felt so unbelievably ill. Constantly fatigued, dizzy, dropping blood pressure, my muscles painful and all the while still working and trying to keep a normal family life with my husband and 3 children.
Eventually in March I saw a nurse who took one look at how ill I looked and immediately took me to see the GP, who recognised my symptoms as Addison’s disease. The next morning I had the morning cortisol test and by that night I was in hospital receiving treatment. By the time I was in hospital I was seriously ill, but I was lucky because for me my illness only took hold for just over 2 months and I knew which tests to ask for and the knowledge to push for further tests. Most rare disease’s go undiagnosed for on average 4 years.
What is Addison’s disease
Addison's disease, also known as primary adrenal insufficiency or hypoadrenalism, is a rare disorder of the adrenal glands. These glands sit on top of the kidneys and they produce 2 essential hormones; cortisol and aldosterone. In Addison’s disease the adrenal gland is damaged and so it does not produce enough cortisol or aldosterone, both hormones are essential to life.
Addison’s disease affects approximately 1 in 10,000 people in the UK (NHS), meaning an estimated 300 - 350 new cases are diagnosed each year across the UK. This makes it roughly 300 times rarer than diabetes, another endocrine condition that sometimes occurs alongside Addison’s.
Living with Autoimmunity
Receiving diagnosis was a relief, but then I had to come to terms with daily medication, and being constantly aware of the risk of a sudden worsening of symptoms, called an adrenal crisis, which is when levels of cortisol in the body falls significantly. This can be from stress, excitement, injury, illness, dehydration, surgery, sickness and diarrhoea and there is no way of checking for this, apart from how you are feeling. An adrenal crisis is a medical emergency and if left untreated, can be fatal, so for the first year following diagnosis this shook me considerably. I had to learn how to use the injection kit that is for me or my family to use if I go into crisis. Luckily for me I am managing my condition really well, and I believe my training in nutritional therapy has been essential in this. I have not needed to go back into hospital and haven’t experienced an adrenal crisis since diagnosis. I am living my life to the full, skiing, horse riding, sea swimming, and now running again and as long as I am careful and keep my injection kit to hand I will continue to do as much as I possibly can; in fact I am starting my training to run the Cross Du Mont Blanc again in June 2023, God willing.
Over the next 14 months I will be blogging about journey back up the mountain to run The Cross Du Mont Blanc, as originally planned. Living with an autoimmune condition might mean I have to adapt how I do that, but it doesn’t stop me from doing it. So please check in regularly to see how my training, and recovery are doing, what I’m eating to fuel and sustain by body, and see the highs and undoubtedly the low’s of the journey. As Miley Cyrus sings “It’s all about the climb”.
