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It’s Addison’s Disease Day on 29th May 2022.

Our Financial Director, Diane Middleton was diagnosed with Addison’s Disease in November 2019.  She is keen to raise awareness because this disease is very rare and often not diagnosed until the patient has been admitted to A & E with an adrenal crisis. We interviewed Diane about her experiences and journey with the disease.

What is Addison’s Disease?

Addison’s disease is a rare, life-threatening endocrine condition where the adrenal glands cease to function, so that your body no longer produces enough (or any) of certain essential hormones, known as steroid hormones.

Youtube video – “What is Addison’s Disease?”

How were you diagnosed?

I have had Hypothyroidism (an underactive thyroid) for over 20 years which was successfully treated with Thyroxine (replacement thyroid hormone).  In January 2019 my blood test to check my thyroid levels started to come back with “erratic” results.  Because of this my GP referred me to an Endocrinologist.  I saw my specialist in November 19.  He ran some blood tests and the next morning he telephoned me and asked me to go straight back to the hospital.  The blood tests taken were showing that my cortisone levels were “undetectable”.  My Consultant was concerned that I was at risk of going into an adrenal crisis.  I went back to the hospital and they repeated the tests and they came back with the same result.   My Consultant put me on medication that day to replace the cortisone that my body wasn’t making and told me that he suspected that I had Addison’s Disease.  It took some more tests over the next few months to confirm the diagnosis.

Once the diagnosis was confirmed I was given an emergency cortisol injection and advised to carry it with me at all times in case of an adrenal crisis.

I was told that I had to be constantly aware of the risk of a life-threatening adrenal crisis.

What is an Adrenal Crisis?

An adrenal crisis happens when levels of cortisol in your body fall significantly.

When you are replacing cortisol in your body artificially (with medication) there is always the risk that you are replacing the wrong amount.  If your body uses more than usual this can result in an adrenal crisis.  Your body will use more cortisone when fighting an infection, stomach bug, dehydration, trauma (physical or emotional) and surgery. 

I was advised on when/how to increase my dose of replacement cortisone and trained on how to use my emergency injection should I start to go into a crisis.

If an adrenal crisis is not treated, it can lead to a coma and death.  There is a risk of the brain being starved of oxygen and permanent disability.

What were the main symptoms that you suffered prior to diagnosis?

My symptoms started in January 2019 (approx. 10 months prior to diagnosis). My main symptoms were overwhelming fatigue, extreme sensitivity to the cold, muscle weakness and a general feeling of weakness.  I felt that my energy levels were completely depleted at times.  I went from doing 3-4 exercise classes a week with long hill walks at weekends to coming in from work and going straight to bed and spending my weekends napping during the day.

What is the treatment?

The main treatment is replacing the cortisone with steroid hormones but varies slightly from patient to patient.

How long did it take for you to feel better?

I started to improve almost straightaway, but it took about 12 months for me to feel back to my old self again.

How does it affect you everyday day and how do you manage the disease?

I take my medication 3 times a day at specific times.  At first, this seemed like quite a bind but I have got used to it now. I am more in tune with my body and pick up on signs of infection/stress etc and increase my medication.  I am very grateful that I didn’t have this disease when I was younger as I think it would have been a lot more difficult to manage in my teens or when I was looking after a young family.

I wear a medical alert bracelet and carry an emergency injection with me at all times.  I have also shown my close family how to prepare and administer the injection.  There are some great Youtube videos showing how to prepare and administer the injection. (links below)

“Adrenal crisis: when to give an emergency injection”

“Addison’s Disease: emergency injections – tips and reminders”

I follow Addison’s Disease Self-Help Group on social media and have found it to be really helpful to connect with other people in a similar situation.

Are there any side effects from the medication?

I suffered quite badly at first with swollen painful feet and ankles.  I now wear compressions socks every day and this really has made a huge difference.

Have you ever had an Adrenal Crisis?

Yes, hopefully my first and last! It was 12 months after my diagnosis.  I had to take one of my cats to be put to sleep and was feeling quite emotional and very sad.  My body must have used a lot more than the usual amount of cortisone to deal with this and I started to feel incredibly sleepy, confused and very shaky.  My daughter was able to administer the injection and call an ambulance.  I did have to go to A & E for more cortisone via a drip but was able to come home after a couple of hours.  I feel a lot more aware now around the risks and signs that I might need more cortisone. 

What are the signs of an Adrenal Crisis?

• Abdominal pain or flank pain.
• Confusion, loss of consciousness, or coma.
• Dehydration.
• Dizziness or light-headedness.
• Fatigue, severe weakness.
• Headache.
• High fever.
• Loss of appetite.

What are the symptoms of undiagnosed/untreated Addison’s Disease?

• Overwhelming exhaustion and lack of energy
• Loss of appetite and unintentional weight loss
• Dizziness on standing
• Low blood pressure
• Patches of skin that are darker than the surrounding skin (hyperpigmentation)
• Craving salty foods
• Feeling and being sick
• Muscle weakness and cramps
• Abdominal pain
• Abnormal drowsiness or tiredness 
• Low mood
• A frequent need to pee
• Increased thirst
• Difficulty concentrating
• Headaches
• A higher temperature than normal

You can learn more about Addison’s disease on the self-help group website here or via the NHS website here

Steve Burne was an avid fundraiser and set up the Steve Burne Charitable Trust. Steve sadly passed away but the charitable trust lives on and is dedicated to continuing his legacy and raising funds for charity. Some of the charities they have fundraised for include Ronald Macdonald House, Cash for Kids and The Christie.

If you would like to learn more or donate to The Steve Burne Charitable Trust you can visit their just giving page here.

No young person should have to battle cancer but unfortunately many do every day. The Teenage Cancer Trust is there to support them on their road ahead so they aren’t alone. They support young people aged 13-24 to improve the cancer experience and hopefully make life a little easier for them during such a challenging time. Read more about them here.

Cancer Research UK receives absolutely no government funding but is essential to finding new treatments and cures for cancer. A number of our staff have seen their loved ones affected by cancer and sadly lost friends and family to it. To help beat this awful disease we formed a voluntary fundraising group called COS & Friends which was led by staff member Becky Vanden. Our fundraising group raised a total of £30,000 for Cancer Research UK. To read more about Cancer Research UK you can visit their website here.