Addison’s disease patient at rest
The purpose of this blog is to help people with Addison’s share their experience of symptoms and diagnosis. It is worth mentioning that the condition is also known as Hypoadrenocorticism, primary adrenal insufficiency or hypoadrenalism.
As these names suggest this rare condition (maybe 1 in 10,000 people) impacts the adrenal glands. More common in women than men it affects the production of two vital hormones called cortisol and aldosterone.
Initial symptoms are similar to other conditions, they include:-
a) Fatigue
b) Feelings of depression
c) Poor appetite
d) Increased thirst
e) Weakness of the muscles
Addison’s disease is a chronic condition and symptoms can worsen to include dizziness, fainting and exhaustion.
In extremes cases the condition can lead to what is called either an Addisonian crisis or adrenal crisis. Because this can end in a coma it is vital that if you have any concerns that you might have Addison’s disease you see a healthcare professional as soon as possible.
For more information on Addison’s disease can we suggest you visit the Addison’s disease UK Self Help web site at http://www.addisons.org.uk/?
As we said we are keen to find out how you were diagnosed and when you found out you were affected by Addison’s disease. We would also like to explore whether you are supported emotionally by your family, friends and healthcare professionals and if you are working, by your employers.
The kinds of things you might like to include would be
1) Please tell us the story of your diagnosis! Who diagnosed you? When? What symptoms or events prompted your diagnosis of Addison’s disease, if any?
2) What tests were done to establish or confirm your diagnosis?
3) What physicians/specialists have you seen in connection with your Addison’s disease? Who do you see on an on-going basis? Who do you see occasionally?
4) Have you experienced an Addisonian crisis?
5) What kind of physical and emotional support do you receive from family, friends, physicians and the emergency services?
6) Have you had to change your diet and lifestyle routine to cope with the disease?
I look forward to your comments and ideas. It would be great if you would use the comments box below to share your story! Also if you have any links you have found useful in the past it would be great if you could share them!
Hi i have many awareness posters on my page if anyone would like to share them also some hoodie and t.shirt designs, im glad this has been kept with my blue butterfly for Ai theme. It is also now a recognised awareness day in the uk June the 6th Molly’s worldwide picnic was a great success and we hope to repeat it next year https://www.facebook.com/rachelpeglersavinglivesforsterioddependants
Some of my symptoms were classic, others not so. The first indication that something was quite wrong was getting ITP, idiopathic thrombocytopenic purpura, when my spleen removed all my platelets. Apparently Addison’s can cause this.
It was two years later that I finally got diagnosed with Addison’s. I was tired continuously, had headaches, muscle weakness and pain, no underarm hair, couldn’t walk or stand easily, a small patch of hyperpigmentation, and I think other things, but can no longer remember. My GP said it was my age.
My asthma got worse and my periods stopped. Eventually, I went to see a private physician out of total desperation. He asked loads of questions and took loads of blood. Initially, he thought chronic fatigue, but the blood tests showed no cortisol.
I was referred to an endocrinologist, who did a short synathen test, the response was low. This endo moved away and I now have a new one. I see her every six months. Sometimes I’m well and operate normally, exercise etc, other times I’m not so good.
My problem is infection, my immune system is now weak. I’ve had one crisis, caused by a chest infection and UTI. I was unconscious for three hours and spent a few days in hospital receiving IV fluids. As the dr said,’ infection is not the friend of Addison’s!’
My hydrocortisone is given to me on prescription by my GP. I increase when I need to. My endo believes that I need to judge it myself. My usual daily dose is 20mg. I increase with illness.
I carry an emergency injection and the paramedics used it when I was unconscious.
I also have pernicious anaemia, which often goes with Addison’s.
I consider myself lucky to be alive. Quality of life isn’t always good, but I’m here and have more time with my children. I’ve had lots of advice from Addison’s support groups on Facebook and I’ve made many Addisonian friends all over the world. I’ve found the medical help from drs very limited.
I was diagnosed on the basis of a classic list of symptoms:
1. hyperpigmentation including a bronze tan, dark brown lines in body creases (palms of hands, for example), dark brown lines on pressure points (waist and bra line), dark purple brown mucosal tissue (inside of mouth).
2. low and steadily fallng blood pressure (60/40 at the time of diagnosis)
3. low sodium and high potassium (out of range) and worsening
4. loss of underarm hair
5. ongoing nausea, vomiting, and weight loss (45 pounds)
The hyperpigmentation, low sodium coupled with high potassium, and loss of underarm hair are fairly specific to Addison’s disease and thus more useful that the fatigue, anxiety, depression, and brain fog which you see talked about on the internet. These are physical symptoms which can be seen and the doctors will not tell you it is all in your head.
The diagnosis was confirmed by :
1. cortisol measurements at 8 am and 8 pm. The morning one was about 10% of normal; the evening one, which was similar, was close to the bottom of the reference range
2. ACTH stim test to which there was zero response
3. Adrenal antibody test, which was positive, confirming that the Addison’s was autoimmune in origin.
I was diagnosed by a doctor of Internal Medicine. I have seen three endos, once each, between 1995 and 2003 – all of whom felt I was doing well and saw no need for a repeat visit. My prescriptions come from my family doctor, and I am now on my second one as the first one retired.
I have not had a crisis, but I am scrupulous about taking my medication regularly at the same time each day. Since gastroenteritis is the most common cause of a crisis, my guideline is ‘vomit once take hydro, vomit twice go to ER’ and I have always been given (on the advice of emergency letters which I carry, signed by my doctor) fluids and cortisone before I am in a crisis. I carry an emergency injection but have never used it. Except for some planning and preparedness in terms of the meds, I don’t find that there is much to coping with Addison’s, I don’t ask for ongoing support, and I don’t feel it has much impact on my lifestyle – except that I am twenty years older than when I got sick which would not have happened without treatment. I am truly grateful.