ABOUT Addison's Disease
Addison’s disease, also called adrenal insufficiency, is a rare, life-threatening autoimmune disorder that occurs when your adrenal glands (located just above the kidneys) do not produce sufficient quantities of life-sustaining hormones mainly cortisol and aldosterone.
It affects roughly 10 people in 1 million.
Adrenal Insufficiency leaves the person on replacement medication daily for survival for the rest of their lives and every day at risk of a life-threatening adrenal crisis.
In addition to not producing the life-sustaining hormone cortisol people living with Addison's cannot regulate their sodium/potassium levels (electrolytes), which is the electricity of your cells and constantly live in a state of imbalance.
People living with Addison's tend to require HIGH SODIUM diets to maintain these crucial blood levels to sustain life.
They tend to add a lot of salt to their meals & eat a lot of PICKLES!
People living with Addison's disease are lost in a shuffle of lack of knowledge and support in the medical community.
They are desperate for a means to connect, share, validate their journeys and improve their quality of life.
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Symptoms of Addison's Disease
The damage to the adrenal glands happens slowly over time, and symptoms occur gradually. The most common symptoms include:
Abdominal Pain
Abnormal Menstrual Periods
Craving for salty food
Dehydration
Diarrhea
Irritability
Lightheadedness or dizziness when standing up
Loss of appetite
Low blood glucose
Low blood pressure
Muscle weakness
Nausea
Patches of dark skin, especially around scars, skin folds, and joints
Sensitivity to cold
Unexplained weight loss
Vomiting
Worsening fatigue (extreme tiredness)
Diagnosis & Treatment
Diagnosis
Blood tests: These will be done to measure the levels of sodium, potassium, cortisol and ACTH in your blood.
ACTH stimulation test: This tests the adrenal glands’ response after you are given a shot of artificial ACTH. If the adrenal glands produce low levels of cortisol after the shot, they may not be functioning properly.
Treatment
The most common way to treat Addison’s Disease is the use of hormone replacement similar to those made by the adrenal glands; for instance, hydrocortisone, prednisone or dexamethasone pills to replace cortisol.
If you are also lacking aldosterone, you may receive fludrocortisone acetate pills. If you are taking fludrocortisone, your doctor might tell you to increase your salt intake, especially in hot and humid weather and after vigorous exercise. In emergencies and during surgery, the medicine is given intravenously (directly into a vein).
Some individuals use an insulin pump for their medication supplying them with a 24 hour subcutaneous supply of their life sustaining medications (steroids).
ADRENAL CRISIS
An Addisonian crisis is a dangerous event and can be fatal if a person cannot maintain cortisol levels. Immediate action needs to occur to ensure survival. An emergency injection of hydrocortisone is administered to the individual in the thigh.
A crisis could occur for numerous reasons including illness, injury, physical and emotional stress.
Symptoms of an Addisonian crisis include:
extreme tiredness and weakness
confusion, psychosis, and slurred speech
dizziness and feeling faint
nausea, vomiting, loss of appetite, and stomach pain
fever, chills, and sweating
sudden lower back or leg pain
dangerously low blood pressure
fast heart rate
skin reactions, including rashes
loss of consciousness
Convulsions are another possible symptom of the Addisonian crisis. The body’s muscles contract and relax quickly and repeatedly, resulting in uncontrolled shaking.
Someone in ADRENAL CRISIS or ADDISONIAN CRISIS requires IMMEDIATE medical intervention with an emergency injection.
Prognosis for an individual with Addison’s Disease
People who have Addison’s disease will need to take medicine for the rest of their lives.
A medical alert bracelet is essential to identify Addison’s disease in an emergency situation.
It is essential to always have extra medicine on hand in case of illness, injury and a simple need for more. Emergency shots ofcortisol are required quickly to save the individual's life during an Addisonian Crisis.
Jill's Infusion PUMP Treatment
You use an infusion pump for 24 hour continuous dosage of hydrocortisone. How did you start this treatment?
I learned about this option from a friend with Addison's Disease at a local support meeting. My endocrinologist at the time was not interested in exploring this option as treatment so I switched to one who was.
We initially were waiting on Health Canada's approval to us the pump as treatment. But I was able to purchase a pump OFF LABEL directly from MEDTRONIC and start treatment.
I had a CORTISOL CLEARANCE TEST to determine how fast I metabolize cortisol. Using Prof. Hindmarsh, who adapted the diabetic infusion pump technology for treatment for people with adrenal insufficiency, research we determined how to program them pump to best distribute my hydrocortisone over 24 hour period.
Once "THE BALL GOT ROLLING" it only took a few months until I was using the treatment.
How did using the infusion pump for treatment change the management of your Addison's Disease?
My experience has been life changing.
My quality of life, energy, mental focus and so much more has greatly improved.
Prior to the "PUMP" I taking hydrocortisone tablets 5-7 times through out the day in an attempt to have a better quality of life. The pump gave me my freedom back and also a sense of security of always having hydrocortisone in my body.
How often do you change the pump? Is it uncomfortable to wear?
My pump is changed every 2 - 2 1/2 days. The reservoir holds 3 ml of SOLU-CORTEF. Changing the pump is quick and easy. It takes me about 4 to 5 minutes.
I was very concerned initially what it was going to be like to have a 'device' attached to me all the time. From night number one I have never had an issue or felt uncomfortable. I easily move it around my body to suit my lifestyle.
If you are considering a PUMP for treatment and this concern is 'holding you back' do not let it. Small adjustment for potentially big gains.
Does the pump detect low cortisol levels?
The pump does not detect low cortisol levels. However, I do feel I experience fewer low cortisol episodes and these episodes are less severe. I always keep oral medications and my emergency injection with me at all times.
I am interested the pump but not sure if it is available in my country. I do I find out if it is.
I would recommend using the power of social media groups on Facebook. Reach out to see if anyone is using it in your area. Most endocrinologists unfortunately are still unaware and are uneducated on this treatment. Local support groups may also be able to guide you on whether or not it is available in your are.
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