In America April is Adrenal Insufficiency Awareness Month.
INSUFFICIENCY = the inability of an organ to perform its normal function.
What is Adrenal Insufficiency and what is Adrenal Fatigue?
Adrenal Insufficiency as described by Patients.UK:
Adrenal insufficiency leads to a reduction in the output of adrenal hormones, ie glucocorticoids and/or mineralocorticoids. There are two types of adrenal insufficiency:
- Primary insufficiency – there is an inability of the adrenal glands to produce enough steroid hormones (Addison’s disease is the name given to the autoimmune cause of this insufficiency). Glucocorticoid and often mineralocorticoid hormones are lost.
- Secondary insufficiency – there is inadequate pituitary or hypothalamic stimulation of the adrenal glands.
- Signs and symptoms of adrenal insufficiency may include:
- Body aches
- Unexplained weight loss
- Low blood pressure
- Loss of body hair
- Skin discoloration (hyperpigmentation)
- Primary insufficiency – this is a relatively rare condition. The annual incidence is about 1 in 10,000 people, with a prevalence in the UK of about 8,400. All age groups can be affected but the most common onset is between 30 and 50 years. More women than men are affected. (In New Zealand, that would be approximately 400 people at any given time)
- Secondary insufficiency – bearing in mind the many factors that can lead to suppression of the hypothalamic-pituitary axis (of which the most common is exogenous steroid use) it is not surprising that this is a relatively common condition. One American study found that 31% of patients admitted to a Critical Care Unit were suffering from secondary adrenal insufficiency.
Addison’s disease is the term used to describe adrenal insufficiency but it can have many causes. 70-90% of cases of Addison’s disease have an autoimmune basis. This is characterised by progressive destruction of the adrenal glands – most likely the result of cytotoxic T lymphocytes, although 50% of patients have circulating adrenal antibodies. Clinical and biochemical insufficiency only occurs once >90% of the gland is destroyed.
Adrenal Fatigue as described by the Mayo Clinic:
Adrenal fatigue is a term applied to a collection of nonspecific symptoms, such as body aches, fatigue, nervousness, sleep disturbances and digestive problems. The term often shows up in popular health books and on alternative medicine websites, but it isn’t an accepted medical diagnosis.
Your adrenal glands produce a variety of hormones that are essential to life. The medical term adrenal insufficiency (Addison’s disease) refers to inadequate production of one or more of these hormones as a result of an underlying disease.
Adrenal insufficiency can be diagnosed by blood tests and special stimulation tests that show inadequate levels of adrenal hormones.
Proponents of the adrenal fatigue diagnosis claim this is a mild form of adrenal insufficiency caused by chronic stress. The unproven theory behind adrenal fatigue is that your adrenal glands are unable to keep pace with the demands of perpetual fight-or-flight arousal. As a result, they can’t produce quite enough of the hormones you need to feel good. Existing blood tests, according to this theory, aren’t sensitive enough to detect such a small decline in adrenal function — but your body is.
It’s frustrating to have persistent symptoms your doctor can’t readily explain. But accepting a medically unrecognized diagnosis from an unqualified practitioner could be worse. Unproven remedies for so-called adrenal fatigue may leave you feeling sicker, while the real cause — such as depression or fibromyalgia — continues to take its toll.
So what does that all mean to Addisonians?
So why then, can’t Adrenal Insufficiency be cured?
If you have been diagnosed with Adrenal Insufficiency you have a chronic (life long) medical condition. Your adrenal glands do not produce the Cortisol that your body needs, to live. They can not be transplanted.
Cortisol is called the Stress Hormone because everything your body does, needs cortisol to do it, and if you are under stress, you produce more. When you don’t produce cortisol, and you are under major stress (illness, accident etc) your body goes into shock, and if not treated, YOU WILL DIE!
Why am I telling you this?
To understand Adrenal Insufficiency, you need to understand the difference between this and “Adrenal Fatigue”.
“Adrenal Fatigue” – can’t be diagnosed with blood tests/ MRI’s, CTS’s. Will not kill you, and does not cause a life threatening “crisis” when you get sick.
“Adrenal insufficiency” – Diagnosed with blood tests/ MRI’s, CTS’s. If you become ill, and you do not receive the correct medical care, IT CAN KILL YOU.
So why then, do people get a diagnosis of “Adrenal Fatigue” every day somewhere in the world, and those with Adrenal Insufficiency mostly get diagnosis when in ICU in Adrenal Crisis, and close to death, or at autopsy because they died from an Adrenal Crisis?
Is it because there are so many “Dr’s” putting “Adrenal Fatigue” out there as the answer when they don’t have an answer. Is it a lazy diagnosis. If you have Adrenal Fatigue, be very careful, you may actually have a genuine, life threatening form of Cushings or Adrenal Insufficiency.
Now here is the scary thing for those who have been told they have adrenal fatigue. It is now believed that 30%+ of those who have been diagnosed with “Adrenal Fatigue” have had a TBI (Traumatic Brain Injury) which can include something as simple as a bad concussion, and have had damage to their pituitary gland which shows up well after the event (20-30 years later for some), and they have been miss-diagnosed.
How Can You Help?
70%+ of people with Adrenal Insufficiency receive facebook posts, emails, books, or some other form of information on how This person, or That Person, had AI and is cured!
“Look, read this. If you rest, eat a clean diet, get off the Steroids, you will be cured.”
To all those well meaning people that send their friends, relatives etc, information how someone recovered. Trust me. IF YOU HAVE PAI AND STOP YOUR MEDS YOU WILL DIE! No doubt! It may not happen over night, but it will happen within 3-5 days.
Ok, it is here that I will say that a very very small sub group of people with Secondary Adrenal Insufficiency are lucky. With the right medical supervision, they can reduce their oral hydrocortisone slowly, and “kick start” their adrenal glands. BUT it is a VERY LIMITED FEW Secondary AI. And that is because of the way they got AI in the first place.
If you know someone, or you have someone in the family, a friend, a work make, who has Adrenal Insufficiency (more commonly called Addison’s Disease) support them by learning about their condition. Each person, and how they manage their illness, is different. The best friend or relative you can be, is to ask them about their symptoms or problems and how they deal with it on a day to day basis. BELIEVE them about it, and ask what you can do to help if they are ill.
Learn what to do in an emergency, and how to be their advocate when in Hospital.
One of the first signs of an impending Adrenal Crisis, is the inability to actually realise they are about to go into crisis. They find it hard to make a decision.
For Derek, when he appears unwell and I ask if he is ill it is generally when he says he doesn’t know, that I know he is suffering the most. When he is actually going into crisis, he is even less sure about what he should do.
So what DON’T you do? DON’T tell them that your cousin’s, wife’s, sisters, husbands, brother had AI and is cured!
Not all Doom and Gloom
When you are first diagnosed, you are told you can live a “normal” life. That is not strictly true. If you are lucky, then with good Dr’s, good education, and good management, you may be able to live a “good” life.
Throughout the internet you can find examples of those that suffer daily, those that regularly go into crisis, and those that compete in the international arena in sport, are award winning Music artists, even one US President.
Don’t be fooled though, the Olympic Athlete, the Gold Record Selling Music Artist, and the US President all have or have had, a great medical team around them at all times, checking them, keeping an eye on them, adjusting their medication and trying every day to make their Patient look “Normal”.
Most people can’t afford that 24/7 care. They find ways to manage their illness so they can have more control, and achieve what they want.
One of my Hero’s (if you can call a woman that) is a young lady called Amber, who is an inspiration to many in the way she pushes through her illness, to be Clearly Alive.