Steroids Save Lives Campaign

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Adrenal patients need steroids just like diabetics need insulin, but awareness on adrenal disease is not as common as awareness on diabetes is.

We’re going to change that.

We’ve lost way too many in the adrenal community due to lack of steroids.
It’s time the truth of adrenal disease was told and this foundation is doing all we can to advocate for all forms of adrenal disease!

We invite you to join us in our social media awareness campaign #SteroidsSaveLives

Upload your awareness photos to social media and use the hashtag #SteroidsSaveLives to help us raise awareness that steroid medications are necessary for life in those with adrenal insufficiency!

We are going to END steroid shaming.

We are going to spread the message that steroids are necessary for adrenal patients to live.

No one should feel guilt for being on medications that keep them alive. 

STEROIDS SAVE LIVES! 


Tag @AdrenalAlternatives on instagram or
@AdrenalAdvocate on twitter. 


It’s time the truth of adrenal disease was told!

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How to Be Tested for Adrenal Insufficiency

Adrenal disease can be life-threatening and is rarely tested for. This post was written to explain how to be properly tested for adrenal disease. This is not to be used to diagnose or treat any condition. Contact your doctor before starting or stopping any medication or treatment.

There are many forms of adrenal disease-

(This is not an all inclusive list, there are hundreds of adrenal complications)

Adrenal Insufficiency- Disease of the adrenal glands, resulting in the lack of cortisol production. Can also result in lack of DHEA, aldosterone and disrupt the balance of endocrine hormones, electrolyte balances and blood sugar levels.

Primary Addison’s disease- Autoimmune disease resulting in the
destruction of the adrenal glands, rendering them unable to
produce proper amounts of cortisol, DHEA & Aldosterone.

Secondary Adrenal Insufficiency- When the pituitary gland does
not produce the hormone ATCH (Adrenocorticotropic hormone)
resulting in the lack of cortisol production in the adrenal glands.

Tertiary Adrenal Insufficiency- When the hypothalamus fails to
release CRH (corticotropin-releasing hormone) which stimulates the
production of ACTH by the pituitary gland.

Congenital adrenal hyperplasia (CAH)- Genetic disorder present from birth that impairs the adrenal glands. CAH patients lack the enzymes the adrenal glands use to produce hormones that help regulate metabolism, the immune system, blood pressure and other essential functions.

Cushing’s Disease- A rare condition that is the result of too much cortisol production in the body. One source of Cushings is when the adrenal glands have a tumor; making too much cortisol. Another cause of Cushing’s syndrome is when the body makes too much of the hormone ACTH; which causes the adrenal glands to make cortisol.

Possible Symptoms of Adrenal Insufficiency-

(Note- This disease is sometimes referred to as “Syndrome X” because it presents different in everyone. The following symptoms are possible ailments that may be present in adrenal disease but are not all inclusive.)

Pain in the abdomen or muscles or joints, dehydration, dizziness, fainting, fatigue, lightheadedness, loss of appetite, low blood pressure, low blood sugar, water-electrolyte imbalance, or sweating, nausea or vomiting, craving salty foods, darkening of the skin, excess urination, muscle weakness, reduced sex drive, or weight loss.

If you are craving sea salt or salty foods, PLEASE get tested. That is one of the most prominent signs of adrenal disease.

The primary diagnostic tests that endocrinologists use to diagnose adrenal disease:

ACTH stimulation test- Measures how well the adrenal glands respond to the release of the adrenocorticotropic hormone (ACTH). When this test is done, blood is drawn prior to injection of ACTH, then at 30 minute intervals for a few hours to test your adrenal response to the ACTH. If your cortisol levels do not rise properly, you are then diagnosed with adrenal insufficiency.

Dexamethasone Suppression Test- Tests adrenal gland function by measuring how cortisol levels change in response to the steroid dexamethasone. This test has historically been used to diagnose depression as well.

8am Cortisol Blood Draw- Your body’s natural cortisol levels should be the highest in the morning, according to your body’s circadian rhythm. If your AM levels are low, it indicates an adrenal issue.

(Saliva and urine tests are also performed, but are not as widely accepted for diagnostic criteria)

Alternative Test- An insulin tolerance test (ITT) is a medical diagnostic procedure during which insulin is injected into a patient’s vein, after which blood glucose is measured at regular intervals. This procedure is performed to assess pituitary function and adrenal function.

Important Warnings-

Use caution if you begin steroids before you have had an ACTH stimulation test. You will forever battle for the right diagnosis with an endocrinologist if you do. Steroids can cause adrenal suppression and if you do not get tested BEFORE your steroid use it can be assumed you have adrenal insufficiency due to steriod supression, even if that was not the reason you developed adrenal failure.

Do yourself a favor and get tested and discover your body’s natural adrenal function.

This is in no way suggesting someone in adrenal crisis should be withheld from steroid treatment.

This is simply stating that proper testing should be done before a long term steroid regiment is started.

Steroids are life saving medications for those with adrenal insufficiency, but they do come with side effects. (Such as- Weight gain, stretch marks, cataracts, glaucoma, easy bruising, acne, increased appetite, increased growth of body hair)

They are not medicines that you want to start on a whim.

Steroids CAN cause adrenal suppression. DO NOT get on them unless your doctor is SURE you need them.

(Acute uses of steroids are common for infections and asthma, this is not what I am talking about. Long term or repeated use DOES come with risks. Please be advised and ALWAYS consult your doctor regarding your medication use)

An adrenal crisis will lead to death if left untreated. If you suspect you are having adrenal issues, please request the following-

Tests-

ACTH Stim Test

or

Dexamethasone Suppression Test

Blood Tests-

Aldosterone, DHEA, Cortisol and Renin levels.

To read more about adrenal disease visit the following links-

Understanding Adrenal Disease

The Care and Keeping of Adrenal Disease

Video- How to easily explain Adrenal Disease
This post is not intended to diagnose or treat any medical condition. Consult your health care provider before starting or stopping any medical treatment. I am NOT a doctor, nor do I claim to be. I am simply an adrenal insufficient woman who has done much research to understand adrenal disease and seeks to help others understand as well.

Understanding Adrenal Disease

Adrenal Diseases-

Adrenal Insufficiency- Disease of the adrenal glands, resulting in the lack of cortisol production. Can also result in lack of DHEA, aldosterone and disrupt the balance of endocrine hormones, electrolyte balances and blood sugar levels.

Primary Addison’s disease- Autoimmune disease resulting in the
destruction of the adrenal glands, rendering them unable to
produce proper amounts of cortisol, DHEA & Aldosterone.

Secondary Adrenal Insufficiency- When the pituitary gland does
not produce the hormone ATCH (Adrenocorticotropic hormone)
resulting in the lack of cortisol production in the adrenal glands.

Tertiary Adrenal Insufficiency- When the hypothalamus fails to
release CRH (corticotropin-releasing hormone) which stimulates the
production of ACTH by the pituitary gland.

Congenital adrenal hyperplasia (CAH)- Genetic disorder present from birth that impairs the adrenal glands. CAH patients lack the enzymes the adrenal glands use to produce hormones that help regulate metabolism, the immune system, blood pressure and other essential functions.

 

Body Chemicals Affected in Adrenal Insufficiency-

Cortisol– Glucocorticoid hormone: The body’s stress hormone.

Aldosterone– Mineralocorticoid hormone: Regulates electrolyte balances by instructing the kidney to release potassium and retain sodium.

DHEA– Hormone that aids in the production of androgens and estrogens (male and female sex hormones)

(Blood sugar levels and electrolytes can also be impacted)

Diagnosis-

The primary diagnostic tests that endocrinologists use to diagnose adrenal disease:

ACTH stimulation test- Measures how well the adrenal glands respond to the release of the adrenocorticotropic hormone (ACTH). When this test is done, blood is drawn prior to injection of ACTH, then at 30 minute intervals for a few hours to test your adrenal response to the ACTH. If your cortisol levels do not rise properly, you are then diagnosed with adrenal insufficiency.
Dexamethasone Suppression Test- Tests adrenal gland function by measuring how cortisol levels change in response to the steroid dexamethasone. This test has historically been used to diagnose depression as well.

8am Cortisol Blood Draw- Your body’s natural cortisol levels should be the highest in the morning, according to your body’s circadian rhythm. If your AM levels are low, it indicates an adrenal issue.

(Saliva and urine tests are also performed, but are not as widely accepted for diagnostic criteria)

Easy Explanations-

Most people understand what diabetes is. Diabetes is the lack of the appropriate amount of insulin. Diabetics have to be vigilant of their blood sugar levels and manage their disease with insulin shots/pumps. This is very similar to Adrenal Disease. Just the like the diabetic, the AI patient has to have an external source for their deficiency, but instead of insulin- we replace cortisol. Unfortunately, unlike the diabetics, we have no meter to check our cortisol levels. We have to physically watch our symptoms and stress dose or use an emergency injection if we drop too low. Lack of cortisol is DEADLY. An adrenal crisis will occur if an AI patient does not have cortisol replacement.

Adrenal Crisis-

An adrenal crisis presents differently for everyone,
depending on which form of AI the person has.
Some possible symptoms are-
Blood Pressure/Heart Rate Changes, Weakness, Vomiting, Trouble Breathing, Anxiety, Flank/Back Pain,
Mental changes. These are not the only symptoms-
Everyone presents differently. It is important to always
wear a medical alert bracelet and have an emergency injection with you AT ALL TIMES.
Adrenal Crisis WILL result in death if left untreated.

Treatment of AI-

Medications such as Prednisone, Dexamethasone & Hydrocortisone replace the steroid hormone, cortisol in the body.

The medication Florinef (Fludrocortisone) is used to treat the lack of aldosterone in the body. Not everyone with AI needs this medication, it is mainly used in primary addison’s disease patients.

Side Note- Everyone is different! Not all steroids work for everyone!
Find the right one for YOU with your endocrinologist!

Managing adrenal disease is different for everyone,
but the absolute essentials for EVERY AI patient are-
Daily Replacement Cortisol Medication
Proper rest, hydration, stress management and nutrition.
Knowing the signs of low cortisol (there is no meter to check blood levels)
Respecting the physical limits of your body
Having an Emergency Injection of Cortisol at all times
Wearing a medical alert bracelet at all times

Adrenal disease certainly presents with  it’s own unique challenges,
but it is not impossible to live a happy life with A.I.

Proper self care, medication and stress
management is imperative to living
the best life possible.

This post is not intended to diagnose or treat any medical condition. Consult your health care provider before starting or stopping any medical treatment.

I am NOT a doctor, nor do I claim to be. I am simply an adrenal insufficient woman who has done much research to understand adrenal disease and seeks to help others understand as well.

Sources-

http://www.healthline.com/health/acute-adrenal-crisis#overview1https://www.niddk.nih.gov/health-information/endocrine-diseases/adrenal-insufficiency-addisons-disease

http://www.medicinenet.com/script/main/art.asp?articlekey=2191http://www.mayoclinic.org/drugs-supplements/dhea/background/hrb-20059173https://pituitary.org/knowledge-base/disorders/adrenal-insuffieciency-addison-s-disease

Adrenal Awareness Care Package Program

We are so excited to announce the Adrenal Awareness Care Package Program!

The Adrenal Awareness Care Package program is run by the Adrenal Alternatives Foundation and provides adrenal patients with comforting products and supplies as well as encouraging and educational resources to improve their lives as they fight this devastating disease.

To qualify, you must live in the United States and have been diagnosed with an adrenal disease.

(We hope to branch out to be able to ship care packages internationally at some point but for now only can ship in to the USA due to costs)

Applications will be considered by the Foundation.

Our Care Package program will begin taking applications now through April of 2019 and we will begin our package distribution in the summer of 2019.

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Applications for the following year will be accepted again in January of 2020.

To apply, please fill out the application at the link below.

https://docs.google.com/forms/d/e/1FAIpQLScgu4TctP0LcrqEu4KQKU-krHAG7wPehABGgqCXTJ8h79RCcw/viewform?usp=sf_link

Wishing you all comfort and cortisol,

The Adrenal Alternatives Foundation

Understand your Adrenals Series

One of the main goals of this Foundation is to bring awareness to Adrenal Disease.

We are pleased to announce we have collaborated with the healthcare education site- ZUBIA ( https://zubialive.com/ )  to teach a 4 part webinar series designed to educate the world on the adrenals, what they do and bring awareness to adrenal issues.

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The videos are posted below-

Episode 1- What do the Adrenals do?

Episode 2- Adrenal Fatigue VS Adrenal Insufficiency

Episode 3-  Types of Adrenal Diseases/Problems

Episode 4- Keeping your Adrenals Healthy