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Advocacy

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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Advocacy

What is the Cortisol Pump?

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What is the cortisol pump?

Basically, the cortisol pump is a repurposed insulin pump that delivers solu-cortef instead of insulin.

The use of solu-cortef (injectable version of cortisol when mixed with saline) is placed in an insulin pump that is programmed to disperse cortisol according to circadian rhythm dosing by programming rates of basal delivery into the pump. The pump also has options to bolus for stress dosing.

This helps adrenal patients maintain better control of their cortisol levels by allowing them to get cortisol quicker instead of waiting until steroid pills metabolize through the stomach and finally enter the bloodstream.

This therapy bypasses the gastric system and is able to deliver cortisol in a more consistent way. With a pump, an adrenal insufficient patient can receive a constant supply of cortisol and will not suffer the ups and downs with oral cortisol replacement tablets. They are able to sleep through the night without having to wake up to take steroid pills.

This can be of great benefit to adrenal patients who are hypermetabolizers of cortisol. Some patients have to take medications more frequently than others due to their body’s high cortisol clearance rate. The pump is a great asset to these patients because they are no longer forced to take pills every couple of hours around the clock.

Side effects due to mal-absorption can be decreased and patients have been reported to have improved sleep, weight management, gastric issues and experience an overall improvement in their energy levels and sense of well-being as opposed to taking steroid tablets.

Professor Hindmarsh, of CAHISUS is a pioneer for this life changing treatment.

For more information on the medical information visit his website-http://www.cahisus.co.uk/pdf/USING%20THE%20PUMP%20METHOD%20IN%20ADDISON%27S.pdf

The pump is not a cure for adrenal disease and is difficult to obtain. This treatment is relatively an unknown in the United States and this foundation is actively working to raise awareness on this alternative treatment to managing adrenal insufficiency.

It is a difficult process but it IS POSSIBLE!  For more information please read our article on HOW TO GET ON THE CORTISOL PUMP.

If you feel you could benefit from the cortisol pump, speak with your endocrinologist but be prepared to hear “NO.”

Don’t lose heart!

There are doctors in the USA who will manage this treatment and we hope to continue raising awareness so that one day it will be as available to adrenal patients as it is to diabetics.

We’re here to lead all adrenal patients to every adrenal alternative!

 

 

 

 

 

Advocacy

HOW TO GET ON THE CORTISOL PUMP

 

 

HOW TO GET ON THE CORTISOL PUMP-

Step 1- Assess your life, health and disease management.

The cortisol pump is not a cure for adrenal insufficiency and is not a treatment that is right for everyone. If you are well managed on the steroid replacement pills, the adrenal pump is excess money and effort you may not need.

The pump is NOT an easy thing to acquire and the fight to get one takes a great deal of trouble, mental stamina and resources.

You need to consider whether this is something you actually need or not.

Here is a link to a wonderful post about 5 reasons NOT to get a cortisol pump by a lovely woman who has adrenal insufficiency and is on the pump. Reasons NOT to Get a Cortisol Pump

That being said, If you are struggling with your quality of life this treatment may help you.

Step 2- Research, Learn and Educate for yourself!

Adrenal insufficiency is a rare disease not widely understood in the medical community. You need to become an expert on your own health, especially if you are attempting to get on the pump.

Most doctors barely know anything about adrenal disease. They have been taught that replacement therapy with pills is the only treatment and that patients live a normal life with this disease.

Nothing could be further from the truth.

You need to understand your specific health concerns.

Information you need to know-

What is your diagnosis? Do you have primary Addison’s disease, secondary adrenal insufficiency, tertiary adrenal insufficiency or congenital adrenal hyperplasia?

If you are unsure, here is a link to Understanding Adrenal Disease

What is your quality of life? Are you able to work, drive, do housework or function normally?

What have you tried to manage your adrenal disease?

Typically an endocrinologist will not even consider the pump until you have tried EVERY oral steroid possible.

What is your current daily dose of replacement steroid?

How much are you stress dosing?

What other medical issues do you have?

Are you able to afford the supplies and medication needed for the pump? Insurance does not typically cover “off label” treatments.

 

This disease is expensive and life threatening if left untreated. If you have A.I you HAVE to have some sort of steroid replacement to stay alive.

Just educate yourself on everything you need to know. You will have to present YOUR case to an endocrinologist to get the cortisol pump. Which brings us to the next point.

Step 3- Finding An Endocrinologist

This will be a difficult part of your journey to the pump. Finding an endocrinologist that understands adrenal insufficiency is a needle in a haystack and then finding one who will be brave enough to attempt guiding you through pump therapy just adds to the challenge.

Prepare the best case possible. Send your research, your health information, everything you can to the endocrinologist BEFORE your appointment so they are aware of your intentions before hand. Write a letter to the endocrinologist explaining diagnosis, failed treatments and desire to be on the pump.

You will have to fight to find a doctor willing to write the script for the pump. It will take effort, lots of research and a mental stamina.

Step 4- Battling the Insurance Company

Adrenal Insufficiency is documented to be treated by oral steroids and not by the insulin pump. Be prepared to be on the phone for hours and be told incorrect information. Just be aware that you will have to tell the same story to a different agent over and over and over again. Don’t give up.

 

Step 5- Getting A Pump & Supplies

If your insurance cooperates and provides you with a pump and supplies, GREAT! But I’m pretty sure with A.I it won’t be that easy.

Take heart, there are other options.

There are many ways to obtain a pump and supplies: Diabetic Barter Sites, Facebook Groups, Craigslist and Ebay.

The internet is a plethora of connectivity. You can find what you need, you just have to put in the effort to look.

Step 6- Waiting for the Pump

If you are not doing well on pills, switching to subcutaneous injections of solu-cortef may be an option while you are waiting.

To figure out your dose, You need to convert it from oral milligrams to liquid solu-cortef.

2 units= 1mg if you are doing a 2:1 ratio with actovials of solucortef.

You can also run a 1:1 ratio with 1ML of saline per 100mg of solucortef powder vials.

You also need to dose according to the circadian rhythm percentages.

Circadian dosing method example-

6am and 12 noon 40%

12 and 6pm 20 %

6pm to Midnight 10-15%

Midnight and 6am 25-35%

Source for the dosing is based on Professor Hindmarsh’s research (link posted below)

http://www.cahisus.co.uk/pdf/CIRCADIAN%20RHYTHM%20DOSING.pdf

Use solu cortef solution and inject with insulin needles.

The standard recommendation is to have lab testing to see how quickly you absorb and “use” the cortisol in your body.

You can have cortisol clearance testing done but it is not typically covered by insurance. It is beneficial to creating proper rates for your specific needs. A pump is only as good as the information programmed into it.

Step 7- Staying Sane

The process to get on the pump is long, obnoxious and detailed. No one should have to fight for years to get better quality of life. The healthcare system is broken and changes need to made. This stands for all diseases and treatments, not just adrenal disease.

Everyone should have access to a better life.

Take heart friends, Our voices will be heard.

This foundation is dedicated to adrenal disease advocacy.

 

Uncategorized

Understanding Fludrocortisone

This was written by an Addison’s disease patient and is not intended to diagnose or treat any medical condition. Consult your health care provider before starting or stopping any medical treatment.

DISCLAIMER- NOT TO BE USED TO REPLACE MEDICAL CARE OR GIVE MEDICAL ADVICE

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.

What is Florinef  “Fludrocortisone?”

Medication used as partial replacement therapy for adrenocortical insufficiency and for the treatment of salt-losing adrenogenital syndrome.
May also be used for treatment of POTS syndrome. A potent mineralocorticoid medication used to replace aldosterone in adrenal insufficiency and salt wasting syndromes.

What are Mineralocorticoids?

A class of steroid hormones produced in the adrenal cortex and influence salt and water balances in the body. The main mineralcorticoid is aldosterone.

What is Aldosterone?

Aldosterone affects the body’s ability to regulate blood pressure.
It sends the signals to the kidney to regulate the amount of sodium the body sends into the bloodstream or the amount of potassium released in the urine.
It causes the bloodstream to re-absorb water with the sodium to increase blood volume.
Aldosterone also helps maintain the blood’s pH and electrolyte levels.

Understanding Aldosterone-

Aldosterone is closely linked to two other hormones: renin and angiotensin, which create the renin-angiotensin-aldosterone system. It is essential in regulating proper blood pressure and electrolyte balance in the body.

What is Renin?

An enzyme secreted by the kidney that is part of a physiological system that regulates blood pressure. In the blood, renin acts on a protein known as angiotensinogen, resulting in the release of angiotensin I.

What is Angiotensin?

A group of hormones that are part of the renin-angiotensin system.
To create angiotensin, the liver creates a protein called angiotensinogen. This protein is broken up by renin, which comes from the kidney. This forms angiotensin I. Angiotensin I passes through the bloodstream, where it turns into angiotensin II, which is the primary form of the hormone that affects blood pressure and other areas of the body.

Explanations-

Simply put- Proper aldosterone levels are essential to the synergy of chemicals in the body.  In adrenal insufficient patients- fludrocortisone is used to synthetically balance electrolytes and blood pressure levels.

Dosing-

With any other steroid medication, general recommendations are to start out on the lowest dose possible and adjust according to blood renin levels and electrolyte levels determined through a blood metabolic panel lab result.

Warnings-

Fludrocortisone is a potent medication that directly affects cardiac function.
Too high of a dose can lead to high blood pressure, stroke, swelling, weight gain and mental disturbances. Be vigilant of any changes your body is presenting and contact your doctor if you exhibit any of these issues.

Sources-

https://www.rxlist.com/florinef-drug.htm

http://www.hormone.org/hormones-and-health/hormones/aldosterone

https://www.britannica.com/science/renin
http://www.hormone.org/hormones-and-health/hormones/angiotensin

http://www.sciencedirect.com/topics/neuroscience/mineralocorticoids

The Hormone Health Network

Science Direct

Uncategorized

Mania, Psychosis and Steroids- Jen’s story

All medicines come with side effects, some good, some bad. The corticosteroid, Hydrocortisone, is no exception. When I started taking Hydrocortisone, I remember reading about the physical side effects and thinking to myself “Well, this is a medicine that is literally saving my life, so I can deal with a few side effects.” However, neither one of my doctors or my pharmicist warned me about the psychological side effects of Hydrocortisone, so when those popped up, I was left feeling confused…and yes, I’ll say it, I ended up feeling “crazy.”

At first, I felt super happy. My anxiety had decreased, I felt less “sick,” I had more energy and felt somewhat normal again. I had a euphoria that felt almost as if I was “high on life.” What I didn’t realize is that Hydrocortisone actually does affect the areas of the brain that manages the regulation of serotonin and dopamine, the “feel-good” hormones.

Feeling happy is a great side effect to have. However, as time went on, other psychological side effects popped up that were not only startling but also very scary. And what scares me even more is the fact that not one doctor that I have seen, both in the hospital and out of the hospital, since being on corticosteroids, has told me that there are mental side effects of being on them. Not to completely pass blame to doctors, as I think a lot of it has to do with lack of knowledge.

The Subtle Mental Side Effects

Side effects can have a wide spectrum, so when you do experience having them, you may not think of them having anything to do with a medication that you weren’t told would cause any mental side effects in the first place. Subtle side effects that I had were anxiety, agitation, irritability, insomnia, lack of concentration, lack of focus….just to name a few. When I talked with my doctors about these symptoms, I was told to take a sleep aid, to take things for ADHD, I was put on two separate anxiety medicines, and even on an antipsychotic medication. I finally drew the line when my doctor wanted to add an antidepressant into the mix.

The Not So Subtle Mental Side Effects

When I was on oral Hydrocortisone, I was sick a lot. I spent a lot of time in the hospital and even though my body required high doses of steroids while I was in the hospital, the doctors didn’t warn me about the psychological side effects of being on high amounts…and more importantly, what can happen when you go from being on a high amount to all of a sudden going back to a normal dose, without tapering. When I was in the hospital, and on high amounts, I felt manic and didn’t sleep. Whenever I went home and went down to my normal dose, I felt lethargic and depressed…thinking it was just a normal emotional response from being in the hospital.

And then…one of the worst possible mental side effects appeared into my life overnight… corticosteroid-induced temporary psychosis…

Choo Choo….All Aboard The Crazy Train

Have you ever wondered what it would be like to wake up one day and be Superman or Superwoman for a day? How about for a few weeks? Imagine feeling the happiest feelings you’ve ever felt in your life and how nothing and no one could take that feeling away from you. Being on top of the world, not needing sleep, having zero fears, laughing all of the time, spending money like there were no limits on your bank account, feeling like you no longer “need” to take any medications, including your corticosteroids… Sounds great, right?

Although I have never experimented with drugs, I imagine that you could probably compare it to the feeling of being “high” 24/7. I felt like my brain was working at top speeds. Not only my brain though…everything I did was at top speeds. I worked a lot of extra hours, I was creative, and I felt like the Energizer Bunny. I had no idea where this “new me” came from, but I loved her! And at first, my family also loved her. My kids thought that I was hilarious and really fun to be around. They loved that I was spending a lot of money on them and had a Y.O.L.O outlook on life.

But after a while, my husband and family started getting worried about me. I did a lot of online shopping and would unintentionally order multiple items, thinking that I only ordered one, but when packages just kept arriving, I justified “needing” 20 new pillows, 2 different colored sets of pots and pans, 3 different pairs of sunglasses for my husband, and a lot of other things that I can’t even remember. I gave my daughter my debit card and told her to go on a shopping spree, bought my son a cell phone for Christmas in “October,” took my daughter to get a piercing just because she wanted one, and was about to just randomly get a new tattoo, until my husband called and the kids told him what I was about to do. That night, he “grounded” me from my debit card and my car keys.

I also abruptly stopped taking my anxiety medications, and got to the point of not taking my Hydrocortisone like I was supposed to either. I thought that my Adrenal Insufficiency was completely healed and that I did not need Hydrocortisone anymore, but I didn’t tell anyone. I kept having symptoms of being low in cortisol and when my husband asked when the last time I took my steroids, I couldn’t honestly remember. At one point, he had to threaten to give me an emergency injection because I refused to take my pills.

Once he realized that I was putting my life in danger by not taking my life-saving medications, he called my doctor. She basically told him not to worry, and explained to him that I was experiencing a corticosteroid-induced temporary psychosis from going from a high dose in the hospital to my normal dose, without tapering. At that point in my treatment, I had no idea what tapering was. My doctor had never mentioned it, the doctors in the hospital never mentioned it, and I was following their orders of going home and going back onto my normal dose. She did order an MRI of my brain to rule out a tumor, but told him that we just had to “ride it out.”

Please Fasten Your Seatbelts…The Plane Is About To Crash

Ok, so imagine having extreme mania (on top of the world, no fears, tons of energy) when you went to sleep one night….and waking up the next day feeling scared of your own shadow, lethargic and completely depressed. When the psychosis wore off, it wasn’t something that happened slowly and over time. It was literally like someone had gone into the electrical box in my brain and reset the breaker, but decided to leave the switch off for a while.

I literally would sleep for 20 plus hours a day, only really waking up to take my medications and sometimes eat food. When I was awake, I was full of anxiety and depression. I not only was terrified of talking to people, going places, but I was convinced that I was dying.

Thankfully, I was never suicidal, although I have read about people becoming suicidal, as another mental side effect. Because we are so wired to listen to doctors, the advice of just “riding it out” was what my husband did.

It wasn’t until recently, when I was researching the psychological side effects of corticosteroid use, that I discovered that there are recommended treatment options to safely bring a person out of the corticosteroid-induced temporary psychosis.

Does The Story End There?

I wish I could say that was the last time I experienced any kind of mental side effects from the steroids. Unfortunately, I have had my share of them…. Having Adrenal Insufficiency is a very difficult disease to manage for most people. Just when you “think” you know everything there is to know, something will pop up, leaving you questioning everything you know about it. Like I said, I recently was researching the psychological side effects of corticosteroid use. I definitely “knew” that there was a connection, but honestly only thought about the temporary psychosis part being an issue.

After that episode of temporary psychosis, I still had side effects…I just didn’t link them to the steroids.

Over the past few years, I have continued to have issues with the “subtle side effects” and totally brushed them off. I have had a LOT of things go medically very wrong with this disease, and have been paralyzed twice with the inability to speak, and have also “died” and had to have a major emergency surgery to keep me alive. This brought on severe PTSD, but even with therapy, I still had those “subtle side effects.” This past summer, when I switched from oral Hydrocortisone to the pump, I finally felt amazing. Things had started feeling “normal” again. My “subtle side effects” had been diminishing.

But right before I had started on the pump, I developed an infection in the hospital, which did not go away. My doctor “guessed” at the kind of infection I had but never took a culture of it, and I followed the recommended protocol of increasing my steroids with a triple dose while I was on antibiotics. The infection persisted, so I was on several bouts of antibiotics. The high amounts of steroids lead to another case of corticosteroid-induced temporary psychosis. Although it was not nearly as extreme as the first time, and it took longer to appear, and didn’t last as long, it still made a major impact on me emotionally. Since the severity was less, it was harder for my loved ones to recognize and be sure that it was actually “psychosis” that I was dealing with. Although I kept denying that I was in “psychosis,” I still was unable to think “clearly” and I ended up making the decision to go from a high amount of steroids down to my normal dosage overnight.

This made me “crash” right away. The “crash” symptoms were the same as before, but since I had done a drastic decrease in my steroids, and I still had the infection, all of a sudden, I had extreme physical symptoms that I was dealing with at the same time. I was then hospitalized for two weeks, had very rare, unexplainable physical side effects from my infection and ended up coming home with multiple holes in my body and a home health care nurse coming to my home to help me recover…all while still dealing with the “crash” emotional issues. PTSD came back full swing, I had severe depression and anxiety, I completely withdrew from social media and from any social interactions with people. I was totally housebound once again and just the thought of getting into a vehicle brought me to a full on panic attack and endless tears.

How could I have allowed this to happen to me again? I was so distraught that I didn’t even have the strength to seek out help from the people that helped me so much in the past. When I was in the hospital, I luckily did have a doctor who seemed very knowledgeable and told me that this happened because I had not tapered. We had a long discussion about the emotional side effects it caused for me and what to do in the future. It still took months for me to come to terms with things. I wanted so badly just to return to a normal dose and not be dependent on a higher dose. However, I knew that with the trauma that my body had been through, I had to be patient and taper down very slowly.

Knowledge Is Power

Since I got home from the hospital and got to the point where I was not crying at the drop of a hat, I was able to monitor my emotions better and take control. Although I did not realize it at the time, the “subtle emotional side effects” became my focal point of things I wanted to conquer and take control over. I reached out to a trusted friend, who helped me come up with a good dosing schedule, I did a lot of self-reflection of what I wanted in life, I read a lot of self-help books, watched a lot of funny movies, and just focused on being happy and present. I evaluated every single thing that was going into my body, whether it was medications, supplements, food, etc. If it didn’t “feel” right, I cut it out of my life. Anything negative that I was holding onto was the first thing to go.

I was then able to completely get off of all prescription medications, including my anxiety medications, except for the steroids. I added in extra supplements and antioxidants that helped promote healing. I no longer need a sleep aid in order to sleep at night. I’ve done a lot of research about the emotional side effects of steroid use, so I’m very careful now with changing my dosage amounts, even when my body is requiring more coverage.

And now that I do know how they specifically affect me, I’ve been able to share my knowledge with my husband and my family so that they can help me to identify any red flags, if they happen to come up in the future. Every single hour can be different for someone with Adrenal Insufficiency who is on steroids and needs to be able to “live” their lives. I am now at a point in my life where unless something pretty major comes up, it’s almost as if I don’t even have the disease. I’m personally conscientiously aware that it is still very real and very much a huge part of my life.

However, for the first time in years, my husband and my kids are able to breathe again. They no longer see me as being “sick.” We enjoy life as much as possible together and once in a while, when I catch a virus or something, they ask me if I’m making sure to updose, not only for the physical aspects of it, but also because they know what it does to me mentally and emotionally.

And this, my friends, is my “new” normal.

Advocacy

When Invisible Illness Becomes Visible

Awareness about invisible illness is something that this foundation is incredibly passionate about. Those who suffer with diseases and conditions that cannot be seen are scrutinized by those who simply do not understand.

Conditions like Addison’s, Cushing’s and most adrenal diseases cannot be seen by the human eye but effect the lives of so many sufferers.

But what happens when your invisible illness suddenly takes on a visible form?

Which is worse; Looking well but being sick- therefore having people assume you are lazy and unmotivated  OR being sick and looking sick and having people stare at you in confusion; knowing something is wrong but not having the compassion to understand?

In either of these situations, people with chronic illness feel misunderstood.

My illness took on a physical form after my diagnosis of adrenal disease.

My body now bears the exacerbation and side effects of poor steroid absorption. Before I was on the cortisol pump  I was on steroid tablets, which I did not absorb and got very sick.

My once clear, ivory skin now bears the unfortunate appearance of acne, my figure is now in double digits instead of the quaint size “8”  I  formerly was and my body bears the bright purple/red stretch marks and scars resulting from my surgery and the mismanaged cortisol medication.

Every time I take a bath, I want to fight back tears. I want to scream and escape from the cage that my  body is. This cage is painful and unattractive. My once invisible illness has taken on a very visible form. I no longer can hide the fact that I am sick. No amount of exercise and make up can fix my body now. My diet is a strict as possible and I am in an intense physical therapy program for exercise and muscle strengthening. In chronic illness, there are just some things that cannot be controlled. I have to accept who I am now.

Self worth should never be dependent on looks. It is truly inner beauty that counts.

How someone treats another person is the TRUE reflection of who they are.

Anyone can have a pretty face, but not everyone can have a pretty spirit after going through darkness, pain and tragedy.

“True self control is controlling your thoughts, actions and feelings when nothing is the way you feel it should be.”

When I look at my body now, I have to realize that I did not choose this. I did not make bad decisions to cause any of the problems I have. Guilt is the worst thing a chronic illness sufferer can harbor in their spirit. It destroys us and is absolutely an unnecessary emotion.

Most of us with adrenal disease have struggled with our looks. Before my diagnosis, I was 87 lbs at 5’4….then four years later before the pump I ballooned to an obese size.

 

But you know what? My heart remains the same.

 

The only size that should matter is the size of your heart.

 

We have enough to battle, let’s not battle our own spirit as well.

You did not choose your illness, but you do choose to bravely fight it every day.

Whether your illness is visible or invisible, I hope you accept yourself for the strong warrior that you are.

If you are struggling with self acceptance, please reach out to us, we have counselors available to help you!

 

Wishing you Comfort &Cortisol,

Love, Winslow E. Dixon

The Adrenal Alternatives Foundation Founder

 

Advocacy

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 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-

Do not get on any 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 they will always assume you have secondary adrenal insufficiency, 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. 

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.