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 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.

Advocacy

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

Advocacy

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.

CarePack (2)

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

Advocacy

Near death experience was a call to life- Jen’s story with adrenal insufficiency

February 23, 2017 will be a date that will forever be engraved into my life and the lives of the people closest to me. It’s the night that I died…three times…and came back to life to tell my story.

It was a cold, February night. I had been under a tremendous amount of stress. My ten year old had suffered a major concussion at school a couple of weeks prior. That led to several doctor’s appointments, a CT scan, a trip to the children’s hospital when his symptoms got worse, communicating with his teacher to get homework that he could safely do while he was at home recuperating, and a group of unneccessary text messages between his father and me, arguing about his treatment plan and the plan for our son to return to sports. Living with Adrenal Insufficiency has taught me that when I’m under any emotional or physical stress, I need to take extra meds in order to cope like someone who has healthy, functioning adrenal glands. However, when my cortisol levels drop to a certain level, I can’t think clearly and I don’t realize when I need to take the extra life saving steroids. My husband recognized it, but it was too late.

There is a block of time that I absolutely don’t remember. That block of time started right after I told my husband “I don’t feel right…” I was standing in the kitchen and I had just read a text message that apparently dropped my cortisol levels to a dangerously low level. My husband took one look at me, and told me to come lay down and he would get me some meds. To be honest, the meds I truly needed was my Solucortef Emergency Injection. However, it was sitting at the hospital pharmacy….all because…one, I didn’t think I truly had “that” bad of a case of Addison’s…I saw other people posting in our groups and they were constantly in crisis and having to inject, but that just wasn’t me. Also, it was $52 to pick it up and we simply could not afford it at the time. Please read that again. I could not afford my life saving injection that literally could have and would have SAVED MY LIFE!!!!! I started to walk towards him, and I collapsed in the middle of our dining room, not breathing and unresponsive. My husband told my ten year old to call 911 and he immediately started CPR.

It took emergency responders 14 minutes to arrive to our house. They attempted to revive me with no avail. I was in cardiac arrest. They couldn’t locate a good IV spot, so they chose to perform an emergency procedure known as an IO (Intraoasseous Infusion) where they drill into a person’s shin bone and are able to get an IV started. The problem is, the EMT who performed the IO drill led too far into my shin, so all of the medication that they pumped into my system went straight into the tissue of my leg. Since I was not responding like I should with the medication, they kept giving me more and more, not realizing the harm it was causing. A brand new EMT looked at my leg and asked if my leg was supposed to look the way it did. I apparently had compartment syndrome and my leg had ballooned up. Things suddenly took a turn for the worse.

My husband was on his way to the hospital, when all of a sudden I went into cardiac arrest again and my “spirit” visited him in his car. According to him, I told him that I love him and I was saying goodbye. Being the strong-willed person that he is, he told me to get back into the ambulance and start breathing. Although our wedding vows did not include “thow shall obey,” I left his car and started breathing in the ambulance. When he arrived at the hospital, he was met at the door by the hospital chaplain, who urged him to call my parents, as the doctors did not expect me to live. My husband was notified that I would require emergency surgery and they needed him to sign a release for them to operate. Knowing what surgery would do to my body, he insisted that the medical team give me 100mg of Solucortef prior to the surgery. It then became a battle of who would give in first. The person trying to get him to sign the release told my husband that I would die if they couldn’t operate qickly, and he told them that I would die if I did not have the emergency steroids on board prior to the surgery. In the end, my husband won the battle and after I was given the Solucortef, I was rushed into surgery.

love from all of us
Continue reading “Near death experience was a call to life- Jen’s story with adrenal insufficiency”

Advocacy

5 steps to successfully getting the care you deserve!

Until 2008, when I first got sick, I had no idea how important it was to become my own advocate for my health. And not just any advocate…I had to learn how to be SUCCESSFUL at getting the care I deserve.

Normally when people get sick, doctors are able to diagnose you and help guide you back to good health. That was definitely not the case for me. I spent the next 8 years fighting for answers. Even after I was diagnosed with Adrenal Insufficiency, I had to continue to be a strong advocate. In fact, I had to turn the knob up on just how Bad Ass I needed to be. After all, this is my life and if I truly want to live and not just survive, I had to take charge and become the CEO of my health. So, how does one go about being a Bad Ass Advocate you may ask?

  1. You must decide that your health is top priority for you. This one took me a while to “get.” I had no idea in 2008 that I was about to be chronically ill for the rest of my life. One day I felt perfectly healthy, and in a blink of an eye, I got sick and stayed sick. I thought I had a stomach bug, but after a few trips to the ER, I knew I had to figure out what was going on, since they only treated me for my symptoms and sent me on my merry way. I went to go see my doctor, she ran some tests, but ultimately just ended up putting me on large doses of Zofran and pain pills as a treatment plan. She never even went over the tests with me. I got the results in the mail, but wasn’t sure what they all meant. I wasn’t thrilled with the treatment plan, so I decided that if I was going to get better, I had to do whatever it took to get some answers. After all, I had three kids that depended on me.
  2. Get ready to do research on your own. Had I just followed my doctor’s treatment plan, I most likely would be dead right now. I started researching what my test results meant and what could possibly be wrong with my body. I took this information to my doctor and insisted on further testing. That started my journey of seeing specialist after specialist and having more tests run on me than a lab rat. I became very knowledgeable and I wasn’t afraid to ask for certain tests to be performed. After I was diagnosed in 2016, that’s when I ended up doing the most research and to this day, I still do ongoing research. This is my life and my body and just relying on doctors for answers and treatment plans proved to not be in my best interest. When I see a doctor, I’m always prepared with a list of questions to ask. It doesn’t matter if it’s my PCP, my Endocrinologist, an ER doctor or an admitting doctor. Also, joining support groups online can be extremely beneficial. Not only have you done your own research, but now you have other people to talk to that have done their own research that can help you as well.
  3. Find doctors who are on the same page as you are in regards to your health. Think all doctors are the same? Think again! I’ve been through my share of doctors over the years. When I realized that I knew more about Adrenal Insufficiency than my Endocrinologist, it was time for me to find a new one. I started asking for referrals and now have one that works with me and respects my knowledge. As far as a PCP, my last one literally would throw her hands up in the air whenever I brought up Adrenal Insufficiency and say “I’m not touching that.” After being placed on medications that interfered with my Adrenal Insufficiency, and her lack of knowledge, compassion and willingness to do any research to help with my health, it was time for her to go. I then decided that I was going to interview doctors prior to becoming their patient. Luckily, I found a wonderful PCP who has done extensive research and continues to do research so that he can properly treat my illness. I have also fired doctors in the hospital because we couldn’t get on the same page. Yes, you can fire doctors! You don’t want to leave your life in the hands of a doctor that might do treatments that will send you to the ICU or the morgue.
  4. Question every medication and every test being performed. If you’ve been to the ER, you know that typically, you’re being poked with a needle before you even see a doctor. And sometimes, you’re even getting medications that they ordered prior to an examination. It can be challenging when you’re not feeling well to ask the questions, but this is crucial. If you’ve done your research, you know which tests should be run. You should also know which medications work best to treat you and which ones to avoid. Trust me, this did not fully compute with me until I learned the hard way. Not only in the ER, but also the hospital, with my PCP and my Endocrinologist. There’s a reason why they call it practicing medicine. Most doctors won’t take the time to know your history, and they will simply run tests and give medications that they’ve given to other people in the past, assuming that this is in your best interest. I’ve had way too many bad reactions or unpleasant side effects from medications that I wasn’t even sure of the reason why I was on the medication in the first place. My list of allergies not only includes what I’m allergic to, but also lists medications where I’ve had a negative reaction to. I’ve also had so many CT scans and MRIs that I am in danger of getting cancer. You have to weigh out your options, but first, you have to be bold enough to question why a test is being performed or why a medication is either being prescribed to you or going into your IV site. Is the test necessary? What are the pros and cons of the medications and do I really need to be on the medication? You’ve seen the commercials where they glorify a medication like it’s the greatest thing in the world, but then list all of the harsh side effects. Unlike doctors, those commercials are regulated to list side effects and potential problems that may arise while taking the medication. So, make sure that every doctor that is giving you medications or running tests on you is a walking commercial, so to speak.
  5. Take a proactive approach to your health instead of a reactive approach. God only gives you one body in this lifetime. Don’t sit back and assume that the treatments you are getting are the best for your health. Furthermore, don’t wait on the sidelines to start feeling better. I had issues every month when I got my period. More times than not, I ended up in the ER because of the issues. I decided to have a hysterectomy, after doing my research of course, and it turned out to be a huge blessing in disguise. I had some major issues going on inside of me that only could be diagnosed with the hysterectomy. Recently, I got on the adrenal pump. Prior to that, I spent two years taking oral steroids every 4 hours and had to play the guessing game of when I needed more or if I needed to take them earlier than the 4 hours. I was basically reacting to what my body was trying to tell me, and often times, my cortisol was so low that I couldn’t think straight in order to know when I needed extra steroids. During my latest hospitalization, I decided enough was enough. I no longer wanted to continue the path that I was on. I no longer wanted to refer to PeaceHealth Hospital as my second home. So I reached out to people that I knew that were on the pump and devised a plan to get on it as soon as I was released from the hospital. The pump has drastically changed my life so far. I am now getting a constant amount of cortisol in my body, comparable to a person without Adrenal Insufficiency. I’m no longer waiting to feel better. I feel amazing and it has helped me to make plans and goals for my future. But here’s the key….I didn’t wait for my Endocrinologist to suggest it for me. I went to her with the idea. Her initial response was “But it’s not FDA approved yet in the U.S.” I could have just accepted that answer and waited for the FDA. Instead, I was prepared for her to say that and I had a plan for convincing her to support me, which she did. Now kids, “THIS is my new normal” and I couldn’t have done it had I not mastered being a Bad Ass Advocate for myself!

-Adrenal Alternatives Contributor- Jen Hudnall

Advocacy

DISEASE EQUALITY- DIABETICS AND ADRENAL PATIENTS BOTH DESERVE ACCESS TO INFUSION PUMPS

DISCLAIMER- This post should not be used to diagnose, treat or manage any condition. Management of adrenal disease is serious and requires medication that is managed by a reputable endocrinologist. There is no cure for adrenal disease and this post is not suggesting this treatment is a cure, only a management tool.

Adrenal Insufficiency and Diabetes are both difficult diseases to manage and this Foundation sympathizes with T1D and T2D patients. Both are serious, endocrine disorders are we are in no way downplaying the battle of diabetic patients, we are simply using it as a comparative tool to explain adrenal disease, as most people are unaware of it.

Adrenal insufficiency is a disease where the adrenal glands fail to produce the proper amounts of steroid hormones. There are many different forms of adrenal disease, but the treatment for all forms is the same- steroids for cortisol replacement.

Diabetes is the disease where the pancreas fails to produce the correct amount of insulin, thus rendering someone insulin dependent.

Both of these diseases are endocrine disorders.

Both of these diseases require life-long replacement therapy.

The adrenal insufficient person is dependent on cortisol.

The diabetic is dependent on insulin.

Both of these diseases are life threatening.

Both of these diseases require daily monitoring.

Almost every cell in the body has cortisol receptors, making it a crucial hormone. This hormone impacts multiple functions of the body. Without adequate levels of cortisol, the body will go into an adrenal crisis which will result in organ failure and eventually death.

Cortisol impacts blood sugar levels, metabolism, stress response, inflammation levels, aids in the immune system, affects the metabolic processes such as the salt and water balances within the body and it also greatly impacts the circadian rhythm.

Unlike diabetic patients, adrenal disease sufferers have no meter to check their cortisol levels. They must be constantly vigilant of their own personal signs and symptoms of low cortisol. and require an emergency injection if their levels drop too low.

The standard treatment for all adrenal disease patients is daily cortisol replacement medication- steroids.  Medications such as prednisone, dexamethasone or hydrocortisone are prescribed to replace the deficits of steroid hormone in the body. Steroids have a myriad of side effects ranging from weight gain to emotional disturbances. Long term steroid use has been linked to damage of the bones, eyesight and even muscle tissue.  Yet, this is the only treatment for adrenal disease.

In a normal person, during situations of emotional or physical stress their body releases more cortisol. The excitement from a happy event, the sadness from a death of a loved one or the strain from exercising are examples of things that would cause the body to release more cortisol.

In an adrenal insufficient person, this does not happen. They have to artificially manage their cortisol with pills. Their personal cortisol needs may differ from day to day. No two days are the same and it is a struggle to regulate proper cortisol levels.

The most commonly prescribed steroid for adrenal insufficiency is hydrocortisone (HC). This is the bio-identical steroid medication. This medication has a blood serum half life of 90 minutes and must be taken multiple times a day.

Most adrenal patients struggle with quality of life due to this mismanagement. Oral HC must be processed through the stomach and the liver before reaching the blood stream.  This causes a constant rise and fall of cortisol levels, which results in subpar function.

Below is what the natural circadian cortisol rhythm is supposed to look like-

naturalCircadian

This is the circadian rhythm of an adrenal patient on HC.

UnnaturalCircadian

(This image was created using Clearly Alive‘s Steroid Dose Plotter)

Notice how it is a constant up and down motion? This causes fatigue, headaches, irritability, blood sugar issues and lowers quality of life.

The quality of life is vastly poor due to this lack of balance. Oral HC cannot do what natural cortisol can.

But there is solution to help create a more natural circadian rhythm!

The use of solu-cortef (inject-able version of cortisol when mixed with saline) used in an insulin pump programmed to disperse cortisol according to the natural circadian rhythm by programming rates of delivery into the pump.

This therapy bypasses the gastric passage and is able to deliver cortisol in a more natural 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 HC replacement. Side effects due to mal-absorption are decreased and patients have been reported to have improved sleep, weight management and experience an overall improvement in their energy levels and sense of well-being.

This therapy can literally give adrenal patients their lives back, and yet so many are unable to receive this treatment.

Professor Hindmarsh, is a pioneer for this life changing treatment. He has done much international research and has proven that every single patient he has placed on this therapy found improvement. Yes, 100% success rate! That is unheard of in the rare disease community.  Granted, this is a small group of patients who’ve been exposed to the pump so as awareness grows that stat may fluctuate.

The pump is not a cure for adrenal disease, but it is an option and a ray of hope for those who are bedridden with no quality of life.

If there is another option for adrenal disease, why is the pump therapy only available to diabetics?

Are adrenal patients not worthy of a better life?

Adrenal patients should have the same rights as diabetic patients. All diseases should have the opportunity to receive the best treatment and care possible.

PumpAware