Category: Addison’s disease

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The Cortisol Pump- Life Improving Treatment for Adrenal Insufficiency

Endocrine diseases are common, however most people have never heard of adrenal insufficiency or even know what cortisol is.

Adrenal Insufficiency and Diabetes are both endocrine diseases. However one has a great deal of awareness, whereas the other does not. So, we will use them both to explain the cortisol pumping method.

Adrenal Insufficiency and Type 1 Diabetes are both difficult diseases to manage. Both are serious, endocrine, auto immune disorders and 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.

Type 1 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 hormones 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, steroid cortisol replacement 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. 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, increases mortality rates and decreases quality of life.

Quality of life in adrenal disease patients is vastly poor due to this lack of balance. Oral cortisol replacement cannot do what natural cortisol can. But fortunately, endocrinology research has found a solution for adrenal patients who have failed to stabilize on oral cortisol replacement medications.

The concept of Cortisol Pumping is 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 this method, an adrenal insufficient patient can receive a constant supply of cortisol and will not suffer the instability experienced with oral steroid cortisol 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 method has also been proven to lessen the prevalence of adrenal crises and lessen hospitalizations due to low cortisol.

Peter Hindmarsh, Professor of Paediatric Endocrinology at University College London and Consultant in Paediatric Endocrinology and Diabetes at University College London Hospitals and Great Ormond Street Hospital for Children is the pioneer for this treatment. He is currently Divisional Clinical Director for Paediatrics at University College London Hospitals is the standard for the cortisol infusion method. He has done much international research and has proven that this method improves the lives of adrenal insufficient patients.

Though this method is not a cure for adrenal disease, it is an option and a ray of hope for those who are struggling with quality of life.

Access to the cortisol pump treatment is limited and the Adrenal Alternatives Foundation is dedicated to helping people establish care and maintain pumps/supplies to achieve this life changing treatment.

Adrenal Alternatives Foundation was created to help all adrenal disease patients find better quality of life. They are actively working to make sure ALL treatment options, including the cortisol pump are available to all adrenal insufficiency sufferers.

This is just one step into bettering the lives of future adrenal disease patients.

If you are struggling to manage adrenal insufficiency, don’t lose hope. There is help out there and Adrenal Alternatives Foundation is dedicated to education, advocacy and encouragement for all adrenal disease.

For more information please visit their website- https://adrenalalternatives.com/

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Permission to Pout

Anyone who has a chronic illness will tell you that it sucks. Often on the UnChargeables site, the other admins and I post funny memes about the challenges we face. We try to handle our lives with the best attitudes possible. I typically try to “make light” of my limitations.

But the truth is- Chronic Illness isn’t funny. It took the life I wanted away from me. I was supposed to be this powerful, successful medical person…healing and saving the world…..and now at 25 years old I am unable to work or drive.

The independent woman inside me even hates to see those words typed on the screen.

This being said, when chronic illness changes your life does that give us permission to pout?

Sadness is a human emotion. Regret is a natural feeling. Guilt is a constant factor lingering in the minds of the chronically ill.

Is it ever okay to let yourself have a pity party?

Contrary to popular belief, I say yes.  (GASP!    Yes…I’ll explain why in a moment)

I had one of these pity parties yesterday. I have been battling my usual fun symptoms with my kidney stones and addison’s disease…but somehow developed an active case of the shingles. Yesterday my pain was overwhelming. I was also hungry and just in a bad mood.

I usually try to be one of these “zen warriors.”  I try to  just swallow the pain and stress and put on a happy face. But I didn’t have the energy or the will to fake a smile.

I let myself cry. I let myself feel all the negative emotions.

I admitted I wasn’t the invincible warrior I try so hard to be.

And then I let it go.

I had a good cry, took a bubble bath and ordered a gluten free pizza.

I gave myself permission to pout.

I think everyone should, once in a while.

Bottling up emotions, grief and pain will only inhibit your health. Feeling emotions is necessary step in healing.

Have the pity party, just don’t attend it every night.

Feel the emotions, then let them go.

 

 

To read more from Winslow click here – http://winslowedixon.wordpress.com

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Manatees, Steriods and Self Esteem.

I weigh how much? BUT I JUST EAT LETTUCE.

I make the joke that I am a manatee.

I do actually fit the criteria to be such a creature.

I live in Florida, I eat healthy and all natural food and I’m still overweight…therefore I am a manatee.

Before being treated for Addison’s disease, I was very close to death and very underweight. At 23 years old, 5 foot 4 inches, I only weighed 87 pounds. My frail little body had succumb to the lack of cortisol, electrolytes and aldosterone.

 Fast forward one year, after adding the necessary exogenous cortisol medications, my weight went up.

It happened just about overnight….

I literally woke up one morning and everything in my closet was tight. I had to wear a skirt to work because nothing fit.

 

The steroid effect…..it hit me….hard.

 I went to my doctor that week and expressed my concerns regarding my weight. He asked me about my diet and activity level. I explained to him I was on strict gluten, dairy, egg free, low sugar and all natural diet. He looked at me, smiled and told me that the steroids were the reason I was overweight and not anything I was doing. I had been on steroids a year now, and they will put weight on you regardless of how strictly you eat. He also credited me for how I had only gained as much weight as I had. I was still disheartened at my weight and inquired about anything I could do. He reminded me that I was in recovery for total adrenal failure and exercise wouldn’t be a quick fix for me and I needed to just do the best I could. So there I was, stuck with this fat. I took the doctor’s words to heart to just do my best and left the appointment accepting my weight.

 OR SO I THOUGHT.

 I was working in the field of geriatrics when my weight gain issue started. Old people will tell you in a mili-second every flaw that you have. Everything my doctor said was bombarded by snide comments from elderly ladies.

There was a lady in the community that was a Cuban immigrant who spoke broken English. She came up to me and in her lovely accent told me, “Win-so, you were so BONITA, now you so big. You need to stop eat.”

Later that day another resident scolded me for getting pregnant out of wedlock.

My self-esteem plummeted. I was ugly now. I was fat. I was gross.

 Some people seek comfort foods and over eat when they self loathe. I did the opposite. Food became a source of irritation for me. I did not want any of it. I ate, but not as much as I was supposed to.

I didn’t lose weight, I just weakened myself even worse and ended up in the hospital.

 I let what those mean old ladies said get to me.

I ignored what my good doctor said.

Why do we hold negative comments so much closer to our hearts than the positive ones?

 I was lying in the hospital bed, hooked up to an IV, heart rate and BP going crazy. Who was next to me? None of those old ladies.

 Tears welled up in my eyes as I laid on that gurney. My pain was high and my spirit was low. I had to realize what was important. People will say mean things, no matter what you weigh, how you look, how smart you are or how much class or money you have. Negative people seek to destroy others. Positive people seek to build up others.

 I knew I was holding onto the comments from the wrong people.

I closed my eyes and thought about every positive thing that had been said to me that week.

 The hospital staff not only treated my physical problems that night, but also my spirit. My nurse told me it was okay for me to slow down and jokingly said I needed to be like a turtle. The patient care tech told me he respected me for all I went through. He also told me to live my life to the fullest despite my illness. After being discharged, he pushed me in the wheelchair and told me how he was 40 and wished he had lived a better life. “It goes fast, kid. Just be sure you are enjoying as much as possible.” His words could not have fallen before a more appropriate audience. I began to think about how many hours I had worked that week, how much schoolwork I had forced myself through. I thought about how I cried every time I had to get up in the morning from pain and walk into work like I was fine. I really had put myself last. I was not enjoying life. I was in survival mode. I stepped into the car from the wheelchair and thanked the patient care tech for his advice. I determined from that day forward to never let negative comments destroy me again.

 When I did go back to work, the comments did not stop. The pregnancy rumor had spread even further. I, being a sensitive person, had a really hard time not taking the judgmental looks and mean comments to heart. One of my favorite residents came into my office as I was fighting back tears one morning. “Oh you’re not listening to these old bitties are you?” She asked me.

Trying to hide my hurt, I responded “No, but I do hear what they say.”

In the most serious manner, she pushed her walker over to my desk and said “You listen to me, next time someone asks you if you are pregnant you tell them yes. You also tell them you are having triplets and ask if they want to adopt. Tell ’em you’ll charge a thousand bucks a baby and you’re taking donations too!”

I erupted in laughter. I held onto her funny advice and to this day still laugh about it.

That day helped me learn to stop obsessing over the negative comments and truly hang onto the good ones.

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Addison’s Disease

1806_The_Hypothalamus-Pituitary_Complex

Addison’s disease is a rare disorder. It happens when the adrenal glands are not producing a sufficient amount of steroid hormones. This is found through medical imaging and blood tests. The disease got its name from Thomas Addison, the famous doctor who also discovered malaria.

 

1806_The_Hypothalamus-Pituitary_Complex

Causes

There are many causes of this disease, which include autoimmune processes in the body or long-term steroid use which suppresses the body’s natural function. (This is called secondary adrenal insuffiency)

Diagnosis

Basic_HPA_Axis

Since symptoms don’t reveal themselves easily, Addison’s cannot be detected very easily. The patient may experience some symptoms such as fatigue, fever, and weight loss. Patients also suffer low energy and difficulty standing, low blood pressure, and a desire for salty foods as sodium gets washed out with the urine. Patients may experience some tanning of the skin due to hyperpigmentation.

In its early stages, adrenal insufficiency can be difficult to diagnose. The medical team will review the patient’s medical history, and symptoms, especially tanning of the skin, will help to identify the condition. Laboratory tests will determine whether levels of cortisol are sufficient and establish the cause. X-rays of the adrenal and pituitary glands will also help establish a diagnosis.

The most specific test to diagnose Addison’s disease is the ACTH stimulation test. It measures blood and urine cortisol after receiving an injection of ATCH. There is a rapid test also where measurements of cortisol are taken after 30 and 60 minutes after injection. In a healthy person, the cortisol will rise in blood and urine; however, in a person with Addison’s disease, there will be little to no change in cortisol levels.

When an abnormal response to the ACTH test is present, a longer CRH stimulation test is applied to determine the cause of the adrenal insufficiency. In this test, synthetic CRH is given intravenously and blood cortisol is measured in intervals over a two-hour period. Patients having primary adrenal insufficiency have high ACTH’s but do not produce cortisol. Patients with secondary adrenal insufficiency have deficient cortisol responses, but absent or delayed ACTH responses. An absent ATCH response is caused by the pituitary, where a delayed response points to the hypothalamus.

When a patient is diagnosed with Addison’s or in crisis, the doctor will begin treatment with injections of salt, fluids and glucocorticoid hormones immediately. A reliable diagnosis is not possible while a patient is being treated in crisis; however, it is enough to diagnose the condition. Once the crisis is controlled, and medication has been stopped, the doctor will delay further testing for up to one month in order to obtain an accurate diagnosis.

At that time, x-ray exams of the abdomen will be taken in order to see if the adrenal glands have signs of calcium deposits, which may indicate tuberculosis. If a secondary adrenal insufficiency is the cause, doctors may use other imaging tools to examine the pituitary gland.

Addison’s disease can be treated by introducing cortisone to the body via tablets. This is a lifetime treatment. Sometimes, injections of cortisones can be increased, as when the patient is suffering a trauma, is suffering an infection, or is pregnant. It is recommended that the patient wear a medical alert bracelet, so if the patient suffers a trauma, the medical team knows that the patient will need additional cortisone treatment.

Conclusion

There is hope for people who have Addison’s disease. It does require proper monitoring, and patients must understand the importance of monitoring their health. It is also important to carry identification and medical alert information in case of accident.