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.
But the treatment options for these diseases is completely unfair.
With adrenal insufficiency, cortisol is deficient.
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-
This is the circadian rhythm of an adrenal patient on HC.
(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 a simple solution to this issue!
The use of solu-cortef (liquid version of cortisol) 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?
I am writing this because I am outraged at how there seems to be NO awareness about this issue. Adrenal patients should have the same rights as diabetic patients. All diseases should have the opportunity to receive the best treatment and care possible.
I have been trying to get on this therapy for two years now. At one point, I was working two jobs and in school to be a physician’s assistant. Now, I am unable to drive, work and function as I did before.
The pump could not only give me my life back, but give me the ability to return to school and pursue my career in medicine. I want to work in endocrinology to provide this treatment to other adrenal patients. I do not believe adrenal disease is rare, it is simply not tested for.
Until then, I will keep advocating for every rare disease, every possible treatment and advocate for those who feel they aren’t heard.
Maybe one day, diabetics and adrenal patients will have the same rights.
Wishing you hope & healing,
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