Managing Adrenal Insufficiency with the Cortisol Pump

Managing Adrenal Insufficiency with the Cortisol Pump

Citation: Adrenal Alternatives Foundation

Adrenal Insufficiency and Diabetes are both difficult diseases to manage and the Adrenal Alternatives Foundation sympathizes with T1D and T2D patients. Both are serious, endocrine 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.

 

Below is an example of natural circadian cortisol rhythm without the presence of adrenal disease-

naturalCircadian

 

The chart below is the circadian rhythm of an adrenal patient on oral hydrocortisone replacement.

UnnaturalCircadian

This image was created with Clearly Alive’s Theoretical Steroid Dose Plotter

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. He is currently Divisional Clinical Director for Paediatrics at University College London Hospitals is a pioneer 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.

PumpAware

 

 

Sources:

 

Chauhan. Adrenal Insufficiency: Burden Of Disease And Cost Of Illness. http://www.ispor.org/research_pdfs/45/pdffiles/PDB30.pdf. Accessed May 22, 2016.

Coursin DB, Wood KE. Corticosteroid supplementation for adrenal insufficiency. Jama. 2002;287(2):236-240.

Daniel E, Newell-Price J. THERAPY OF ENDOCRINE DISEASE: Steroidogenesis enzyme inhibitors in Cushing’s syndrome. Eur J Endocrinol. 2015.

Gagliardi L, Nenke MA, Thynne TR, von der Borch J, Rankin WA, Henley DE, Sorbello J, Inder WJ, Torpy DJ. Continuous subcutaneous hydrocortisone infusion therapy in Addison’s disease: a randomized, placebo-controlled clinical trial. J Clin Endocrinol Metab. 2014;99(11):4149-4157.

Hindmarsh PC, Charmandari E. Variation in Absorption and Half-life of Hydrocortisone Influence Plasma Cortisol Concentrations. Clin Endocrinol (Oxf). 2015; 82: 557-61.

Oksnes M, Bjornsdottir S, Isaksson M, Methlie P, Carlsen S, Nilsen RM, Broman JE, Triebner K, Kampe O, Hulting AL, Bensing S, Husebye ES, Lovas K. Continuous subcutaneous hydrocortisone infusion versus oral hydrocortisone replacement for treatment of addison’s disease: a randomized clinical trial. J Clin Endocrinol Metab. 2014;99(5):1665-1674.

 

Copyright © *2019 Adrenal Alternatives Foundation* All rights reserved. Adrenal Alternatives Foundation is a patient empowerment organization that encourages, educates and advocates for sufferers of all adrenal diseases and is registered with the IRS as a 501(c)3 nonprofit organization.

 

 

Sarah’s Success with the Cortisol Pump

A personal testimony of Sarah’s story with the cortisol pump.

 

When a person’s liver goes bad, they can get on a transplant list for a new organ. When their heart or lungs give out, they have the same possible options. When a diabetic reaches a certain level of instability, they’re offered another alternative, a continuous infusion pump for insulin.

When a person’s adrenal glands stop working, there is no transplant, or medical miracle. For many, it’s a pill 3-5 times a day, and they can get back to life as usual for the most part.

For some of us, though, the oral steroids don’t work. Sometimes it’s a malabsorption issue. Sometimes it’s a rapid metabolism issue. Sometimes it’s gastroparesis (slow stomach processing) or rapid gastric emptying. Sometimes we don’t understand the cause, just that oral steroids keep us alive, but quite unwell.

That was the case for me. 

I took oral hydrocortisone, split into 6 daily doses for a total of 25 mg when I was first diagnosed. I saw very little improvement, and was still experiencing low cortisol symptoms regularly. We tried increasing my dose to 35mg daily total, with no improvement. 

I was in the ER at least once a month! My favorite Adrenal Disease Support Group was filled with members who had experienced similar lack of improvement with oral steroids. They tried Prednisone, dexamethasone, sometimes specially compounded or extended release hydrocortisone as available in their countries, but each had the same result.

The oral medication just wasn’t working.

I asked my Endocrinologist if we could consider trying subcutaneous dosing of the solumedrol I had on hand for my emergency injection. Though, I’ll be honest, I tried it myself for two weeks prior to my appointment so that I could approach my doctor with evidence that it had changed things for me.

I was lucky my doctor wasn’t upset with me for trying something without talking to him first. I definitely recommend discussing your treatment with your doctor first, for your own safety!

He was, however, impressed that I was actively trying to find a better solution for managing my health.During this appointment, we discussed how much better I felt, even though I was still requiring 6 doses a day. That meant 6 injections a day, including throughout the night. Solumedrol is a longer acting steroid, so I should have been able to dose every 6-8 hours, but for reasons we still don’t know, I needed it every 4 hours.

My doctor recommended that we try oral Prednisone and oral dexamethasone first to be sure that neither would work for me, and over the course of the next few weeks we realized that not only did Prednisone not work for me, but it made me so agitated and angry that the Hulk looked like a sweet kitten…

Dexamethasone was much better for my demeanor, and I felt great for about 6 hours, but it’s supposed to last for 24! Ultimately, we decided that the subcutaneous injections were necessary, and we started the conversation about using a continuous infusion pump so that I could get some sleep!

During the next 5 months, I was still finding myself in the ER for fluids and IV hydrocortisone at least once a month. We were looking into the logistics of a modified infusion pump, as use for cortisol instead of insulin is “off label” and not typically covered by insurance.

Though there are an increasing number of studies about how beneficial continuous hydrocortisone infusion is for the life expectancy and quality of life for AI patients (see links at the end of this post), insurance companies and even most endocrinologists are hesitant to use them. Mine, a top endocrinologist in the country, had never heard of it before.

I gathered research for him, and we talked at length about the benefits and risks. By December, I’d found an extra pump and supplies, and was ready to get started. I had a procedure in the hospital, due to my chronically crappy veins I had a port-a-cath implanted, which resulted in a longer stay. They accidentally punctured my lung!

While in the hospital, they gave me IV boluses of hydrocortisone every 6 hours. They were trying to figure out why my blood pressure was crashing, and why I was not stabilizing.The doctor and I chatted about my need for continuous infusion, and by day 4 in the hospital, he had agreed to put the solucortef directly into the saline bag instead of the every 6 hour bolus.The change was immediate. My blood pressure stabilized, I was able to get up and move around the room again, and by day 6, I was ready to go home.We immediately finished getting the infusion pump set up with my local doctor (who is amazing and was with us through the process and discussion as well).This was six months ago.

Since the beginning of my continuous infusion, I have been to the ER twice. Both times due to norovirus and dehydration, though my cortisol was still very well managed at home.

This new “artificial adrenal gland” was an epic adjustment to my quality of life. I have gone from dozens of ER visits by this time last year, to two total this year. I have been able to teach a small community education class (I can manage about 2-3 hours a couple days a week for about two weeks at time now, where I couldn’t before!) I can go to Walmart and not need the electric wheelchair. I can walk around the block. I’m averaging 4-5 thousand steps a day now, instead of 1-2 thousand.

Am I back to “normal”? Nope. But my new normal looks a hell of a lot better now.

For more research regarding the infusion pump for cortisol check out my collection on Google Drive: Cortisol Pump Research

 

The Way We See Ourselves and Why That Should Change.

Post by foundation contributor: Ilena Bickley

 

I am no expert or psychiatrist or anyone to really give any advice. I am one who suffers from a few chronic illnesses that leave me debilitated at times, so I feel like I have some good advice to give. Take it as you will.

I have been battling Addison’s Disease since 2013 and one thing it has taught me is that, I do not listen to my body…Not at all.

I have tried and I always feel like I got a handle on it, but in reality, I am nowhere near close to “listening.” Don’t get me wrong, at times I do. I do really good and I think that is where that little voice sneaks in and says “Hey!! Look at us doing so good, lets push ourselves and see what happens.” I don’t like that voice. That voice has led me to many ER visits. That voice has made me miss out on a lot of my kids activities.

Sometimes I feel like “Addison” got a little lonely, so she decided to call on a few other friends and throw a party in my body. Only it’s not a fun party. For the diseases, I am sure they are having a good ole’ time, but for me, the one who has to house them…Not so much. It’s like trying to manage a frat house on your own, but you are the one who has all the rules that are working against you. You can’t kick any of them out, they keep you up at all hours, they do things to you that make you so sick you want to throw up…NOT FUN!!

The past couple months I have really stepped back and looked at who I have become and all the ways I have had to adapt. I feel I have done so much to try and help manage my pain and fatigue. I have tried ways to lessen the bad days and try to gain more of the good, but you know what…I have failed so many times….. Or so I thought.

The one thing that I never got the hang of was listening to what my body was trying to tell me. I always saw it as the enemy that was trying to kill me off. I had to step back and look at things differently. Maybe my body isn’t trying to kill me off. Maybe my body is giving me signals, signs, warnings, that I should be listening too.

What would happen if I actually took the time to stop hating it and start listening to it? What if I were to love this body. Treat it with respect. Listen like I would to a friend. What would happen then?

So that is exactly what I did. I started to treat my body like a friend, someone who means the world to me. Do you know what I discovered?? A lot more than I thought I would that’s for sure. Now, I am not going to say I am better or it has “cured” me, but I have been in a much better place and that is where a lot of healing takes place. Acceptance is the key. We can’t change our situations. There is no cure or quick fix. We are stuck in these bodies, so why not show them some love. Why not listen to them.

I went back to watching what I eat closely. Not eating to many things together. That way I was able to track which foods were making me feel like crap. I looked into the AIP diet and what foods might be causing some flares. I loved the WFPB diet, so I am still playing with that. I don’t eat a lot of meat…Rarely… Maybe 2-3 times a month. I cut out nightshades (which was really hard to do). No more almond M&Ms or sweets that I don’t make myself (besides ice cream-I have found one that I do well with). I still try to avoid dairy as much as possible (still only having that about 2-3 times a months as well). Eggs and me get along just fine as long as they are fresh from a chickens butt (which is good since we now have 5 chickens). I can no longer have artichokes and that broke my heart. So, I am learning from and listening to my body and in turn, we have been doing pretty good.

Sleep and me still battle, but I do what I can to show him love. We meditate together. We read or listen to audible. I just try to relax, so he can relax and we can peacefully co-exist. Sometimes we fight, but for the most part, we are getting along much better.

Exercise is a bit tricky. Since putting on 40lbs, it was really hard to look at myself. I have tried so many things and I think I was just to much in my head about all the things I couldn’t do and didn’t want to listen to all the things I could do. So, I embraced what I could do and started to enjoy that. I embraced what I looked like and started to tell myself I am beautiful. I have been going to yoga with my youngest son the past week and I only do what I can and focus on the fact that I am actually doing some movement and bonding with my son.

Again, I am not cured by any means and I still have some bad days. For the past week though, I have had a pretty good week. This means that I only had slight tremors 2 days this week that didn’t manifest into something bigger. I had only 1 headache this week. I was able to make it through a whole week without needing a nap (resting-yes, nap-no.) I only had one flare from something I ate and was able to figure out what it was and eliminate it for the future. So this might not sound like a good week to most, but to me, it was good and I am looking forward to more like it.

I hope that you can find a way to look at your situation differently. I hope that you can start to love and listen to your body. We only have this one and it’s better to love than hate.

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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!

 

 

 

 

 

Understand your Adrenals Series

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

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

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The videos are posted below-

Episode 1- What do the Adrenals do?

Episode 2- Adrenal Fatigue VS Adrenal Insufficiency

Episode 3-  Types of Adrenal Diseases/Problems

Episode 4- Keeping your Adrenals Healthy