FAQ: Cortisol Pumping Method

What is Cortisol Pumping?

The concept of Cortisol Pumping is the use of solu-cortef (inject-able version of cortisol when mixed with saline or bacteriostatic water) used in an insulin pump programmed to disperse cortisol according to the natural circadian rhythm by programming rates of delivery into the pump. This method bypasses the gastric passage and is able to deliver cortisol in a more natural way. With an infusion pump, an adrenal insufficient patient can receive a constant supply of cortisol and can lesson the instability experienced with oral steroid cortisol replacement. Side effects due to malabsorption can be decreased and patients have 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 shown to lessen the prevalence of adrenal crises and hospitalizations due to low cortisol.

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.

According to a survey done by the Adrenal Alternatives Foundation[1] concluded that 94.2% of the 52 anonymous cortisol pumping patients reported that the cortisol pump had improved their quality of life.

Is Cortisol Pumping FDA approved?

Adrenal Alternatives Foundation is actively working to gain FDA approval for the cortisol pumping method, but that involves years of clinical trials, patient studies and funding. We will achieve this one day, but until then, we are educating patients that FDA approval is not necessary to safely and legally begin cortisol pumping under the care of a licensed physician. Use of the infusion pump for adrenal insufficiency is considered “off label.”

Infusion pumps have long been approved for the administration of medications. According to the Department of Health and Human Services Centers for Medicare and Medicaid Services Medicare Coverage Issues Manual Section 60-14 A: “6. Other uses of external infusion pumps are covered if the contractor’s medical staff verifies the appropriateness of the therapy and of the prescribed pump for the individual patient.”

In addition, according to the recently passed Right to Try Act, patients should have access to this treatment.  The act states the following:

(a) IN GENERAL.—Chapter V of the Federal Food, Drug, and Cosmetic Act is amended by inserting after section 561A (21 U.S.C. 360bbb–0) the following: ‘‘SEC. 561B. INVESTIGATION ‘‘SEC. 561B. INVESTIGATIONAL DRUGS FOR USE BY ELIGIBLE PATIENTS. ‘‘(a) DEFINITIONS.—For purposes of this section— ‘‘(1) the term ‘eligible patient’ means a patient— ‘‘(A) who has been diagnosed with a life-threatening disease or condition (as defined in section 312.81 of title 21, Code of Federal Regulations (or any successor regulations)); ‘‘(B) who has exhausted approved treatment options and is unable to participate in a clinical trial involving the eligible investigational drug, as certified by a physician, who— ‘‘(i) is in good standing with the physician’s licensing organization or board; and ‘‘(ii) will not be compensated directly by the manufacturer for so certifying; and ‘‘(C) who has provided to the treating physician written informed consent regarding the eligible investigational drug, or, as applicable, on whose behalf a legally authorized representative of the patient has provided such consent.”

According to the above legislation, adrenal patients meet the criteria for legal use of an infusion pump to administer glucocorticoid medication.

How do I get a pump?

The first step to cortisol pumping is establishing a care plan with a licensed medical professional. This can be a difficult challenge when trying to find a physician to manage your care with the pumping method, as most have never heard of it. This is why Adrenal Alternative Foundation has volunteers on our clinical advisory team willing to communicate with your healthcare team to help you establish a plan regarding your care on the cortisol pumping method.

It may take you many tries to find a physician willing to manage your care with the cortisol  Send your research, your health information, everything you can to the endocrinologist before your appointment so they are aware of your intentions beforehand. It may benefit you to write a letter to the endocrinologist prior to your appointment that explains your diagnosis, failed treatments and desire to be on the pump. They may or may not be receptive to your request and alerting them of your intentions beforehand may save you time, money and effort.

Will insurance cover pumps and supplies?

What your insurance will cover is completely dependent on your specific coverage plan and insurance company. If you are denied, you can always file an appeal. Visit this link to download the example appeal letter you can fill out with your information to appeal your insurance company’s denial.  

Adrenal Alternatives Foundation has also aligned with the organization CR3 to help adrenal patients acquire pumps in a safe and legal manner. Visit this link to apply for pump assistance.

It is also an option to cash purchase pumps and supplies specifically from companies such as Omnipod and Medtronic if you have a prescription from your overseeing physician.

Is cortisol pumping safe?

Adrenal insufficiency requires adequate cortisol replacement in the form of steroid medications. With the cortisol pumping method, patients can bypass the gastric pathway and absorb their life-sustaining medication better. This treatment is revolutionary for hypermetabolizers and for those with gastro-intestinal problems or malabsorption issues.

The pump truly puts adrenal patients in control of their cortisol distribution in a way that steroid pills cannot. In situations of physical or emotional stress where “updosing” is needed, the pump can immediately administer a bolus, which is extra cortisol administered through the pump canula at the amount you select. Instead of having to wait for pills to metabolize, the cortisol can be absorbed faster and can help prevent adrenal crisis.

Cortisol pumping is not a cure for adrenal insufficiency and is not a treatment that is right for everyone. If you are well managed on steroid replacement pills, being on the pump method may not be necessary to achieve quality of life.

Do I still need an emergency injection on the pumping method?

An adrenal crisis is defined as a life- threatening, medical emergency caused by insufficient levels of the hormone, cortisol. It will lead to death if left untreated and must be quickly addressed with the administration of an emergency cortisol injection. The pump is not a replacement for acute adrenal crisis care and adrenal patients should always carry an emergency injection and administer it immediately in the event of an adrenal crisis.

More information on cortisol pumping can be found on the cortisol pump advocacy tab on our website and also in the book A patient’s guide to managing adrenal insufficiency.


[1] CORTISOL PUMPING SURVEY

In-text: (adrenalalternatives.com, 2020) adrenalalternatives.com. (2020). Cortisol Pumping Survey. [online] Available at: https://docs.google.com/forms/d/1eWYZjIFP9HRJDosvdimJnOr8p54Rmpx_2A4Xz40f77A/edit#responses

Can you donate blood with adrenal disease?

Donating blood is one of the most selfless acts a person can do, but when you have a life-threatening illness such as adrenal insufficiency, there are questions as to whether you are allowed to donate blood or not.

Can adrenal disease patients donate blood?

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The answer is complicated.

Some countries/territories allow blood donation from adrenal patients and others do not. It is ultimately dependent on the regional medical director’s decision of a particular organization.

According to the Pituitary Foundation, Addison’s disease is listed as a permanent deferral which means those with this diagnosis are permanently banned from donating blood.

The Joint United Kingdom (UK) Blood Transfusion and Tissue Transplantation Services Professional Advisory Committee states that anyone diagnosed with any form of adrenal failure “Must not donate.” 
When we searched the American Red Cross website for adrenal disease information, we found no search results that pertained to whether adrenal patients could donate or not.
You can review the full eligibility requirements here.
To answer, the original question, Can you give blood with adrenal disease?
It depends on where you live and what organization is accepting blood donations.
If you are eligible to donate in your area, remember it is also a personal choice.  You should discuss it with your doctor to determine your risks and benefits of blood donation. 

 

 

 

 

 

Sources:

https://www.mskcc.org/about/get-involved/donating-blood/additional-donor-requirements/medical-conditions-affecting-donation

https://www.pituitary.org.uk/information/living-with-a-pituitary-condition/donating-blood/

https://www.redcrossblood.org/donate-blood/how-to-donate/eligibility-requirements/eligibility-criteria-alphabetical.html

https://www.transfusionguidelines.org/dsg/wb/guidelines/ad003-adrenal-failure

 

Is hyperbaric oxygen therapy safe with adrenal disease?

Hyperbaric oxygen therapy is an alternative treatment used to promote healing. With this treatment, a patient is placed in a hyperbaric oxygen therapy chamber, in which the air pressure is increased to higher than normal air pressure so that the patient’s lungs can absorb more oxygen.
The pressurized oxygen expelled within the chamber is believed to help your blood carry more oxygen and therefore promote healing and wellness.
Hyperbaric oxygen therapy increases the amount of oxygen the blood can carry. It is believed this increase in blood oxygen temporarily restores normal levels of blood gases and allows tissue function to promote healing and fight infections.

Hyperbaric oxygen therapy is considered a generally safe procedure, but this treatment does carry risks for adrenal disease patients.

It is important to thoroughly research any treatment, medication or alternative therapy and discuss it with your doctor before you begin any new regiment.

It is the objective of the Adrenal Alternatives Foundation to educate all adrenal patients on the risks and benefits of all possible treatments. Upon our research, we discovered the risks of hyperbaric oxygen therapy as it pertains to adrenal insufficiency. Below are a few extracts from two studies that address these concerns. Further reading/studies are in the sources at the end of this post.

(NOTE- There is no cure for adrenal insufficiency, except in the cases of steroid induced adrenal suppression. Never discontinue your steroid medication. Any alternative treatment/medication/therapy that claims to cure adrenal insufficiency is false.)

oxygen (2)

Abstract of the Undersea & Hyperbaric Medical Society 2008 Annual Scientific Meeting June 26-28, 2008 Salt Lake City Marriott Downtown, Salt Lake City, Utah.

RESULTS: The attendant with Addison’s disease was found to have a drop from a morning level of 16.5 ug/dl to a critical level of 1.4 ug/dl. Subsequent testing without HBOT showed a lesser, non-critical drop of 29.1ug/dl to 9 ug/dl (normal range for the circadian cycle).

US National Library of Medicine National Institutes of Health – Effect of hyperbaric conditions on plasma stress hormone levels. Department of Anesthesiology, Turku University Hospital, Finland.

Cortisol levels decreased significantly (P = 0.001) during the treatments. No significant changes were found in other analyzed hormones.

It is important to be aware that hyperbaric oxygen therapy has been shown to decrease serum cortisol levels, therefore making this treatment a concern for those with adrenal disease.

Discuss any treatments, alternative therapies and medications with your doctor before trying any new regiment.

If you are a cortisol pump user, you will not be able to have your pump within the hyperbaric chamber to administer your cortisol. Due to the high oxygen concentration, any battery operated devices are a fire concern.

If you are considering any alternative therapies, please research them thoroughly and discuss them with your doctor before you begin any medication, treatment or regiment.

Sources:

https://www.ncbi.nlm.nih.gov/pubmed/10372427

http://archive.rubicon-foundation.org/xmlui/handle/123456789/7867

https://www.todayswoundclinic.com/articles/oxygen-wound-healing-going-beyond-hyperbaric-therapy

https://www.mayoclinic.org/tests-procedures/hyperbaric-oxygen-therapy/about/pac-20394380

The Crucial Role of Oxygen for Health

https://www.ncbi.nlm.nih.gov/pubmed/20737929

How does Hyperbaric Oxygen Therapy (HBOT) help with Stress?

https://www.canr.msu.edu/news/understanding_cortisol_the_stress_hormone

https://www.todayswoundclinic.com/articles/oxygen-wound-healing-going-beyond-hyperbaric-therapy

Addison’s Disease and why it changed my life.

Post from contributer, Ilena Bickley

 

I know a lot of you who follow me already know my story pretty well. But a lot of what I deal with, just on the Addison’s Disease, is more than I like to admit.
Do I think my life would be easier with just the one diagnosis? I believe so. Only because I see a lot of fellow Addisonian’s doing really well on their journey. Am I jealous of that? OH YA! Of course I am. Who wouldn’t be? I know for a fact that they have good and bad days, and they probably post more about their good days than their bad ones. It just depends on who they are wanting to reach. You can totally live an amazing and adventurous life with having Addison’s Disease, but I also know that you will pay for it.
There is a lot of factor in when you are working out, traveling, going to events, and so on. Up dosing is a MUST for most Addisonians. Even when we have to go to the dentist, we have to up dose. It’s so strange to think about that. But that little bit of stress, that you might not even know you had, will come back and bite you later. We have to avoid people who are sick. Our immune system is not as strong as a “healthier” person (this is why I carry a mask in my purse). Our bodies get fatigued way faster and it takes us longer to heal and get well.
With all those factors, it is harder for some of us to want to venture out in the real world. Lot’s of us like to stay in our little homes, safe from sickness and stress. I am one of those people.
Every story is different. Every person handles this disease in a different way. Yes there are some similarities in symptoms and activity, but they will take their toll on us in different ways and to a different extent. I know that when I get a cold, it doesn’t present like a normal cold (nose running, coughing and sneezing). Nope, mine is a full on, my body can’t move. Any bit of air that touches my skin, feel like it is trying to blast my skin off. I lose my voice and all I want to do is sleep, but I can’t. My bed hurts my body, my clothes hurt my body. I can’t seem to keep my eyes open, I can’t eat anything and I have to force myself to drink water. This kind of sounds like the flu. The flu is way worse for me.
When I exercise, it will drain me for the rest of the day, and sometimes even the next day. My body is just like, “nope. We are not gonna participate with you any more.” This is not for all exercise. I can walk for about 15 min briskly. I am able to jog for a couple mins. And that is about all my body will allow. I have done yoga a few times, but it takes me a few days to recover from that. I can make it through the whole 60 min class, but I am struggling and I don’t do all the moves. But my body likes being in the heat.
If I have to travel more than two hours, I have to up dose. Driving really takes its toll on my body. I really don’t know why though. I feel relaxed, listening to my audible, and not stressing-or at least I don’t think I am stressing, but my body deems it as stress.
There is a lot I can’t do that other Addisonians can, but I always have to remind myself that most of them only have the one diagnosis. I have more.
I try to stay positive for the most part. I try to keep my stresses down. But there is only so much you can do. I got into such a dark place that it scared me. I had to seek help, and I am so thankful that I did. I love being able to raise awareness. I love being able to share other spoonie stories. I love being an advocate for such a rare disease. I can dwell in the dark place or I can choose to shine and help others.

man sitting on edge facing sunset
Photo by Abhiram Prakash on Pexels.com

Don’t get discouraged fellow spoonies. There is so much we can still do (from the comfort of our beds even). Hold your head up high, self advocate, and reach out to others, because they will know what you are going through and they will help lift you back up.

 

-Chronic Mom’s Club

Maja’s Adrenal Disease Story

Maja Bergma shares her amazing story of diagnosis and her quest to spread awareness on adrenal disease!

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First when diagnosed, I was happy! I thought, Now they can finally fix me! I can get my energy back and catch up on everything in my life that just got put on hold over the years I felt so sick. But I soon realized that fixing me, was not so simple. I was hoping to be able to work/study/travel – do all those things again.

Let’s just say that I got kind of a reality check, realizing that just because you get a diagnosis does not mean that you can get fixed up and well so easily. I feel like the medication keeps me alive, but it’s not enough to let me really live!

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Before my diagnosis, I used to be kind of a high achiever.   I was the one always helping others and now I´m the one needing help.  This disease has turned my world kind of upside down. I had to re-evaluate my self-worth/self-image. I am still learning to be kind to myself, and still working on knowing how to save cortisol/energy.

In the beginning the stress of feeling bad for being sick, feeling like a bad wife/mother for not being able to do all the things I want to do was not helping me feel better!  It was a tax on my soul and like an energy thief.

I see that this is a struggle for many in the support-groups too! You are not alone! I’m now trying to be my own best friend. I don’t need to be so hard to a friend having a rough day. I would not be so hard on another person in the same situation, so I need to be kind to myself too! This is my new way of thinking.
I frequently tend to get fevers, when I exert myself – and that´s rough when one need to up-dose for that. My doctor, said I need to come to peace with that that´s, the way my body works. So I´m working on acceptance, but still fighting for more help, better treatment options.

I had to stop driving my car, and that´s sad but there was no other alternative. This summer we bought a new, smaller home because of my situation. Our new home is  without stairs and no large garden. We are currently getting it altered to work even more practically for me. For example, with low blood pressure, I can´t safely carry laundry up the stairs from the basement, and showering takes a lot out of me so I need to sit and do that to not fall when my bp falls and I feel faint. I don´t want to hurt myself any more than necessary. Our new home works better with my low energy level and my bp trouble.
I realize I can’t live on false hope any more – that I will feel like I used to soon. I have to choose to live my life that functions well for me right now. I feel like I can win a little every day!  I do hope to get to try a pump in my lifetime, and if I can’t,  I do hope that other AI generations after me, will get the chance – if they don´t work well on steroid pills.
I need to rest and sleep a lot. I see many not doing well on HC, needs to sleep a lot too. I try to do things, rest a bit, and do some more. I try to pace myself to get things done. I highly recommend pacing for those of you who struggle, just like me.Also a slow-cooker, made my cooking less dangerous – with lower risk of burning food or the house down! Haha!
My warmest recommendations for other tired AI sufferers needing to get a feeling of being able to win, SMILE! Currently working on trying to help my whole body heal – since being sick for so long without diagnosis. I have been so broken down and know what its like to feel totally broken. I now realize the war that was goes down on the inside of me and why I was get tired on a kind of a cellular level.
I have needed to learn to be more kind to myself. I realize that this disease, I can’t fight with force (that only leaves me exhausted) – it´s more about outsmarting it… So now I´m working on that. Trying to get me the best help!22008247_1520918134596484_4646301107067754700_n.jpgI believe that other diseases in combination with AI, makes it harder to manage it. We see this proved when we look at how the cortisol curve looks in those who have normal adrenal function when they do get sick. I believe this is very important information for better treatment in those with many diseases at once.
In addition to AI, I have upset stomach problems, but they have become better after I get celiac diagnosis and got that treated. But I still get sick to my gut in the gaps between medications. My bp often seems to run low so I recently started to use a walker. I use my husband for support for the longest time, at first – but I want to be able to walk around with out him also so I don’t fall when my bp suddenly decides to drop.
I really hope to see more research about cortisol. Prof Hindmarsh has done some amazing things in his research, I just hope we, all over the world – soon can reap the benefits of his knowledge on sick-rates, dosing and general pumping! Since I have seen that the quality of life so much improves for those going on the pump, who do not feel well on steroid pills alone. I wish that there would be more awareness, to make changes for the better for all AI sufferers. Prof Hindmarsh – to me is like a superhero, he is doing this research for the kids. I can’t even imagine being a kid, with low cortisol and what that would do to a family. In Sweden there is a book coming out soon, about kids with AI and their families – the book will be called “ständigt på vakt” translates to “Constantly on guard”. Happy that the book will come out and rise AI awareness!
Well I must say, even if my life is far from optimal – I´m so grateful, to be alive!  I know that today might not be optimal, but as long as I´m alive, I at least might have a chance of a better life. I hope get a pump and get more on top of this! As long as there is life – there is hope! Heard a woman on her 3 day of pumping saying she felt healthy, and she never did that on pills – I wish that one day I can say that… I feel healthy!
It’s with a sad heart, I have seen too many in the support-group die these last months. And a woman here in Sweden died before getting diagnosed and treated. She was tested but did not get help fast enough. This is depressing and shows how much we need to raise awareness around AI even today in these modern times! We must work on awareness, in memory of those in the AI community, who left us too soon: for our-self and hope for a long and more healthy life; and for those who will come after us!
Maja created the collage below to help raise awareness on adrenal disease! 48607316627_1db35b4b4c_o.jpgThank you Maja for bravely sharing the truth of your battle with adrenal disease. We will make sure YOU have a pump and your life improves.

 

That’s what Adrenal Alternatives Foundation is here for, to lead patients to ALL adrenal alternatives. ❤