How To Get On The Cortisol Pump

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Anyone who follows my blog/facebook/social media can clearly see I have been obsessed with the cortisol pump. My life has very much changed since being diagnosed with adrenal insufficiency. I have gone from being an independent woman pursuing a career in medicine to being a dependent, home-bound person.

When I heard about the cortisol pump, it gave me hope that I could live again.

Addison’s Disease is considered rare, and the treatment of using a diabetic insulin pump for treatment of adrenal insufficiency is even more rare.

It has taken me literally years to get this far. I am SO close to getting on the cortisol pump. I am anxiously awaiting this life changing treatment. I pray it helps me be able to work, live, drive and attend church again. I’ve been sitting on the sidelines for so long. I am ready to enter the race.

So many are seeking this treatment. A person asked me in my Addison’s Support Group “How do you even start the fight?”

I’ve been so focused on discussing the fight for the cortisol pump that I don’t think I’ve ever explained HOW to fight!

HOW TO GET ON THE CORTISOL PUMP-

Step 1- Assess your life, health and disease management.

The cortisol pump is not a cure for adrenal insufficiency and is not a treatment that is right for everyone. If you are well managed on the steroid replacement pills, the adrenal pump is excess money and effort you may not need.

The pump is NOT an easy thing to acquire and the fight to get one takes a great deal of trouble, mental stamina and resources.

You need to consider whether this is something you actually need or not.

Here is a link to a wonderful post about 5 reasons NOT to get a cortisol pump by a lovely woman who has adrenal insufficiency and is on the pump. Reasons NOT to Get a Cortisol Pump

That being said, If you are struggling with your quality of life this treatment may help you. That is why I have fought so hard because I WILL live again. This bedridden, one foot in the grave stuff needs to stop.

Step 2- Research, Learn and Educate for yourself!

Adrenal insufficiency is a rare disease not widely understood in the medical community. You need to become an expert on your own health, especially if you are attempting to get on the pump.

In my experience, doctors barely know anything about adrenal disease. They have been taught that replacement therapy with pills is the only treatment and that patients live a normal life with this disease.

Nothing could be further from the truth.

You need to understand your specific health concerns.

Information you need to know-

What is your diagnosis? Do you have primary Addison’s disease, secondary adrenal insufficiency, tertiary adrenal insufficiency or congenital adrenal hyperplasia?

If you are unsure, here is a link to Understanding Adrenal Disease

What is your quality of life? Are you able to work, drive, do housework or function normally?

What have you tried to manage your adrenal disease?

(Side Note- In my experience, typically an endocrinologist will not even consider the pump until you have tried EVERY oral steroid possible)

What is your current daily dose of replacement steroid?

How much are you stress dosing?

What other medical issues do you have?

(Example- I also have Medullary Sponge Kidney Disease, so my renal impairment made me unable to tolerate dexamethasone as a replacement steroid medication)

Are you able to afford the supplies and medication needed for the pump? Insurance does not typically cover “off label” treatments. My insurance hasn’t paid a cent, despite multiple attempts to contest their decision.

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This was my cost for my cortef, so the cost of the pump didn’t really scare me because I already struggle to pay for the tablets.

This disease is expensive and life threatening if left untreated. If you have A.I you HAVE to have some sort of steroid replacement to stay alive.

Just educate yourself on everything you need to know. You will have to present YOUR case to an endocrinologist to get the cortisol pump. Which brings us to the next point.

Step 3- Finding An Endocrinologist

I just want to warn you that this will be a difficult part of your journey to the pump. Finding an endocrinologist that understands adrenal insufficiency is a needle in a haystack and then finding one who will be brave enough to attempt guiding you through pump therapy just adds to the challenge.

My best advice is to prepare the best case possible. Send your research, your health information, everything you can to the endocrinologist BEFORE your appointment so they are aware of your intentions before hand. I wrote a letter to the endocrinologist explaining my diagnosis, failed treatments and desire to be on the pump.

I was told no by many endocrinologists. I ended up getting the pump prescribed to me by a local nurse practitioner who runs a holistic ministry practice in the town next to me.

My current endocrinologist has agreed to follow me on the pump therapy but refuses to write for the pump or the solu cortef. He states that his “license will not go on the line for managing off label use.”

My first endocrinologist told me that the pump is not done in America and she wouldn’t even consider doing something that was not FDA approved.

Another endocrinologist told me that adrenal disease doesn’t truly exist and I only had impaired adrenal function because I take narcotics for my kidney stones.

You will have to fight to find a doctor willing to write the script for the pump. It will take effort, lots of research and a mental stamina.

Step 4- Battling the Insurance Company

Adrenal Insufficiency is documented to be treated by oral steroids and not by the insulin pump.

When I submitted a request for an insulin pump, red flags went up that I did not have the diagnosis of diabetes.

I started calling the insurance company on December 28, 2017. It is now February 21, 2108. I have yet to receive ONE thing regarding my pump, supplies and solu-cortef medication,

I explained to the insurance company that I was not diabetic. My doctor sent in a letter of medical exemption. I filed a Formulary Exemption to get what I needed covered.

I was rejected multiple times. Below is the letter I received.

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I am still in the process of fighting this. The last I was told the insurance company instructed me to have the doctor who prescribed the pump call them directly.

Be prepared to be on the phone for hours and be told incorrect information. I was originally told that the medication for the pump would be covered under my medical benefits but because it is NOT administered in a clinic setting, they will not release it to me. My pharmacist contacted the insurance company and was told that because it is not covered under pharmaceutical benefits, they will not pay for this medication.

I don’t know what the right answer is. For now, I am paying out of pocket for my solucortef, which retails at walgreens for $17 per ONE vial. Do I have that kind of money? Nope, I have to just trust that I will be provided for. God didn’t bring me this far to let me down now. He will provide.

Just be aware that you will have to tell the same story to a different agent over and over and over again. Don’t give up.

Step 5- Getting A Pump & Supplies

If your insurance cooperates and provides you with a pump and supplies, GREAT! But I’m pretty sure with A.I it won’t be that easy.

Take heart, there are other options.

There are many ways to obtain a pump and supplies: Diabetic Barter Sites, Facebook Groups, Craigslist and Ebay.

The internet is a plethora of connectivity. You can find what you need, you just have to put in the effort to look.

Step 6- Waiting for the Pump

I have not actually started on the pump yet. I have switched to subcutaneous injections of solu-cortef while I am waiting.

I do recommend this option if you are not doing well on the pill and you are in the midst of your fight for the pump.

I currently take 33.5mg of cortisol daily, which translates to 67 units of solu cortef.

To figure out your dose, You need to convert it from oral milligrams to liquid solu-cortef. 2 units= 1mg

You also need to dose according to the circadian rhythm percentages.

Circadian dosing method example-

6am and 12 noon 40%

12 and 6pm 20 %

6pm to Midnight 10-15%

Midnight and 6am 25-35%

Source for the dosing is based on Professor Hindmarsh’s research (link posted below)

http://www.cahisus.co.uk/pdf/CIRCADIAN%20RHYTHM%20DOSING.pdf

The solution is mixed by using 100mg of Solu Cortef per two ML of saline or sterile water.

I use this solu cortef solution and inject with insulin needles.

My dosing schedule-

3am- I inject 15 units to mimic the cortisol awakening response my body would naturally do if I did not have adrenal disease

7am- I inject 18 units to continue the cortisol awakening response.

11am- I inject 12 units.

2pm- I inject 10 units.

5:30pm- I inject 5 units.

8:00pm- I inject 3 units.

11:00pm- I inject 4 units.

The standard recommendation is to have lab testing to see how quickly you absorb and “use” the cortisol in your body.

I am a hypermetabolizer so I have to dose frequently.

You can have cortisol clearance testing done but it is not typically covered by insurance. It is beneficial to creating proper rates for your specific needs. A pump is only as good as the information programmed into it.

Step 7- Staying Sane

The process to get on the pump is long, obnoxious, detailed and in my mind senseless. No one should have to fight for years to get better quality of life. The healthcare system is broken and changes need to made. This stands for all diseases and treatments, not just mine.

Everyone should have access to a better life. It breaks my heart to see the unnecessary suffering so many people are going through.

Take heart friends, Our voices will be heard.

I am dedicating my life to disease advocacy. I hope when I am FINALLY on the pump I will be well enough to get back into school and study endocrinology.

But honestly, I just want to live again and if this pump can provide that for me…you better know that I want to help other people get it too.

Best of luck in your fight for the pump.

Never Surrender.

Wishing you hope & healing,

-Winslow

Winslow’s Pump Fund

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4 thoughts on “How To Get On The Cortisol Pump

  1. Kari M. Dahl February 21, 2018 / 9:21 pm

    Are you diluting the solu-cortef with 2ml of sterile water instead of 1ml? Is that how you got your math? Just curious—I’m learning!

    Like

    • Winslow E. Dixon February 21, 2018 / 9:22 pm

      Yes. The solution is 100mg per two ML. So I use 2ML of solu cortef solution with insulin needles. It has been SO much better than pills!

      Like

  2. AnnMarie April 28, 2018 / 1:26 am

    How do you determine the basal rate for the pump?

    I’m guessing the bolus amounts are the dosage you are injecting according to the circadian dosing.

    Do you think doing an extended delivery for bolus doses would be beneficial?

    Thank you. Many docs are not being helpful… trying to figure this out on my own

    Like

    • Winslow E. Dixon April 30, 2018 / 9:27 pm

      Basically I calculated my dosing on the pills and applied it to the recommended percentages given by Professor Hindmarsh. I would encourage you to find a diabetic specialist familiar with pumps to help you. It is very important you get adequate steroid coverage.

      Like

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