My First Days on The Cortisol Pump

As you may know, I have been working to switch a new treatment, the cortisol pump, to help me manage my adrenal insufficiency after my last adrenalectomy in 2014 made me steroid dependent.

What is a cortisol pump? Technically, there is no such thing as a cortisol pump. It is an insulin pump that has been filled with SoluCortef instead of insulin. Currently, there is no product labeled a “cortisol pump,” but that doesn’t negate the benefit the pump can bring to corticosteroid dependents.

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*Disclaimer: While I did research this treatment extensively before pursuing it, I am still a newbie at this, and by no means any kind of expert at anything. None of this is medical advice, just what I’m experiencing as I begin my journey with the cortisol pump. πŸ˜€

Before the cortisol pump, I was on a combination of oral corticosteroids. Hydrocortisone alone was a roller coaster, Prednisone alone was not much better, adding long-acting Dexamethasone helped a great deal, but it’s flat, non-peaking action came with its own challenges. What was too little at one time of day, was too much at another, with no way to adjust. I designed a regimen that mimiced circadian rhythm as best as I could, but it was still not right. The different timing of all the kick-ins, and the durations of these oral medications made my schedule very complicated, and still there were times of day I found myself under or over replaced. I think the regimen I used was great practice for the pump, it allowed me to really see what times of day my cortisol needs change, when the demand ramps up and when it tapers down.

I decided to start my pump a couple hours before my long-acting oral steroids would wear off, like training wheels, I’d see how I did and as the oral meds left my system, then pump solo. So first I had to mix the SoluCortef. I have no medical training, and have never mixed an injection, so this was new for me. Not difficult, but new. A little tedious. It takes 3 vials to fill my pump’s cartridge. I followed my pump’s on screen instructions, along with a video tutorial. For my very first inset, I managed to hit a tiny vein in my stomach :(, AND I forgot to take the paper off the sticky part, (lol) so it pulled right back out. I didn’t bleed or hurt, but it left a mark. New spot, new inset, the second try was perfect! πŸ˜€

Do I feel any different? Kind of funny at first, there’s a slight metal taste in my mouth, like when nurses flush your IV line, but not as extreme. I sat in bed and watched more tutorials. THEN, I got up and made dinner. πŸ™‚ Yay!! BEFORE, when I was on oral meds, evenings/dinner time was my one of my worst times of day. It was right when one dose of dexamethazone wore off as another would be kicking in, and I’d usually have to stay in bed and hide. The only way I could actually make dinner for my family was to prepare it ahead of time when I wasn’t feeling bad, either have already made in the slowcooker, or pre-prepared in the freezer. So the fact that I was able to cook a meal at this time of day, was encouraging. πŸ˜€

I started feeling weird while I was cooking; foggy, emotional, I felt slow, like I was underwater. I did a quick rate adjustment for that time block, and in a few minutes I was feeling alright. Quick adjustments are really a huge benefit to the cortisol pump. With oral meds, all you can do is take more pills. You have to just wait and be miserable while they kick in, and you don’t have much control over the amount. For example, a half pill might be too much, a quarter pill not enough. You wont even know until you wait for it to kick in, then if it’s too little, you are stuck waiting for more meds to kick in while you decline, and if its too much you’re stuck with it for the next few hours with no way adjust. Not anymore with the pump.

I knew the pump wasn’t going to be magic. It definitely isn’t. Managing adrenal insufficiency is still a matter of keeping blood glucose stable, keeping electrolytes balanced, and caring for your overall health needs. The pump doesn’t fix these things, all it does is deliver cortisol on a preset schedule. You still need to know when to eat, what to eat, always stay hydrated, and take care of your body, or you’ll still find yourself feeling crappy. Also keep in mind, any other medical conditions you have, you will obviously still have, and they will still affect your adrenal insufficiency. It’s not a cure for anything.

Saturday was my first full day pumping, and we had a family birthday party for the kids, so this was a real test. I slept only slightly better than usual, which is hardly at all, my night time rates definitely still need adjusting, but I got up and everything was okay. I actually found myself singing as I got ready, but maybe I was just in a good mood. We won’t blame the pump for that ;). The day went well, I didn’t do anything crazy or have any super powers, but I felt alright and functioned pretty well. I didn’t have any low cortisol symptoms all day which is pretty flippin’ incredible if you ask me. I find I do still get cranky when my blood glucose is low, still very sensitive to spikes in BG, and still get light headed/headache when I don’t get enough salt, but those aren’t really cortisol issues as much as they are “Michelle, have a snack and take a salt tablet.” Problem solved.

My first thought was “Why aren’t they doing this for everyone?” but I can see why some would not be a good candidate for the pump. For example, anyone who has some, or could regain their adrenal function, might not find this treatment worth the time and expense. Since I’m post-bilateral adrenalectomy, it’s safe to say adrenal function is not coming back. I often see people in support groups say things like “too much cortisol feels exactly like too little”…I think the pump going to be kind of tough to manage for those who can’t tell the difference. Also, if you have to call your endo every time you need to take an extra dose…this could be tough for you. Quick adjustments are the biggest perk I see to this, so it helps to have some degree of autonomy. If you do not trust yourself to make adjustments, or your endo doesn’t allow it, this might slow down your progress with the pump. Also, those who are not not technically inclined might have some difficulty operating the pump at first, but it shouldn’t be too tough to learn. πŸ˜‰

So I’m finally pumping, and so far so good. Hopefully my inset site keeps working well, and nothing unexpected happens. I’m just starting out, but the first day I saw an immediate decrease in steroid dosage when going from pills to pump. Keep in mind MANY other factors could have contributed to the decrease, and my dose was very high to begin with. “Results not typical.” πŸ˜‰

Thank you to everyone that helped me get this infusion pump. Everyone that gave me advice, support, and donated. It was an uphill battle, but I had a lot of amazing people encouraging me along the way. I have a lot of goals for the future I hope the pump will help me accomplish. I want to make up for the time I lost, but the next step is preparing for my pheochomocytoma surgery and hopefully better cortisol delivery will help with post-op recovery.

Thank you my friends! πŸ˜€

πŸ’•Michelle

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11 thoughts on “My First Days on The Cortisol Pump

  1. Congrats!!!! I remember the first day I woke up on the cortisol pump, those around me were shocked at the fact that I actually looked “alive” in the morning. We normally had to wait 30 – 60 minutes for the meds to kick in.

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  2. Michelle, it is great to hear you are experiencing improvement on the pump! I was diagnosed (self diagnosed parathyroid tumor and SAI) 2.5 yrs ago after ill for 3 yrs. I am a 3rd generation SAI (maternal grandmother treated like psych case and m. aunt took white pills-HC at 7a and 1p to stay alive but had no name for her illness. Four years before my dx her her GP did not recognized increased symptoms meant need gor more HC. She died of massive heart attack). My sister 1.5 yrs younger has now been diagnosed. Would you be willing to share the doctor that oversaw the placement of your pump. I only know of one AI person on the pump and she is cared for by Dr. Hatipogla at Cleveland Clinic. I do ok (medical disability) but my sister is not doing well on HC. Lives in Arizona and working full time job and caring for grandchildren ( 54 yrs). Thank you.

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  3. Congrats! I’ve only been on the pump about a month but definitely feel the difference. I’m still doing weekly blood tests and having the doctor make adjustments but starting to feel like I may get my life back. Looking forward to following your journey!

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    • That’s wonderful Tiffani! I’m also going to be doing my cortisol blood draws very soon to check these rates which I’m curretly still adjusting. I stil have some times of day I think need a little improvement, but I’m getting there. πŸ™‚

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  4. I have been on the pump now for 9 months. It has been so wonderful to feel so normal! I have so much more stamina than I had before. I have been diagnosed with Adrenal Insufficiency for 3 years now and it has been a great three years. Even with the stress of having to raise four teen daughters by myself, we have been so blessed. I now have three daughters in college and one left at home. I work full time.

    When I took my 18-year-old to Provo Utah for freshman orientation at BYU in August- I went to a full day of parent-orientation. I left Salt Lake City at about 7:00 am. Took the train then the bus to campus. Walked all over campus (it’s big!), attended several hours of parent training. Ate in the cafeteria with my daughter, then left her and took the bus and then the train back to SLC. I got back about 9:00 p.m. – yes, I was tired, but I had made it through a very full day and still had enough energy to visit with my in-laws before heading for bed. It was so amazing. I know I never could have done all that so well without the pump. I never ever want to be without my pump! it has been such an amazing blessing!

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    • I am SO happy to hear that!! I’m so glad you’re able to be an active part of your family’s lives! When managed correctly, the pump really is life changing! It has really turned things around for me as well. I was just saying not even 30 minutes ago, that I feel like the pump has given me my life back! It’s an incredible feeling that is hard to put into words. I wish this treatment was more accepted and available to all adrenal insufficient patients. It’s been amazing!

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      • Hi Michelle,
        I was wondering if you, and everyone who posted here, could tell me what city they live near. I know many people are looking for an endo that uses the pump and can’t find one. Please, share the wealth ladies!
        Noreen

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      • Hey Noreen,

        I never could find an endo that would start me on the pump. I did everything myself, with some guidance from other cortisol pumpers. I gathered and read all the research I could find, I studied circadian rhythm, I researched pumps and bought once second-hand from Craigslist as well as my supplies. My primary doctor didn’t know a thing about the pump, but I brought her research and explained my case. She was confident I could do this, and prescribed the solucortef I needed.

        Currently I live in the Dallas, Texas area and see an endo at UT Southwestern. However he did not start me on my pump.

        My suggestion would be to email endocrinologists at all of the university/teaching hospitals you’re willing to travel to. Tell them about your issues and that you would like to switch to subcutaneous cortisol infusion via insulin pump. Site promising research studies (I have links to these on my “resources” page.) and that adrenal insufficient patients already using the cortisol pump have had improved management of Adrenal insufficiency with this treatment. See who is willing to do this for you.

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  5. I live just outside Fort Worth, would you be willing to email me any info you are comfortable giving for me to access the pump. I’ve been living between life and death too long and am aching for a next step.
    My Endo is good but he says he just doesn’t have any knowledge of the pump. I’m actually going to see him tomorrow because I’ve been down a week and that’s even after a shot, an iv, and supplement tinkering. Blah!
    Thanks for any and all help.
    Angel

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