What happens to your body after 3 years on the cortisol pump?
I lost my adrenal glands to cancer and became adrenal insufficient in September 2014. I was told by my endocrinologist at time it was no big deal. Just take two pills a day and you’ll be fine! (She’s not my Endo anymore btw.) I wasn’t fine. I was weak, sick and miserable. I tried 3 different oral steroids, and increasingly complicated dosing schedules attempting to replicate what healthy adrenal glands do. Nothing I tried was quite right. My health was declining. I was catching illness after illness. I spent nearly everyday in bed. I was watching life pass me by. I was 27, and elderly people had better quality of life than I did. This took a heavy physical and emotional toll on me. The most heart breaking part was how it affected my family. My children were very young and they were already getting used to mom not being involved in their lives. I was devastated.
The day I started my pump I was on 188mg of hydrocortisone. I had been sick with respiratory illness for 6 months straight, and could not seem to recover. Any less steroid would leave me unable to breathe and spiraling into adrenal crisis. I was suffering with symptoms of BOTH over and under replacement of cortisol. Something had to change.
This is where I was most of the time before the cortisol pump.
Though most people have a slight increase in their steroid dosage when they initially start the pump, I was able to reduce my dosage from 188mg to 84mg right away. (Side note– that dosage has continued to decrease as I have gotten healthier. I’m at 30.2 daily milligrams as of fall 2019.) My body was responding well to subcutaneous hydrocortisone.
I saw immediately improvement, but didn’t see dramatic results right away. The first day, I was able to get out of bed, do simple things around my house– cook dinner, spend time with my children, clean up the dishes. I felt different though– no more roller coaster of peaks and crashes as each pill kicked in and rapidly wore off.
The pump is not magic. It took tedious adjustment of the delivery rates, which was almost completely trial and error. The pump enabled me to get my tired body up and make myself exercise my atrophied muscles. It took work and determination. In time, I could drive myself, I could walk around the block. It took nearly a year of adjustments before I could sleep like “normal” people do. I still woke up with a pounding headache every morning, but even that was still an improvement.
So where am I now?
You can tell I’m sick in the first image. I was sedentary, had constant respiratory problems, and was about 30lbs heavier.
It’s important to realize that the pump will not cure adrenal insufficiency nor any of your other health conditions. I’m still battling cancer and I still deal with a few other issues, but my life had changed dramatically for the better. With years of hard work, titrating delivery rates, training my body I can now pass as a “normal” person. I can be active all day most days (there are always good days and bad days with any chronic illness). I can drive. I can exercise- I walk, run, bike, do yoga. I have a social life now. I volunteer at my kids’ school a few hours a week, I serve at my church, and we’re active in scouting.
It’s still a fight. The struggle doesn’t end when you switch to the pump. You’ll always have to deal with things like insurance companies and pharmacies fouling things up. I still occasionally see doctors that are completely clueless about this treatment. Most are intrigued, a few are critical of it. I’m happy to educate them! (Side note– they aren’t always happy to be educated, but I’m going to do it anyway! 😉)
I can see why the cortisol pump might not be right for everyone, but I truly feel that everyone with adrenal insufficiency should have this option available. Some of my doctors at both the National Institutes of Health, and at UT Southwestern have mentioned the possibility of opening a new study on the cortisol pump, and while I’m not going to hold my breath, even just the fact that they’re seeing the benefits is a huge step.
If there’s one thing you take away from this it’s that the pump is a tool. More like a musical instrument actually. If you buy a guitar for example, it does no good if you don’t learn how to play it. The more practice you have with your instrument the better it sounds. This concept holds true for the pump as well. It all comes down to how well you program and use it. If your basal rates are junk– you’ll feel like junk. If you refuse to bolus, or bolus too little too late, you’re still going to feel awful. The pump is a tool to help you manage your AI. It doesn’t do it for you.
I am grateful for the cortisol pump every day. It has given me my life back. No longer am I stuck withering away in bed while life passes me by. I’m up and out and making memories.
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4 thoughts on “3 Years on the Cortisol Pump”
Are you still on such high cortisol rates?
It would be really interesting if you write about any theories about that.
I saw a consulting endocrinologist who said I don’t LOOK like I’m getting 25 mg of cortisol–maybe a third of that. I’m wondering whether other medications such as estrogen patch and oral thyroid bind cortisol or make it get chewed through faster.
The other night I was too tired to refill my pump, so I went back to dexamethasone for a night, and I woke up so, SO much less stiff. I like the theoretical advantages of the pump, though, that is so, SO much more physiological. (I use the Lightman pulsatile pump regimen from the clinical trials in the U.K.)
I would be really interested in any of your thoughts about total amounts, and I bet other people would be too.
~~~~~~~~~~~~ Elaine Lissner (415) 314-9700
I’m not on 84mgs anymore. I should clarify that in the post. It’s taken 3 years, but as I’ve gotten healthier my dosage has gone down to 37mgs, but I am not one to keep myself on a strict dosage. If I need more I take more, whether that be via bolus, a basal increase, or a different basal profile. I have a multiple basal profiles and I still keep 84mgs as my “very sick” profile. I’ve come to realize that a healthy non adrenal Insufficient body does not produce the exact same amount of cortisol every day. It reacts to stressors, so if I’m going to be healthy, it makes sense that I will have to do the same.
As far as higher dosages, I’ve been a patient at the National Institutes of Health for about 2 years now. During that time my steroid dosage has been anywhere from 61mg to the current 37mg, which is still above their guidelines. They can’t understand how I’m on a higher than recommended dosage for my body mass, and yet I have no symptoms of exogenous Cushing’s. I told them dosing is more complex than just body mass. Lifestyle, metabolism, and comorbidites have to be taken into account as well. My blood cortisol is always within range, however, the one time they did a 24hr urinary cortisol it was 5x above range. It would seem that most of my Cortisol is wasted for some reason.
Estrogen and thyroid do affect cortisol. Estrogen increases the number of Cortisol binding sites, which basically means the cortisol you have is more effectively used by the body. Thyroid is well known to affect cortisol metabolism. The more “hyper” your thyroid is, the faster you metabolize cortisol, and this may cause you to need more of it. Infact, increases in thyroid replacement have been precipitated and adrenal crisis in extreme cases. Inversely, the more hypothyroid you are the slower your cortisol clearance, however that comes with all of the fatigue and other consequences of being hypothyroid, so not a good situation.
Dexamethasone has a MUCH higher anti inflammatory effect than hydrocortisone, so it makes sense that it might help you to feel less stiff, however since it does a terrible job of replicating circadian rhythm, I personally don’t think it’s wise for long term use as cortisol replacement. (This was also a contributing factor to my switching to the cortisol pump.)
Out of curiosity, has your Endo been checking your plasma Cortisol? If he’s observed that you look like someone on less than 25mg (which is not a large dose by any means), then I think it would be wise to check your plasma cortisol and ensure you’re in optimal ranges throughout the day.
I’d be happy to chat more about pumping. I admin a Facebook group for cortisol Pumpers, aptly named “Cortisol Pump Group” if you’re not a member already, feel free to join! We have a great group of pumpers in there!
Yes this!!!! SO tHiS!!! My life is forever changed because of pump therapy. I am now an active participant in my life again. And my couch no longer whimpers when I walk by because I am able to be more active and have less couch duty. 😉
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Can you tell me where you are located? My 12 (almost 13) year old daughter has Addisons disease and I’ve seen that they’re doing studies on cortisol pumps in the UK. I think this would be amazing for her. Can you email me?