4 Years with the Cortisol Pump

4 years of cortisol pumping and I can hardly believe how far I’ve come. I’m not superwoman, nor will I ever be, but it’s a night and day difference from my life pre-pump. I am an active and functional human. I can exercise- I love yoga and enjoy walking a couple of miles with my husband every evening. I have the energy to be mom. I can do activities with my kids, we can do craft or building projects together. I can ride bikes, hike and play sports with them. Recently we decided to homeschool going forward, because it was actually enjoyable while school was closed. I feel more myself and more alive than ever. My weight is healthy and stable, even my hair and skin has improved in the last 4 years. Of course there is room for improvement, I still need more rest than most non-adrenal insufficient and non-cancer having people, and I have to be careful about not overloading my schedule. My health requires more care and upkeep than your average person, but I am so glad I’m not where I used to be. This extra work means I can live an active, happy life and make as many memories as I possibly can.

Morning yoga.

On June 10, 2016 I took my steroid pills that morning like normal. This was almost 2 years after becoming adrenal insufficient and in that time, I had tried 3 different oral steroids and every dosing schedule you could imagine. Nothing seemed to bring significant improvement. I found that my health was steadily declining. None of the doctors on my medical team were interested in finding out why the oral steroids weren’t helping. They were too busy shaming me for taking more than the suggested dose. They acted like I was supposed to just accept that I was always going to be a sickly person, too weak and tired to get out of bed.

4 Years Later

It hurt to see people live life around me. My husband, my children, I had no energy for them. I would see elderly people jogging, biking, living more active healthy lives than I was at 27. I unfollowed and unfriended nearly all of my peers on social media because it was devastating to see them enjoying life while I was wasting away.

However, I did not have it in me to give up, to fall into despair and roll over and die. I had to get better, somehow. I knew of a small group of women that used cortisol pumps to manage their adrenal insufficiency. Their lives were so impressive, they were smart, resourceful, they had careers, family lives, they exercised, some of them could run and play sports. As I lay deteriorating day by day, their lives gave me hope- maybe I could do that? Why not? I would fight to live again.

Getting a pump was an immense challenge. I had no one in my corner no one to help, no doctor to facilitate. I had to learn on my own. What pump do I get? How do I program this thing? What is an inset? What other supplies do I need? How do I operate this? And how am I possibly going to afford this? This journey to get the pump was long, and frustrating. I had to stretch the limits of my foggy low cortisol brain. I had to visit numerous doctors. I got told no a lot. I was ridiculed. I had to jump through hoops. I had to humble myself and ask friends and family for financial help. There were so many road blocks, and when I didn’t see a way around I just prayed. Eventually everything came together.

When I got my first pump, I was simultaneously overjoyed and terrified. I was standing on a precipice ready to leap. This would either give me my life back, or it wouldn’t work and this would a be a giant, heart-breaking waste of time and money. I had to take the leap to find out.

The cortisol pump is not miraculous. It won’t give you superpowers. Best case scenario, you can hope to feel as good as a “normal” person. A normal person still gets tired, they still get sick, they’re cranky sometimes. What I’m saying is, normal is not the same as perfect. Far from it. But if you’re reading this thinking to yourself that normal sounds like a dream come true, then the pump might be what you’re looking for.

My improvement was slow, though I was delighted with what little progress I saw. I was so tired and weak before that the little improvements seemed huge. It was about 6 months before I could sleep though the night. It took about a year before I was fully functional. Month after month, year after year, I steadily improved. Its an ongoing process don’t expect to plug in your pump and be all better. It takes time, hard work, adjustments, and experience.

Time- You will get discouraged at times because progress is slow and you still can’t do the things “normal” people do. Try to focus on the improvements you’ve made, not the things you still can’t do. And for goodness sake, don’t compare your journey to your friends’ on social media. You are only seeing their photo worthy moments, they are all far from perfect, and rest assured that behind closed doors they have problems you wouldn’t want to deal with.

Hard Work- Recovery took unfathomable work on my part. The pump doesn’t fix things on it’s own. It makes it possible for YOU to fix things YOURSELF. I had a long journey ahead of me once I started pumping. I had steroid weight to lose, atrophied muscles to strengthen, weak lungs that needed conditioning, comorbities to manage. It took effort and discipline to get up and exercise every day. It took patience to start slow and easy and not push myself into an adrenal crisis. Consistency was key. Just do one little thing every day, and most importantly- DON’T STOP. Along the way I discovered other health problems. I seemed to react to gluten, though none of my doctors wanted to test me for celiac, I went on a gluten free diet in fall 2016 and was amazed at how much my health improved. I had some surgeries that needed to be done, in 2017, 2018 and 2019. Each one was tough, but allowed my health to improve a little. I also discovered I had problem with recurrent systemic infections. This required another dramatic diet change. None of these things were easy. This is my blood sweat and tears we’re talking about. The pump didn’t magically make me better. It gave me the strength to WORK for it.

The pump is only a tool, HARD WORK and DISCIPLINE is what changes you.

Adjustments- I didn’t start off with a knowledgeable pump doctor. So I used a lot of trial and error to program and adjust my basal rates. I don’t recommend this at all. The pressure of being your own endo is crushing. I had very little cortisol testing the first 2 years. A series of 4 blood draws a few months after starting the pump, which didn’t do a lot of good because I had no doctor able to interpret the results. I had to figure it out myself and decide what basal adjustments needed to be made, which was not all that effective. I got saliva testing some time in 2017. There were more samples collected than with the previous testing, but again I had no doctor able to interpret the results. All I could glean from that testing was that I wasn’t as horribly over replaced as I had been led to believe. In 2019 I had my first 24 hour cortisol curve. This test was brutal. I had an IV line placed and blood drawn ever hour on the hour for 24 hours. This meant I had to be in the hospital and could not be away from my hospital bed for more than a few minutes or I would miss the blood draw and invalidate the test. This was also traumatic on my veins despite having an IV. It turns own veins do not like having the blood literally sucked out of them with a syringe. When the test was done, my IV was barely holding and my veins were so inflamed you could see the red branching up my arms through my skin. However, the results I got from this test were amazing! For once I had a doctor that knew very well how to interpret these results. She knew how to adjust my basal rates accordingly and this ordeal resulted in a well optimized basal program with more energy and fewer milligrams. This was a major milestone in my pump journey. Don’t for a second think you can “borrow” a basal program, from a research study or another pumper and think this going to give you amazing quality of life. Basal programs need to be tested and tailored to the individual. Without that individualization, you are not getting the full quality of life possible from your pump.

Painful, red, inflamed veins near the end of my 24 hour cortisol curve.

Experience- There are lessons you learn about cortisol pumping that no doctor can ever teach you. Somethings you only learn with experience. One of the first lessons I learned is just because your pump can bolus many milligrams- doesn’t mean your infusion site can handle it. Boluses are necessary, but large boluses can stress the site. In time, I realized that any boluses more than 5u are best given as an injection. I noticed how my body reacted to stressors, and realized that there were certain signs and stressors that ALWAYS required a bolus. I noticed that a small bolus before the symptoms started was more effective than a large bolus after I was already feeling like crap. Learning proactive cortisol management was another turning point for me. I had the opportunity to try various models of pumps over the past four years, and I’ve learned the pros and cons to each, and what works best for me. I have learned about infusion sets, what types work best for certain body types and places. What areas insets perform best, and the conditions that cause them to fail. I learned I had a lot less bad days when I stopped ignoring leaky or bruised insets and replaced them at the first hint of failure. I leaned that tubing will clog if left exposed to air when disconnected or reused for too many days. That these clogs don’t always block the line bad enough to set off the pump’s alarm, but they do block delivery enough to make you feel crappy. I learned that site failures can take days to recover from, and low cortisol often leads to even more site failures, as does running high rates, creating a vicious cycle. I learned that supplementing with subcutaneous cortisol injections can help stabilize my adrenal insufficiency in these situations. I learned that basal programs are not some static, set-and-forget, that my body’s cortisol need changes based on circumstances. That a body in stress (or illness or pain) requires elevated and flatter “shape” (picture a line graph) of cortisol delivery, whereas a non-stressed body needs something more like the standard circadian rhythm shape. And depending on where you currently are in that spectrum between stressed and non-stressed, is how much your cortisol need will resemble one of these two shapes there are endless variations, and this is key to remember when weaning your dose from illness, injury, or surgery. Currently, I am still learning how to tolerate the summer heat. Which pumping strategies are most effective and what other non-pump strategies can help with heat tolerance. The point I’m making here is you never stop learning, and somethings you can’t just be told, you learn by living through it.

Cortisol pumping is not glamorous, convenient, or easy.

There are not words suitable for how grateful I am for my cortisol pump and how dramatically my life has changed since starting this delivery method. There are days I’m frustrated and I hate being poked with needles and having bumps and bruises, there are times I wish I didn’t have to wear a medical device and I cry and think it’s not fair. But I know my pump is a blessing, and I would never have made it this far without it. I want everyone to know that there is hope. You are not doomed to suffer in silence. You can improve your situation. It will not be easy- ever. My life is not easy now, even 4 years into it, but it’s worth it. Its worth every tear, all the pain, all the frustration, it is 100% worth the fight. Don’t give up!

-Michelle

How Do I Know When to Reduce My Stress Dose?

A question I see often in ALL of the adrenal insufficiency support groups groups is, “How do I know when to reduce my stress dose?” Here is how I know:

About 3 weeks ago I injured my back. I’m prone to annular tears between my lumbar and sacral spine. I was in a lot of constant pain and could hardly move. So I had to stress dose. (Double my normal dose, but as a “sick” profile NOT doubling my normal basal program.) I couldn’t afford the $200 self pay for the chiropractor, so I decided to treat it with CBD and yoga. It was very painful and difficult to do yoga when it hurt to move, but it was also effective, so steadily it has gotten better.

So now here I am back to my “normal”, which does include some back pain, but manageable. I’ve been on my 60mg profile for this whole 3 weeks. Seems like a long time, but I have certain signs I look for to know when it’s time to reduce. I’ve found over the years that if I drop my dose down too soon or too quickly then I sabotage myself and make the whole process much longer and more challenging. Even with my stress dose I was feeling exhausted, not a whole lot of appetite, and I was feeling overwhelmed with all the tasks piling up around the house.

Things have been slowly improving and I started to wonder when it was time to reduce the dose. Today I saw ALL the signs. Before you reduce your dose from an injury use this checklist:

**NOTE: This only pertains to stress dosing. Do not change your daily replacement dose based on this criteria. Please discuss all dosage decisions with your doctor.**

1. Pain is well controlled.

I’m still taking CBD twice daily and doing yoga a few times a week to keep my back stretched and strengthened.


2. Energy is good.

I had a very productive day and checked everything off my to do list for once. I cleaned up the house, did laundry, baked, even had time to read.

3. In control.

As in not overwhelmed or frustrated.


4. Appetite is good.

I have been more hungry today than in the last week. More than normal hungry, so that’s a big clue.


5. Waking up earlier.

I try to be out of bed by 8, but on pain days that’s a struggle. I know I’m feeling better when I’m out of bed on time with no issues.

It was pointed out by another knowledgeable cortisol pumper that one thing NOT on my checklist is weight. I do not use my weight to determine when to decrease my stress dose. Fluctuations in weight can be misleading and sometimes can be due to water retention from being less active while sick or injured, or weight gain can be from…not sure the polite way to say this…being full of poop. Its not uncommon for people to get a little constipated while sick, on pain medications or antibiotics. Antibiotics can kill off intestinal flora which can cause some GI upsets long after whatever infection caused you to need the antibiotics in the first place.

Sadly, all too often I see people with adrenal insufficiency cause themselves so much unnecessary suffering because they think they look puffy, or their scale went up 5-10lbs, or they’re just afraid of possible weight gain. They disregard their current quality of life and begin a difficult and sometimes traumatic steroid decrease too soon. I’ve been guilty of this myself plenty of times, enough that I’ve finally learned my lesson.

I hope this helps someone out! It always feels like a gamble deciding when to reduce. Sometimes I think steroid guilt drives us to cut down too soon and we suffer longer.

**NOTE: This only pertains to stress dosing. Do not change your daily replacement dose based on this criteria. Please discuss all dosage decisions with your doctor.**

UPDATE: Please check out thecortisolpump.com a comprehensive and research based guide to cortisol pumping!

Extreme Cortisol Pumping: Pumping During Surgery

A few days ago, I had my 10th surgery. This one was different as opposed to the previous nine. For the first time I was permitted to wear my pump during the procedure.


So how did it go?


This was a fairly quick, laparoscopic abdominal surgery. Patients without comorbidities are usually back home in a few hours. Since I have adrenal insufficiency and some signs of pheochromocytoma, they did keep me a little longer as a precaution. 

Speaking of precautions, if you have adrenal insufficiency you MUST speak to your surgeon, endocrinologist and anesthesiologist about your steroid plan for surgery. Everyone needs to be on the same page. I can’t tell you how many times I’ve heard adrenal insufficient patients say, “oh the anesthesiologist knows what to do” DO NOT EVER MAKE THAT ASSUMPTION! They do tend to keep solu-cortef in the operating room, but that doesn’t mean they will dose it correctly. Some anesthesiologists deviate from the standard of care and come up with their own plan using less steroid. They think they’re doing you a favor, when really they are unknowingly endangering your life and hindering your recovery. DO NOT LEAVE THIS UP TO CHANCE! Make sure you’re on the same page!


As soon as surgery was mentioned, I made my concerns clear. I knew there would need to be special precautions because of the risk of adrenal crisis or hypertensive episodes due to pheo. I spoke to my surgeon and endo about this as well as two anesthesiologists. I had to have more tests than the norm in order to be cleared for surgery. I had to have any possible pheo activity blocked by taking blood pressure medication for a couple months. At this hospital they don’t assign an anesthesiologist until the night before the procedure. This makes communication a challenge, but by the time I actually met her, pretty much everyone including the nurses had already heard about my steroid plan and pheo concerns. When I discussed it with her, she had already heard my plan and was thankfully in agreement. I would receive 100mg of solu-cortef before and after the procedure and keep my pump running.

https://www.addisons.org.uk/files/file/4-adshg-surgical-guidelines/


This is where I made a mistake. I planned on running a straight 10mg/hr during the procedure. However I forgot to program that profile into my pump. I programmed it in pre-op and realized my settings only allowed me to go as high as 8mg/hr. I didn’t want to edit my settings at the last minute, so I programmed 8mg/hr. That would have worked just fine except I FORGOT TO SWITCH OVER TO THAT PROFILE. Yes, it is all well and good to program a profile, but you have to actually “run” said profile for it to work. Oops! So during the procedure I was running my normal every day basal program of 30.2mg/daily. 🤦‍♀️


I woke up being wheeled into recovery. My abdomen hurt so bad. They gave me IV pain medication, but the relief began to fade after a couple minutes. They gave me another dose. Then I watched the nurse give me 100mg of solu-cortef. 15 minutes later I was moved to a regular room. That’s when I realized there was a problem. The IV pain meds had worn off already. My pain was uncontrolled. I felt nauseous, but the nurse would not give me any oral pain medication until I ate something. I had a couple spoonfuls of pudding and felt sick. I was given IV zofran with minimal effect. Still sick. Every IV medication I’d been given seemed to metabolize way too fast. This has always been the case for me, and it’s the main reason I had to switch to the cortisol pump to begin with. 
There’s a familiar and unpleasant feeling I get when my cortisol isn’t sufficient. It’s an uneasy, almost panic feeling where I’m keenly aware that something isn’t right and I’m increasingly desperate to find relief or escape. It’s more like a primal instinct, “Something is wrong, help me!” I’ve unfortunately felt this enough times to realize it was cortisol related. I realized then my pump was still set on the measley 30mg profile. I immediately switched it to the 8mg/hr profile that I had programmed in pre-OP. The problem is it takes a while for pump rates to build your blood cortisol level. For whatever reason my body did not keep those 100mg IV solu-cortef boluses in my system very long. So I had to suffer while my rates caught up. Meanwhile the nurse had given me a couple doses of pain pills, and IV phenergan. Phenergan only helped the nausea for 5 minutes or so, but thankfully it made me extremely sleepy. I was able to sleep through the misery and give my pump some time to do its thing. A few hours later the nurse came in to check on me, by then the pain meds were working and my pump was kicking butt. I was still pretty knocked out from the phenergan, but I felt well enough to get dressed and go home. My nausea was gone and my appetite had returned. Yay for proper steroid dosing!


Friends, I can’t tell you enough how much sufficient steroid dosing will make or break a situation. Especially a high stakes situation like a surgery. It’s amazing how fast I went from utter misery in the hospital, to eating a sandwich at home. Steroids ya’ll! They’re a big deal! I stepped down to my 84mg/daily “sick” basal profile and kept it there until late evening. Note: your ability to lower your stress dose will be a case by case situation and depends on what type of surgery you had, how long it was and how invasive it was. Pain control is a major factor. Stay on top of your pain medication schedule. Do not let your meds lapse or try to suffer through it. This will increase your body’s cortisol need, hinder your ability to taper your steroid dose, and potentially prolong your recovery. You need sufficient steroid dosing to get pain under control and you need your pain meds to keep your cortisol need under control. They go hand in hand, don’t skimp on one or the other. 


Quick PSA: When you’re running high rates. YOU WILL need to change your inset more often. Pumping during surgery and recovery sounds pretty convenient compared to stress dosing with pills, and it was, but what I did not mention is all the stress that kind of volume puts on an infusion site. My site was leaking by bed time, which I totally expected to happen. This is EVEN MORE true if you run 2:1 dilution ratio in your pump because you are pumping twice the volume than those on 1:1 ratio. So yes, stress dosing and sick dosing with the pump is easier and more effective than pills, but DO NOT NEGLECT YOUR SITE! Don’t wait for it to start leaking either! When you’re ill/recovering your body needs cortisol the most, this is not the time to wait around for a site failure! I’ve changed my site DAILY while recovering from this procedure.


I’ve had 2 previous surgeries as a pumper, but the medical teams for those procedures were not familiar  with, or keen on the idea of pumping during surgery, and I didn’t push them for it. After my experience pumping during this latest procedure, I am going to push for my pump every time. Infection risk is minimal, it’s less than that of the actual surgery itself. The continuous delivery of the pump is ideal for recovery and superior to IV bolusing dosing only, especially since hospitals seem to think bolusing once every 8-12 hours is going to work fine. Its miserable. Continuous delivery is where it’s at! One day they’ll get with the times I hope.


At the time of writing it’s been nearly 48 hours since my surgery. I’m back on my normal profile plus a 200% increase (double dosing). My energy is good and my pain is well controlled as long as I keep up the pain medication schedule. My biggest problem at the moment is remembering not to over do it. I’m tempted to clean house, go on a walk, etc, and I dont feel like resting like I should. Steroid dosing makes a world of difference, and the pump makes this a much smoother experience. Just don’t neglect your infusion site or your pain meds! Happy healing friends!

❤Michelle

UPDATE: Please check out thecortisolpump.com a comprehensive and research based guide to cortisol pumping!

3 Years on the Cortisol Pump

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.

UPDATE: Please checkout thecortisolpump.com a comprehensive and research based guide to cortisol pumping!

Surviving the Heat with Adrenal Insufficiency

Heat is my nemesis, but it hasn’t always been this way. Actually, I really enjoy summer! My problems with heat started when I had my adrenal glands removed and I became adrenal insufficient. I’ve come to realise that I’m not alone. Most, if not all adrenal insufficient patients struggle with heat intolerance. To further complicate things, we are highly susceptible to dehydration because of hormone deficiencies.

So what is an adrenal insufficient patient like me to do? Stay indoors all summer and let life pass me by? If you know me, you know that’s not my style! I’m too stubborn to give up!

This past week my kids had their first ever scout day camp. I was obligated to attend with them as a walking den leader. I was terrified. So much could go wrong! Me, with my less than dependable health, out in 90 degree weather, all day long? I often get dehydrated even when I’m not in the heat. I get fatigued from just running errands some days. How in the heck am I going to pull this off?

The night before I was panicking. What if I couldn’t handle it? If I had a medical emergency I’d be so embarrassed! If I got dehydrated and fatigued, I’d be letting the other den leaders down, and they wouldn’t understand what was really happening to me. I was crying and even typed out a text to back out of the whole thing– I didn’t hit send though!

The first day of camp I showed up prepared as possible. Shorts, hiking boots, baseball cap, sunscreen, bug spray, TONS of water and my electrolyte drink of choice, coconut water, a liter of it! As prepared as I thought I was, the first day was brutal. I was feeling wiped out from the heat by the time we got to our first activity. Splitting headache from dehydration, despite drinking every bit of that giant bottle of coconut water. I was fatigued and feeling “out of it” my muscles were getting sore, again probably from dehydration. I use a cortisol pump, so I did my typical bolus amount, took an extra dose of fludrocortisone, a salt tablet, and some Advil for the muscle pain and headache. It got a little bit better in about an hour, but I was struggling until dinner time. After the rest and food at dinner, I felt a lot better.

Day two I knew I needed a better strategy. This time I brought a camping chair to sit in so I could rest a little during the instruction times at each activity. I also bought a wagon to carry it and all of the things the campers ask you to carry along the way (I should also add that my right arm is broken at the moment which makes carrying things kind of tough). It was a smart move, but STILL I was dealing with that fatigue and dehydration headache by the first activity! It didn’t seem to matter how much water and coconut water I drank! Again, I bolused, took extra fludrocortisone, salt tablet and Advil. I bounced back just a little bit quicker this time. Day 3 went about the same. What was I doing wrong? Maybe the killer headache and overwhleming fatigue were just unavoidable in this heat?

Well good news, day 4– I figured it out! We arrived at camp just like the previous days, but this time I bolused right there in my car, before I ever stepped foot into the heat. I changed my bolus strategy too. I took my typical bolus amout and DOUBLED it. I utilized the “dual wave” bolus feature on my pump (OmniPod and Tandem call this extended bolus, and Animus calls it combo bolus.) On my medtronic 630g you have to turn on this feature in your settings. Dual wave allows me to split up my bolus. You set a percentage to deliver immediately, and a percentage to be slowly delivered over a time period you chose. I delivered 50% of the amount (which would be my typical bolus) immediately, and had the other 50% delivered over the next hour (which happened to be the heat of the day). I also went ahead and took that extra fludrocortisone, salt tablet and Advil ahead of time. I went the entire day, active, alert, and symptom free! Day 5 was also symptom free!

It turns out the key is being prepared BEFORE you ever step into the heat. Don’t wait until you’re already sweating, don’t wait until you’re feeling wiped out and crappy! It’s going to take you all day, or even days to catch up at that point!

In summary, here’s what I learned:

If you know you’ll be in the heat, bolus (or updose) ahead of time! If you’re only going to be in the heat an hour or less and not physically active, a normal bolus (plus adequate hydration of course) is probably all you need. The important thing is that you do it BEFORE!

If you’re going to be in the heat for several hours, or plan on being physically active (such as yard work or a sport) you will need more steroid than you think. For me, I needed double my typical bolus amount. Splitting it using the dual wave feature was a huge help. I also needed to increase my basal rate signifcantly. I may not have needed to do this if I could have managed the first 3 days better, but by day 3, I was on my “sick” basal profile, and I stayed on that profile for the rest of camp.

HYDRATE! Don’t wait until you’re in the heat to hydrate, don’t wait until you’re thirsty, and don’t think that just water is going to do the job. You need electrolytes and you need to start drinking them HOURS before you go outside. You really can’t start the intense hydrating too early! As I said, my electrolyte drink of choice is coconut water, do what works for you.

Shade is precious! The sun is BRUTAL! Stay in the shade as much as possible. If you get an oppotinty to sit and rest, don’t be too proud to take it! Try to find ways to exert less energy, maybe that means sitting, using a cart or wagon to carry heavy things, or humbling yourself and asking for help (which I did have to do at one point).

Sun protection/bug spray! I hate sunblock. It feels greasy and gross. Bug spray is stinky, yuck! Here’s the thing though– you don’t want to add any additional stressors to your body by getting sunburned or insect bites. On that note– dress appropriately! Dressing for the outdoors is not very stylish, but ou want to dress in a way that you stay cool, and protect yourself from sun, biting insects or itching plants.

It figures that my experience from scout camp basically amounts to “Be Prepared” which also happens to be the boy scout motto!

Stay safe and cool this summer!

Cortisol Pumping with OmniPod

Any insulin pump is suitable for cortisol pumping. OmniPod is a tubeless pump. The pumping mechanism, medication, and cannula are in one “pod” that is adhered directly to the skin. With tubed pumps, your pump and medication are in the device that is attached to your infusion set via tubing.

What is adrenal insufficiency/Addison’s disease?

In the video below, Kimball demonstrates how she fills and activates an OmniPod for cortisol pumping. Click here to follow Kimball on instagram.

UPDATE: Please check out thecortisolpump.com a comprehensive and research based guide to cortisol pumping!

“Sick Rates” Yes, You Need Them!

What if I told you that you don’t have to feel like utter crap every time you get sick? What if your illnesses and injuries didn’t force you to miss out on life? What if there was a way to feel better faster?

Anyone with Adrenal Insufficiency knows that an illness or injury, anything causing your body an extra amount of stress will require a “stress dose”. For anyone unfamiliar with the term, that is an increase of your steroid dosage in order for your body to cope with physical or even in some cases, emotional stress. A stress dose can be a one time extra dosage (which in pump speak we call a “bolus”), but most often it entails doubling or tripling your total daily dosage of steroid.

But what if there was a better way?

For any patient using a cortisol pump, doubling or tripling your basal rate is NOT the most effective way to combat the stress of an illness. Professor Peter Hindmarsh, the leading expert in cortisol pump therapy, states in his book that doubling basal rate DOES NOT double your cortisol level (Congenital Adrenal Hyperplasia: A Comprehensive Guide p.357). Instead he suggests running a different basal program. Ladies and gentleman, you need to have “sick rates”!

What exactly are “sick rates”?

Sick rates are modified delivery rates part of a basal program better designed to accommodate your body’s cortisol needs when you’re ill, (or injured, or grieving, etc.).

Basically, when a person is sick, the pattern in which the body produces cortisol changes. Rather than the typical high peak in the morning declining throughout the day to a very low cortisol level at midnight, cortisol is needed in a more consistent elevation. Cortisol levels are higher and more “flat” in appearance if you were to draw them on a graph.

This change in distribution is key. You don’t even necessarily need to double or triple the amount of milligrams, having this more consistent delivery pattern when your body needs it makes a world of difference.

So what do sick rates look like? How do I program them?

The main difference you’ll notice in my example is that evening and night rates are much higher than you’d find with typical circadian rhythm. This is on purpose, and its the most crucial part of the program. Don’t cut these evening rates down and expect it to be effective. That’s the whole point of the “sick” profile.

Full disclosure: I did not design this delivery profile. For the sake of privacy, I will not name the person who did, however I will say that this person is a medical provider with many years of first hand experience with adrenal insufficiency, and management of cortisol pump patients.

You might have some questions…

Only 4 time blocks?- Yes. You don’t need a complicated delivery profile for illness. You want it to be elevated, consistent, and “flat”.

Isn’t 84mgs kind of high?- Maybe. It would depend on your normal daily dosage and exactly how sick you are. As a sick day profile, 84mgs is a good amount for someone who takes 30-40mgs on a typical day. Keep in mind this is for when you’re experiencing significant illness or injury. I’ve also used this profile to cope with the emotional stress of the sudden loss of a loved one. This is not a profile for sniffles. The beauty of this basal profile is that you can switch to it and set a temporary basal increase or decrease to suit your level of “sick”. Have a cold? You can set a temp decrease. Recovering from a major illness or surgery? You can set a temp increase.

This can be template for you to explore alternative basal profiles. For example, I have a profile that is a steady 6mg/hr for 24hrs. This is what I used to wean down from IV steroids post surgery. From there I made a profile with 2 time blocks, 6mg/hr for 12hrs and 4mg/hr for 12hrs as a step down toward “sick rates”. My point is, basal profiles should be flexible to suit your body’s needs in a given situation. Just as a non adrenal insufficient person’s cortisol production is not set in stone, neither should our basal rates.

Don’t wait until you’re sick to program a sick basal profile! You won’t be clear minded enough to design a totally new profile. Just plug this into your pump now and save it. When you do need it, you can just switch over…no hassle, no worries!

What if I don’t use a cortisol pump?

If you’re not yet using a cortisol pump, you can still use this principle in your stress dosing strategy. This can be accomplished in one of 2 ways. You can either dose your hydrocortisone MUCH more frequently (which can be difficult if you’re feeling poorly), or you can use a longer acting steroid such a Prednisone or dexamethisone to give that more consistent elevation.

What I hope you take away from this more than any cookie cutter basal profile, is that you begin to look at your body’s cortisol need as an ever changing and fluctuating thing rather than how we typically view set doses of medication. Look at your basal programs and dosing schedules logically and creatively.

A cortisol pump is nothing more than a tool. The more skilled you are at using this tool, the better you will manage your Adrenal Insufficiency.

Happy pumping friends!

❤️ Michelle

For more information about sick dosing please check out thecortisolpump.com a comprehensive and research based guide to cortisol pumping!

5 Reasons NOT to Get a Cortisol Pump

The Cortisol pump has the potential to dramatically improve the lives of patients with adrenal insufficiency. All current research studies indicate improvements in patient quality of life. With results like that, the pump seems like magic, right?
My own experience with the cortisol pump has been dramatic and highly successful. Positive patient testimonials such as mine, make others suffering with poor quality of life think the pump is the solution to all of their woes.
While I have raved about the merits of the pump, I’ve also been honest about how difficult it has been, and that pumping alone hasn’t fixed everything, nor did any of these changes come quickly.
I am not writing this to discourage anyone from using the cortisol pump. Personally, I love it, and I want this treatment to be an option for every adrenal insufficient patient. However, I don’t want to mislead anyone. I want patients to have a realistic idea of what pumping entails so they can make an educated decision about their treatment.

5 Reasons NOT to Get a Cortisol Pump!
1. You feel great on steroid pills.
This was never the case for me, and I don’t come across a whole lot of people that do, but there really are some patients out there that get by just fine on oral steroids. For these patients, it would not be worth the time and effort to switch to a pump and it would not be worth the extra work and expense to maintain it.
2. You are not a self advocate.
This is still an uncommon and relatively new treatment, (cortisol pumps have been in use about 13 years.) It’s likely you’ll have to search for a doctor that supports this treatment, and even when you find one, there is a good chance they will have very little to no experience with cortisol pumping. If you cannot gather research yourself, present your case to the doctor, be prepared to be rejected, and be willing to try again…it’s not going to work out. Even when you start the pump, you will have better success if you can work along with the doctor to keep track of your own symptoms and adjust your own delivery rates accordingly. You will never be able to just sit back and let someone else do this for you. If you’re not a persistent self-advocate, this is not the treatment for you.
3. Pills are too much hassle.
Yes, pills are a huge hassle. It’s terribly inconvenient to take pills 3-8 times daily. Yes, it’s annoying having alarms going off all the time for meds, and yes it totally sucks having to wake up in the middle of the night for doses.
You would think the pump is more convenient with it’s preset schedule and continuous delivery, and most of the time it is. However, the pump is not something you just set and forget. You will have to use syringes to mix Solu-cortef and refill your cartriges. You will have to change out your inset at least every 3 days following strict sanitation procedures. True, that’s better than taking pills every few hours every single day of your life, but there will be times your pump maintenance doesn’t go as planned. You might get a low units alarm at night when you just want to sleep. You might find yourself with a failed infusion set when you’re out in public. While these aren’t huge problems, it will take a bit more effort to fix than just swallowing another pill. My point is, if pump therapy seems appealing to you because of the convenience- you will be disappointed. Pumping ain’t easy! It’s totally doable, just know what you’re getting into before taking the plunge!
4. You’re afraid of needles.
Pump therapy involves inserting a Cannula into your skin with a small needle. It’s nearly painless when done correctly, but if this sounds like more than you can handle, then the pump isn’t for you. You should also know that the pump is ABSOLUTELY NOT AN ALTERNATIVE TO YOUR EMERGENCY INJECTION! You cannot rely on your pump to infuse 100mgs or more at a time. This will almost assuredly cause your infusion site to fail, which could make an emergency situation even worse. Even if you could infuse all 100mgs without it leaking, subcutaneous absorbtion will be slower than intramuscular. Also, there’s a chance you won’t even have 100mgs in your cartridge to deliver. So don’t think getting a pump will mean you never need an emergency injection.
5. You don’t want to talk to your insurance company.
Even if you’re willing to pay out of pocket for a pump or buy one second hand, you are going to have to contact your insurance company at some point. While the cost of a infusion pump brand new is thousands of dollars, the monthly Solu-Cortef can be the most costly item depending on your insurance coverage. You’ll want to know your DME benefits, be familiar with your prescription plan’s formulary list, and most importantly don’t be afraid to call and ask questions! Ask ask ask! Find out exactly what they can and can’t do, find out how to have an exception made, or how to appeal a decision. Don’t expect your insurance company to get everything right and work it all out for you, but at the same time, don’t just assume they won’t help at all. You don’t know until you try!
I encourage anyone with adrenal insufficiency, suffering with poor quality of life, to look into subcutaneous hydrocortisone infusion therapy. It has really changed my life for the better, but it has been an indescribable amount of work. Even when you start on the cortisol pump, the battle isn’t over. You will have to learn strategies to manage it…by yourself. You will have to ensure you always have a steady supply of Solu-Cortef and pump supplies, even when your insurance and financial situations change. You’ll have to be prepared to deal with unexpected maintenance and mishaps, handle them the best you can, and just keep on going. It helps to be strong willed, assertive, and stubborn. You will have to be resourceful and adaptive. There are times even the strongest, most resilient pumpers I know will get frustrated and want to quit, but ultimately, all of the work is worth it. We take a deep breath, pick ourselves up and keep pumping.

Life Without Pheo? A Post Surgery Update

It’s been 2 months since my surgery. For anyone just tuning in, I have a genetic condition called MEN2a. I’ve had it my whole life, but wasn’t diagnosed until 2011. Since then I’ve had six surgeries related to MEN2a. Most of them have been to remove pheochromocytomas

This surgery was different. This time I wasn’t messing around. I went straight to the leading experts in the country, at the National Institutes of Health, so that I can maybe have these mean little tumors gone for good. I was naive in the past. After every surgery I foolishly thought I would be cancer and tumor free. I’ve come to realize over time that it’s not so easy. Unfortunately MEN2a will be a part of my life forever. The good news, both pheochromocytomas and medullary thyroid cancer tend to be slow growing tumors relative to other cancers. The bad news is that both have very few effective treatment options. The typical chemo and radiation are ineffective with these, and would do more harm than good. Really the most effective treatment is surgery. It’s traumatic, and it’s hard on the body, but as long as my tumors pop up in operable places, that’s the best case scenario.

So are my tumors finally gone? 

I’m not going to jump any conclusions like I did after past surgeries. God willing, all the pheochromocytomas are gone for the time being. That was the goal of the surgery. However, as has happened in the past, they can grow back. What I can say, is that I’m feeling very well. I haven’t had any of the painful pheochromocytoma symptoms. My heart isn’t acting crazy lately. My 8 inch abdominal incision is healing well and I’m in very little to no pain. I can’t express what a good feeling this is!

Will this be my last surgery?

Probably not. I still have medullary thyroid cancer metastases. The plan currently is to return to the National Institutes of Health for further evaluation and to come up with a treatment plan. I really don’t know how they will choose to handle this. The good news is that at this time, the MTC isn’t causing any symptoms. I can sort of trick myself into forgetting it’s there. 

I will go back to NIH in 3-6 months for more testing. In the mean time, I need to follow up with an endocrinologist locally. This is not an easy task for someone like me. I can’t see just any endocrinologist. While they are all technically “specialists” there are very few that have expertise in a condtion like MEN2a. To further comlicate things, there is literally no one else with the combination of rare conditions I have, plus using a treatment method as unheard of as the cortisol pump. I’m deep in uncharted territory here. I’ll have to settle for a doctor that is experienced with most of these conditions, and willing to learn more about the rest. Currently, I’m scheduled to see an endocrinologist at UT Southwestern. Unfortunately, they do not work with my insurance company, and my primary doctor was unwilling to help me work out a solution with them. So it looks like I will be paying out of pocket to be seen and treated here. Yikes! I have no idea how I’m going to afford it, but if God guided me here he will make a way.

💕Michelle