10 Things My Doctor Should Have Told Me About Adrenal Insufficiency

The day you’re diagnosed with any condition, let alone something rare and chronic, is a day you’ll always remember. It’s so much information to process, and a lot can get lost along the way. Do you ever wish there was more the doctor could have told you?

When I was diagnosed with adrenal insufficiency (AI) two years ago, I knew nothing about the condition. The day I met my first endocrinologist (we’ll refer to her as “Dr. W”), I took a notebook with me, prepared to write down as much as possible. In a nutshell, Dr. W said, “Take hydrocortisone twice a day. I’ll see you every six months for labs, and you’re going to be able to live a normal life again!” The “2016 me” was beyond ecstatic, after suffering with symptoms for over eight years. The “2018 me” rolls my eyes and wonders how this doctor ever made it through medical school, let alone becoming a “specialist” in medical care.

I love knowledge. As soon as I was diagnosed, I started spending hours upon hours researching my new diagnosis. I found support groups on Facebook, members who each had their own endocrinologists and ranged from being newly diagnosed to having AI for decades. I quickly realized how much Dr. W did not tell me, and after having a couple more appointments with her, I realized I knew more about my illness than she did. As you can probably guess, I “fired” Dr. W and found Dr. C, who is very knowledgeable and has an appreciation of the fact that I probably know just as much about AI as she does.

Over the past couple of years, there have been many newly diagnosed people who have joined the support groups on Facebook and have posted questions, desperate for answers, just like I was at one point. Over time, I have become very frustrated because of the overwhelming number of newly diagnosed people whose doctors were basically telling them the same thing Dr. W told me, and nothing more. So, I figured I would compile a list of the top 10 things I wish my doctor would have told me when I was newly diagnosed. I’m not a medical professional, and before you change anything in the care of your AI, you should consult with your doctor.

1. “Taking hydrocortisone two times per day will not be enough.” Hydrocortisone stays in the body anywhere from four to six hours at a time. When I took my hydrocortisone twice a day, I would feel great for about two hours each time I took them, but felt horrible the rest of the day. Little did I know, after the hydrocortisone metabolized out of my body, I had no cortisol in my system, which is why I felt so depleted and continued getting sick. A normal body creates cortisol 24 hours a day, so it would make sense to take the medication that is supposed to replace the lost cortisol, as closely as possible to how a normal body would create it.
2. “How much hydrocortisone, as well as when you take it, matters.” In order to mimic a normal body’s output of cortisol, it’s helpful to take hydrocortisone in a way that will be as close to how the body produces cortisol as possible. I’ve found success with following the circadian rhythm dosing schedule. This means, for me, I need to take it six times a day in order to have 24-hour coverage. Is it a pain? It sure is. I have to set alarms and even wake up in the middle of the night to take my meds. Is it worth it? It absolutely is! But you have to find what schedule works for you.
3. “You will have to stress dose.” Do what? Dr. W never told me there would be times that I would need to take extra hydrocortisone. In a healthy body, anytime the body needs extra cortisol, the adrenal glands produce more instantly. This is not the case for people with adrenal insufficiency. At times when we need more, our bodies metabolize the hydrocortisone faster, and are left searching for more. How much extra to take and when to take it really depends on what is currently going on inside of my body. If I am having additional emotional stress, even if it’s “good” stress, like attending a wedding, I might have to take a small amount extra. If it’s a stomach bug or an infection, I’ll have to double the amount I take during the day. And if I’m having surgery or get into an accident, the stress dose is much higher. It’s very important to know what your symptoms of low cortisol are, and make sure you listen to your body.
4. “You will need to carry an emergency injection with you at all times.” Not only did Dr. W not tell me about emergency injections when I asked her for a prescription for one, she told me I didn’t need it. Make no mistake, not having an emergency injection on you at all times can be deadly. I didn’t realize just how important having one at all times was until I had an adrenal crisis, wasn’t breathing, and ended up “dying” three times in one night. Where was my emergency injection? Sitting at the pharmacy because I hadn’t gotten around to picking it up. I have had a few times where I’ve gone into an adrenal crisis and wasn’t breathing, and after my husband injected me with the emergency injection, I started breathing within a minute or two. Dr. C makes sure that I can have several on hand at a time, with plenty of refills. She also advised me to inject as soon as I cannot keep my oral meds down if I am vomiting.
5. “You will (most likely) gain weight.” Say it isn’t so! I have always been a very thin person. I could eat whatever I wanted and never had a weight problem. At my second appointment with Dr. W, I was horrified when I had gained 15 pounds. Dr. W told me not to worry about it because it was just the hydrocortisone getting my body metabolized, and that I shouldn’t gain anymore. Now, I look back at those 15 pounds and how horrified I was, and only wish that I could go back to that weight. I kept gaining weight and had no idea why. I rarely eat sugary foods and hadn’t changed my eating habits to support the weight gain. I saw many posts on the support groups of people who had gained weight, so I thought it was just something that happened and couldn’t be controlled. Finally, one of the admins of a Facebook wrote a post about why people gain weight on steroids. After doing some research, I decided to follow the ketogenic way of eating (though this isn’t for everyone). When I follow it, I do lose weight, but when I give into my carb cravings, I start gaining again. So, carbs and I had to break up.
6. “You’ll need to take a calcium supplement, as well as other supplements.” I have a good friend of mine whois a doctor. After I was diagnosed, he asked me how much calcium and vitamin D my doctor had me on. “None” was not the answer he expected. He told me the importance of taking these two supplements every day, because steroids can rob your bones of calcium and it can lead to osteoporosis at a very young age. Since the adrenal glands control so many of your hormones, it’s important to have your other hormones tested to see if you need to be on any other supplements. For me, I have to take a DHEA supplement every day, which has helped improve my energy. Talk to your doctor about supplements that you might need to help you feel your best.
7. “The days of going to the hospital are not over.” Not only are the days of going to the hospital not over, now that you have been diagnosed with AI, you are going to have to be very knowledgeable and become a strong advocate for yourself for when you do have to go to the hospital. I thought my hospital days were over…I was wrong. I also thought that since I finally had a diagnosis, doctors would treat me with the correct treatment plan and would finally stop treating me like my symptoms were in my head…again, I was wrong. Unfortunately, I’ve been to the hospital many times since being diagnosed. I have found there are two types of doctors: the doctors who took an eight-hour class in med school who think they know “everything” about AI, and the doctors who admit they don’t know as much as I do about it, and ask me how to appropriately treat me. You will quickly figure out which kind of doctor you’re dealing with, and you need to be prepared to deal with the first type. I have “fired” doctors in the hospital because they refused to listen to me and have actually caused me to go into an adrenal crisis, in the hospital, under their care.
8. “Be prepared for an adrenal crisis.” Some people with AI can go years without having a crisis. Other people have several a year. Knowing the symptoms of low cortisol is essential; it will save your life! Always make sure you have your hydrocortisone and your emergency injection with you at all times. Last summer, I was camping and decided to go out on our boat without any meds. I started having low cortisol symptoms, so my husband drove the boat to shore so that I could walk back to our campsite and take my hydrocortisone. However, I got lost while looking for the campsite. By the time I finally found it, I was already in crisis, and ended up spending the next two weeks in the hospital because it was so severe. Always wear a medical alert ID bracelet and make sure your loved ones know what to do when you do go into a crisis.
9. “You are not alone.” When I was first diagnosed, I felt very scared and alone. I had no idea there were thousands of people, from all over the world, just like me, who were living with this disease. Once I found the online support groups on Facebook, I felt a sense of peace. Suddenly, I could find someone to talk to or ask for advice 24 hours a day. Some of my best friends now are people I’ve met online in the support groups. Although I love my friends who do not have AI, they don’t completely understand it, so it’s nice to be able to talk to people who are living with it every day.
10. “This is your new normal.” Based on what Dr. W told me, I expected my life to go back to the way I felt prior to diagnosis and prior to having symptoms. I’m a little hard-headed, so I waited over a year before I finally came to the realization that this life was my new normal. I will always have AI. I will always have to take replacement steroids to live. I will always have to be prepared for good days and bad days. The sooner you can accept this, the happier you’ll be. Just remember, you’re stronger than you think you are. You are an Adrenal Insufficiency Warrior!