So, you have Adrenal Insufficiency and are completely steroid dependent for the rest of your life. As if that is not scary enough, NOW you have to make sure that your levels of cortisol are always under control so that you avoid an Adrenal Crisis and even worst, coma or death. Since I have unfortunately been there way too many times, I figured I would compile a list of the top 5 tips to avoid an adrenal crisis. Also, because we are all human, it is inevitable that at some point you’ll be in one, so I’ve included what to do at that point….
Top 5 Tips To Avoid An Adrenal Crisis…..
- Make sure your daily steroid intake is the correct dose for YOUR body. This may seem like a no brainer, but I see this all of the time. How much do you truly need?? Too little and you’ll have low coritsol symptoms. Too much and you’ll be over replacing. The best way to see how much your body needs is a 24 hourcortisol test. This can be a challenge, however. You really have two options. You can do a “day curve” test, which is highly recommended. Or…you can opt to take a 24 hour test on your own through urine. You then ship it off to the lab and they send you your results.
- Make sure your steroids are being delivered when your body needs them. Also seems like a no brainer. If you are on Prednisone, chances are pretty good that you are completely covered and don’t have to worry about it. However, if you are on Hydrocortisone, that is a whole new story. You have to take Hydrocortisone multiple times per day to mimic a body’s natural replication. So, how is this done? First of all, knowing your baseline is a good start. Also knowing how fast you metabolize the Hydcrortisone. Some need it every 4 hours, while other people can get away with going 6 hours. The best way to mimic the body’s “normal” is to do circadian rhythm dosing. That will assure 24 hour coverage and will give you a higher quality of life.
- Make sure your labs are up to date. When you first were diagnosed, they performed an 8am blood cortisol test. They hopefully also performed an ACTH test to show whether you are PAI or SAI. If not, you’ll want to find out. Other tests needed are a Comprehensive metabolic Panel, CBC Count, Thyroid-Stimulating Hormone or TSH, Autoaintibody Testing, Prolactin Testing. Imaging studies are also needed. You’ll want a chest radiograph done to show current evidence of TB. You’ll also want an abdominal CT scan. And an MRI done to show what is going on with your pituitary function. Another test I would recommend is a DNA test. You can order these through My Heritage or 23 And Me. This will show you what other health issues you may have.
- Stress Dose when needed. In a normal body, the body will create MORE cortisol when needed. When our bodies are under stress, whether it is good or bad, it doesn’t even know the difference, it lowers it. How do you handle this? You add more! How much will totally depend on how you are feeling. Some people need an extra 2.5mg, others need more like 20mg. It just really depends on the situation. Are you sick, do you have an infection, or are you just stressed out? Knowing your low cortisol symptoms are VITAL.
- INJECT!!!! NOW! When in doubt, ALWAYS inject 100mg of Soluctortef. If you even have to second guess this, it’s time to inject. Do you need follow-up hospital care afterwards? Not necessarily. It depends on the situation. If you can keep fluids down, you’re probably ok. However, if you have a stomach bug and are puking and have diarrhea, the best place to be is at the hospital being monitored and replenished with IV fluids.
Now, let’s talk about what to do IF you are IN an Adrenal Crisis….
First of all, breathe. You’re going to be ok! What I like to do is to ask myself “What do I need RIGHT NOW to take care of myself?” And I just keep asking myself that over and over again until I’m in the clear. Questions you may ask yourself are….
- How am I feeling? What are my symptoms? Do I need to stress dose or do I need to inject??
- How are my fluids? How about my supplements?
- I need to call 911 or can I handle this myself? Is someone home that can help me through this?
- If you need to dial 911, make sure they know you have AI, are steroid dependent and need 100mg of Soluctortef when paramedics arrive.
- What if you’re not home? You need to start carrying a “to go bag.” The bag should include things such as your medications, your emergency injection, fluids, and lots of snacks, both salty and sugary. Also, you’ll want to include a letter to the ER from your doctor with correct protocol along with emergency contact info and a list of all medications and supplements taken.
Disclaimer: This is not intended to replace medical advice given from your doctor. Please consult with them prior to adjusting any and all medications.