Adrenal Insufficiency is a Very Serious Condition
When taking steroids for PMR, Adrenal Insufficiency (AI) can happen when you are typically on 5-6 mg of steroids. If you have trouble tapering below this amount, you might experience AI symptoms.
Some symptoms of Adrenal Insufficiency are:
- Low blood pressure
Steroids can cause AI due to the medication suppressing our adrenal gland function. For those of us with PMR taking steroids, our type of AI is called Secondary Adrenal Insufficiency (SAI).
There is another type of AI called Primary Adrenal Insufficiency (Addison's Disease) which has all of the same related issues but a different cause. Those with SAI are lucky because we may be able to "wake up" our Adrenal glands eventually and possibly be rid of this terrible diagnosis (compared to those with Primary Adrenal Insufficiency).
If you suspect that you may have adrenal insufficiency, please ask your physician to test your blood cortisol ASAP to see if your adrenal glands are working and secreting enough Cortisol to maintain your functioning.
For those diagnosed with Adrenal Insufficiency (this is different from Adrenal Fatigue), I want to make sure that you are well educated on the seriousness and dangers of this condition.
You need to be prepared with knowledge, self-awareness and have an emergency plan (and meds) to handle what this condition may throw at you.
This is a terrible disease because once you become knowledgeable about the condition, you may find this to be a SCARY diagnosis that can lead to life-threatening emergencies.
It is NOT a disease to take lightly, so make sure that your doctor educates you well about all aspects of SAI.
Also, do your own research on the topic. Then share what you learn in writing and verbally with friends and family.
It may save your life someday. It did mine!
I found these 2 resources to be beneficial. I keep a copy at home, in my purse, and the car. Also, be aware that emergency medical personnel may not be familiar with AI and adrenal crisis (where seconds count). Hand them this information to prevent confusion and improper care.
I want to share my story about AI.
After a year of gradually tapering off my Prednisone for PMR, I was "stuck" at 5 mg. I would get below 5 mg only to have to bump it back up again due to increasing muscle aches and stiffness. Even though I strictly follow a Paleo diet, I could not break this barrier. This went on for 6 months.
Eventually, I asked my Rheumatologist and Endocrinologist (who I treat with for Hashimoto's) about testing me for Adrenal Insufficiency. I had 2 cortisol blood tests, which showed that my cortisol levels were well below normal.
At my endo video appointment, she briefly stated matter-of-factly that I have low cortisol and then went on to discuss other issues such as my thyroid and osteoporosis. That was it for the appointment and discussion regarding my low cortisol.
I'm a nurse but was left a bit confused and with an uneasy feeling as our discussion began to sink in after we closed out our visit. Did she mean that I have adrenal insufficiency? She never actually came out and said it but isn't that what low cortisol is? I was not overly familiar with AI but knew it was a very serious condition.
I dove into research about AI and began to get scared! People die from an adrenal crisis, and my endo never even mentioned any emergency protocol and life-saving emergency medications that I found in my reading.
The next day I received an e-mail from my endo once again asking me about treatment for my osteoporosis (also caused by Prednisone). I was mad at this point by her vague dismissal of a potentially life-threatening diagnosis of Adrenal Insufficiency.
I emailed back stating that I felt that I had bigger worries at this moment than my bones. I asked her if I had a diagnosis of adrenal insufficiency. Were there any emergency protocols that I should be aware of? I sent her the 2 resources that I listed above in this article. I went on to say that I needed an appointment with her ASAP to discuss all of this further.
To her benefit, she got right back to me and confirmed that I do have Adrenal Insufficiency and should be following the emergency protocols and information from the resources I sent her. She must have realized that I was upset (and perhaps her negligence) as she scheduled an appointment for me that week.
To make a long story short, she switched my meds from Prednisone to Hydrocortisone (HC) and prescribed an emergency Dexamethasone injection in case I went into an adrenal crisis. The HC is the treatment of choice for AI. I was relieved to have an emergency injection prescribed.
She told me to updose my steroids with illness, prior to surgical procedures, and when under excessive physical or emotional stress.
The HC left me quite stiff as it is not as powerful of an anti-inflammatory as Prednisone, but I figured that I would deal with it. I had a new serious condition to come to grips with, and I wanted to do what I could to possibly help my adrenal glands wake up.
I filled my prescription for my emergency steroid injection and showed my husband how to inject it. I figured that I would never need it as it was unlikely that I would ever go into an adrenal crisis....
Fast forward 2 months. My daughter and grandkids were convalescing at their home with a stomach virus. I helped throughout the week, bringing them food and making lunches. I was not at their house for long each day, but I must have picked up this extremely infectious bug.
I woke up a day later needing to use the lav urgently. I was very lightheaded and had to get back to bed to lie down quickly.
I must have passed out because I awoke on the floor with my head wedged between the bed and bedside table. I got into bed and texted my husband to give him the heads up that I was not feeling well.
He later told me that the text did not make any sense...
I was feeling somewhat better but worried about how I would feel when I stood up again. I had not taken my morning steroids yet, and I knew I needed them badly. Still not thinking clearly but wondering why I had not heard back from my husband (who has a very busy job), I e-mailed him an empty email with the single-word title of "TEXT".
I look back now and wonder why I hadn't just called him. I am sure that I was not totally with the program which is common for someone in an adrenal crisis.
Fortunately, he did see the email and called me back quickly. He came home and was with me when I tried to stand the 2nd time.
Thank God he was there as I instantly became lightheaded and fainted dead away before I even realized it. I awoke on the floor with a dent and a big lump on the back of my head from hitting the dresser. I also somehow took our sliding bathroom barn door with me when I fell and was tangled in the door on the floor I couldn't understand why my husband was messing with the door and not helping me on the floor. Apparently, he had to get through the collapsed door to get to me.
I weakly said that I thought that I needed my emergency injection.
He found the shot in my purse, and I talked him through the procedure of prepping and administering the medication. He had never given an injection before but remained calm and did a super job with it! He's my hero!
I lay on the floor for about 10 minutes and began to feel much better. I was able to get back to bed and call my endo. I asked her what the plan was once I had the emergency injection. She said as long as I was feeling OK afterward, I could stay at home and triple my steroid for the next few days.
For the rest of the day, I drank electrolyte drinks and hot beef bullion to help to increase my very low blood pressure. By evening I was able to leave my bed. But I felt "funky" for about a week. I was very shaky and lightheaded each morning until my HC kicked in. Also, I suffered from blurred vision due to the high dose of steroids (or maybe it was the bump on the head).
I worried that I might die in my sleep in the early mornings when my cortisol was at its lowest, but here I am!
My extended family was a little shaken and now want to practice giving injections on an orange in case they are the ones that have to "save the day" for me. Bless them for their caring!
I learned an important lesson that day. I need to keep my emergency meds close at hand. I was upstairs when my crisis hit, and my steroids and emergency injection were downstairs. I am so thankful that my husband was there for me, as I would never have been able to make it downstairs to where I kept my medication. Things may have turned out differently if he was not around.
I am on an adrenal support Facebook page where we get frequent reports of fellow AI folks who pass on suddenly. Even though I may not have anticipated that my crisis would have hit so quickly, I know now how important it is to be overly prepared in case a crisis hits me again.
It is scary, and I pray that I eventually can shed this terrible diagnosis, but in the meantime, I want to spread the word that preparation is essential for AI sufferers.