New Diagnosis of Adrenal Insufficiency. Anyone else?

@ladyaceintx1 I am not very familiar with adrenal glands or ailments associated with it, nor the labs you’ve recently had done or the meds you’ve been put on BUT I took a look at your profile and see that you are a nurse and caregiver for your elderly parents. I have a background in healthcare and caregiving too. I took care of my parents and in-laws too. It is a huge workload and stressful too. You know that you are no good to them if you aren’t cared for first, right?! It is like what they say in the pre-flight spiels. “Put your own oxygen mask on first ….. blah, blah, blah”. My childhood BFF is a flight attendant. She would testify that this is true! For the sake of your precious parents could you first tend to yourself? Hope so!

@cehunt57
I agree completely!
That being said, weaning myself from my daily responsibilities of providing both nursing and caregiver services to my 98 year old Father and my 85 year old mother with Alzheimer's Disease will be challenging to say the least. Yes, we do have a back up private caregiver company that we use for weekends when I'm "off" and my "vacations" and medical appointments. My parents are very dependent on me as not only their oldest child, only girl and a nurse who takes of all their needs. I'm going for the Pituitary Lab panel tomorrow and hopefully I will have a few more answers, if not, the next step will be a brain MRI. I had the conversation with my husband and adult son tonight. It's stressful in itself, as I'm sure you realize, to know that I have a life-threatening medical condition. Thank you for your support.

I was diagnosed with adrenal insufficiency in May of 2021 after a trip to the ER. I was headed for bed that night and had trouble changing my clothes. My parents saw me an at first thought I was having a stroke. They rushed me to the ER where I spent two days in ICU and three days in MCU. I was suffering from dangerously low sodium levels caused by the adrenal insufficiency. The doctor said I was having an adrenal crisis and could have died if I had waited. I have been to the ER six times since for related symptoms. I was in college and the stress was way too much. It was impossible to manage. I eventually medically withdrew. My current job is not as stressful. It took me a long time to learn how to manage my medication based on what is going on with my life. The worst times are when I have bouts of nausea and subsequent vomiting. This depletes my medicine so I have to keep taking it. At times I just let it dissolve under my tongue so I don’t lose it when I vomit. I have also injected my self on many occasions with Solu-Cortef injections.

Cortisol is an essential steroid for our body's systems including things like blood pressure and electrolyte balance. Without any cortisol, it would be fatal. It is an incredibly strong natural steroid and often compared to artificial steroids like prednisone. Any time the body is stressed-whether actual stress, illness or injury then the cortisol will normally rise to meet these new demands. With addison's disease, your body is not producing enough cortisol to even match your daily needs. And when you add any of the stressors mentioned above, the problem becomes much more severe with the body trying to draw on all the cortisol reserves that may not be there. This is among the reasons why you've been asked to reduce your stress loads but be aware that in times of illness or injury it may actually be worse. This is why you have an emergency kit and the need to alert any emergency/medical personnel about this dangerous disorder. Did you hear about the illness Amy Schumer recently announced? She has a secondary type of Addison's she acquired from getting too many steroid shots. In your case, you have a primary disorder but I thought you might be interested in hearing about a public figure that has something similar though hers will eventually go away. You absolutely don't want to find out how low your cortisol can go. Please make sure you follow all of your doctors orders and I wish you the best on this new journey.

@bryanf and @sb4ca
I now have Secondary Adrenal insufficiency caused by the 49 days of 40mg prednisone over 1 1/2 yrs ago, unless the Brain MRI this Friday shows a tumor or other abnormality. Since my last post, I was also hospitalized for severe cardiac arrhythmia (bigeminy, pvcs, pacs) dehydration and a 102 temp. I begged the ER to start iv hydration and received 3,000ml in 2 days, 6.2 lbs in body weight of fluid. After bag 2, the cardiac symptoms disappeared and by bag 3, I felt almost normal. My stress level is still high and I feel depressed and like I'm grieving for my former self. I have reached out to a grief, trauma and coping therapist and see her next week. I'm worried that my Endo, whom I do like but who seems young, may not be properly managing my condition and when I ask questions about setting up hydration therapy, he asks his colleagues and they say "it's not standard protocol" but it is MY life. I've taught my whole family how to administer Solu-cortef and wear my ID necklace and bracelet as well as carry a QR wallet card with my entire medical history and specific crisis protocol on there that anyone with a smartphone or tablet can access. Just trying to be prepared but have also been visiting funeral homes and trying to make future decisions, which gave to be made at some point anyway. Hope you both are feeling OK?
Thanks for listening.

Ok, so if this is secondary to the steroid use, have you been told your adrenal glands will recover? When steroids are used long-term, the adrenal glands start to shut down because the body is recognizing it already has (replacement by prednisone) steroids in place. Usually a person is placed on a long taper off the steroids in order to allow the adrenal glands to start working again. If the taper is not long enough or the steroid use was really high, the adrenals glands need more time to recover. It sounds like this may have happened to you which is a much better prognosis. It is more rare that the adrenal glands will stop making cortisol all together after steroid use but certainly can happen. With the hydration, too much hydration can dilute the electrolytes which often are significantly affected by low cortisol. Low electrolytes would affect your heart among other things. In your shoes, I would listen very carefully to your doctors about excessive fluid.

@sb4ca My adrenal glands are not expected to recover. The pituitary is not secreting any ACTH to the adrenal glands. As for the hydration issue, I also have Idiopathic Chronic Pancreatitis and have an issue with the intracellular level absorbing fluids orally. Therefore, I am chronically dehydrated as well. The abnormal heart arrthymia was caused by the severe dehydration which started an adrenal crisis and the fluids were needed to stabilize my condition. I was so depleted that 3 Liters was required. Afterwards, I felt amazingly better and all the cardiac symptoms disappeared.
This is why frequent hydration will be necessary for me throughout my life.
I am interested in whether i could have received less prednisone for the steroid trial to determine autoimmune pancreatitis and have wondered if I was adequately tapered, but my PCP and Endo think that it wasn't the taper that caused the adrenal insufficiency but the length of time prescribed for the trial.
Thanks for your input.