First of all, let me tell you I lost a a rather long blog post the other day. Poof, it disappeared. I'm not at all sure what happened. I did not have the energy or the will to rewrite it. Bits and pieces may resurface in my brain, and appear here. Or not. Who knows?
It's time to do an update though.
The switch from generic (the brand was Qualitest) to Cortef was a good move. My digestive problems disappeared. I actually started getting a bit hungry from time to time, and I no longer felt sorry after I ate a bit. Thumbs up for Cortef!
I was still very very tired, and fellow adrenal insufficiency patients (hooray for online support groups!) said my dosage was pretty low. I had an appointment with my internist this week, and after listening to how I was doing, he agreed it wasn't enough for me and upped my dosage to 30 mg. It has made a huge difference.
Do I feel "normal?" No. I still am at the edge of exhausted pretty much all day. I still feel the need to go back to bed for awhile after I've been up a few hours, and I need to rest often.
But, I have been able to get through even my longer work days, which are not long hours-wise but require a lot of focus and a fair amount of mental energy, feeling only a little more tired than I should. A bit of rest and I'm somewhat recovered.
I forgot to mention that adrenal insufficiency was confirmed by the AM cortisol test. I'm still producing some, but not enough. The next step is to see the endocrinologist and see what further testing he wants to do. An ACTH stim test is bound to be on the list, to see if my adrenals can respond to stimulation. I'm going to ask for an antibody test as well, since I have a few other autoimmune issues already and most cases of primary adrenal insufficiency are autoimmune in the U.S. and other developed countries. I'm bound to be primary due to the hyperpigmentation.
In discussing stress dosing with my internist, he explained to me that under normal circumstances healthy people produce about 20-25 mg. of cortisol per day. But under severe stress, healthy bodies can easily put out ten times that amount.
This made me realize that it is not a big deal if I need to take an extra 5 mg. for a few days due to a cold, or an extra 10 mg. for a mild fever. Or even a double or triple dose for a fever over 99.5°F., vomiting, or diahhrea. These doses can help me avoid a trip to ER and I need to be prepared to take them when I need them.
A common cause of adrenal crisis, which is very serious and can be deadly, is not taking enough of a stress dose early enough. I hope to avoid that mistake if at all possible.
Due to the fact the my mind gets very slow when I'm low on cortisol, I have the stress dosing guidelines saved as a document on my iPad as well as printed out. I do not want to have to remember where I found those guidelines when I'm ill or heading into a crisis.
I have also printed and laminated my diagnosis, emergency protocols, and my doctor's contact information on a sheet kept where my husband and son can easily find them. They've got instructions to just hand it to the EMTs if we ever have to call an ambulance. This is such a rare condition, most doctors never see a single case, and emergency room personnel will most likely not know what to do.
My medical ID bracelet is on its way. I don't yet have a two month supply of Cortef on hand, which is a recommendation I have read, and I don't yet have an injection kit. I'll be asking for that when I meet my endocrinologist in a couple weeks.
So overall, things are definitely improving around here. I might be able to do a few light chores today since I don't have to spend any energy on my job today. Even being able to do a few loads of laundry is a huge improvement in my life. Being as ill as I was gives a different perspective on those pesky little maintenance chores. Now I'm thankful for a day with enough energy to do a few of them!
- Posted using BlogPress from my iPad