@colleenyoung you are welcome. When I struggle with this disease, I often feel alone and your response reminded me I’m not. Your support and others cheers my heart and reminds me to keep fighting for my health.
Thank you for the offer of connection to others, if possible. I have Addison’s Disease, sometimes known as adrenal insufficiency. It means that my body lacks the ability to send messages to the adrenal glands to produce cortisol and the adrenal glands also no longer produce it. Like a diabetic who must take insulin, I must take hydrocortisone (artificial cortisol) in order to live. Cortisol is responsible for regulating many body functions and the symptoms of low or nonexistent cortisol can be life threatening. In stressful times, such as infection, the body calls for more cortisol which, in me doesn’t exist. I have tablet form for everyday dosage, emergency injection form for a crisis where the body calls for more than I can take orally and have had many ICU hospitalizations for IV hydrocortisone and antibiotics for adrenal shock. There is virtually no warning of going into adrenal shock. It just happens! Since nausea is a symptom, if I can’t keep down my oral meds, I would have to be hospitalized. Symptoms daily are fatigue, low blood pressure, weakness, pain, nausea, diarrhea, etc. somewhat controlled by my medication which I adjust per a specific Mayo plan which raises and lowers dosage, depending on symptoms. There are good days and bad days as the artificial hydrocortisone can’t totally mimic how the body would secrete cortisol although the plan accounts for dosing as close as possible to how the body would secrete cortisol, called diurnal dosing.In crisis, ICU is the only choice as I go into septic and adrenal shock, my organs begin to shut down, I become delirious and drop my blood pressure, and need the medication in high doses by IV. It is life threatening at those times. My local hospital, despite having no other patients like me, has learned to treat me appropriately and rapidly. I am fortunate as good treatment doesn’t always happen. Whew! Hopefully not too much information! Sorry if it is. FYI Mayo has not mentioned genetic testing or pharmacokinetic testing. I have several other conditions which are genetic so I guess I can ask. As always, I am shy about asking but have the support of my husband, which is so helpful. I also have hypothyroidism, a genetic eye condition called corneal dystrophy (requiring surgeries to fix the corneas) and am BRCA 1 positive but have fortunately never had cancer. BRCA 1 is a gene, common among Jewish people like myself, which makes you more susceptible to breast and ovarian cancers. So far I’ve done well on watchful waiting, high intensity monitoring every three months.
I feel a bit selfish as this has been all about me. How are you? How is everyone? Thank you again for your help, both the practical info and all you have done to raise my spirits. All my best wishes, Rhoda.