Recently, someone came to me and told me they were diagnosed with primary adrenal insufficiency but sent home to wait for the results of more blood work.
THIS IS BULLSHIT!
Symptoms, low sodium, high potassium, a random cortisol draw of less than 1 (it was not 8 am but it was NOT midnight either) and hyperpigmentation.
The proper protocol would have been to draw blood and test all basic adrenal hormones (give an ACTH stim test immediately if available) give a bolus of Solu-Cortef, send the person home with a prescription for hydrocortisone to be taken in divided doses and a somewhat high dose for the first week or so, a prescription for Solu-Cortef and Zofran and the NADF emergency protocol.
I'm actually laughing while I write this. Doctors have NO CLUE. They will send any other person home on massive doses of steroids for almost no reason but not send someone who might DIE or become BRAIN DAMAGED from low blood sugar due to lack of cortisol home with nothing. Undiagnosed people can also have a HEART ATTACK from the classic symptom of low sodium and high potassium. On two occasions over the last year, my husband (who does not have AI) was sent home with as much steroid as I would take in a month "as an experiment" "let's see if things improve". He couldn't sleep and felt worse. Experiment over. In someone who is symptomatic for AI and has test results to indicate AI is a possibility, a week of steroids will NOT HURT. If nothing else, the trial will alleviate the symptoms, keep the person alive and the experiment will have been a success.
Is there any disease that presents with low cortisol, hyperpigmentation, low sodium/high potassium and weight loss that's helped by physiological doses of steroids? I think not.
A doctor who does not send a person home with the following is comitting malpractice:
- A bolus shot of Solu-Cortef
- A prescription of HC and instructions on how to take it
- Emergency instructions from the NADF
- Prescription for Solu-Cortef and Zofran and instructions on how to use it
- A follow up appointment three days later to go over blood work
How can I/we get this life saving information out to doctors? Most never have a patient with AI. Why should they learn anything? Thinking along those same lines, why would they not reach out to a physican who can help the patient quickly and better?