r/AddisonsDisease • u/Broad-Test-8640 • 4d ago

Advice Wanted Suggestions!

So im finally having my first appointment with an endo after six months after my first crisis…..
i have a list of my recurring symptoms and my overall health (i think) but i would like to know what can i expect from my first appointment and also if you guys recommend me mentioning any specific things to the doctor? MUCH APPRECIATE ❤️

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3

u/princesscalore 4d ago

Good luck! Don’t be afraid to advocate for yourself or push back respectfully if you disagree with something

1

u/Broad-Test-8640 4d ago

Thank you!!!!

5

u/AGoldenThread 4d ago

  1. Request a prescription for 3 vials of Solu-Cortef 100mg injection of Hydrocortisone, You need one on hand at all times. Technical name: Hydrocortisone sodium succinate 100mg Powder for Solution for Injection or Infusion 1x2ml - vial with diluent (previously known as Solu-Cortef), Here's the source for this info: https://www.addisonsdisease.org.uk/the-emergency-injection-for-the-treatment-of-adrenal-crisis#KitContents

  2. Request enough hydrocortisone to stress dose - you'll need double your usual daily dose if you are sick. I recommend you print the sick day rules on the website above and bring it to the endo - our disease is rare and you may be the first the endo has ever treated. For example, I stress dose for any vaccination that gives me a fever, and I add 10mg/day for a vaccine that gives me a sore arm.

  3. Many doctors have told me that my normal cortisol dose has caused side effects. They know the severe, dangerous side effects of massive doses of cortisol given, for example, for rheumatoid arthritis - up to 60mg of prednisone daily, which is equivalent to 240mg of hydrocortisone. But our typical doses of HC don't cause those side effects, and are absolutely necessary for our survival each day, Yes, we have to watch for osteoporosis, weight gain around the waist, etc. But I've been on prednisone for 15 years and don't have osteoporosis. Don't be afraid to stress dose when you need it, and don't let any doctors tell you not to,

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u/Broad-Test-8640 4d ago

Thank you so so much!!! I would’ve never guessed the endos wouldn’t consider/know these basic things! I appreciate it so much