Hi, My mother has Addison's. I've posted a few questions in the headache forum because my son has chronic daily migraines. My question is about my mother. She has been on hydrocortisone for almost 3 months after a positive ACTH stim test. She is taking all she can tolerated because of her stomach problems and any more makes the stomach ramping worse. She is not gaining any weight and is still at 85 pounds after loosing 40 pounds over the course of the year. They did thyroid tests and they are neg. She had a pituatary MRI and it was neg. Her blood pressure is very low and still she was not put on Flornif because her electroytes were normal but she does not eat anything at all with potassium in it. Am I wrong in thinking her potassium would not be elavated if she were not eating potassium. She is very tired and doesn't get out of bed very long at time. She also has very painful back muscle spasms. The fatigue is about a 9 or 10. Shouldn't she be put on Florinef if she has Addison's. To my knowledge she has not had her Aldesterone tested.

Hi Pam,
I'm new to this site, but a 10 year Addison's patient since my early 20s. Sorry to hear about your Mom's troubles. A few thoughts: If she needs more corticosteroids but cannot tolerate them by mouth, maybe her doctor could prescribe injectibles? I had horrible nausea/vomiting/dehydration during my pregnancy a few years ago and used injections to get through the first trimester. Regarding Florinef, it's not given to all AD patients, usually just the ones who don't achieve sodium/potassium balance and normalized blood pressure/heart rate with the cortisone alone. Muscle spasm is a very common symptom of electrolyte imbalance for everyone, not just Addison's patients. She should be careful of high potassium foods, but her potassium could still be out of balance regardless of diet. The AD patient's kidneys waste salt, lower sodium allows potassium to elevate, high potassium causes all kinds of problems. The Florinef helps reverse this process- the kidneys retain more sodium ions to balance the potassium ions. How much sodium does she take in her normal diet? Does she crave salt? Does she feel any better after a high-sodium meal? Has the doctor told her to watch these things in her diet? Does he know about the muscle spasms? I know, so many questions! Good luck to your Mom, I'll keep her in my thoughts.

Florinef is often prescribed but not always... if sodium and potassium are always normal and her heart rate are fine, then she is technically fine without it but my docs test renin, potassium and sodium to make sure.

Potassium is in a lot of veggies - even potatoes so she may be getting it without you thinking she is. I drink V8 to get sodium and potassium when i feel funky.

She is rare not to gain weight on replacement steroids so they really should be looking at why. How does she take them and when - what dose?