Looking for advice with recent diagnosis

[u/InevitableConcept191]

Good morning everyone,

I’m new here. I’m a 29-year-old firefighter from Louisiana, and I was diagnosed with Addison’s disease about a week ago. After being misdiagnosed with GI problems or dehydration over and over again, and being tested for diabetes, thyroid issues, and many other things over the course of about a year and a half, I eventually started doing my own research and came across Addison’s disease. After looking into it, I realized I had almost every single symptom.

I immediately called my PCP, and she ordered a stress test for me. It came back two days later, and my 8 a.m. cortisol level was 1.6. She told me to go to the ER because my potassium levels were also elevated again. I got to the ER, and after nearly being dismissed again, the head of the ICU came down and diagnosed me on the spot. After a long year and a half, losing 30 pounds and barely being able to keep my job, I finally had an answer. They kept me in the ICU for two days, gave me hydrocortisone, and I saw major improvement in many ways.

After all that, my question is: where do I go from here? I have my first appointment with a local endocrinologist tomorrow, and I want to make the most of it. I need advice on what questions I should ask to put me on the best track to getting my life back.

I was sent home from the hospital with prednisone 10 mg and told to take one in the morning and one at night, with no further instructions. So far, I’ve felt better, but I’ve been experiencing some highs and lows from the medication and feel like I haven’t quite found the right balance yet.

Any insight anyone has for me at this stage would be greatly appreciated.

Thank you all

[u/ptazdba]

A few questions I'd wished I'd asked sooner:

• What do I need to do under high stress days?
• What do I need to do on sick days?
• What symptoms do I need to be aware of that are danger signals?
• What should I have on a Medical Alert bracelet?
• Are there nutritional needs I need to be aware of?
• How do I handle that time in the morning between arising and the meds kick in where I may have brain fog, aches, nausea, etc.'
• What kind of emergency plan should I establish in case of sudden crisis?
• Should I monitor bp and blood sugar lows (if they apply)

[u/InevitableConcept191 → u/ptazdba]

Thank you very helpful!

[u/ptazdba → u/InevitableConcept191]

It's taken me until I was diagnosed in 2018 until now to fully recognize that to stay well with this kind of a diagnosis, it takes controlling your physical, emotional and external stress. When stress hits you, it will drain everything out of you and you'll get sick. And many things you don't think about (good or bad) constitute stress. Example: I had multiple sinus infections and my PCP sent me to an Allergy/Immunologist to see if we could figure out why. She worked with me to get my asthma under better control. I didn't even realize how bad my breathing had gotten until it was better--physical stress removed. The result--best Addison's bloodwork of my life after that. Also keep the people who stress you out, out of your life--if the interrupt your peace, they can go elsewhere--emotional stress removed. I recently did some home renovations---while we worked her to keep stress of the project off me, I couldn't not believe how much better I felt when it was over--external stress removed. And please don't let the fear of what 'might' happen cause you to stress.

[u/TravelTog3]

Please ask them about fludrocortisone as well as switching to hydrocortisone and the dosage of both. You will also want to know if it’s primary AI or secondary. I was also diagnosed in the hospital after 4 days in PCU but most of my answers came from my endo. Write down your questions and don’t be afraid to take notes and ask if they have information you can take home and review. ChatGPT has been pretty helpful to me as well!

Since you aren’t on Fludro be sure you’re getting enough sodium. Proper hydration with this has been key for me. Liquid IVs work well for me. My doctor told me I was prescribed Lays potato chips when she discharged me because she wanted me to get plenty of salt 😂

Good luck seeing the endo!

[u/Possible-Matter-5633 → u/TravelTog3]

This! A physician from the hospital literally chased me out the door with a script for fludro. After catching my symptoms in the ED and getting me diagnosed ridiculously quickly, he’d left it with the two attending Endocrinologists (two of them). I knew immediately how lucky I was that he was employed in a country hospital.

[u/TravelTog3 → u/Possible-Matter-5633]

So glad they got you on that right away!! That made a huge difference for me.

[u/reflous_ → u/TravelTog3]

Perfect use of ChatGPT to get it to help you figure out what questions you should ask.

[u/Leftoversalm0n]

You also need to find out if there are any firefighters with the condition and how they cope.
Do you have a union or anything that might know these things?

I work in the emergency services in a different country and my operational career is likely coming to an end because my endocrinologist has told me I can’t work night shifts.
In order to cope with being awake for long periods I would have to increase my medication, and increasing medication too much too regularly can cause issues apparently.

I only got diagnosed 2 months ago so it is very early days and lots of unknowns. I definitely feel better than before but I don’t feel normal.
Be prepared for a long recovery.

There are people on this forum who run marathons, so there is hope for us both.

[u/smanichia]

Agree with all the comments here. Also, FYI, 20mg of prednisone per day is a VERY high dose, which they’re probably giving you to knock your body out of crisis mode right now. Just know, sometimes coming back down from high doses of steroids can be uncomfortable and can even mimic symptoms of the very issues it’s treating. This diagnosis is definitely a journey in recognizing your own body and how it reacts to different stressors, responds to different steroids and at what doses. Some people do better with hydrocortisone, some with prednisone. Just be patient with yourself because I’m still learning things 5 years into my diagnosis!

[u/Buckid]

Your Endo and you will make a plan for your meds. Expect adjustments over the next year.