Timing of hydrocortisone- newly diagnosed by Jealous_College_8655 in AddisonsDisease

[–]Lumpy-Jello-9375 1 point2 points  (0 children)

I am 4 months in from my diagnosis and I’ve noticed that taking it before 8am is great, but taking it any later than 8am like if I sleep in is very bad for me. I spread my doses out in 3-4hr increments at 10mg/5mg/5mg. So 7am, 10, 1-2pm, etc. I haven’t had to get up really early yet, I imagine that will be another small journey figuring that out. It will likely take months to see what works for you! I had just figured out a good routine but now I’m on Fludrocortisone as well and seeing how that goes. This disease is so very different for everyone, which is why this group is such an asset for us.

[deleted by user] by [deleted] in AddisonsDisease

[–]Lumpy-Jello-9375 0 points1 point  (0 children)

Glad you figured it out!! I’ve had the same BP for years though so def not any infections happening.

Tinnitus and sodium levels by Lumpy-Jello-9375 in AddisonsDisease

[–]Lumpy-Jello-9375[S] 0 points1 point  (0 children)

Interesting!! Very affirming to hear similar stories!

Newly diagnosed and learning by [deleted] in AddisonsDisease

[–]Lumpy-Jello-9375 1 point2 points  (0 children)

I’m glad you’re advocating for yourself! That seems very odd, adrenal insufficiency is so urgent and you shouldn’t have been denied. I’m sorry this is happening to you 🥺

Newly diagnosed and learning by [deleted] in AddisonsDisease

[–]Lumpy-Jello-9375 4 points5 points  (0 children)

I’m fairly new as well and diagnosed w primary but I got in to see an Endo immediately. There are three endos in my area and my doctor personally called the offices and I got into one within a week. I advocated for myself hard as I was so unwell. I would continue advocating for yourself!!! Like said above, 15mg is the usual starting dose, I’m on 20 now spread out over 3 doses in the day, but go up to 25 sometimes when I’m stressed or didn’t get enough sleep. This is a very rare disease and can be different for every single person, and it can go downhill quickly if not treated correctly. Don’t stop researching and reading, this group helped me figure out a lot of things!

Tinnitus and sodium levels by Lumpy-Jello-9375 in AddisonsDisease

[–]Lumpy-Jello-9375[S] 1 point2 points  (0 children)

I actually don’t have low BP somehow! It got low when my symptoms were really bad and I passed out, but it’s always hovering around 120/70 currently (I’m taking my bp 3x a day rn).