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Addison's Disease Message Board


Addison's Disease Board Index


Jen,
I know it is no help, but there are many many people who are much younger than you with addisons. We do go through a grieving period. We grieve for the person we used to be. Once you get your meds right you will feel better. It took me about 5 years to accept the fact that I will never be the energy bunny I was before addisons & have to do less.

It is up to you to be sure you take your meds at the same times of day...every day! First thing in the morning or an hour or so before you get up, about noon & about 5pm. Dinner or no dinner. If that doesn't work for you, try something else, but be consistent.

Are you seeing an endo? He/she has to know about Florinef. Controls BP, sodium & potassium. Check your renin level. You get some of this benefit in your Cortef. Apparently not enough as you are dizzy.

Info from elsewhere......
"Fludrocortisone acetate acts on the kidney so as to conserve sodium and excrete potassium. Naturally occuring mineralocorticoids act similarly."

"Fludrocortisone (floo-droe-KOR-tis-sone) is a corticosteroid (kor-ti-koe-STE-roid) (cortisone-like medicine). It belongs to the family of medicines called steroids. Your body naturally produces similar corticosteroids, which are necessary to maintain the balance of certain minerals and water for good health. If your body does not produce enough corticosteroids, your doctor may have prescribed this medicine to help make up the difference."


What was your sodium & potassium levels when last checked?
Thanks Wanda, you hit the nail on the head, I am grieving for the person I used to be. I am not consistent in taking the meds at the same time, and that is something I am really working on. I have to take the cortef with food, and I am never hungry in the morning so that has been hard for me. I think now that I am not denying that I have Addisons I am ready to really do what I need to do to feel better. This is horrible, but I have even skipped doses just to see if I was ok. Now that I am accepting this disease, I am doing much better at taking the medication.

I am seeing an endo, I was going monthly for the past 3 or 4 months but he just stretched my next appointment out to 3 months. I know my potassium levels were high before I was diagnosed, but after taking cortef they are back within normal range. My sodium levels were low, but have always been in the normal range. I wish I knew the exact numbers, but I am thinking he doesn't have me on florinef because the numbers are ok? Everytime I have bloodwork done he has all of my electrolytes checked. I also don't think I drink enough water, so that could also make me more dizzy since I already have bp problems. I think I will start feeling better once I start really taking care of myself!! I am making a promise to myself to take the medication consistently and to drink lots of water!

Wanda, thanks for listening. I feel so much better after reading your post. I was just so active before and this is just hard to deal with. I am glad that I finally realized that I was grieving for myself, now I can deal with this disease.
Oh, and I looked into the bp cuffs and I found a really nice one that was the orion brand that I am going to get.

Thanks again!

Jen





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