If you come off the fludro your kidneys will not reabsorb sodium( salt ) any longer and will retain potassium.
The lack of salt will cause you to dehydrate, perhaps be dizzy, and will cause your blood pressure to drop when you stand.
The increased potassium can cause irregularities in your heartbeat, which you may experience as fluttering or shortness of breath. Is this continues it can become very dangerous.
I am so sorry you are having a difficult time with your medications.
I have the greatest of sympathy for you, as I also have gained weight and am so tired most of the time.
Please consult your endocrinologist to assure you are on an appropriate dose of fludro cortisone as well as cortisone.
Best of luck to you and please keep us posted on your health!

Thankyou for your help camckinnon, for your reply very useful, but cause I have high blood pressure due to these tablets, was low on standing etc before diagnosed thought if i could reduce them to save taking blood pressure tabs seems like a vicious circle.....it's pants!

Have you ever had you renin levels checked? I was on a higher dose of Fludro. then I needed to be on at least for the winter, so I just decreased it just a bit. Na and K levels are all still Ok although I do crave more salt, so I just make sure to eat a lot of eat. Good luck, I know it isn't fun

Tanya

Lez,

Fludro dosing has been the biggest science experiment for me since I was diagnosed with AD. I've pretty much figured out that trial and error is the best method to find optimal dosing for me. Renin tests caused my last endo to decrease my fludro dose while I was stable. Renin is not reliable because it is very sensitive to physical activity. Long story short, my endo directed a fludro decrease because my renin was high although I felt fine. Decreasing the fludro caused me to 9 months start to show symptoms of under-medication. After that I had some issues which caused me to be over-medicated on fludro. I told the endo I was showing classic symptoms of high fludro, but he attributed the high blood pressure to my age and said my renin levels were fine. I've since left that endo. I lowered my fludro dose and the swelling went away and blood pressure came down. I'm still i adjustment mode because my blood pressure has spiked to dangerously high levels after my last two fitness tests. I'm currently on blood pressure meds, but I've been able to decrease the dose once already and my blood pressure is slowly coming down. I still maintain a pretty active lifestyle (work, graduate school, family, and exercise 3-4 days a week) so I'm watching for signs that I need to raise my dose (like salt cravings, fatigue). My experience has shown you kind of have to experiment with fludro to find what's right for you. And it can fluctuate throughout the year, i.e. you need more in the summer if you're sweating a lot. I know my adrenal cortex is non-functioning because my DHEA levels are so low they're almost undetectable. Right now I'm on .05 mg every third day and my hands and feet rarely swell, I'm not craving salt, and I'm keeping up in a 1 hour Zumba class 2-3 times a week. (Zumba is awesome!) I've also found DHEA (I take keto 7 micronized) is helpful in evening out my energy levels.

Check out the www.NADF.us "tools for life" for good info on metabolism rates of fludro and symptoms of over/under medication. And trust your instincts. You'll figure it out!

Hi,

You may want to speak with Bambee2 from this group. She uses all natural products such as licorice root for cortisol. I would think that a Dr. of Natural Medicine as a GP would be good as well in conjunction with your Endo to make these changes.

Patience, some days are harder than others, but we have great tans and don't have to shave our legs (has to be some good side to everything).

I've found that Tai Chi is amazing to reduce the body pain and it really forces you to let go of the daily stresses of life.

We are all with you.

xx

Hi Lezley!
I don't take any, at all! We're all different, but I had terrible reactions to even a small dose of fludro., to where it was very hard for me to walk. I was going down hill, and I just stopped taking it.
I do eat an awful lot of salt, though! And also, I take Cortef, which my Dr's have said, does have a little bit of the fludro. I am not suggesting you do the same, but just that there are some of us in which it doesn't seem to help, and makes us worse. My Dr's seem to be ok with this.
The only reaction I got, was to be a bit more hungry for sodium, and to feel some better. Wouldn't it be nice if everything was more clear-cut, with Adds?? =/
Take care!