Hello,

I too, like many who come on here, have a dilemna i’d like your feedback on. I’m a woman with SWCAH, i’m 28 yrs old, taking 0.1mg Florinef (standard dose nothing’s ever changed there since i was 11yrs old) and Decadron (0.625mg/day) now i used to take 1 1/5 tablets (0.725mg) up to 2.5 years ago. Until i began experiencing really bad heart pounding, and not being able to sleep at night, and headaches (which i never got). I kept going to the ER and they kept telling me i was fine. Anyway, they referred me to an Endo since i hadn’t seen one in 7 years. she tested, ACTH, DHEA-S, renin, AM Cortisol, Liver Panel, Electrolytes, TSH, T4, 17-OH, and Testosterone. She found my potassium to be a 3 (metric results)!!!! way too low, and my ACTH, DHEA-S was too low. She explained to me that taking too much steroids in adulthood can suppress your pituitary gland and take away the potassium your body’s trying to absorb, faster than the florinef can absorb it! so she reduced my dose from 0.725mg to 0.625mg. After about 7 adays, i felt great!!!! fabulous really!!!

I’ve now been on the new dose since March 04. 3 weeks ago i had to have my gallbladder removed. I was given 50mg of hydrocortisone every 8hrs on top of my regular florinef and decadron dosage to handle the stress of the pain, infection around the stone, etc...This lasted for about 7 days. It’s now been about 4 weeks since the surgery, my stitches are all healed, i’ve been told i should be right as rain by now, but i’m sleeping over 10 hours every night, wake up sore everywhere, my heart just beats so hard in my chest (not fast or out of rythm, just hard) that i feel it in my throat, and i can stay up till very late and can’t fall asleep very well. I still take high doses of calcium w/magnesium + vit D, i take a multivitamin, my bowels are back to normal since the surgery, etc...

I went to see my new endo (she had to leave the province last year, it was sad, she was great) is a very cold muslim (sorry but it’s true) chauvenist guy, who just tests for electrolytes, liver panel, and acth every 6 months, they always come back normal so her doesn’t want to increase back up to 0.725mg. I can’t go to another since he’s the only one in the whole province!

So now that you know the background story, i’m asking for your opinion. Have you ever encountered something similar? I think my body may have changed since my gallbladder has been removed, could happen right? Otherwise, i’m a very healthy young woman, my bones are good, my immune system is better than my drs every expected, i meditate and do reiki on myself every day, etc.... so i know the heart palpitations aren’t from anxiety or anything. Yet, yesterday, the palpitations woke me out of my sleep. I couldn’t fall back asleep, thinking about what could be wrong (without freaking out) i heard my old endo’s voice in my head the day she answered my question about heart palpitations. She told me it’s from your blood vessels getting thin from not having enough steroid in the blood to handle the tasks your body is trying to do. whenever you feel this way, take a bit more. So last night i took an extra 1/2 tablet, and within 3mins or so i was calm and the heart pounding went away like that!

hmmmmmmm, i’m starting to think i should go back to 0.725mg (1/4 tablet more) what do you think?

thank you for your help, and for reading this super long post :-D