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teri72193 Posts: 1264
Senior Member
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Saw my Endo yesterday, the one who saved my life. She is changing my medications. Since I have so much trouble absorbing, she is putting me back on Decadron and it is a liquid. She is starting me out at I think 1 mg and then eventually she said .75 is the "normal" for people who do not have any absorption issues. My thyroid is low and she increased my Synthroid to .88 from .75 or 88 to 75 whichever that is and she added I think it is Aldactone, which gets rid of water but not potassium, will let you know how that goes. I asked her why we don't have good data about Addison's and she was very honest and said "Teri there isn't a doctor alive who can get good data on how our body uses cortisol throughout the day, every day is different, every body is different in how it reacts to different stressors." I thought that was very honest of her. Not comforting, but honest. They increased my Vitamin D to 50,000 units 3 x week as I am still low on that. I have to have a bone scan because she said we all should have them once a year because we WILL get osteoporosis, there is no help for it because the steroids suck the calciums from our bones, isn't that nice? So that was my day, anxious to hear back from all of you. Hope you are well. I will be glad to see if this new way of taking Decadron will help keep me out of the fatigue holes. Diagnosed with primary Addisons at age 46 almost died before it was diagnosed. Then told by Mayo Doctors in 2011 that I have secondary. Take HC 30.0 a.m. and 10 mg at noon and 10 mg at 4 p.m. 100 mcg Synthroid. Stress dose with Hydrocortisone for emergencies and carry a Solu-Cortef injection for emergencies. Also take 50,000 Units Vitamin D 3x wk and potassium 15 ml once per day. On pain meds Fentanyl patch 50 mcg and Hycrodone APAP 15 mL every four hours. I love this site and am so grateful for all of you!
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