Hello everyone I am back home and have lots to tell you and then I need to try and get as caught up as I can on posts. Well they have determined a lot of things at Mayo, I am secondary, not primary, they say they can tell this from the tests I had there years ago, where my sodium was fine and things like that. So??? Anyway. Apparently the gastric bypass vitamins I have been on since 2008 you are only supposed to take for 6 months and I have been taking them all along because no one told me not to. So I had toxic levels of Vitamin E and very close to toxic levels of Vitamin A which accounts for some of my symptoms, they were slowly destroying my liver and other things. The doctors said had I not come to Mayo I would have died. They took out the J-tube, CT scan showed extreme swelling and inflammation and infection it was so bad it was partially blocking my bowels and hence all the nausea. My nausea is better, but everything I eat still causes my stomach to swell terribly. They also told me that the day I went in to the doctors office to tell them how tired I was and they put me on that liquid Dex that the pharmacy filled wrong and sent me down this awful path, that the only thing wrong with me is I was vitamin B12 deficient and they also said I am NOT malabsorbing that I am absorbing just fine. So the Endo that I loved so much had me on too high of a dose of steroid and didn't even check to see if I was malabsoring, she just assumed I was I WANT TO SCREAM RIGHT NOW. Had she done a simple blood test and checked my vitamin levels she would have seen I was fatigued because of too much of two vitamins and not enough of another vitamin, all of this could have been avoided. I definitely have Cushings Syndrome and I am on high dose of HC right now 30 in a.m. and 20 in p.m. and next Friday we are doing a cortisol level blood test (they say at Mayo it is okay to do that on the HC but does not good on the Dex), if my levels are high, they will start the tapering down process. I am very, very swollen and in a lot of pain right now, it is hard. Doctor says I am swelling more now because he feels I am absorbing the Cortisol okay so he says that is a good thing and that we should be able to start tapering. He said that once we start the tapering we will go very, very slow so as not to cause more damage and he also said that I will go through "hell" at least for a week each time we taper so not looking forward to that. They are going to continue to be my doctors and work with my family doctor to get me well. Thanks for listening to me ramble, thanks for praying for me those of you who pray and thanks for the warm comforing thoughts and encouragement you have given me. Bob I am very anxious to hear your thoughts about all of this. The rest of you I would love to hear from you as well. Love to all and I am glad to be home and back on here. If you are going through a rough time right now know my thoughts and prayers are with you. If you are doing well than I am screaming YEAH!!!! 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!
|
