In October of 2012 I was being seen in Norfolk for my sever anemia by a hematologist that decided he was a blood doctor so he was going to run many tests for my first visit. He called me back after three days and requested an appointment. He told me my cortisol was extremely low and that I should see an Endocrinologist. I am a teacher so this was new and I researched it, Low cortisol and what it meant. I got really scared at all the things listed and decided a trip to the endocrinologist was needed, although my time in Norfolk was ending and I was headed back to Ohio. In Ohio I scheduled an appointment with an endocrinologist for Dec 2012. He took a H&P and recommended a ACTH stim test. In January I had my test which was positive for Adrenal insufficiency. He saw me again and because I am a large woman with Gastric bypass and PCOS he wanted to do another ACTH test because before treating me with steroids for the rest of my life he wanted to be sure. He also ordered an MRI and CT scan. In March 2013 after all my tests were completed he said my levels were even worse this time and he could wait no longer and started me on 30mg of hydrocort. Then he sent me on my way with no explanation of diagnosis or anything else just come back in three months and get some labs before I come back. Confused but medicated I went home. June 2013, 20lbs heavier, labs done I went to my follow up appointment with a list of questions. He said my labs looked good and decided he was going to lower my hydrocort to 25mg daily, and he tried to leave the room. I said wait I have questions, and he looked at me like I was wasting his time and he said he would send in his nurse. She came in and looked at my list of questions and said I'll check with the doctor and get back with you. I was not sure what to think so I accepted this answer and left with another order for labs in three months and another follow up appointment. Sept. 2013 Labs drawn and still no response to my questions I looked forward to this appointment feeling like he is ready for me and I will finally get some information. He came in, said labs looked good and he was lowering my hydrocort to 20mg and he got up to leave. I looked him dead in the face and said "NO" I had questions and he had answers. He sat back down and my first question was what is wrong with me, his response was primary adrenal insufficiency. I asked "Addison's" and he said no. I asked is there anything I need to know to stay healthy and he said take your medicine, and he got up and left. The nurse came in and gave me my lab order and a new appointment for three months and I told her to get my medical records together I was getting a second opinion. Now Oct 2013 I have met my new doctor and explained to him why I came to see him and that I just needed answers. He looked at my chart and said he was not sure if I had an adrenal problem because my labs were not too bad. He ordered another ACTH stim test even though I was told once on the steroids I could never have another because steroids throw off the test results. I asked him this and hesaid they make allotments for the meds and I just have to not take them for 24hours prior. I followed his rules and did this test. When I came back for my appointment in Nov 2013 he said my results were good but he was going to keep me on steroids for a little while longer just to be sure. He lowered my dosage to 10mg daily. Since then I have had 4 ER trips due to severe hypoglycemia, as well as both my knees have went to hell and I am in Aquatic therapy. I spend most of my days in bed to sick or tired to move and still no answers. I went to my appointment in Jan 2014 and told my doctor all of this and he said maybe I do have adrenal problems and put me back up to 20mg. I have still had severe hypoglycemia and still in pain daily. I have since done more research and found all this stuff on Medic alert bracelets, addisonian crisis, injectable steroids, and much more but not one doctor, nurse or medical professional has said anything about any of this stuff to me. I am scared and not sure what to think. Every time I eat my sugar drops to 50 or lower and my doctor ordered me a new meter and told me to keep track. My last ER visit he upped my steroids to 40mg for 4 days to help stabilize my sugar but then lowered me back to the 20mg and I am still having problems. He told me he is going to put me in the hospital for a 72 hour fast with hourly glucose sticks and 6 hour cortisol checks, if I keep having problems. Now I do not want to say anything because I do not want to be a guinea pig. Can someone help please to tell me what is going on or if I need to seek another doctor, or maybe just force this one who seems nice and ready to help give me some answers? I even thought maybe I should seek out a support group which is why I am on here. Any info to help is greatly appreciated.
Posts You May Be Interested In
theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...