My new journey into A.I. or Addison's
Hello my new fellow acquaintances in our health journey. In 2002 I had an employment physical and the NP noticed my heart was beating irregularly and slow, and my blood pressure was 86/48. She felt my thyroid and thought it was enlarged. I saw a D.O. and he started me on several hormones and tweaked them as needed. He left practice. I went to another couple of doctors. Then in 2007 I saw a very intelligent Internist. My first visit he said you look like Sheehan's syndrome. He started me on a regimen of hormone replacement from the anterior pituitary: Low dose topical progesterone, Dhea, testosterone, very low hydrocortisone topical, sublingual Tri-Est, Growth Hormone injections, Wellbutrin, I was on compounded T-3 thyroid and eventually changed me to synthroid. I was perking along pretty well. Then my insurance started pushing back on the GH. I did cortisol stim test off all my meds for 6 wks. The test at the first hour fell in the normal range (just barely) and the test at the second slowed off-didn't raise like it is supposed to. He say they only look at the first one, and he thought we got me through menopause so we would stop the GH in December 2011. I started feeling worse every month. I had always seen my doctor and had labs drawn every 3 months. Each month I thought I would level off. Then he told me I have pernicious anemia so I started B-12 shots. Then I developed GI symptoms during this time and found out my reflux was so bad I had Barrett's esophagus. I also have gastroparesis (slow gut). I have never had a normal libido, especially since my youngest son was born in 1987, but now I'm a flat line. In October 2012 I felt so bad and so tired I could hardly get off the couch. This went on for almost 2 weeks. Then I check my blood pressure and it was 76/38. No wonder...I drank fluids to make sure I was hydrated. My doctor's office wouldn't get me in for almost 2 weeks. My pressure never got out of the 80's. My doctor said my adrenals finally gave out. He started me on fludrocortisone (Florinef). I was a little worried because I've never had a "regular normal" blood pressure or high. The florinef brought me up to around 120/76. Then I began to wonder why this had happened.
I went to see an endocrinologist in hope that she would put everything together and treat what needs treated, and not what don't. She then took me off all my hormones except Synthroid. she had some labs drawn and found that I have a quite elevated prolactin level, which they attribute to my gastroparesis medication. That was in January 2013. I feel that I have lost a lot ground. I fatigue easily, I'm irritable. My memory is horrible, really. My get up and go is gone. After I finally get up in the morning, I sit on the couch for an hour plus to prepare to get ready for work. Yes, I drink caffeine and have for years. Anything physical or mental or even emotional can suck me right down. I constantly have a dry mouth and have craved and ate salt for years.
Then I began research on adrenal insufficiency for a class that I am in right now. (Thus, how I found you). Nobody has ever tested me for auto immune problems, other than celiac which was negative. But many of the signs of Addison's I have. I've been busy lately and my blood pressure dropped some down to the high 90's to 110 or so. I'm actually a bit concerned because I have to cover another nurse's assignments plus my own all week next week, and we have to move homes in august, and I finish my class next week. I'm kind of concerned I may crash. The endo I saw said I didn't have adrenal fatigue and there was no concern for me to have extra steroids or wear a bracelet. She said the florinef doesn't hurt me and my blood pressure isn't high. She said it was o.k. to stay on it since some people "feel better" when there pressure is a little higher. But, the more that I've read, the more I think I need to go to an endo center that has someone that specializes and recognizes adrenal and pituitary problems. She said my MRI of pituitary did show some small tumors or infarcts in it, but that was pretty normal. My MRI of my head has shown some demylination but it has not increased over the years, nor is it in the area for M.S. It's just another mystery.
Sorry to ramble on...In my state there is not a large Endo-Pit center. My hospital only runs aldosterone tests on Wednesdays. that surprised me. Has anyone found that by going to the big well known centers made a difference in getting the right diagnosis and treatment? I was looking at U.S. News and Reports for best rated Endocrinology Hospitals. I thought I'd pick one that does the adrenal, pituitary, and sexual/gonad dysfunction. I feel that I'm missing out on some of life. I'm 54 but I don't think I should feel like this. I feel like everything is going down hill and I'm falling apart at this age. My mom just turned 80 and is better and more active than I am. The worse I feel kind of pushes me toward depression. I'm mentally fighting that, I'm already on Wellbutrin for the norepinepherine effect. I'm open to suggestions..I'm not afraid to travel to a good center to get the proper guidance. Thank you all for any input you provide!!
I went to see an endocrinologist in hope that she would put everything together and treat what needs treated, and not what don't. She then took me off all my hormones except Synthroid. she had some labs drawn and found that I have a quite elevated prolactin level, which they attribute to my gastroparesis medication. That was in January 2013. I feel that I have lost a lot ground. I fatigue easily, I'm irritable. My memory is horrible, really. My get up and go is gone. After I finally get up in the morning, I sit on the couch for an hour plus to prepare to get ready for work. Yes, I drink caffeine and have for years. Anything physical or mental or even emotional can suck me right down. I constantly have a dry mouth and have craved and ate salt for years.
Then I began research on adrenal insufficiency for a class that I am in right now. (Thus, how I found you). Nobody has ever tested me for auto immune problems, other than celiac which was negative. But many of the signs of Addison's I have. I've been busy lately and my blood pressure dropped some down to the high 90's to 110 or so. I'm actually a bit concerned because I have to cover another nurse's assignments plus my own all week next week, and we have to move homes in august, and I finish my class next week. I'm kind of concerned I may crash. The endo I saw said I didn't have adrenal fatigue and there was no concern for me to have extra steroids or wear a bracelet. She said the florinef doesn't hurt me and my blood pressure isn't high. She said it was o.k. to stay on it since some people "feel better" when there pressure is a little higher. But, the more that I've read, the more I think I need to go to an endo center that has someone that specializes and recognizes adrenal and pituitary problems. She said my MRI of pituitary did show some small tumors or infarcts in it, but that was pretty normal. My MRI of my head has shown some demylination but it has not increased over the years, nor is it in the area for M.S. It's just another mystery.
Sorry to ramble on...In my state there is not a large Endo-Pit center. My hospital only runs aldosterone tests on Wednesdays. that surprised me. Has anyone found that by going to the big well known centers made a difference in getting the right diagnosis and treatment? I was looking at U.S. News and Reports for best rated Endocrinology Hospitals. I thought I'd pick one that does the adrenal, pituitary, and sexual/gonad dysfunction. I feel that I'm missing out on some of life. I'm 54 but I don't think I should feel like this. I feel like everything is going down hill and I'm falling apart at this age. My mom just turned 80 and is better and more active than I am. The worse I feel kind of pushes me toward depression. I'm mentally fighting that, I'm already on Wellbutrin for the norepinepherine effect. I'm open to suggestions..I'm not afraid to travel to a good center to get the proper guidance. Thank you all for any input you provide!!
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