Addison's Diagnoses

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I am not sure how to condense all of this. After a neck surgery two years ago, my health took a serious decline. I have been diagnosed with mild heart failure and seronegative rheumatoid arthritis. A few months ago, after having shingles, my BP started staying very low. The lowest was 52/28, I routinely have readings like 70/44. Cardiologist did a morning cortisol and the results were 122. Although that was slightly out of range, cardiologist dismissed it. Family doctor referred to endo. Endo scheduled 24 hour urine test and the stimulation test. Right before the test were supposed to happen, insurance changed. Now, I am still trying to get them scheduled. So, my first question is, was anyone diagnosed with Addison's with numbers similar to mine? Or are those "close enough" to normal? Also, in the last couple of weeks, I have started to experience fatigue like I have never had before. I cannot stay awake, but not do I really sleep. I spend most of the day in a fog. I also have what I presume is a rheumatoid flare happening as every joint in my body aches and I am extremely stiff. Treatment for RA was put on hold to see what endocrinologist found and because of same insurance problem. I have also lost 28 pounds in the last few months (unintentionally). As I wait for the test, how do I know if something becomes an emergency? I have never felt like this before with unbelievable fatigue, blurry vision, depression, and constant pain. Any input is appreciated, and since I don't know when I will have the other testing, would some of you please share your morning cortisol levels. Just FYI, mine was done at about 8:20 am. I was also taking estrogen and no one told me to stop. I have heard that can falsely elevate the number? Thanks so much.

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4 Replies

  • Posted

    I saw cardiologist today and he stated that he thinks adrenal insufficiency could explain many of my symptoms. The morning cortisol level was 4.4, and he said they would normally expect it to be well above 10. My BP is still extremely low. I see the endocrinologist in another week. I would still like to know more about others numbers when they were diagnosed.
    • Posted

      When I had an ACTH stimulations test, my morning cortisol was 2.4, the bottom of the range was 5.  My ACTH was really close to the bottom of the range, can't remember the numbers.  They wanted me to get to 20 or above after 60 minutes.....I only got to 11.3-----Secondary Adrenal insuficiency.  I had also lost a bunch of weight.

    • Posted

      Christine, I too have Secondary Adrenal insufficiency. Was wondering what meds they have you on and dosage? I am struggling with 5 mg of Prendisone. Was on hyrocortisone but gave me terrible heartburn 24 hrs a day. Thanks, Janelle
    • Posted

      They started me on hydrocortisone 20 mg as well, and I had terrible stomach pain. Switched to 7.5 mg of prednisone. Stomach pain went away, but host of other side effects.

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