Secondary adrenal insufficiency
I have been terribly sick for a little over a month. I have RA, fibro, and CAD. I am completely exhausted, badly nauseous, shaky, kind of keep a headache all day everyday, and have abdominal pain. My doctor has been checking my cortisol levels for a month since I had a Kenalog shot about a month ago. My cortisol levels and ACTH levels have been extremely low. I've had one stim test and it was abnormal. She wants to do another 30 days out from the kenalog. She started me on hydrocort and it has helped some. However I am draggy and my body feels heavy. The weirdness of all of it besides the obvious is I haven't lost weight. I haven't been eating very much, and usually don't feel like eating anything until about noon, but my weight has stayed stable. I have so many questions and there is so little information and it all seems so complicated and overwhelming. Has anyone else been diagnosed with SAI that didn't lose weight? I can't figure out what causes my hands to shake, but they shake so badly it makes my job as a nuclear medicine technologist a little difficult.
By the way this all started when I got on an elliptical for 10 minutes. My heart rate shot up and my entire chest cavity exploded with pain. That chest pain lasted for nearly two weeks and was not heart disease related. I had that checked out because of my history. I still have pains in my chest, rapid heart rate, and just an over all feeling of unwellness.
I would love to hear from anyone who has experienced similar symptoms.
Thanks for any help or advice.
Jennifer
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This site is wonderful for medical advice and genuine help. There is another site on Facebook called Secondary Adrenal Insufficiency, it’s wonderful to message others just like you.
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2 ReactionsI was dx with SAI about one year ago, but they (Dr’s) have been warning me for years to expect this, as it will get here. It did! It is very hard to get any info because most just don’t know. I received the best info on the National S A I. I found this on Facebook of all places. Go to Facebook / Secondary Adrenal Insufficiency request being a member, you will answer simple questions. And you will be notified. They are strict rules you will have to follow, but they are simple to follow. Just common sense.
Sincerely, Cecilia Schermaul
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2 ReactionsI was also told not to do any vigorous exercise, just stretching.
Do you have nutritional deficiencies?
@spice Hi no it’s not addisons because she has low acth and low cortisol. Addisons and Cushing have one of those low and one that is high
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1 Reaction@annbonari I have secondary too
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1 ReactionHi, I’m am new to this diagnosis of secondary adrenal insufficiency. I see an Endrochronogist on the 17th. My primary consulted with the endocrinologist and they started me on 5mg of prednisone for a month till my primary spoke with the endocrinologist…5 days now on tapering to 4mg. I feel awful increased pain fatigue nauseated all day light headed weak and mental fog.. anyone else experience this while tapering? Thank you!
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1 Reaction@cecilias oh great I’ll look for that. I’m new to the diagnosis and haven’t seen the Endrochronogist till the 17th
Hello Jennifer 🙏 I have had all test & been ill over a year now, Literally 2 or more . My body is not working at all. I passed out for hours & ER had to staple my head . I am not producing Cortisol or ACTH . All test are showing my adrenaline glands are working. Something is blocking them to work . My Endo is sending me to a team in KY. A University. It's a 9 hr. Drive for one appt. I am not wealthy nor able to make such appointments constantly. My question is ? Do you ? Or ? Can you sleep 22 hrs a day ? For days ? In the beginning I did NOT . But as time goes on . I'm now doing this. Even with 200 mlg x 2 a day of Modafinial? Had sleep test was fine. I honestly feel I have No help . I hate to think that way . It's not me !! Always active . Have you found Any help at all ? I'm praying for you 🙏❤️🙏
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2 ReactionsHello all... I see that this conversation ended 6 years ago. I am hoping that it will start up again here in 2026. I would like to know how individuals with central adrenal insufficiency adjust their action plans to accommodate frequent long term infections, and prevent over- replacement of the cortisol? And are there any "objective" parameters to indicate that the cortisol is taking a dive.... beyond fatigue, nausea, etc???
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