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Secondary adrenal insufficiency

Posted by jentucker @jentucker, Feb 28, 2018

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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cecilias | @cecilias | May 17, 2020

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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cecilias | @cecilias | Jun 5, 2020
In reply to @jentucker "My heart rate went up, of course, because I was exercising. I felt slightly light headed..." + (show)
@jentucker

My heart rate went up, of course, because I was exercising. I felt slightly light headed but that tends to happen when I exercise and my heart was pounding really hard. The most unusual thing was the pain throughout my chest cavity and back. Basically it’s all been down hill since then. I have such a complicated medical history with auto immune disease and CAD that sometimes it is very hard to tell where my pain comes from. But I don’t remember anything more about getting on the elliptical. I just haven’t really recovered since then. Thank you so much for the contacts.
Jennifer

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I 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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cecilias | @cecilias | Jun 5, 2020

I was also told not to do any vigorous exercise, just stretching.

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507 | @507 | May 14, 2022
In reply to @rckj "@lisalucier Hi to everyone. I wrote to you. Lisa, because I didn't know how to address..." + (show)
@rckj

@lisalucier Hi to everyone. I wrote to you. Lisa, because I didn't know how to address a general "to all" post. I have secondary adrenal insufficiency and was seen at Mayo in Rochester in the fall of 2017 after 10 years of illness without much good treatment. I live in a major east coast city so you think it would be better but it wasn't until I had a Mayo action plan. I'm doing better now but it is a long road back to a more everyday life. I'm trying to learn to live with this illness. I easily go into adrenal and septic shock with infection, usually pneumonia. I often land in the ICU, in critical condition with multiple symptoms, including delirium. It is often life-threatening and I get really scared. I have a good support system and a wonderful husband. The closest hospital has learned how to treat these crises aggressively and I am grateful to them for my life and improving health. I am concerned about the repeated pneumonias which then cause adrenal shock. I have had low IGG and IGG1 levels but the medical debate goes on whether this needs treatment with IVIG. I'm not sure if I should ask Mayo endocrinology about this. They have been tremendously helpful with the action plan and coordinating with my local treaters but I'm not sure whose area of medicine this issue falls into for a plan. It's always hard to write when I often feel so weak and I have always had a hard time asking for help. Does anyone have similar problems or advice for a solution? Thank you so much for listening. Rhoda

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Do you have nutritional deficiencies?

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