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jentucker
@jentucker

Posts: 2
Joined: Feb 28, 2018

secondary adrenal insufficiency

Posted by @jentucker, Wed, Feb 28 11:42am

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

REPLY

Welcome @jentucker and I can only imagine the fear you felt when this started and likely still do. The following members; @joj85 and @wesbig have mentioned secondary adrenal insufficiency and may have some experiences that will be helpful. I have tumors on both of my adrenal glands, but they are non-functioning, so I can not offer anything in the way of personal experience. Did anything else atypical coincide with when you got on the elliptical?

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

@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 understand not being able to pinpoint where it hurts. My pancreatic pain can be anywhere from my sternum to my hips, front and back, but I think that is just because there is so much scar tissue from surgeries and there are other problems caused by the P issues. I pray you can find a doctor(s) who can hone in on where your problem originates. As the old saw goes "the devil known is better than the unknown" and I have never believed that ignorance is bliss, unless you don't know what you don't know, then maybe it applies. Take care, Gary

Hi Jen you are starting to feel the beginnings of addisons I have been on prednisone for four years at 8 times the required amount I cant taper to the appropriate levels. When you are low on cortisol it is the top of the pyramid it controls your acth which regulates potassium it also regulates adrenaline which could be part of your shaking, when doing things for long periods of time your muscle groups become stressed and you have no stamina to maintain the activity you simply just have to sit and wait to recover most employers don't appreciate that unfortunately. I have now been through four docs and none have done some of the things you have had done. What I can say is the longer you stay on a steroid the less likely your body will return to producing the proper amounts of cortisol on its own. I wish I had better answers for you to find a solution but from all my experiences and research the adrenal system is complex and hard to diagnose. Most of the time the treatments seem to be very set and it ends up trying to fit a square peg to round hole. Learn to pace yourself some how, continuing to exercise somehow helps greatly the cordisone is probably preventing any weight loss.

Liked by jentucker

Hi, @jentucker — I was looking over what you wrote here and wondering how you've been feeling the last couple weeks?

@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

Hello, @rckj — I am so glad to hear that Mayo Clinic helped you formulate an action plan for your secondary adrenal insufficiency. I congratulate you for your efforts to try and live with this illness and get back to a more everyday life. Indeed frightening to easily go into adrenal and septic shock with infection and land in the ICU. Totally understandable that you get really scared — that is pretty dramatic.

So happy to hear you have a wonderful husband and support system. That is so key. Also glad to hear your local hospital has learned to aggressively treat your crises.

About your low IGG and IGG1 levels and potential treatment: It would be just fine to portal message or call Mayo endocrinology about that today or at any point you'd like. If they feel it falls outside their area of medicine, they can advise and point you in the right direction.

About addressing all members in a particular discussion: If you just write your post as a reply in this or any discussion on Connect, all members who have posted in it before will be notified in the manner they have elected (e.g., email). You can say something like "Hi, all …" if you like, in your posts to the group.

It would be interesting to know if @gman007 @retha @mlbaier @spice @jentucker @marciron @pagray24 @joj85 and @wesbig are familiar with the type of crises you are experiencing and might offer any solutions.

Would you have any suggestions for what has helped you on your road back to everyday life while living with this illness, Rhoda?

@lisalucier

Hello, @rckj — I am so glad to hear that Mayo Clinic helped you formulate an action plan for your secondary adrenal insufficiency. I congratulate you for your efforts to try and live with this illness and get back to a more everyday life. Indeed frightening to easily go into adrenal and septic shock with infection and land in the ICU. Totally understandable that you get really scared — that is pretty dramatic.

So happy to hear you have a wonderful husband and support system. That is so key. Also glad to hear your local hospital has learned to aggressively treat your crises.

About your low IGG and IGG1 levels and potential treatment: It would be just fine to portal message or call Mayo endocrinology about that today or at any point you'd like. If they feel it falls outside their area of medicine, they can advise and point you in the right direction.

About addressing all members in a particular discussion: If you just write your post as a reply in this or any discussion on Connect, all members who have posted in it before will be notified in the manner they have elected (e.g., email). You can say something like "Hi, all …" if you like, in your posts to the group.

It would be interesting to know if @gman007 @retha @mlbaier @spice @jentucker @marciron @pagray24 @joj85 and @wesbig are familiar with the type of crises you are experiencing and might offer any solutions.

Would you have any suggestions for what has helped you on your road back to everyday life while living with this illness, Rhoda?

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Hi @rckj! I am not sure I can add much in the way of knowledge related to what you have going on, but like Lisa, I commend your efforts to try to find some normalcy. As far as asking for help, please don't be hesitant about that. Almost all of us became a member of the Connect Community because we were scared, needing answers, encouragement and support and stayed because we found it in abundance. I have adrenal adenomas on both glands, but for now they are non-functioning and my cortisol levels are normal. I agree with Lisa on calling Mayo as they have already been a big source of help and it seems to me that in my time here, if anyone does not know the answer, they will do their best to point you in the right direction and I feel comfortable that the medical professionals at Mayo would do the same. Again welcome and I hope someone that Lisa has brought in to the conversation may know a little more about your issues than I do, but you will still have my prayers for answers and good health.
Gary

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