Discussions By Condition: I cannot get a diagnosis.

Undiagnosed Exogenous Adrenal Insufficiency?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Paula1849
  • May 16, 2013
  • 01:13 AM


20 years ago I was being treated for back issues by having steroids pumped into my lower back disks. I was told to come in weekly for treatment, which I did for four weeks. On the fifth week when I showed up, I was told that I shouldn't be there and that they had given me the legal limit of steroids and that my treatment was done.

I had gained 40 pounds during the last two weeks of treatment and had a moon face. I look like two different people in before and after photos. There was no follow up treatment. Two weeks after my last treatment I began to have problems with muscle fatigue and other symptoms.

This has continued to this day, slowly getting worse over time. I used to have some good days, some bad days but now I just have bad days and not-as-bad days. I wake up and my mind wants to do all kinds of thing, but my muscles get tired out just brushing my hair.

About 10 years ago, I had a miscarriage and while in the hospital they put me out. I stopped breathing on the table and woke up in the most incredible pain I have ever felt. I went home and slept for three days, and when I woke, I had brown tan spots under my breasts, behind my knees, and under my armpits.

My world is getting smaller. I hurt everyday. I work from home now to try and manage my life. I am a type A personality and frustrated beyond belief because, when I go to the doctors, they say I am depressed, have fybro, or that there is nothing wrong with me except that I am "female, fat, and forty".

What really scares me is the future. I am terrified what this is doing to my body. What if I have an accident?

I have been going to Dr. Google, since I feel like I haven't been listened too. When I look at the symptoms for Exogenous Adrenal Insufficiency it is like they wrote it for me.

Is there anyone else out there like me? Can one have untreated Exogenous Adrenal Insufficiency for this long? How can I find a doctor to help?

Help please!

Reply Flag this Discussion

3 Replies:

  • Follow up. I found the right doctor. He is an endochronologist and he ran all kinds of test and found out I do have very low cortisol levels. Horray! 20 years of looking for answers and I finally have them.It ties back to when I had steriod injections in my back and the stopped me cold turkey. He is treading slowing in terms of treatment because he doesn't want to make it worse but at least the end is in site! I look like I have high cortisol levels. I even have the stupid buffaloe hump. So now just crossing fingers he can find the right treatment approach and that it works. Thank you!Paula
    Paula1849 5 Replies Flag this Response
  • I'm so happy for you Paula! You never realize how important your health is until you aren't healthy anymore, it must feel amazing to be getting back to feeling well after so long. Congratulations.Amanda
    amanda88 16 Replies Flag this Response
  • Thank you so much Amanda. Now I am just waiting for the doctor to figure out the right treatment. It is so frustrating when you know there is something wrong but the doctors don't believe you or can't find something.Have you had your cortisol levels check? Mine was due to the back injections I got but I looked at your post and saw your symptoms. Sometimes you can have a small tumor that causes problems and one of the symptoms for low cortisol/adrenal issues is fainting. I have had panic attacks and it feels like my throat is closing up and I have had heart palpitations as well. I know thyroid can do that but my thyroid is so perfectly fine cause that is the one thing that every doctor tested. I will cross my fingers for you!Paula
    Paula1849 5 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.