Tuesday, December 20, 2011

What Do I Need?

Trying to sort out what I actually need for the upcoming endo appointment.

First, check out this case study of a soccer fanatic with Addison's.

"Previously she had enjoyed excellent health and participated in high intensity training for extended periods. Within three months even leisurely walks on flat terrain resulted in severe fatigue and intermittent chest discomfort."

The exercise issues described resonate strongly with my situation. Only I don't test as well as that patient did--they were pretty easy to diagnose.

My feeling is there's something wrong with the HPA axis but, while stress dosing is vital, I probably don't need steroids everyday. Whether I will ever fully recover remains to be seen--I tend to think I'm developing permanent Secondary Adrenal Insufficiency due to the prolonged and varied insults to my system. As I've stated before, this has been the most severe and dangerous suppression yet.

It has been different in many ways:

-Diagnosis and treatment was delayed, I believe, almost fatally. I truly thought Medicine was going to kill me last year (2010).

-Compounding problems. While I was suppressed and without treatment or diagnosis, I lost a lot of blood, one point shy of anemia, and had the stomach flu. All without a properly functional stress response.

-Had an adrenal crisis.

-I have not been able to stay off steroids for any length of time.

-Energy for exercise has been an ongoing issue that is not resolving.

My goals from this point are:

1. To stress dose when appropriate, possibly even including exercise.

2. Cross fingers things resolve and the need for steroids becomes obsolete.

3.If things don't improve or get worse, an ITT or OMT would be a good idea but the odds are pretty low of a physician actually ordering those tests, which leaves me hanging. I am not sure how to proceed on this point.

I suppose the good thing is, if this is developing Secondary AI, it will eventually be bad enough to ace all the tests that come before an ITT. I just need to survive until that point.


2 comments:

  1. I hate the feeling that medicine needs us to get worse before t gets what's happening. I feel that a lot and it seems like such a hazard to people's health. I don't want to be sick enough for YOU to get it. Let's figure it out now!

    ReplyDelete
  2. I don't envy you the upcoming appointment, although I do wish you luck. I just rescheduled mine. I decided I needed a day off more than I needed a day spent at ye olde endocrinologist's office right now.

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/