Friday, June 17, 2011

HPA Axis Suppression By The Numbers

-15 months on steroids

-3 endocrinologists

-1 endocrinologist who would actually deign to run the blood work

-1 botched ACTH challenge (none of the draws were on time and they missed one entirely)

-5 different ways to interpret those ACTH challenge results (endo says fiiiiiine, I'm a bit more skeptical)

-1 pulmonologist who maintains it's "not adrenal"

-6 the am cortisol level in December

-<5 the ACTH level in December

-1 doctor who tried to tell me I didn't have asthma

-0 doctors who managed to come up with HPA axis suppression as a diagnosis (officially I believe it's still characterized as 'weird steroid withdrawal')

-1 previously well documented incidence of HPA axis suppression with an am cortisol of 1, the records of which were available to all treating physicians (So WTF?)

-1 toddler who did not have the momma she needed...for 15 months

The root cause of all this?

1 (ONE!!!!!!!) measly asthma attack.

Sheesh.

Now the wait begins. Can I stay off steroids?

I don't know.

2 comments:

  1. Steroids Suck. That they do, and well. I was off and on them (about 50/50) from age 13 to 31 (18 of the most important years of my life). Luckily, I have not had the adrenal issues you had, but I had the mental ones, and I did develop Graves (but that is probably genetic).
    I'm hoping and praying that you'll be able to stay off of them for a good long while. Years even.

    ReplyDelete
  2. Good luck with your steroid withdrawal. The first time I had an ACTH STIM TEST they did it wrong. I bitched because I had to pay for it, and the next one too. My levels were tanked, but I can't remember how low, it was 11 years ago. Hope you are doing good today.
    mo

    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/