-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.
Posts
Diagnostic Tests to Reassure Patients
4 days ago
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).
ReplyDeleteI'm hoping and praying that you'll be able to stay off of them for a good long while. Years even.
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.
ReplyDeletemo