Wednesday, November 2, 2011

They Know Jack About Adrenals

Sometimes people contact me looking for adrenal advice and I'm happy to share what little I know. One nugget I find myself passing on rather regularly is that your number one job is to stay out of the ER and away from doctors. It is not getting off the steroids. No, day-to-day the most important thing is to never need emergency care because you can not count on getting knowledgeable care.

So no tapering during high risk events like traveling or going to a party or right before your period. You taper when it is safe to taper, i.e. when you can stay home and do nothing. And you always carry steroids with you and don't hesitate to take them. Better to have too much for a day then be at the mercy of a hospital that may or may not know what to do with you.

They don't know jack about adrenals. The ignorance is pervasive.

Case in point, whenever the risk of stomach/bowel/esophageal puncture was brought up during endoscopy prep, I told them, "Make sure you give me steroids at that point."

To which the response has been confuzzled silence.

Yesterday, one doctor clearly had never heard the phrase HPA axis before. Didn't know, didn't care. In fact, they were kind of irritated because I was ruining their carefully prepared spiel on the risks of the procedure. Frankly, I wanted to smack them. It's fine not to know, but to not care that you don't know? Inexcusable.

Thank goodness for the very thorough anesthesiologist who printed out my history and read it. I'm not sure they knew what HPA axis meant, but the phrase 'adrenal insufficiency' in my diagnosis list made a huge difference.

Score for getting an endo on board in the same medical system where I seek most of my care.

Just like in real estate, location matters in medicine.

So that bought me an offer of steroids right there, right then. Which I refused. I had steroids at home. I wasn't in fear of an adrenal crisis (except for if they punctured my bowels in which case all bets would be off and gimme steroids stat) it's just that my system performance is not yet optimal. It was immensely reassuring though, to work with a physician who had some inkling of what this adrenal crapola was and how serious it could be.

I'm still shocked by how little doctors know about adrenals.

Today I took steroids in the hopes of minimizing the effects of yesterday. I don't want to take steroids at all, but I remember how long the recovery took after the last endoscopy. Besides the asthma has been at Defcon 5 since yesterday. I guess my lungs didn't like the anesthesia.

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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/