Thursday, February 2, 2012

Just Right

Penelope asked about secondary adrenal insufficiency and my recovery. My rather garbled response is below.

There are several kinds of adrenal insufficiency. You'll most commonly hear about Primary and Secondary. What is the difference?

Primary is pretty much a complete failure of the adrenal glands. So your brain is doing its job, sending all the right signals, but the adrenals are asleep at the wheel and unresponsive.

In Secondary, the system failure is in the brain. I think medicine does not address the fact that decline can be slow and gradual with symptoms appearing long before tests will reveal anything useful. You can retain some functionality of the HPA axis with Secondary and medicine has no freaking clue what to do about that craziness, so it ignores the problem.

Medicine is all about total failure when it comes to adrenal glands. 99% of the time medicine misses the nuances of adrenal problems and the tests are not cutting edge, which does not help. The textbooks are lacking, which leads me to think the hands-on training is pretty lackluster too.

The end result of primary and secondary is pretty much the same, not enough cortisol in the system. Treatment is roughly the same, but Secondary doesn't always have the blood pressure issues of Primary. With Secondary it is good to image the brain to look for tumors or other bad actors--unless yours is steroid induced.

The main cause of Secondary is steroid use and affects something like 6 million people (US). For comparison, GERD affects about 7 million people (in the US) and look at all the meds and commercials for them! Adrenals get nothing! That is insane!

I do not know if I will ever fully recover. I would expect, at a minimum, that I will always need to stress dose for surgery. Right now I still need to stress dose for exercise and illness. I could get worse, I could get better. Hell if I know.

I have corresponded with someone who has Secondary but also retains some functionality and I feel very similar to them. (Except they test better.) They struggle to know how much steroid to take because their system isn't completely dead. I'm on that tightrope now.

I hope that answers the question and that I remembered everything right. I like the Merck Manual for the basics and would suggest you start your reading there.

As for me...

1. Did not exercise today so I wouldn't have to take steroids. That is just not cool. I'm trying to commit to stress dosing for a month and then see where I'm at, but sometimes it's just easier not to exercise.

2.5 mg is not enough. I need 5mg when I exercise, so at least I know that much now, but I keep resisting the whole thing, like that's going to help.

2.I got a (small) consulting gig. Holy shit. My competence remains to be seen and I am nervous as hell.

3.I wrote 10,000 words in 4 days which is pretty cool considering how busy I've been. Unfortunately, the story is no longer streaming through my brain, now it's work.

4.Some business-y post I wrote went viral and I got mentioned on a huge blog that I majorly respect. Sadly, I am probably the only person I know who can go viral in such a way that it sells no books.

5. We got free entry and free pizza due to the puke and play incident I bitched about.

6.The zumba people still have not refunded my money. I will SO fry their asses via a Better Business Bureau complaint.

1 comment:

  1. Hi M,
    Thanks for your thoughtful response. It does help to clear up the difference between primary and secondary adrenal insufficiency.

    I had a significant head injury in my twenties. I've been wondering if there is a chance that my pituitary was affected.

    Thanks again
    P.

    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/