Wednesday, April 13, 2011

Next Move

I'm really loopy right now. Just so you're warned. If you're wondering why I blog when I'm so impaired, it's because I'm no good for anything else.

I'm wiped because the endo appt stressed me out. So now the adrenal glands ache. For the first time in a long time. Which is disheartening.

My only frustration with my medical care is that it seems no one really understands the physiology.

According to the endo, I still just have steroid withdrawal preceded by suppression.

I don't agree. I think the suppression has been much more significant than doctors realize.

There is such a marked shift now that the HPA axis is waking up. My entire body has changed. It's not withdrawal, I can feel literally feel the difference.

The suppression was so poorly handled last year and the lack of any follow up testing once I weaned the first time, compounded things. There's a legacy here, a potent one and it just doesn't seem to factor in to my care.

However, ultimately, despite different points of view, things are progressing. The endo did the most intelligent thing yet in this debacle and that was switching me to Hydrocortisone with its shorter half life. Best move yet. Going to add that to my steroid playbook for future reference.

I requested a standing order for an am cortisol blood draw and, surprisingly, got it. If I tank again, the goal is to get the blood work done before starting steroids so the doctors have objective proof that can't be dismissed as easily as I have been to date.

The big question now is, will I be able to stay off steroids once I'm done weaning (which should be sometime in May if things continue to go well)? Exercise is a problem. Stressful situations are a problem. Just run-of-the-mill whitecoat anxiety can usurp the rest of my day. (How lame is that?)

The other big question, if I tank and the test comes back as low cortisol, what do I do? Is it time to travel and see doctors who do adrenals all day every day? Or do I chalk it up to the HPA axis still being in recovery mode?

It's hard to judge because, as I've mentioned before, all the literature says you updose for illness or surgery for up to a year after HPA axis suppression. The implication is just regular old stress or a hard work out should be okay. What does it mean that it's not okay for me?

3 comments:

  1. I think it means you just have to ride out the "regular" everyday stress. Having a toddler doesn't help at all I'm sure. But updosing too much is just confusing the hell out of your adrenals. I would still stretch the taper out longer than May or you will crash again.

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  2. Ha. I just had a big meeting at pschool for the toddler. Stress doesn't begin to cover it.

    I am perfectly willing to take steroids longer than the end of May. However, I show signs that I have too much steroid now: Acne, red stretch marks, mood changes. That's why I keep tapering. Also the tapers are now painless (which is amazing and I think a good sign).

    But then I seem to be weak when it comes to day-to-day drama rama. I don't get it.

    With the doc appt and preschool stuff, I have the flank/back pain, muscle cramps and deep fatigue. Ugh. Sucks ass.

    But if my life is smooth sailing, I am great.

    Should I keep taking steroids despite the signs I have too much? How do I balance all the effects? I don't need to supplement but yet I do. It's tough.

    Thanks for the comment

    M

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  3. I'm glad your endo was willing to do the standing order for cortisol draws. It's great that you could advocate for and get this. And I'll keep my fingers crossed on hydrocortisone.

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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/