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?