Thursday, June 23, 2011

Endo Appt Minutes

I should be cleaning the house, which got pretty trashed during the two day edit-a-thon, but cleaning is no fun and blogging is a good way to procrastinate. The only complication, the toddler is having one of those 'mommy, hold me' days so we'll see how long I get to type.

1. I went in early and did the am cortisol draw. Although I think the standing order the endo put in was something more elaborate because I had the fancy test tube on ice blood draw for ACTH.

I will be shocked if it comes back low as I felt pretty awake compared to the previous two days though, I was comatose (just could not wake up and spent most of my time trying to finagle a way to lay down).

2. I was offered the option to go back on steroids after reporting that I exercised for two days in a row and then was laid low for two days as a result. (It's not just fatigue, it's heaviness in my limbs, like they are physically heavier than usual and I just don't have the muscle strength to move them.)

I said HELL NO. I did appreciate the offer and was really surprised at the idea that anyone gave two shakes about how I felt. But good Lord, to go backwards? No no no no no no nooooooooooo.

My take is that I must have some HPA axis functionality to even stop the steroids and it's do or die time. Either it works and I recover, or it tanks and the conversation changes, focusing on the lack of recovery. However, two days where just getting out of bed was an achievement is not tanking. It's not bad enough for me to go back on steroids.

(Okay, it may be that my sense of normal is messed up at this point, but I'm just not going to updose every time I feel tired.)

For all I know this is just part of the adjustment to the change in dose. It may pass, right?

3.We talked a bit about preventing suppression. A note was sent to pulmonology but I have no idea what it said. Probably something like 'this patient would not shut up until I sent a note, so act like I wrote something important when you see her.'

I told the endo my big fear is that I'm eventually going to end up intubated or in another situation where I can't speak for myself, it's just a matter of time. I don't want people thinking they can do whatever with steroids. They told me not to worry, I would be on steroids as long as I was intubated.

To which I replied, "Never underestimate the ability of someone to cut off steroids cold turkey."

One pulmo wanted to cut me off at 20mg last year. When I challenged that, I got 10mg, which was still too high. I have yet to meet a pulmo who seems to be cognizant of what a proper steroid taper should be. I have further refined my knowledge over the last year and now I know, but I am not always in a position to properly advocate for myself.

There needs to be a neon flashing sign in my electronic chart. "Patient has HPA axis of a gnat."

4. Another ACTH challenge is scheduled for July. Another shocker. I expected to be dismissed into the sunset, but instead I received thoughtful and conscientious medical care. I don't know what changed. Maybe I've proven I'm not a jerk or they've found this blog (in which case Hi!).

Between now and the test, my goal is to start exercising and pushing myself toward a normal schedule so that if I can't hack it, it will show up on the test. The only thing is, I'm still dragging a bit and would really rather sleep. Squats just don't hold any appeal right now for some reason.

One issue with the ACTH challenge, it is not diagnostic of Secondary Adrenal Insufficiency (SAI) from what I know. SAI can yield a normal ACTH challenge, yet the patient can still be insufficient. The ITT (Insulin Tolerance Test) is what diagnoses SAI so the testing may be of limited utility.

I highly doubt I'm dealing with Primary Adrenal Insufficiency. It would have to be SAI because I do have some functionality, just, possibly, not enough to allow me to do much.

My sincere hope is that I've achieved a baseline functionality that allows me to be off steroids, but that there's just a gap still between day-to-day production and ramping up to accommodate normal activities.

I don't think the endo sees it that way, which is fine, but I had hoped they would say 'Yes, that could be it exactly.' That didn't happen, but I'd like to hold on to my fantasy, okay? It has a happy ending and everything.


  1. Is this a new endo? It sounds like you've got someone you can work with here and I'm so happy for that!

  2. How's your amount/quality of sleep been? Not anemic in any way? Vitamin deficiencies?

  3. Hi Anon.

    I sleep okay. 8-10 hours a night. Plus nap when I need to (which right now is every day as exercise = face plant into bed).

    Ferritin is low but I am not anemic.

    No known vitamin deficiencies at this time. In the past, I've been low in magnesium and I suspect I was low in B the last time I dealt with SAI. I now make sure I take both B complex and mag along with stuff like fish oil, the toddler's gummi vitamins etc...

    I eat lots of fresh, raw veggies and berries as well.

    Why do you ask?



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