Looking at Am Cortisol Tests

I have a sore throat.

Of course.

That's very consistent with how this all goes down.

Still, I busted a move to Maroon 5. Beyond that, I spent most of the day resting and taking it easy and feeling progressively better. Okay, to be completely honest, I got a little heavy-limbed and fatigued dancing, but I persevered. No one ever called me a slacker on the dance floor.

All that remains is the cold-that's-not-a-cold. Let's hope that will be gone tomorrow, or, rather, today by the time you read this.

I was going through my test results today, trying to organize the data I have. Something interesting caught my eye.

My am cortisol in February of 2010, before I was hospitalized and swallowed the steroid equivalent of a WMD was....8.

Which is not great. It's normal by most lab ranges, abnormal by others. I, personally, think it's low given how shitty 6 felt in 12/10*. If my system was trending low when the asthma hit, no wonder I suppressed so impressively in March 2010. I didn't have far to fall.

*That 6 is with 10mg of prednisone in my system, the actual, unadulterated value was likely below 5.

For comparison, the severe asthma episode of 2006 did not lead to suppression. Was the difference a higher baseline cortisol? The world will never know.

I've also been trying to get a hold of my 1998-99 ACTH challenges, believing they are an important point of comparison. I thought I had the starting values for the three that were done, but I just realized, I actually have one complete ACTH test from 7/99, about 3-5 months before they booted me off cold turkey.

As you review them, keep in mind, I was diagnosed as suppressed in Fall 1998 with an am cortisol of 1. By 7/99, we've got over ten months invested in waking up my HPAA.

Draw One: cortisol 1.3

Draw Two: cortisol 5.4

Draw Three:cortisol 7.17

Pretty crappy, eh?

Like I've said before, I don't think the 98-99 taper was all that well managed. I had pretty overt Cushing's the entire time. So maybe my system is crap or maybe the medical care was. Hard to say.

I would really like to get my hands on the other two ACTH challenges and maybe even see what my ACTH values were as well. So far, the Medical Records Department has stonewalled me even though I know for a fact the pulmo can pull them up in their system still.

But what I take away from this is I have a lot of movement in the HPA axis. I might be 8. I might be 18. Who knows? This is consistent with my complaint of feeling like my energy is a yo-yo handled by a psychopath.

Following the Clues

First clue, the pill pack ended last week and the adrenals have never liked major hormonal changes. This time they were copacetic for a few days until deciding that oh, yeah, I really did need to hit the wall at 60mph.

Bam. I was down for the count.

Second clue, headache that would not go away. Couldn't touch it, not even alternating Tylenol and Advil (in large quantities). Sleep only provided marginal relief.

Third clue, eye burning fatigue, but no heavy limbed-ness. Quickly dismissed as Doing Too Much and Being Too Busy.

Fourth clue, when the toddler touched my leg, I just about screamed from the pain. Fatigued muscles that would not recover, even with rest. Sad zombie shuffle was the default gait. Only the adrenals make me hurt/walk like that.

Fifth clue, the small muscles of my feet began to painfully spasm. This is a classic sign of adrenal weirdness for me.

Sixth clue, blood pressure was being weird. Not the huge zig zags I've have before, but I had some 20 point drops that made me symptomatic and went lower than feels good for me.

Final clue, my life was getting smaller, not bigger. Napping for the better part of the afternoon while the toddler watched cartoon after cartoon. Just letting everything slide, except exercise, which I dragged myself through by sheer force of will.

Based on this, I took 5mg to see what would happen. Wow, what a difference. I felt awake and alert. My legs stopped aching. Still struggled a bit with exercise, but it was 95F out, which doesn't help. However, the exercise didn't tank me for the day like it had been.

Now I don't know if I should take more tomorrow or stop or what? I would bet money that the ACTH challenge was normal. So I should not even need steroids. Right? I should be free. Right?

5mg isn't even a physiologic replacement dose for Hydrocortisone. I can't be doing that badly if that's all it takes to turn me around, right?

So why can't I live my life without the steroids?

Is it the exercise? Should I stop? I'm not doing much because of the knee problem. Mostly walking, but it's been very hot. I slowly walked 2 miles today and played 30 minutes of light tennis (i.e. we can't really hit the ball well enough to get a real game going, so spend most of our time picking up the balls). Is this really too much?????????

Day of Rest

Had the ACTH challenge this morning. It's over. No more frenetic working out. I can take a day off and relax. Except for one day when my knee was really painful, I have exercised every. single. day. leading up to the ACTH test.

Yesterday, I walk a mile, biked 2 miles and swam 1.5 hours with the toddler. It was exhausting and I was completely wilted by low blood sugar/lack of calories, which turned around with a small piece of cake at my sibling's Bon Voyage party. (They are going Down Under to study PT for a few months.)

So today, I'm wearing my comfiest knit pants and a soft t-shirt and oh yes I will go out in public like an under-dressed hobo. I don't care. My legs ache. Both knees hurt. My lower back aches. I'm going to lay low for a day or two before getting back on the hamster wheel.

If the ACTH challenge comes back normal, then based on the wringer I put myself through, I think it's safe to say it's pretty much over. Hello, Normal, here I come.

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.

Sifting Through My Medical Records:AM Cortisol of 6.1

First a note on Roger Ebert & the Newlyweds:

If you recall the post I did on the young couple in Arizona struggling to feed and house themselves while fighting terminal brain cancer, Roger Ebert has picked up the cause.

Read about it on Head Nurse's blog.

The couple's blog is here and this is where you can make donations.

And then say a prayer for the hundreds if not thousands or hundreds of thousands of people who don't have the insurance of a cause celebre.

***

I finally got my medical records from the last several tests I've had. Which is good considering the pulmnologist did not return my calls when I inquired as to the results of the CT scan.

Call me crazy, but I think that loving feeling is gone. On both sides.

The right lung nodule has not grown (yay!) nor is it gone (boo!), BUT it seems I have twins as there is now one on the left side that was never mentioned before (to my knowledge). Final 'impression': Stable punctate pulmonary nodules.

I don't understand all the terminology and I'm confused as to whether or not I have a new nodule. Was it there before or not? The radiologist's report will go out to relatives at the major University hospital for interpretation.

My am cortisol on the day I saw the current endo AFTER taking 10mg of prednisone?

6.1.

That is LOW people.

Keep in mind, this was not long after the most serious, scary crash I had where recovery was very very slow. I guess my gut instinct that I hadn't taken enough steroids to address the problem could have been right.

ACTH was less than 5, which is also low, but I suspect not unheard of if your HPA axis is suppressed.

So I guess the ACTH challenge shows some recovery????? The baseline was 13 which is more than double from where I was with the first am cortisol of 6. However, 13 is the cut off for additional testing of the adrenals so it's not exactly a promise that I'm out of the woods, although I am hopeful.

Ironically, the lab flagged my final ACTH challenge reading as high at 20.6. How funny! Especially considering that medical school texts advise that anything less than a 22 should be further investigated with an Insulin Tolerance Test.

The thing that aggravates me is I feel like the endo should have disclosed the initial low cortisol to me since that was the whole point of seeing them. I also would have been much more confident in their interpretation of the ACTH challenge if it had been framed in the context of ' you were at 6 when I first saw you, now you're at 13, this is progress.'

Don't get me wrong, I'm still going to push for another challenge if I struggle at sub-physiologic doses, but better communication would have been appreciated as well as been helpful.

Again, this is a hard, painful slog. I need to know I'm suffering for a good reason. Also, improving the context makes me less of a pain in the a$$ as a patient so it's really a win-win for everyone.

Is it really so hard? Did the endo even look back to see the initial results when discussing the ACTH challenge with me?

Aside from all the adrenal stuff, the Erythrocyte Sedimentation Rate was high. From my scant reading, I gather this is a non specific marker for inflammation that can be useful in determining a diagnostic direction. I don't really have any feelings about this one way or the other, although perhaps I really should see a rheumy.

Lastly, all the anemia related blood values are looking better. A lot of them are normal now and the few that are lagging behind are just shy of normal. This is a happy improvement.

Cortisol at Christmas Time

So the aftermath of the ACTH challenge has been...

1. Muscle cramps

2. Flank/back pain

3.Fatigue

4.Shortness of breath

5.Loss of appetite

6.Mild drop in BP

7.Major headache

I didn't get the Hydrocortisone into my system until after noon which probably explains it. The challenge only administers 1mg of cortisol, which is not enough.

The cramps could just be from the switch back to HC from prednisone--my muscles are pretty cranky. My stomach feels like I've done a billion sit ups.

I wonder if this is why the IV/blood draw attempts were so painful? My hand actually throbs just from holding things due to the massive bruising. The pain seems excessive to me and I'm irritated with myself about how whiny I am about it.

But it huuuurts.

Wah. Wah.

I was over myself about 5 hours ago, you?

Family starts arriving tonight. I hope to make sugar cookies among other things and have the neighbor kids over for an Xmas pizza play date. We wrapped the presents last night. All done with shopping both for presents and holiday food. The house is kind of clean if you don't look at anything too closely.

Onward.