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.

AM Cortisol

The am cortisol came back at 18.

Which is fabulous. I am actually thrilled. Wish I felt as good as the numbers indicate I should.

I will point out, remember in July the am cortisol was 13. So I clearly continued to recover and my system was not optimal between then and now.

Which I was saying that all along, however, this provides some evidence of the gap between clinically normal and real-life normal. Always good data points to have. Also, a good argument in favor of stress dosing.

The endo thought the steroids wouldn't be helping me in light of such a good am cortisol. However, they are. They allow me to eat and prop up my energy.

I didn't get into steroid withdrawal with the endo. I should have, but I'll be seeing them in a few weeks anyway.

The plan is to try and wean, which is terrifying to contemplate. I finally feel good and now I have to go back in the hole--the fatigue is lurking, waiting for me to open the door.

I'm waiting to hear back from the PCP what they want to do.

My sense is that a wean will put me back to not eating and no energy to function. Practically speaking, I will probably end up taking a booster dose of steroids on the days I work until we can figure out what is going on and come up with a plan for it. Not thrilled about that, but, at the moment the name of the game is keeping me upright.

If you have any ideas, I'm all ears.

Monday Brings the Pain

Sunday was the flip side of Saturday. It started nice enough. I let the hubby sleep in since he was sick. Everyone was mellow. Then the toddler messed up her big toe pretty badly, so now we are both limping.

By the way, two other people I know took bad spills over Tday. Clearly, it is dangerous to even know me. If I were you I would run I mean walk away very carefully while holding on to a railing. Any running around me is bound to be fatal.

Then the toddler did her best to convince us we were such incompetent parents that blind wolves with rabies and lobotomies would do better.

Attempts at crafts devolved into tantrums with accompanying sonic booms.

I offered to read books. Play games. There were time outs. Loss of privileges. Discussions about making good choices. Nothing worked.

On the upside, she was drawing rainbows and people, which is a first for her and why she goes to OT. I was super excited and hung every single picture she brought me on the wall, absolutely tickled pink. She then pitched a perfectionist fit and stormed off.

Sigh.

Growing up is harder than I remember it being.

Thankfully, I had a stash of Christmas dvds that saved the day.

My ankle is still twice as big as it should be with limited mobility, but the pain is much reduced. Since my energy is better, this means I want to exercise. However, I am unsure as to how far I can push it.

So that's what's shaking. Off to call endo to learn my am cortisol was normal.

AM Cortisol

Did the am cortisol.

Quick tip. If the blood is just not flowing. It's not your crappy veins, but rather a crappy collection tube. Ask for a new one. Preferably before you are stuck multiple times in search for the ever elusive 'vein with blood in it.'

This has happened to me so many times, now I know to ask for a new tube.

Gnawing hunger woke me up at 4 am and I was super loopy from what I assume was low blood sugar (why my body doesn't just tap into my copious fat reserves I don't understand). This was the first blood draw I tried to sleep through.

Because of the hunger, I held off on the steroids wanting to see how things changed with food. I fasted because I always convince myself I'm supposed to, and you never know what else is on the order that might benefit from fasting. So I staggered to the car, my head lopsidedly heavy and ate a granola bar.

That helped with the wobbling and general titl-a-whirl feel to the world, but the fatigue was still there.

Still I held off. Because I really do hate steroids. They are not without risks and problems. I would prefer to know I need them than to think I need them.

When the fatigue wouldn't let up (I believe this is an example of magical thinking because what exactly did I think was going to be different?), I did take 10mg as planned. We will have to see if that's enough. I do believe I have some cortisol production of some level. I don't know if I need a full physiologic dose or even daily steroids, but I could be wrong.

Lost 1.5lbs.

Appetite seems to be better now with 10mg. Fatigue is not as profound. I am still tired but am missing sleep and it could be I need more than 10mg. We'll see how 10mg day 2 goes.

Three Quick Hits

1. The toddler fell down the stairs and had a leg collapse while standing after the EI assessment. I should have known it was coming as muscle fatigue is a trigger, however, I flaked and forgot to watch her on the steps. Thankfully it was not a serious fall. I am annoyed that this 360 view is absent from the EI assessment.

(Also, I'm laughing remembering how they said any OT would be 'short term' which I don't think they realize it took a year to see some progress in PT--some as in we have more work to do because there are still deficits. I have the feeling they think if they just let her run with scissors she'll be fine, their naivete makes me giggle.)

She also had a big tantrum at her PT session and ended up throwing her shoes at the PT (who is the sweetest most lovely person). She was hot. She was tired. Her feet hurt from all the PT and she couldn't articulate it.

She felt terrible about it and sobbed all the way home. We are working on a way to make amends with the PT (who completely understands, but I don't want the lesson to pass the toddler by, you fix what you break).

2. I have stopped taking steroids. It could've gone either way and, in fact, when I listed the pros and cons, the up dose column kind of won. However, updosing wasn't much help last week so I stopped taking steroids instead.

While it's too early to claim victory, I think it's going to be okay. (Don't worry, I will still whine for weeks about withdrawal/insufficiency symptoms.)

I have an endo appt coming up and plan to do an am cortisol draw the same day just to be safe. I think we now begin to move into the next phase of this mess...

-Re-enter standing orders for more cortisol tests on the off chance I tank again. The fact continues to be, I had weaned and exercise brought me low. It's not enough to be off steroids, I need to be off them and exercising and working and parenting with impunity. The goal is a life, anything less is a failure.

-Writing a note to the pulmonologist who believes none of this is adrenal with an 'is to' message and instructions on how to taper steroids in the future.

-What other protections can be invoked? If I can't put some protections in place, there is nothing to stop this from happening again. It needs to not happen again. Really there's no excuse. If it's not a known, documented problem by now, there's no hope for medicine and only despair for patients.

3.My PCP still has not called me back re: the gut. Bwahahahaha. Isn't it amazing how this stuff happens and happens and happens? I'll give it another day before I bug them.

Exercise Can Trip You Up

I did a hard (for my current level of fitness which is somewhere below that of inanimate objects) squat workout the other night. It wasn't long, just intense.

And the next day the adrenals were all fired up, aching and burning. I got the message and sat on my a$$, resting as much as possible. Even going to bed early. In addition to the naps. No, not nap, napS plural.

This concerns me. If I am truly recovering and what not, I should not be having such issues with exercise. It should not deplete me so deeply.

I don't know. I'm willing to let it go for a bit longer and see what shakes out before I start duking it out with the endo on the matter of more cortisol testing. I don't know how they can say no given my am Cortisol level was 6 despite 10mg of prednisone in my blood stream, but they manage it somehow.

Must be a great hardship for them, I know.

On the topic of exercise, the toddler fell down the stairs again. I was expecting it and was there to catch her. It was after her first PT session in over a month and I figured her muscles would be fatigued so I carefully monitored her on the stairs. Which was wise, had I not been there, it would have been a serious fall, straight from the top.

It's frustrating and frightening and I don't know how to make it better.

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.