Tuesday, January 25, 2011

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?


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.


  1. Sed rate is soooo non-specific. Something is annoyed/inflamed in your body. Anything. How high was it, compared to the range?
    Is your anemia one of chronic disease? (that is a very specific type of anemia)?

  2. I was just kind of surprised it was able to be high given all the steroids I was on. I think it was 22 and the cut off was 20, so not a huge jump.

    No one has looked at why I have this tendency toward anemia. Losing all that blood last year really exacerbated the problem. Anemia seems to dovetail a lot with all sorts of medical issues though.


  3. I want to believe that when there are better medical record systems in place, there will be more integration of past test results into the interpretation of new test results. But given the week I'm having, I'm feeling cynical and I suspect that even if the doctors had something better than flipping through screens or pages to review results at their disposal, they still would find a way to ignore or discount or fail to notice the relevant information. Grrrr. I am sorry you're in that rotten space of wondering why they practice medicine like each encounter is a one off. I hate that so much - it's a waste of time and money and I can't help feeling that it results in crappy patient outcomes. Glad you were able to get your results though. At least it answers some questions for you.

  4. Most doctors would consider that ESR insignificant. The normal range is what is normal for the majority of people, but not all, so a point or two is not considered significant. True, it is on steroids though...

    With your anemia - have they ever said HOW anemic? And what kind - that can be determined somewhat from the CBC. My husband hand a long-term low-grade anemia, it took a hematologist to figure out that it was an anemia of chronic disease. Unfortunatly, they haven't figured out the disease.

    As far as records, I always get a copy of all labs and test results. Keep them in a binder, most recent first. Sometimes even have a typed summary - docs do tend to like/look at those.

    Have you ever considered somewhere like CLeveland Clinic for a comprehensive workup - where (hopefully) the doctors would talk to each other?



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