24 hour urinary free cortisol (UFC) is considered a gold
standard by most doctors.
Basically, you are given a urine collection jug,
void at a specific time in the morning (8am is the standard given, but
whatever time you first wake in the morning and go to the bathroom
works, you just have to write down the time and make sure you collect
the same time the following morning). This first urine of the day you
flush down the toilet, but that time is the official start of your
test. You then carefully collect every drop of urine the rest of that
24 hour period, usually with a "hat" you get from the lab, pour it into
the collection jug, and unless it has an acid preservative tablet (most
labs don't use those for this test these days) you have to keep the jug
refrigerated during and after the test. When you get up the following
morning (at the end of your 24hr testing period) and pee in your hat for
the last time at the same time you peed the following morning, you add
this sample to your jug and the collection sample is now complete.
You
seal the lid, measure the volume on the side, write that volume on the
jug along with whatever other information it requires --generally at
least you name, often collection start and stop times and dates, maybe
your ordering doctor's name, the test, etc-- and this information might
also need to be added to the test requisition paper as well. DO NOT
forget to fill these out completely, and I advise you now to keep a log
yourself of each test you do and include in this log the day, the test
type, the total VOLUME of the sample collected, and the lab you submit
it to if you are using different labs for different test types (I had to
due to local restrictions). It is VERY common for labs to order these
wrong, to forget to write down total sample volume (and thus not
calculate results), etc, etc. It will always be aggravating, but being
prepared in this way will at least mean that some of that effort can
still be useful. I've had friends take pictures of their labels with
their cell to keep track. I personally write the information down along
with my daily symptom/sign/weight tracking that I am already doing so
everything is in one place.
The biggest downfall of
this test seems to be that it is totaling your cortisol output over a 24
hour period. So, if you have a flipped (backwards) diurnal rhythm and
your cortisol is high at night but low during the day, your average can
still show up normal or just slightly elevated, even though you may
quite ill. It takes an astute doctor with experience to figure this out
and know how to test more effectively...not to mention, a doctor who
trusts his patient's symptomology.
The second reason this 24
hour total can be a downfall is that more and more we are recognizing
cyclic and episodic disease states where they alternate between high
cortisol and normal or low cortisol states over periods of days, weeks,
months, and possibly even years. I was a fairly predictable cyclic case
(cyclic basically means more predictable, episodic means less-so) and
had roughly 2 weeks of highs and 2 weeks of lows. If I were to collect
my 24 hr UFC's in a low cycle, it would not show I was ill. In fact,
this is EXACTLY what I did with my first round of testing, because I
didn't know better. I had one or two marginal high tests (above the
normal range, but not sufficient evidence) and the rest were normal.
Once I learned how to track my symptoms and could better gauge when to
test, I moved on to a diagnosis.
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