Re: Re: To Chris D. and Yong Yan (sarah from UK, too)
9/24/00 10:10 AM
Yong Yan, I think you make some excellent points. I worried about many of the same issues with my son's tests, both urine and blood. From what i've been told by my doctor, when blood is drawn, it is supposed to be drawn into a vial with a preservative (which keeps it from breaking down), or immediately frozen. When we submit a urine sample, the lab requires that I get from them, first, a container with an acid preservative, before we do the actual collection. Then, I put the bottle in the refrigerator for the 24-hours that we take the collection. We've also had drastically different readings from different labs, at virtually the same time. In February, we switched doctors, not because we didn't love our original doctor, but because we heard of a new doctor who was doing a trial GH study. On the day we first went to consult with the second doctor, my son coincidentally was scheduled to submit a 24-hr urine collection, ordered by the first doctor. This test showed undersuppression (came back with an 8.0 value, when we were shooting for around 2.0), while a blood test ordered later that exact day by the second doctor showed there to be absolutely no problem (in fact, the second doctor later tried to convince us that she felt those blood numbers showed my son actually to be OVERsuppressed!). An LHRH test done that day, however, showed there to be pituitary activity. My interpretation now (in retrospect): My son had good adrenal control, at the time. The out of whack urine test reflected beginning pituitary activity. Another series of blood tests--which included both tests for adrenal hormones and an LHRH test, for puberty---ordered several months later, was interpreted by the second doctor, again, to show good control. Clinically, however, my son had many signs of undersuppression, and we struggled to figure out why he was so emotionally out of control and starting to come down with a lot of headaches and neckaches. My interpretation now: My son was definitely undersuppressed at this time, I don't care what the numbers say. As an aside, these tests were done, per the second doctor's request, around 11 in the morning, AFTER he had had his medication. In May, we switched back to our original doctor, after a falling out with the second doctor. Our son's medication regimen was changed, he almost immediately began to calm down, and the physical symptoms disappeared, as well. Blood tests ordered 30 days after this switch (by doc #1) showed his 17-OHP numbers to be actually HIGHER than the numbers we got back from the other doctor (#2), though he was now getting effectively DOUBLE the dose of medication, and clinically, the symptoms of undersuppression were disappearing. Interpretation by doctor (#1): Good numbers for 17 OHP and androstenedione, which showed good adrenal control (supporting what was happening clinically), however testosterone elevated, meaning increased pituitary activity. His plan of action: stay on same dex dose, increase Lupron dose. This test was done around 8 am, BEFORE the morning dose. Now we are completely back with doc #1, and we recently had another complete series of tests done---blood tests for adrenal hormones and LHRH, and 24 hr. urine collection. Results: Blood showed no LHRH activity, but high 17 OHP (over 2000); urine was close to normal (2.7). Interpretation by doctor: Increased Lupron had desired effect (this from flat LHRH numbers). Generally, good adrenal control (this from close to normal urine reading), however dose is wearing off by morning, and needs to be increased (this from high 17 OHP). Again, this test done around 8 am, BEFORE morning dose. Plan of action by doc: Stay on same Lupron dose, increase dex dose. He feels this should now bring ALL the numbers down to where he wants them. My conclusions from all this (by now, I've probably hopelessly confused you), though they are still evolving: It is extremely important to look at things wholistically and interpret numbers in context. Looked at in isolation, numbers by themselves can be misleading and can easily lead you to the wrong conclusion. For example, if I relied purely on 17 OHP numbers, we would still be spinning our wheels with doc #2 who returned supposedly great numbers from her lab, at the same time that the numbers didn't support what was happening clinically with my son. Also, if this had been a few months ago, this last very high 17 OHP number would probably have sent me into a huge panic. However, according to our doctor, things are generally ok, the dose just needs to be bumped up slightly. I have to say that we are extremely fortunate that we have a doctor we have complete trust in, who has almost always been proven correct in his interpretation of events. And he has always based his interpretaion of numbers, by qualifying whether or not he thinks it's good (or bad) for that particular time of day, or relative to whether or not it was taken before or after medication. As we ourselves had experience with, a lower number doesn't necessary mean better control, it could actually mean worse control, if the conditions are different. To that degree, I believe sarah, from the UK, makes some very good points about looking at circadian rhythm, when interpreting test results. Blood drawn at the very end of the day may come back very low, because that is the body's natural way, but it may be incorrect to assume that it means a child is oversuppressed. And blood drawn first thing in the morning may come back extremely high, because that again is the body's natural way. It may show some undersuppression, but not to as dire a degree as one would think. Targetting different amounts to different times of the day, while keeping the same overall daily dose, can sometimes, apparently make a big difference. I don't know where this leaves you, Chris, because I realize you are in a situation where your son is getting tested first thing in the morning, before his dose, and his numbers are still showing OVERsuppression. If nothing else, maybe it'll just allow you to clear some of the clutter. I am sorry this post is so long. I don't know if it's helped, but I truly hope it, at least, hasn't served to confuse anyone.
Carol
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