Questions

Another reader question:

Where can I find the result of an RA test in my lab paper?

Different laboratories format their reports differently, so the location of the information you want will vary.  Nobody can say “look at the fourth line down” for a specific test.  You probably have to slog through a lot of information to figure out what’s going on.

To complicate matters, there isn’t one specific test for RA.  Doctors can order a CBC and say with some degree of certainty, “your white count is ___.”  They can’t do that with RA.  There is no test (or group of tests) that can be ordered that will tell the doctor with certainty that a person does or doesn’t have RA.  When you hear that RA is a clinical diagnosis, that’s what it means – the diagnosis is made in the clinic, not the laboratory.

Your doctor is a clinician who must take a careful history, perform a detailed examination, then based on the evidence can try to determine what’s going on.  The diagnostic criteria for RA has changed.  In the past, people had to be well along the road to permanent joint damage before they could get a diagnosis.  The goal now is to diagnose early and treat aggressively enough that damage visible on x-rays never occurs.  I am highly in favor of early diagnosis!

Lab tests are part of the diagnostic criteria, but seronegative RA can be diagnosed with completely normal lab results if symptoms have lasted longer than six weeks and there are more than ten joints involved (as long as at least one is a small joint).  Seropositive RA means that lab tests (RF or CCP) support the diagnosis.  Tests that might be ordered if an autoimmune disease is suspected:

It is not appropriate to tell your doctor to order a specific test.  I wouldn’t much care for it if a client walked in off the street and told me how to do my job, and you probably wouldn’t either.  That makes it pretty easy to understand the doctor’s point of view on this.  You don’t have to read very many medblogs before you discover (if it isn’t intuitively obvious) that doctors don’t appreciate people telling them which tests to order.  Just explain your symptoms and let the doctor do his job.

There’s a small sticky-point here.  RA can be hard to diagnose.  Some doctors don’t realize that RF is negative in many people with early RA.  The CCP test is relatively new, and doctors who didn’t specialize in rheumatology might not know about it.  A doctor might suspect RA, order a test for rheumatoid factor, and not realize that there’s more to diagnosing RA.  This is where it pays to have a good relationship with your primary doctor so that you can return for follow-up without being blown off as a hypochondriac (unless you are one).  If you’re concerned about something, don’t make your doctor guess; say so.

Graphs

Following up on Asking for Results and Requesting Test Results, a friend asked me why.  After all, it’s not like patients can do anything about their results.  If anything can be (or needs to be) done, the doctor is in charge.

That might be true, but the doctor can’t treat what he doesn’t know.  Doctors don’t always share information.  Things can get missed.  On more than one occasion, I’ve been able to provide the report on labs ordered by one doctor that another doctor wanted to see.  It’s not just labs.  Neither the electrodiagnostician nor rheumy#1 sent my EMG results to my PCP; I was able to provide the report.  My PCP assumed that tests run by the endocrinologist were normal since he hadn’t heard anything; I was able to give him the report that showed otherwise.  Last month when my rheumatologist asked if I’d ever had a thyroid ultrasound, I was able to open up my notebook and extract the radiologist’s report for her to see right then.

I also find that it helps my peace of mind if I have a copy of my results.  I don’t just glance at whatever shows up in the mailbox, nor do I file the pages away and forget about them.  I learn about the tests.  When a test has been repeated, I compare the result to previous results.

Recently I’ve been plugging the results from my blood tests into Excel, then turning the data into a graph.  By entering the low/high* ends of the normal range, as well as my lab results, I can get a cool graph.  Here’s the illustration of one of my lab values over the past couple years.

Thankfully, this isn’t a graph of company sales!  There isn’t a thing I can do about these results.  I suppose I could worry about them, but I don’t see that being of benefit.  It turns out that this isn’t unexpected with RA.  Additionally, it can be caused by some medications.  Knowing helps.  For now, I can see that I’m still in the normal range.  If the trend continues in the future, it won’t be a surprise.  I’ll be prepared to hear the new plan of attack because I’ve already had a chance to learn a little bit about it.

Another graph:

This value was floating around nicely in the middle of the normal range for nineteen months.  Bam!  In two days it plummeted.  It’s amazing that something like that can happen.

To tell the truth, I find it all pretty fascinating.  I don’t need to take up my doctor’s time asking about the meaning of every test, but I’m seriously considering the purchase of a few textbooks so that I can make more sense of it all.

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*green=low end of normal, brown=high end of normal

Asking for Results

You don’t have to read very many medblogs to discover that there are doctors who prefer giving patients a general “everything looks okay” report, rather than providing a copy of all the specific test results.  Not that there’s a problem with the information, but because without training people don’t know what matters and what’s not worth worrying about.

When patients see values outside the normal range, they get worried. 

Oh, no!  I’m not normal!  I’m abnormal.  There’s something wrong!

This can lead to frantic phone calls to the doctor’s office about things that aren’t medically significant.  Quite honestly, when there are people waiting who are sick and in pain and needing help, it would drive me crazy to instead spend time on the phone reassuring healthy people that they’re okay.  I can understand why it bugs doctors.

There’s another aspect to this, though.  The doctor gets to move on to the next patient, forgetting about anything even slightly unusual until it becomes obvious whether or not there’s a problem.  As a patient, I don’t have that luxury.  I have to live in my skin.  Every day I’m a guinea pig in the better-living-through-pharmaceuticals experiment.

Sometimes patients want their lab reports. Doctors don’t necessarily want to spend their time explaining normal results.  What’s a good compromise?  I hope I’ve found one.  Instead of phoning my doctor to get results, every time blood is drawn I ask the lab to send me a copy of the report.  It doesn’t take any time or resources from the doctor, but I have my information.  Having a copy of my results lets me relax; I’m not waiting, wondering if the doctor’s office will phone to say that something else has gone wrong.

LabTestsOnline is a pretty good reference.  Anyone can look up any test to learn what it measures and what it might mean if results are high or low.  This allows me to be reassured immediately when things are normal, and provides background so that I am better able to understand my doctor’s explanation when they aren’t.

What about phone calls?  My doctor knows what’s too far outside normal to ignore and notifies me if there’s a problem.  I never call for a free explanation over the phone.  If something is concerning enough that I really need an explanation, it’s worth making an appointment to discuss.

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