Uncharted territory

Last Tuesday, I made a visit to my favorite phlebotomist (LabCorp) and gave them some samples of my bodily fluids, as prescribed by my endocrinologist. My visit with my Endo is on Friday (tomorrow).

The whole concept kinda weirds me out a bit — the person who draws the blood has a ridiculous-sounding job-title (though not deservedly so – the LabCorp facilities I go to generally can be described as almost no wait, almost no pain – a welcome switch from the place I used to use). Then they FedEx three tubes of blood and a bucket of pee to some mad scientist in a basement laboratory where he counts Hemoglobin molecules under a microscope – and also checks to see if the pee congeals when mixed with his super-secret blend of herbs and spices. Then the let the concoction ferment for a couple of days and see what happens.  (Think my assessment of the lab is far-fetched? You know where the term mellitus comes from, right?)

OK, maybe not. But the whole process is quite mysterious. But that’s not the point.

While I was going through the ritual of signing away my rights and producing my insurance card, I overheard someone else ask how long it takes before the results are available on “Beacon”.

I learned that LabCorp now has something called “Beacon”, where the results are made available directly to the patient, without waiting for the doctor to release it. (You can sign up at http://patient.labcorp.com/). For 33 years, I’ve always gone to my endo appointments in suspense, wondering what he would tell me about my lab results, then scrambling to come up with some sort of reason/explanation/excuse/justification for them, on the spot.

But I got my results this past Monday. Six days after the blood-draw and four days before the appointment. Actually, I got an email telling me my results were ready, and all I needed to do was click on the link and enter my password.

It’s a weird feeling, knowing that this information is available to me ahead of time. It’s almost like peeking at the teacher’s grade book before the report card comes out. Or opening up an envelope from my top-choice college to see if I was accepted. Or learning if my child will be a boy or a girl.

But in an email. While I’m sitting at my desk at work.

I shouldn’t be looking at this information; it’s not for my eyes yet. I should just wait and have him tell me the results – with some context surrounding it (and more, if necessary). That’s the way it always works.

Nobody wants to hear of a diagnosis by text message. Nobody wants to hear catastrophic news by email.

– – –

Let me back up a bit, and tell you what these labs were all about.

Sure, there was the A1C. I’m used to that one, though I had no idea what to expect.  In the early November timeframe, I was doing great with my blood sugars. And at one point, a CareLink report (over a one-week duration) pinned my average blood glucose at a number that equates to an A1C of a 5.9.  Now, I know I haven’t revealed my A1C here before, but I can say that I’ve never had an A1C that low since diagnosis.  But that was over a glorious one-week period. I knew then that I wouldn’t be able to (and know now that I wasn’t able to) repeat that sixteen times over. I also know that the last three months have yielded more serious lows and more sustained highs than I can remember in a long time. So, in other words, my A1C was a total crapshoot. I couldn’t even make a guess.

But there was also the TSH — the measure of whether Thyroid Stuff Happens.  At my last appointment, they said my TSH results suggested I increase my Synthroid dose.  I objected, because I had just refilled my prescription for the current dose, and changing the dose would mean my earlier co-pay is wasted. I admitted that I’d not been waiting the requisite half-hour after Synthroid before eating, and that perhaps this was the reason for that test result. So I promised to alter my routine to get that proper waiting-period, and we would re-test the TSH in six weeks to see if I still needed a dosage adjustment. It turned out that the result was fine and I could stay on my 75 mcg/day.

And finally, there were the couple of tests for celiac/guten (in)tolerance that I had requested.

The A1C had me concerned. I’ve dealt with A1Cs before, and know what (I’m supposed) to do about it. The celiac ones had me worried – thoughts of de-glutenizing the house and the family seemed overwhelming. The thought of having everyone change their diet because of me was guilt-waiting-to-happen (especially since my kids are allergic to peanuts, but I still eat peanuts in the house – with no ill effects to anyone).

Surely, if there were a problem, I’d get a phone call from the doctor immediately, right? Or perhaps not. It’s not like someone will look the lab results and say Holy crap! This guy’s got diabetes! We’ve got to get him to the Emergency Room NOW!

Could I bear to see these results, sitting alone at my desk at work, without any sort of rational-headed medical professional or compassionate been-there-done-that bearer-of-news across from me? I hesitated, briefly.

Then I opened the email, clicked the link, and entered my password.

My A1C is exactly what it was the month before. It’s what I categorize as “OK” — not quite where my personal goals want it to be, but not somewhere that causes worry either. (And not a 5.9!)

My blood glucose at the time of the lab draw was 117 mg/dl, which LabCorp considers “High”.  Eff You. I’m fine with that.

My proteins and calciums and albumins and globulins  – whatever they are – were fine.

Both celiac tests were “less than two”. A negative result is considered zero through three.

Jan2015-labsI’d like to know how much less than two, because I know people have some degree of gluten intolerance even without any sign of it on the blood test. So while this is, in a sense, a relief, it still leaves a bit unanswered in my mind (like: is it gluten, and if not, what the hell is making my whole digestive tract so funky?).

And the TSH — well, the result is “high”, which means I don’t know if my Synthroid dose is good enough or not. (I interpret “high” with a grain of salt, just as I interpret that 117 mg/dl or the acceptable A1C). But I’ve had more dosage increases on that stuff in the last couple of years than in the couple of decades prior. Maybe my thyroidometer is at 35,997, just holding on long enough to crap out after the 36,000 mile warranty expires. (That’s the way it always works, doesn’t it?)

I swear, since I turned 40 almost a year ago, the aches and pains have increased dramatically. Muscles and bones and organs and glands that used to work well (well, except for the obvious one) are getting rusty and creaky. I’m really becoming an old man.

So anyway, I have my results. And on Friday I have my endo appointment.

I’m OK with my lab results, but if I weren’t, would this be the opportunity to start scripting and rehearsing my excuses now?

When he tells me the results, do I fake a reaction — as if I walked into a surprise party that I’d figured out already?

Will I walk away from my appointment with the renewed (but short-lived) motivation that always comes after an endo appointment? Or will it simply come off as a waste of my time, learning what I already knew?

Getting my results ahead of time is uncharted territory.  And it’s a lot weirder than I’d ever expected.

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Posted on January 22, 2015, in Diabetes. Bookmark the permalink. 7 Comments.

  1. Scott, I guess it is weird, in the beginning. But don’t forget: This is YOUR data. You have every right to see it without waiting for the doctor to tell it to you. How you react to it is a personal thing. But I think of it as equalizing the conversation a bit. Now you can talk to the doctor about the results from more than a “I just found out about it because you just told me about it” perspective. You have time to formulate questions, if something doesn’t make sense. I hope that helps.

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    • Yes, I have the right to my data, and I think that’s why they now release it. And he doesn’t talk much about the lab results anyway (A1Cs are expressed as a passing thought – he’s much more interested in the detailed Carelink data).

      Still, it was kind of odd… we were looking at the Carelink data and he says “Your A1C is fine…. wait a minute, did I even look at that or was just your blood sugars? [pulls a page out of the folder]. Your A1c is X.X. Yup, that’s fine.”. And I waited stupidly, letting him do his job of looking at the number.

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  2. What you had to say about accessing data before your doctor is really an interesting issue! My husband was just talking about this yesterday — getting your lab results or X-ray results before your doctor gets them. He’s a family practice doc and one of his partners reported that one of her patients got a X-ray report stating that she has a pituitary tumor. Most of these are benign apparently but they felt terrible that the patient had to endure such frightening news without their doctor to help interpret it. The patient called and the doctor hadn’t even seen it yet. What a dilemma! It makes sense to me to process the results in the presence of a doctor but that long wait can be excruciating. Getting info through the medical system can be so slow!

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  3. My doctors office has had this for years. I can log into their system to get my test results, email my doctor, request script refills, and view my medical history. I can even pull up graphs of things like lab results, weight, etc over time and see how they’ve gone up and down. I really like having this available, but then again I’ve never been in a position where I’m waiting for potentially worrisome test results either.

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    • I would love to get my historic data (even if limited just to stuff I’ve seen before). My endo doesn’t have it online, and I keep lousy records myself. A1c and TSH (Thyroid) have changed a lot over the years. My weight, though, has been relatively consistent.

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  4. Something about this sounded very familiar, and it turned out I wrote about it in spring 2014 about how this is all mandatory now. http://www.healthline.com/diabetesmine/celebrating-patient-access Anyhow, I hear you and would probably feel the same way about seeing lab results “ahead of time,” before going in to see my endo who has historically announced the results and interpreted them for me. That’s the biggest issue, to me — not being able to fully understand what they mean, and in the correct context, and in turn stressing myself out over it. I wonder if it’s kind of like turning to Dr. Google to diagnosis every ache and pain, and reading about every possible affliction under the sun that could mean death… when it turns out, it’s nothing to worry about. Interesting issue, and I am curious as to what endos think about this, especially if it brings on more questions and concerns that take up energy and time. Or maybe it’s better, because we’re becoming more “empowered” and literate in these lab results. Opinions probably vary. Anyhow, thanks for writing this. Great post!

    Liked by 1 person

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