Would You Like An Autoimmune Disorder with Your Autoimmune Disorder? (Part 1)

I’ve been avoiding it for some time, but I think I just gotta dive in.

I’ll warn you: unlike the first stretch of my narrative, this one’s a lot less satisfying. For one, it’s ongoing, and I’ll warn you right now: as of today, December 12, 2014, the “end” of this story has not really come yet. Read as: undefined resolution. Read as: not-so-satisfying. Not that it hasn’t had some fun twists and turns, but… it doesn’t have the “you’ve got….diabetes!” zing that the beginning of this blog had. It’s a whole lot murkier, and a whole lot less neat.

Plus, you’re going to have to hear a whole lot more about some things you probably never ever thought you’d have to hear about. Like… my uterus. And my colon. (True story: I’d originally written “my vagina” and “my butt” here, but I decided I’m far too much of a lady for that. Psh. Us ladies never mention our butt and vaginas. Class all the way!)

So listen, if all this hasn’t sent you running for the hills yet, I’m just gonna go ahead and give you written permission to stop reading. I can’t say I’d blame you. If I were writing the story of my medical drama, I certainly never would have written it this way. For starters, I’d have written a medical mystery that could actually be solved in a conclusive way. It would be dramatic, but not frighteningly unknown like this one was. There would be far fewer alarmist doctors than I’ve had so far. And my butt would never have been involved at all. Sorry, I mean my colon.

Anyway.

It’s hard to know where to start with this story. I think I’ll start for you all where I started with my doctors – you know, the thing where you tell them EVERYTHING you think might be relevant just in case they catch something that gives them an answer. So, you know, just in case anyone out there reading this wants to Dr. House me. Feel free to email with your theories, etc., – although perhaps wait until I’ve taken the story to the present. I will be open to literally any hypothesis that doesn’t start with “Are they sure it’s Type 1?” (Joke there, for those of you who have been reading since the beginning.)

Anyway.

At the end of July of this year, our family went on a vacation to Austria, Slovakia, and Germany.  It was good times! I’ll include some pictures, because why not?

IMG_3127 IMG_4360IMG_4459 IMG_4273

I like to think in this last one I took the only picture of existence of Father Time.

Anyway, mostly this was a great trip, except the part where the security people at the airport thought my dexcom was a music player and insisted on sending it through the scanner (which it’s not supposed to do) and my boyfriend had to start yelling the word “Insulin!” at them to get them to stop, even though, as all you clever readers know, the Dexcom has nothing to do with insulin.

The other bad part was the last day, where instead of exploring Munich with my family, I lay in the bed of our hotel room, playing host to a pretty nasty fever. I had some stomach issues, a temperature, was exhausted, and my blood sugar, of course, wasn’t playing nice. Fortunately, the fever had at least subsided by the time we got on the plane to go home, so I made it to the states in one piece.

A few days later, my blood sugar was really not coming down – running super consistently high. Remembering the many doctors who had told me that consistently high blood sugar that isn’t caused by, like, diet or being pregnant can often be a sign that something else is wrong in the body, I decided to book an appointment with my GP. She wasn’t available, so I saw another GP, who chastised me for not coming to her as soon as I got off the plane, ran some tests (NOT a white blood cell count, alas!! <– That will become relevant later), and assured me I probably had something viral, but it was probably over or ending, and that I was going to be just fine.

If only.

Within a few days, my next, and only notable symptom started up. I started getting these rolling cramps that I foolishly assumed were PMS cramps, even though they kinda felt like they were in my lower stomach rather than my lady parts. They got pretty bad – I remember laying in bed thinking “well SHIT this hurts” and wondering how much advil you had to throw at this kind of problem before it resolved itself. In my case, no amount of advil seemed to do the trick.

Then my period came, but the cramps didn’t go. That’s OK, I thought – they’ll go as soon as my period’s over.

Except they didn’t. A week after my period, I had to admit that these probably weren’t period cramps; considering I’d now had them for 3 weeks straight and I was solidly in the only portion of my mouth I could count on not having PMS-y symptoms.

So, I played good little diabetic and went back to the doctor – this time to my regular old GP.

She didn’t seem too concerned – remember, she’s not an alarmist by nature (which is an excellent quality in a doctor, but tough to stomach when you know you have diabetes but your doctor is telling you it’s not true. So for her not to be too concerned a second time around carried a little less weight, I’ll be honest.) She told me it was probably just a little hormonal imbalance, but since I’m a diabetic, I get the extra-thorough tests they don’t give to all the healthies, so she took a bunch of blood and told me she’d call me if anything came back funny.

The next day, I was standing in a Nordstroms getting my bridesmaids dress fitted when, you guessed it, that call came. Why do the dramatic events of my life occur when shopping for dresses?

Over the phone, she told me that one blood number had, indeed, come back ….mmm… “abnormal”. Unlike my first appointment to the GP earlier in the month, this time my doctor had called for an Auto Differential test, or a measure of the different white blood cell counts in my body.

And one of them had come back, oh, just a tad abnormal.

Your body has a team of white blood cells which react by multiplying when you are sick or unwell. What’s kind of cool about them is that doctors can know, based on which ones are reacting, what’s kinda wrong in your body. When all your white blood cell counts are off, that means something very different than just a specific white blood cell count that’s gone haywire.

In my case, I didn’t have overall elevated WBCs, just one. Here’s a word I learned that day in the Nordstrom’s that I’ve come to be all too familiar with in the intervening months: Eosinophils. My eosinophils were elevated.

How elevated, I asked.

Um. Pretty elevated, my doctor responded.

You know things are bad when a doctor tells you your blood count has come back SO bad that the first thing she actually wants to do is repeat the test to make sure it wasn’t a lab error. Like, when the first response is “this is so bad it can only be a mistake,” … this is not a good sign.

Eosinophils are white blood cells that tend to indicate one of three things is happening: inflammation, allergies, and/or a parasite. And, like, that’s about it. There’s a few more things, but most of them are really bad, like cancer… and much less common. Usually, its one of the big three.

Here’s the problem, though… eosinophils usually show up as between 0-5% of your blood. Zero is great, but for most people it’s usually more than zero, because most people have some kind of allergic response happening at any given time – like, to dust, to pollen, that kind of thing. Between 5-10% EOS (eosinophils) and doctors tend to assume that you’re having an allergic reaction. Over 10% , like in the 10-20% range, and they start to think “hmm… something worse is happening”, and at that point the answer is maybe really bad inflammation, but more likely something crazy like an intestinal parasite. I know, right? Gross.

Well, my eosinophils had come back at 45%.

You gotta hand it to my body, it has a flair for the dramatic. My doctor honestly didn’t even know what to make of that number. I imagine her looking at a chart in her office: Eosinophils 0-5%: no cause for alarm. 5-10%: Allergy? 10-20%: Montezuma’s Revenge? And then it just…ends. In my imagination, this magical chart doesn’t even go as high as 45%.

She seemed, as so many doctors seemed in the intervening weeks, to be shocked I was even standing upright at this point. “But…besides the stomach cramps, you’re feeling OK?” she kept asking. Like I would suddenly remember that I hadn’t stopped throwing up for three weeks or something.

My insistence that, besides those very gnarly stomach cramps, I did indeed feel well, convinced her that it had to be a lab error. She requested (insisted?) that I come in the next day to have the test repeated.

Which I did.

And, as you already have guessed, dear reader, my Eosinophils came back at a hearty 45% once again. Way to stand your ground, boys! (I know I have a few med students who read this, so in case you guys are interested, the EOS absolute value was 4,400. Yes, that’s a number in the thousands.)

So that’s how it started. I feel like I’ve already rambled on enough at this point, but now you’ve got the foundation as I had it: That potentially related fever, the stomach cramps, the crazy eosinophil count two days in a row. So high that my doctor was worried, like, beside herself worried.

And oh yeah, I’m a Type 1 diabetic – does that play a role? And don’t forget, (and maybe some of you had already thought of it! Extra credit!) I was two months out from a cancelled clinical trial where a mystery drug was pumped through my system. Could that have had something to do with this?

Dr House? Are you out there?

Turns out, no stone was to be left unturned in the intervening week. All of a sudden, my full-time job was to be a patient. Again.

Another revelation: it’s a lot less satisfying to be sick when they don’t know what you’re sick with. Like…when your blood sugar is 500, you have diabetes. Guaranteed. When your Eosinophils come back at 45%, it isn’t quite so cut and dry. But hey, the resulting adventures make for great blogging! EH!?

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