Saturday, November 5, 2016

NOT All in My Head ("Normal" is All Relative)

While I’ve tried hard to not complain as the weeks of the investigational study have worn on, the truth of the matter is that I really haven’t felt well -- at all.  I will be the first to say that I know it could be worse -- I could be dealing with far greater health issues than those I brought upon myself by volunteering to participate in the investigational study.  And…I could be dealing with chronic health issues that are unlikely to ever improve.  I have a fairly high degree of confidence that I will start to feel better now that I have returned to a strictly gluten free diet.  It is for these reasons that I have tried not to complain.

I think those who have followed along closely have a pretty good sense of the fact that the investigational study has taken more out of me than I anticipated.

Since I decided early on not to try not to complain, I haven’t talked that much about the investigational study -- or about how I feel.  But, every now and then, someone asks specifically.  And in those instances, as in my blog, I have tried to answer specifically and openly and honestly. 

A few days ago, someone I hadn’t seen in a while I asked me how things were going with the investigational study.  It was clear that she had a vague understanding (or maybe a bit more) of what the investigational study had involved, but it also became clear relatively quickly that she did not really have a good sense of just how hard it has been.

It gave me pause when, after I explained that I had gotten to the point that I was feeling much like I had felt prior to my diagnosis with Celiac Disease, she asked if it was possible that it was all in my head.  I don’t think she was trying to be difficult, or to discount what I was saying -- I actually think she really wanted to know.  

As I considered her question, I realized that at one point, I, too, had questioned whether or not my symptoms (or some of my symptoms, at least) might be in my head.  That feels like a million years ago now…and is a thought that slid slowly, seamlessly from my mind in the face of debilitating fatigue, shortness of breath on a single flight of stairs and an ever-present lightheadedness and unsteadiness that left me feeling as though the center of my world was ever-so-slightly off-axis.

At some point, another voice took over, counting down the gluten doses, encouraging me, reminding me that there is a child much like my own daughter out there who needs a treatment for Celiac Disease just as desperately as Susan needed a treatment for her peanut allergy.

I'm pretty sure I got briefly lost in my own thought, and when I returned to the conversation, I could tell my friend's interest was waning, so I simply shrugged and agreed that yes, it was possible that it was all in my head.  And I thought -- maybe it IS all in my head.  After all, anything is possible.  But, I really didn’t believe that any of it was “in my head,” and the lab work results that were waiting for me when I got up one morning earlier this week further suggested that none of what I have been experiencing is in my head.

It was 5:00 am, and I was up with my oldest daughter, who rises at the insanely early hour of 4:30 am every day so that she can skate before school, when I sat down to check my e-mail.  I saw two separate e-mails that came in just minutes apart from the University of Chicago's MyChart e-mail address.  Not being sure what to expect, but very interested, I quickly logged into the hospital's MyChart system.  

I opened the results of the CBC with Differential and Platelets and the Comprehensive Metabolic Panel (CMB) and with my still-foggy morning brain, I quickly scanned the results, looking for results that fell outside the normal range.  Nothing.  Nothing?  I couldn't believe it.  How was it possible that I could feel so unwell and all of my lab results could still be within normal limits?  

And then, in a moment of clarity, I realized I should compare my lab results from the blood draws taken during the investigational study intake to my current lab results.  And in doing so, I saw changes that I felt relatively certain were...if not statistically least relevant.

My total blood cell counts -- for both white blood cells and red blood cells -- were down, which is suggestive of blood loss, internal bleeding.  My white blood cell counts, which were initially 5.3 (with a normal range of 3.5 - 11.0), were at the very bottom of the normal range, at 3.5.  My red blood cells, which were originally on the high end of the normal range (3.88 - 5.26), at 5.01 had dropped to 4.71.  Not surprisingly, my hemoglobin had also dropped, from 13.9 to 13.1 (normal range is 11.5 - 15.5).  While definitely not anemic (yet), my total blood cell counts definitely were moving toward values that would lead to a diagnosis of anemia.  And maybe, just maybe this helped explain my extreme fatigue.

I also noted that my eosinophils had increased from 2% to 6%.  With a normal range of 0 - 7%, it seemed likely that such an increase was truly statistically and maybe even medically significant, and given that I know that elevated eosinophils can be indicative of allergic reactions and/or other forms of inflammatory autoimmune responses, I thought that result just might be significant.

And then, for the first time since starting the investigative study, I decided it was time to visit Dr. Google for some help in assessing a related value in the same section of the results -- neutrophils.  I noted that my neutrophils had decreased, from 63% to 47%, with a normal range of 39% to 75%.  It struck me that that was a big decrease, and I could not help but notice how close my current result was to the low end of the normal range.  And so, I googled low neutrophils.I learned that people with low neutrophils often have difficult fighting off infection, which made sense given the cold I got early in the investigational study that I hung on and on, and on.  And then I went a step further and googled causes of low neutrophils.”  I discovered that there are many causes of low neutrophils, including...Celiac Disease.  Ah, I thought...

Later, as I was leaving for lunch with a friend, I tucked the lab results into my purse.  My friend has a lot of medical expertise, and I found myself thinking it might be interesting to see if she saw the same things I did...and she did.  

Which left me thinking that surely, it must NOT all be in my head...

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