Words Matter – Why You Can’t Reverse Type 2 Diabetes

Don't Say "Reverse Diabetes"
It Makes My Hair Catch on Fire!

I feel constantly bombarded with claims that Type 2 diabetes can be reversed and prevented.  I even hear absurdities about how Type 2 diabetes can be cured.  I expect these things from the scams that we all see in our email inboxes and across the web.  But what really sets my hair on fire is the use of these words by people who should know better.  Medical professionals and our government should know better.  And unfortunately when the leaders of the conversation send out a confused message our entire society follows them down the wrong path.  So why does it matter?  It matters because these words communicate meaning and concepts and when these concepts are inaccurate and misleading they can be harmful.  It can leaves people with diabetes confused about their condition, encouraged to pursue bad goals, feeling blame and shame that they “didn’t do it right” and full of false hope.  Today, I'm going to focus on the phrase "Reversing Diabetes" and end with a plea that we stop using the term "reversing" and use the term "remission."  Nobody has ever shown that once you have Type 2 diabetes that you can reverse the condition to become non-diabetic.  All we can do is slow or stop the progression.  Let's start using the term remission when we successfully manage the symptoms of diabetes, we all know that our diabetes is still there and can and will rear it's ugly head if we stray from our treatment.

The Results are In - Does Brian Have MODY?

I had posted before about getting the MODY test, a test that would determine if I have an infrequent form of diabetes that is due to a single genetic defect.  The results of this would explain why I never responded to Type 2 medications and why I always have had a chronically high fasting number.  I had been asking for this test for more than five years and finally been granted the test.  I got the test in May of this year and had waited for nearly two months for the result.  My feelings on this matter have been mixed.  I have always wanted a better understanding of why I got diabetes and exactly what kind of diabetes I actually have can make a difference in assuring I get proper treatment.  But on the other hand I have spend the last decade with an Type 2 diabetes.  I know that we say that "We are Not Our Diabetes."  But type 2 diabetes has become part of my identity and my efforts to advocate for type 2 diabetes would just seem so shallow and hypocritical if I don't actually have Type 2 diabetes.  So if you, my attentive readers wish to learn the results of my test, you will just have to read on.

I'm getting the MODY Test!

In my previous post about what I learned at the ADA Scientific Sessions about MODY, I alluded to my own suspicions that I myself might have MODY (MODY-2/GCK in particular).   You can read more about MODY in my previous introductory post on the topic.  I first became suspicious more than five years ago, but my requests to my doctors were all denied.  I was basically told that I didn't fit the basic screening criteria.  I made several personal contacts to Kovler asking for their assistance or their referral to a doctor competent in MODY diagnosis and treatment in my area.  I actually emailed the principle staff, but my emails went unanswered.  I then tried to enroll in trials, but by this time I had started insulin so I was rejected.  Apparently there is a belief that insulin is not effective (which we will debate later).  And I've been seeing my current endo for 4 years and she is a real patient centered doctor, so she always listened attentively to my requests for MODY testing, but she always felt that my successful treatment with insulin contraindicated MODY-2.

But at my appointment in April of this year things had changed.  New screening criteria had been released by Kovler that explicitly suggested that chronic high fastings were suggestive of MODY.  And there are other things about me which are confusing, such as my seeming total invulnerability to hypoglycemia despite very tight control (my last HbA1c was 5.0%).  Sure some of it may be attributed to my strict regime and very low carb diet, but still, no hypos over a whole three month period?  And I can start feeling hypo at anything below 120 mg/dl.  So on April 29th, I walked out of the door with a requisition form for MODY testing.  AthenaDiagnostics appears to be the only commercial lab in the US doing MODY testing.  This post is about my journey to get that test done.