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.

ADA, Me and My MODY (Maybe) - Part 3

Journey to a Miracle
57 minutes + additional information

This is the final installment of my posts about what I learned about MODY at the 75th ADA Scientific Sessions.  You can read the first two installments in "ADA, Me and My MODY (Maybe) - Part 1" and "ADA, Me and My MODY (Maybe) - Part 2."  In this post I'm going to talk about the movie "Journey to a Miracle: Freedom from Insulin" that claims to be "A PBS documentary of a breathtaking cure for diabetes and the lives that were changed forever."

The movie, which is about an hour long, is a real tear jerker, mostly focused on the stories of a small group of children diagnosed with MODY (with MODY-3 in particular) who had previously been given a T1 diagnosis.  Once diagnosed with MODY-3 the children were able to start on sulfonylureas and moved off of insulin.  That is the miracle.

While my heart went out to the children and their stories I felt a bit dismayed at the message of the movie that you can just "cure" MODY by taking a little pill.  The movie portrayed insulin as a terrible life long burden with horrendous consequences.  And then suggested that taking this little pill would "cure" the patients of diabetes and that they wouldn't have any further consequences from MODY.  I'm not so sure of the validity of that message.

The Social Media Side of the ADA Scientific Sessions

[I Am] an Advocate
photo courtesy of DHF

I have to say, I was was impressed with the social media aspect of the ADA Scientific Sessions.  There apparently was a constant stream of events, I attended a few and I'll talk about them.  I also had a chance to meet some people face to face who I had never met before and that was wonderful.  And then the highlight for me was the Happy Hour event put on by the Diabetes Hands Foundation (DHF).  We got to hear my new friend and comedian Chelcie Rice and I had lots of opportunity to meet people and in particular the supporters of DHF.  And the best part was that there an auction of three paintings by Manny Hernandez's very talented wife Andreina Davila and I got to take home the painting on the left.  The vast majority of people from the Diabetes Online Community (DOC) that attended were Type 1.  There were only a few people with Type 2, but fortunately I had the opportunity to meet David Mendosa and Gretchen Becker both whose writings had an important influence on my diabetic career.

ADA, Me and My MODY (Maybe) - Part 2

This post is a continuation of my first post on the subject "ADA, Me and My MODY (Maybe) - Part 1" where it discussed a "Meet the Expert" session on Monogenic Diabetes with Dr. Rochelle Naylor.  Today I'll discuss what I learned on Saturday of the ADA Scientific Sessions when I was fortunate to catch Prof Andrew Hattersley in a symposia on monogenic diabetes entitled "Monogenic Diabetes Matters - Getting the Diagnosis and Treatment Right."  Prof Hattersley had a very good description of GCK that it essentially shifted the entire glucose response curve to the right.   This made the fasting blood sugar higher and it meant that the glucose mediated insulin secretion happened at a higher level than in non-diabetics.  This actually made sense to me as I have observed in my own response.  My fasting blood sugar is about 40-80 mg/dl higher than normal and that although a carby meal will shoot me up over 200 mg/dl I hardly essentially never observed readings at 300 mg/dl and above.  Prof Hattersley also noted that GCK patients will feel hypo at a normal glucose.  This is also something I observe.  And it isn't about becoming "adjusted" to the blood sugar level.  My blood sugars are very consistent, but when I get my blood sugars below 100 mg/dl I start to get that hypo feeling.

History of Diabetes - ADA History Exhibit and Sessions

This was the 75th ADA Scientific Sessions and history played an important role.  In addition to a large display of artifacts and recordings of important diabetes history there was also a special two hour session devoted to "50 Years of Diabetes Research and Treatment."  The session was chaired by Robert Ratner who graciously lent many of the artifacts on display in the history exhibit.  The Symposium had Dr. Daniel Forte give an overview of 50 years of research, Dr. Fred Whitehouse gave a great overview of treatment and Dr. Michael Brownlee gave a perspective as a patient, physician and researcher.  Finally, Kathrym Ham gave a really personal and touching story of her 78 years with Type 1.   There were about 70 Type 1 50 year Joslin Medalists in attendance many with the supporting family.  Dr. Whitehouse specifically recognized all the medalists and noted in particular the family support.  One has to but wonder what role that support had on the long-term success of the medalists.

That sums up the symposium, but if you want to see more of the History Exhibit I encourage you to read more of this post

ADA History Exhibit