"Mild" forms of Diabetes that Kill

I recently had an interesting discussion with a researcher who thinks our family history may suggest that we have MODY-2 rather than the HNF4-a MODY which I'd previously been told sounded likely. Even better, this researcher is running a study that will offer gene testing to me and my slim, fit 24 year old daughter whose post meal numbers run in the 130 mg/dl range for many hours after eating.

So that got me looking at the literature on MODY-2 and combing my email files for people who had reported having it. What I found was interesting.

MODY-2 is caused by defects defects--in the GCK gene that plays a significant role in making beta cells secrete insulin in response to rising blood sugars. There are many different defects that cause this form of diabetes, affecting different amino acids in the DNA that makes the gene.

But the diabetes the gene causes is always described in the literature as "mild" and the advice given is that no treatment is needed except, perhaps, carbohydrate restriction. Further reading reveals that "mild" means that this form of diabetes rarely produces the classic microvascular complications of diabetes--retinopathy, neuropathy, etc.

This sounds good, doesn't it!

There's only one problem. People whose families carry this gene tell me that many of their relatives die of heart attacks in their 50s. That's the story in my family, too--two uncles dead before 60 on the side of the family that carries the diabetes gene. One of them was a professional singer and dancer who had been on TV every week only a decade or so before his death, so you can imagine how fit he was. But that didn't keep him from dying of a first heart attack at 58 though he had no earlier warning of heart disease.

If that's "mild" diabetes maybe we better rethink the whole concept of "mild." Dying at 59 with perfect retinas is not exactly my idea of health.

I suspect that the problem here is that MODY-2 is often diagnosed in children and teens, at which time they cause "impaired glucose tolerance" or slightly abnormal fasting blood sugars. So at that time of life, they are mild.

But if they are anything like the diabetes I have, as a person gets older these "mild" forms of diabetes accelerate. In the 40s or 50s, the person may be going well over 200 mg/dl after every meal. Yes, the blood sugar comes back down to the 100s at two or three hours after eating, making them look "mild" on an oral glucose tolerance test or fasting glucose screen but those post meal spikes are high enough to cause damage, especially to the vagus nerve which controls vital functions like heart beat and blood pressure.

In addition, in the side of our family that carries the "mild" diabetes gene, there is a very high prevalence of severe disc problems. I have one that has really limited what I can do since my discs have ruptured. My dad had this as did several uncles. Only recently did I learn that specialists now think these disc problems may be caused by blood sugar problems that affect the blood supply to the disc tissues, weakening them.

This isn't a fatal complication, but the months my one uncle spent in excruciating pain in a full body cast didn't do much for his quality of life, and I'm not thrilled with the limitations that my disc injuries place on my doing just about anything I'd like to do be it swimming or carrying my own suitcase!

Knowing what I know now, I wonder if treating my "mild" elevated blood sugars more aggressively when they were first noticed in my 20s might have kept me from developing the disc problems later on. I was fortunate to get a relatively early diagnosis when my blood sugars started surging into the mid 200s and I adopted a policy of striving for normal blood sugars which probably prevented worse things from happening, but that only happened because I read widely and refused to accept my doctor's assurances that mid-200 mg/dl blood sugars after meals were "nothing to worry about" because my fasting blood sugar was "only" 108 mg/dl.

So my advice is this: If you are told you have a "mild" form of diabetes don't think this means you can ignore it. take it seriously. Yes, you are much more fortunate than people who have severe forms like Type 1. But if you neglect your "mild" diabetes your absence of "classic" complications might not mean much since ignoring high blood sugars after meals might just give you a fatal heart attack.

And my grandmother on the side of the family that carried the gene did die of diabetic kidney disease in her early 70s, which suggests to me that no matter how "mild" your diabetes may be, if you live long enough it will eventually cause microvascular complications.

BOTTOM LINE: No matter how "mild" your diabetes might be, go for completely normal blood sugars to ensure completely normal health!