The truth is that it feels like I’ve lived around people with diabetes my whole life. My father became insulin-dependent while I was away at college. I still remember the distress in his voice when he called me to tell me. You see, he was an Internal Medicine doctor. I now understand why he was confused that he couldn’t control his glucose with just diet and exercise. “Anni,” he said, the alarm obvious in his voice, “my sugars are out of control.”
I had no real understanding of what that meant. I soon discovered, for one, that our family would forever embark on a life of having candies stashed everywhere – in the car, his sport jacket pockets, in the bathroom next to diastix (no meters in the 70’s) – and of always being alert of signs of hypos, frantically waving over servers at restaurants saying, "We needed crackers or OJ now."
In addition, I learned that my father’s oldest sister had diabetes, also insulin-dependent and with adult onset. We did not see much of her, a spinster who lived a day’s drive away and kept to herself. Apparently, she also did not follow doctors’ orders. She lost a leg to amputation and, some years later at age 75 or so, died of diabetes complications. I was told of this and, to be honest, it was the amputation (with the mention of gangrene) that really made an impression on me!
I suppose I should mention that about 20 years ago, my best friend (since 7th grade) suddenly became a size 6 (at 5’7” and after a rapid loss of 30 lbs. to 104). She loved her new figure, but she didn’t feel so great. You guessed it: a diagnosis of T1 in her early 40s (after a miserable 6 weeks on metformin and no results). I’ve since watched her test before and after meals, been there to help her treat hypos when we were taking walks and she'd misjudged her bolus for lunch, and heard tales of waking up high and having to call in to work and saying she’d be late. She had to bring her BG down before going in. Let’s just say that, once I was diagnosed much later, between finger sticks, syringes, insulin, and counting carbs, none of it was new or phased me.
Fast forward to late October 2010 and my annual physical. My internist asked during the consult whether I had any new symptoms. All I reported were an odd tingling sensation and numbness in my finger-tips and a very uncomfortable, though intermittent, “pins and needles” feeling in my heels and the balls of my feet that lasted up to ten minutes. She made notes, continued her exam, and administered blood tests.
You could have knocked me over with a feather when she called three days later to say my Fasting Blood Glucose was high. She wasn’t really impressed with a 105. That’s far from the diabetic range at 125. Two weeks later my A1C was an unimpressive 5.4. Again, from her point of view, no worries. I was slightly plump with BMI of 24. “Lose a little weight, step up the exercise, and you’ll be fine.”
But warning bells were ringing in my head. I kept thinking of my father’s phone call in college. “My sugars are out of control.” And my aunt’s leg: “gangrene, amputation.” Eeeewww!!!!!
The doc wasn’t worried, but I was.
The first place I landed was here, at the diabetes.org site and its online community, where I found a ton of valuable information and great, experienced who were friendly and willing to help me. “Go buy a glucose meter,” they said. “Test, Test, Test,” they said. “Read All About Carbs,” they said.
I did all of the above, and I became even more concerned. While my fasting glucose readings were not too bad, my peak numbers after meals and my numbers at two hours were much worse: over 200 on a regular basis. Exercise brought down my glucose nicely, but the only thing that made my numbers normal, i.e. under 140 at two hours after the first bite of eating, was eliminating carbohydrates almost altogether.
I began to lose weight. Virtually eliminating carbs and exercising aerobically with high heart rate for an hour 4-5 times a week will do that! But my menu was so limited, it was getting ridiculous. And all the books said that as a type 2 “PRE-diabetic” I should be able to eat more carbs than I seemed to be able to. So much for books! My advice and the advice of others on this site who have been at it longer than I have is: always go by your body and your meter, not what some book says!
Eventually, I inundated my internist with menus accompanied by meter readings, questions about my family history and high BG readings despite weight loss and exercise (which seemed to have had overall NO effect on post-prandial BG’s). She had only “heard of” LADA/1.5 Diabetes and said, “Wow, this is a lot of data.” She then proceeded to ship me off to an endocrinologist. This turned out to be a great move on her part!
The endocrinologist downloaded my meter data (about six weeks’ worth) and, on the spot, declared me “not PRE-anything” but diabetic on the basis of all of the “casual” readings above 200.
She sent me for a C-peptide. I was told to eat a high glucose meal and arrive at the lab one hour after first bite. M BG was about 211 according to my meter. The C-peptide, according to her, showed me to be “not insulin resistant, but insulin deficient.” A GAD antibody test was negative, so I was not LADA/1.5.
The endocrinologist labeled me a type 2 for insurance purposes and put me on Onglyza to help me eat some carbs. It helped a little bit. I could eat maybe 15-20 per meal and kept my intake under 75 per day. Better than just eating lean protein and non-starchy veggies!
Even so, I was still really bugged by not knowing what type of diabetes I had. My “day job” is in market research, so I’m naturally curious – a detective of sorts. I also grew up in a medical family. Not only was my father a doctor, but both of my grandfathers were, as well. I was not happy with being this odd sort of type 2 that did not fit the mold. Everything I read said that type 2 virtually always starts with insulin resistance and any insulin deficiency tends to follow.
Well, I found descriptions of the MODY variants of diabetes online and asked my endo about genetic testing. At first she said no because it is very expensive and because she could not justify the referral since I was unable to provide evidence of three consecutive generations of diabetes on my father’s side, just two (my father, his sister, and me). So, it was back to the family tree to do some digging!
I will keep the rest of the story for my next blog, but I found some really fascinating stuff, including a real-life Hollywood star!
For now, I’ll just say that I did in convince my endo to refer me for testing. The test was positive for the MODY 3 defect in the HNF1-a gene – well, duh! I wouldn’t be writing this blog otherwise, right? Next, I was off to the races learning about this really intriguing variant of diabetes!
Please join me here regularly to find out more about what MODY diabetes is, what causes it, what the various types are (11 variants, I believe now – with 6 or 7 different genes involved), and more research being done all the time.
But if you were diagnosed with diabetes or suspect you have it, have no signs of metabolic syndrome (no high blood pressure, no high cholesterol prior to diagnosis, normal BMI) and on one side of your family have a strong family history of diabetes: stay tuned. You may want to learn more about MODY!
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