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.

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Brian - At least you now know more than before the test. It’s unfortunate that you don’t have the certainty that a positive result would have have brought. More importantly you know how to take care of your blood sugar and with consistent monitoring you know your way of eating gives you healthy results.

One set of BG results that you posted showed that you never (rarely?) go low. That is a curious thing for me to see. Even when my blood sugar results are stellar, I still experience mild lows.

I’m glad your doctor is savvy about giving you a diagnosis that will set you up with the best access to pumps and CGMs. If and when the artificial pancreas gets approved, it will give you access. It’s too bad that all diabetics do not have access to CGMs. I know not everyone wants one but the education it can give about the actual cause and effect of eating certain foods is important.

I think identifying yourself with T2D is a reasonable conclusion. Thanks for sharing this unusual path you’ve taken.


Thanks Terry. I actually don’t think I currently want or need an insulin pump or CGMS. I think I have had good success with my diet and insulin regime and I think all of us would like to minimize the impact of diabetes on our lives. It is not unreasonable to think that everyone newly diagnosed would benefit from a CGMS as a way of vividly seeing how the food we eat effects our blood sugar.

And I really don’t have an explanation for my blood sugars. I still have chronically high fastings and seem to have hypo symptoms and response when my blood sugar falls below about 100 mg/dl. And I always have an argument about lows with my endo. I will admit that over the last 90 days I did have a single low in Boston while at the ADA Scientific Sessions. It was upon waking and I had walked 25,000 steps the previous day. But it was a 66 mg/dl and when I repeated the test before treating it was 69 mg/dl. In the world of lows, that basically doesn’t even count.

So there remain a lot of seemingly strange things about my diabetes.

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Brian, I’m sorry to hear you didn’t get a diagnosis. I have heard from a couple other people in similar situations to yours who had the same experience: family histories of people with both Type 1 and Type 2 diagnoses, insulin sensitive, responding strongly to sulfs but no hit on any of the tests. You are lucky your doctor classifies you as Type 1 because the insurance coverage is so much better should you need stronger tools in the future, or even test strips when you get old enough for Medicare.

The person I spoke to at Joslyn some years ago, who were looking for families with these kinds of histories in order to discover other forms of MODY said they believed there were dozens more of them that hadn’t been identified. Unfortunately, I didn’t have enough living relatives for them to let me participate in the study.

But your graph makes it clear that you have excellent control, which is really all that matters. Several of the MODY forms come along with other serious conditions. like congenital kidney malformation, but by your age you would have discovered them already if you had them. Otherwise, it is just a matter of avoiding the damage caused by the high blood sugars.

Re the difficulty in achieving hypos. I had that for many years, including all the years I was injecting insulin (both basal and fast acting.) I got to where I figured I wasn’t capable of having hypos since I experienced such a dramatic counterregulatory response. But after something like 8 months of using Prandin (repaglinide) I had two severe hypos (in the low 40s) that were very hard to raise. When the hypo awareness went, it went very dramatically. I went from having lows that never dropped below 68 to having those 40s with nothing in between. The hypos happened after my control had gotten very good for a few years, so you should never assume that you can’t have a serious hypo. My readings at the time I had those serious hypos were very much like what you just posted except that I could get up to the 260+ level if I didn’t take the Prandin and overdid the carbs.


Thank you Brian for posting. It is indeed interesting that lows do not enter your realm :smile: A blessing, really!
I relate with having to be diligent in asking/begging for further testing of any type related to any condition.
Access to specialty or detailed testing is akin to a game of Dungeons and Dragons, where one seemingly has to merit access to portals in order to proceed.
It is, however, the squeaky wheel that gets the oil, and at least your doctor DOES open said portals.


On your blog, you write that you didn’t test positive for any antibodies, therefore you aren’t autoimmune-caused-T1.

I personally disagree with the use of antibodies as a sole criteria to classify as T1 vs T2. Yes, there is a high correlation between several known antibodies and T1. But there are many non-diabetics who have those antibodies too. And there are T1’s that don’t show any known antibodies.

I think their is a usefulness to antibody testing, and if it gets a Type-Unknown diabetic to correct treatment faster then those tests are useful. But after a correct treatment is found I’m not so sure it matters too much what the antibody testing result was.

I belong more to the “if it walks like a duck and quacks like a duck” school. If T2 medicines are completely ineffective but there is a high sensitivity to injected insulin, then it’s T1.

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I don’t disagree with what you say. But I am not really insulin sensitive and I use 50-70 units of insulin a day. And while my endo may treat me like a T1, Medicare and my insurance still define T1 as antibody positive and insulin deficient.

Well, it counts for me. My knees start to lock up at < 70 and that “Eat now or die!!!” feeling starts to come on. I’ve certainly had worse ones but with a load of insulin on top pushing down, anything under 70 gets my attention quite adequately.


Being totally and utterly selfish I am glad we don’t lose you as a T2 advocate, Brian. I am also glade you got the ideopathic T1 diagnosis for the sake of your future.


You’ve been a wonderful advocate for all of us, no matter the type.
I’m sorry that the puzzle pieces aren’t fitting together as well as you’d hoped, but am glad you got an additional puzzle piece anyway.


how about 23andme testing?

At this point I suspect that 23andme wouldn’t provide sufficient detail to be of any use. And they no longer provide health assessments so you would have to do your own research. And things are really, really complicated so even if I got a clear picture I would be left in utter confusion about what to do. To give you an idea of the complexity of the genetics, here is a table of the identified genes of Type 2 from DeFronzo’s recent “Textbook on Diabetes Mellitus:”

Thanks for sharing @Brian_BSC! I admire your persistence in the face of the medical resistance you’ve encountered. The T2 Dx is good to confirm and I’m glad you can continue your activities along that line! If your fasting is high, have you tried more basal? It occurs to me that Toujejo (Touyayo?) is supposed to be more concentrated so perhaps that would help smooth things out. If shots> 7U are absorbed more variably, perhaps smaller shots of more concentrated insulin, if in fact it is more concentrated, would be effective? Or maybe you’ve already considered that? Good luck continuing your diabetes science experiment!!

I’ve actually looked into alternatives. I seem to have two problems, first is the chronic fasting blood sugar and my body seems to fight against being below 100 mg/dl. It doesn’t seem that additional insulin affects the situation and I’m not clear concentrated insulin will make any difference. My other problem is that Darn Phenomenon.

And I am just a bit angry over Toujeo and the concentrated insulin that has hit the market. Toujeo is a concentrated form of Lantus which is U-300, it is three times more potent than Lantus. It will likely be useful for people who are taking more than 50 units at a time since it will enable them to move from multiple injections to a single injection. And as you note, Bernstein does say that small shots are more effective.

But I feel like the insulin companies have colluded to manipulate the market. First the price of U-500 Regular insulin jumps by like 500%. And then, SURPRISE, we see companies releasing concentrated forms of insulin like Toujeo and a U-200 version of Humalog. I would have been pleased if these new concentrated insulin forms were priced at a modest increment over U-100, but NO. Both Toujeo and U-200 Humalog have been priced to be the same per unit. First, we see industry for no reason using its power of monopoly change the price of U-500 by 500% to be the same cost per unit of insulin and then industry establishes a price for the new concentrates at the higher level. I see absolutely no reason these companies should be allowed to collude in the market.

So at least for now I’m going to listen to my anger and refuse to use the products (and at least for now they are absurdly expensive for me as branded non-preferred drugs).

[quote=“Brian_BSC, post:12, topic:46940”]
And things are really, really complicated so even if I got a clear picture I would be left in utter confusion about what to do.
[/quote] i thought you already knew basically what to do since we know what safe ranges of bg are. would you really change what you are doing now based on mody testing? you would always use bg as a guide, right? i find reading research interesting and am not frustrated by complexity. but then i am not in a danger zone yet, so maybe i can afford to be more laid back. you can still read up on your snps using current 23andme raw data and snpedia.

I guess what I was trying to say is that knowing what genetics I have is unlikely to help me with treatment. It might show that I have some genes which increased my risk and I might know that I have risk of certain signaling problems for instance. But it isn’t going to suggest that I would be ok if I just stopped insulin, which is what a MODY-2 diagnosis might have done. And because I have so many people in my family with diabetes I already know it is basically genetic.