Possible MODY?

Type 2
1

Hi! I decided to join after reading several of your posts about MODY. My endo is working on getting me set up to get the 5 gene test from Athena. My insurance supposedly plans to cover it for me. I go back and forth between being sure I have a form of it, and other times I am afraid I’m just wasting time and money.

Basically what the family seems to be dealing with is normal fasting, borderline a1c, and high postprandials. My grandfather had diabetes diagnosed later in life (50s or 60s) and my uncle is dealing with the same. I recently discovered high postprandials in myself after having a few symptoms last year… if I’m careful what I eat, I’m usually okay, but for instance I ate a serving of Peeps candy, and spiked a 212. My fasting is fine. My a1c is 5.6. I have four boys, and out of them two of my boys have a1c of 5.7 and 5.8. The one who has a 5.8 also has the best fasting and is also the skinniest…not an ounce of fat on him. By nature I am also slim…I did put on weight at certain times during my life, but currently I am back to slim. (BMI under 20).

The inheritance pattern seems related to MODY. My mother died in a car accident at my age, so I will never know if she would have developed symptoms. Whatever we have seems to be a slowly progressing form, and the fasting sugar stays really good for a long time, but evidently our postprandial numbers aren’t too good. It sort of sounds like MODY2, except the fasting numbers are not elevated. It could also be a mild version, I guess, of MODY1. Probably not MODY3 because we don’t spill glucose in urine, that I know of.

We are also of English/German/Irish decent. I am negative for antibodies. I also had a very mild gestational diabetes, controlled by diet, with all four pregnancies.

I’m nervous to take such an expensive test (there is a slight risk the insurance might screw up and decide not to cover it, I guess, even though the endo secretary spent 30 minutes on the phone making sure they would) if I don’t have anything wrong with me. But it’s just so strange that out of my four kids, two of them are already showing signs of a glucose intolerance. (The two that do not show these signs are overweight, Dad’s genes, but have fine a1c’s.)

Has anyone encountered a MODY that has healthy fasting but high postprandials, and slowly progresses as they near retirement age? I have researched a LOT online, and haven’t been able to quite pin this down. I also emailed the place in Chicago to see if they had any insight but have not yet heard back.

Thanks!

1 Like
2

Cases of MODY actually vary, just like all forms of diabetes. Each MODY variant actually represents a class of genetic defects that impact a single gene. So the well may be differences among patients with a particular form. MODY2 presents as elevated fasting and pretty much the other forms present as abnormal postprandial blood sugars. Whether or not you spill glucose may not be diagnostically relevant. I know of others here who have MODY who might relate their experiences. I have posted extensively on MODY and my experience getting tested.

3

Does everybody with MODY have lower insulin? I’m asking my endo if I can get my insulin tested BEFORE taking such an expensive test. I have never had insulin levels checked and I’m not sure why nobody really wants to do that for me, but he jumped right on the bandwagon to get me tested for MODY. I don’t understand.

He’s probably gonna fire me with all the questions and requests I have made…

4

I’m not sure insulin levels are diagnostically relevant to MODY. There isn’t any harm in having your insulin levels tested, but I bet your endo already tested your c-peptide which is a strong proxy for insulin levels. A more important question is whether he has tested you for antibodies.

5

While it is nice to know whats going on, and your family history （and kids numbers）are suggestive of strong genetic link, whuch is possibly some form of mody, bottom line IMHO, is appropriate management to normalise blood sugars and avoid complications.

how does your family fare in terms of complications？ this may also be relevant to your kids who will be dealing with this long term.

if low carb works well, this may be applicable for your entire family to adopt as part of the management plan.

6

Brian…he did test me for the three main antibodies and I was negative. I requested a c-peptide in the past but he did not feel it would be a relevant test. shrug

7

Historically, complications seem to occur after retirement age. But I have no idea if my Grandpa and Uncle had elevated a1c their entire life like my kids.

8

I’m the one with wierd diabetes. Fairly mild insulin dependent （oral meds dont do a thing）which was uncovered in the first weeks of my first oregnancy .
I have been monitoring my kids. My oldest started with hba1c of 5.3 when i first monitored about 4 years ago （was told by pediatric endo it was of no concern）.

Early this year i tested her （7yo）and her hba1c was 5.9, her 4 yo sister was 5.5.

We saw a pediatric endo and this is now apparently cause for concern, and close monitoring, though no treatment yet.

I joined the typeonegrit group （I have already followed a slightly lenient Bernstein approach for myself for many years）, and put our whole family on lowcarb plan. Ms 8 hba1c dropeed to 5.4 and Ms 5 hba1c dropped to 5.3.

We just did the trialnet testing, and will get results in 6 - 8 weeks. We are on quarterly endo monitoring for Ms 8 now. I will keep testing Ms. 5 as well.

I definitely would like to keep their hba1c below 5.5 and diet managed as long as possible.

9

You do sound similar to me, with kids having elevated a1c! We are also lowering carbs and trying to reduce sugar in all FOUR kids, not just the two with elevated a1c. Also, my youngest has a slightly elevated cholesterol, but he tends to steal food, particularly cheese, so that’s probably part of it. He is also on epilepsy drugs, which I think can also mess up bloodwork results. My teenager’s cholesterol wasn’t checked. My cholesterol is fine.

Definitely let me know what comes back for the MODY test! How are your fasting numbers?

10

im on insulin, so my fasting is great. girls fasting, on low carb is pretty good now. mostly high 70s to low 90s. post eating is their problem, if they eat carbs. high quickly - can be above 200 for my oldest, and then drops fairly quickly too.
i did 14 day freestyle libre on her and saw the patterns. way better on low carb.

11

high cholesterol is often related to high carb /carb intolerance, not high fat… low thyroid can also affect cholesterol.

12

we‘re not doing mody testing, onky antibodies. i cant afford to be tested.