The MODY test

So all my Type 1 tests were negative.. My dr mentioned I could get a MODY genetic test. I need to call my insurance to see if they cover it.. Anyone have any idea what it would be called? I ask her but it takes her a while to respond sometimes.. She told me where i could go. I hate talking to my insurance because they always transfer me all over the place and than I get disconnected.. I am OK with paying out of pocket... I want to cover all my bases... Also if anyone has had this test done and has an idea of what the cost was that would be appreciated also.. :)

MODY testing is very, very expensive. Be prepared for serious sticker shock if insurance won't cover it.

I'd insist the clinic or hospital pursue the preauthorization with your insurance rather than try to do it yourself... and yes we are talking multiple thousands of dollars... you don't want to be on the hook for it yourself

Ooo, thanks guys! I found the place that she suggested (athena diagnostics) but it doesn't look like they take my insurance (United Healthcare). I would like to get the test I would pay a few hundred but not thousands.. I think my Dr said that the results aren't always correct and may not really mean anything.. Not sure why she would think that my grandmother (who is the person in my family with diabetes) would know if she had MODY either.. that was way back in the 70s. Hmm... I did email Athena to find out the cost..

Also just wondering what is the real purpose of it as far as my treatment goes? Not sure how much more it will change or is there some sort of special treatment they give people with MODY?

Have you read the Blood Sugar 101 page about MODY? It has a ton of info, including why it could be important to know if you have it. Rather than summarize, I'll put the link here:

I believe Athena Diagnostics is the only one that does it commercially. Some have also gotten the tests done as part of research studies. Kovler in Chicago used to do them for folks, but don't anymore unless you're part of a specific study for them.

I think Athena quotes $6K for the full MODY panel, though insurance presumably negotiates that down some. Technically it doesn't make sense to do the full MODY panel--one should be able to eliminate some MODY variants beforehand, or at least choose likelier variants--but insurance is unlikely to cover multiple tests, so I think that's why the full panel is often done.

The doctor would have to push for this. I don't think you'll have any leverage. The insurance company needs to be convinced it's "medically necessary."

MODY can have major treatment ramifications, and it certainly has ramifications for one's prognosis and for one's relatives and offspring.

What are the major treatment ramifications? My doctor keeps telling me the reason he’s nt interested in pursuing it is because it wouldn’t change treatment

That is sometimes true, sometimes not. Depends on the variant and the severity. Often the treatment is more like T2 than T1. But (like everything else in diabetes) not always.

That is where my dr is .. Kovler at UIC.. She didn't mention anything about getting me into a study.. I will ask her again but I think she mentioned the MODY because after my Type 1 tests were negative I asked her if there were any other tests to do done... I have no idea what kind of diabetes my grandmother had.. If I did that would make a difference here per my DR but I think means as far as Type 1 or 2 goes..

Perhaps the most significant one is MODY2, the glucokinase mutation, i.e. the "broken thermostat." This basically means the body has a higher glucose set point, will resist efforts to lower it, and there's a lot of empirical evidence that the elevated BGs MODY2ers experience simply don't have negative repercussions the way elevated BGs do for other diabetics.

I actually fit this version fairly well, so I'm sort of expecting my MODY tests to come back positive for this. The Chicago/Kovler recommendation is to go off insulin, put the meter in a drawer, and live your life. This scares me, the idea of casually hitting 250 after a modest carb meal goes against everything I think I understand about our condition at this point. So I'd be tempted to either stay on insulin or adopt a very low carb diet. The Kovler folks have had a few people do that, but they regard it as empirically unsupported.

Since your doc is at Kovler at Chicago, you may just not fit the pattern well. Unless she doesn't work with the MODY folks at all. Those folks were very interested in my case because I seemed to fit the pattern so well, so they went out of their way to engage me and be helpful.

We do have a MODY group where there has been quite a bit of discussion about MODY. A significant challenge with MODY is that most diagnosis comes from genetic counselors not endos and that in the US most doctors are not competent in the area.

Do you go to Kovler too?

My dr is a pedi endo. I think she sees alot of type ones.. I think she said she had one other person like me and she was LADA,

I have an appointment to see a CDE next week... Ugh gotta wait another week.

I am new too- just started seeing her...

So I got some info on my family history of diabetes (there is more than I thought!) and I gave the information to my dr and she said that it could be consistent with MODY but it skips a generation meaning that my mom should have it??

"Maternal Grandmother: Found out she had diabetes when she was 38 because she had a cut that wouldn't heal. She was not overweight. She went on insulin at the beginning and when oral meds were available she switched to that..

Maternal Grandmothers brother: age and type unknown
Maternal Grandmothers brothers son: Diagnosed around age 26, type unknown, and died last year due to diabetes complications.

Maternal Aunt: diagnosed sometime in her 40s and take Metfomin
Maternal Aunt: diagnosed in her 60s and takes Metfomin.

Cousin on maternal side: diagnosed 40; was very overweight. Type 2 takes oral meds..

I believe I also have two cousins on my fathers side that have it - they are both overweight and I do not think either of them is on insulin."

MODY is autosomal dominant which means that a child has a 50% chance of getting the condition if a parent has the condition. It isn't a generation skipping condition.

Thanks Brian! Hmm. I wonder why she said that than.. She is a pediatric endo so maybe MODY isn't her expertise.. I know they deal with that there so maybe she will ask someone there who does more research into. I like the the idea of being a 'mystery experiment" :) That would be cool if I could get into a study and have them pay for the tests. :)

Just a thought - you could still be type 1, even with negative tests (assuming you have low c-peptide showing insulin deficiency). Some type 1s are antibody negative......

For me - it's about where I want to keep my blood sugar (with diet and meds), and having the tools to do that. For me, as a Bernstein follower, having high blood sugars (above 140) is not acceptable - but that is me.