Monogenic Diabetes (aka MODY)

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Monogenic Diabetes, sometimes called Maturity onset diabetes of the young (MODY), refers to one of several forms of hereditary diabetes.

This group is specifically oriented towards those interested in Monogenic Diabetes.

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Latest Activity: May 4

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Monogenic Diabetes is a condition caused by a single genetic factor (hence "monogenic") as opposed to type 1 and type 2 which involve a number of genetic factors. There are a number different kinds of monogenci diabetes, with new kinds being added continuously. Key attributes of monogenic diabetes are that you have them from birth, but they may not be noticed or diagnosed till much later in life. In most cases, they don't respond typically to Type 2 oral medications, although some forms do respond well to certain medications or insulin. Unfortunately, the proper diagnosis of monogenic diabetes is difficult. Some cases are diagnoses immediately in babies or young children, but many only become evident later in life and most doctors are not aware of the condition and how to diagnose and treat. Testing for the condition involves genetic testing, which in the U.S. has been very expensive. Even when you get a proper diagnosis, proper treatment guidelines are not well established.

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Comment by Knightshade on February 19, 2012 at 6:12pm: Speaking for myself, I've never experienced reactive hypoglycemia.

My understanding of MODY (at least MODY-1 and MODY-3) is that it is an insulin secretion deficiency and that individuals are very insulin sensitive.
My impression of reactive hypoglycemia is that it is caused by insulin resistance coupled with an over-production of insulin.

I would have expected a low or low-normal c-peptide with those forms of MODY.
(I've asked for c-peptide testing, but results hadn't been provided to me... I'll be pushing again in my March appt.)

If I let my blood sugars go high, they take a *long* time to return to a good baseline number (anaerobic exercise and/or ALA in combination with EPO do reduce that time).
For instance a heavy carb meal (100+g) would still impact my fasting the next day (I don't want to think about what I'd done to myself in the years before diagnosis.) I find that 20-25g in a two hour window allows me to stay in a stable range of 70-110 mg/dl.

It will be interesting to hear what others have to say.

Comment by cjg on February 19, 2012 at 4:44pm: Yes, it is reactive hypoglycemia, in combination with high bg. If I don't watch carbs, bg easily goes up to 250+ at times. I am trying to eat 40 g carb at breakfast, lunch, dinner, and 15 g each at 3 snacks, along with protein. Up til a couple weeks ago I was eating about half that many carbs in an effort to keep down the highs. The lows have not been quite as bad now that I've upped the carbs. I had my c-peptides tested a couple weeks ago -- they were high.

My mom ignored the diabetes. She had cancer when it was diagnosed and died within a couple years from the cancer, 23 years ago. I don't know what my grandmother did beyond diet. She died 40 years ago.

Comment by Knightshade on February 18, 2012 at 4:18pm: I'd be curious about the pattern where you mention dropping into the 60's without frequent snacks....
That almost sounds like reactive hypoglycemia to me.

Does that still happen when eating low carb?
Where are you setting your carb limits (g/meal)?

Have you had insulin or c-peptide levels measured?

Do you know how your mother and grandmother are controlling their diabetes?

Comment by cjg on February 18, 2012 at 8:19am: Hello folks. I have joined this group to learn more. I don't have a MODY diagnosis but I know I have an atypical kind of diabetes. A little over a year ago at a routine physical, I had a high BG reading. A1C was 5.5 then and remains at 5.5. After eating, BG goes up to around 225. Usually is 80 or below when fasting. It frequently drops down into the 70s or 60s unless I eat frequent hefty snacks. I was not overweight to start with but have lost 32 pounds over the last year, with no improvement in the highs. If anything highs have gotten worse, and the lows have definitely gotten worse.

I was on metformin for awhile but it seemed to make the lows worse so now I am not on any meds or insulin. I was eating very low carb to try to keep BG under 120 at 2 hours PP. To stop losing weight and stave off the lows, at doctor's and dietician's recommendation, I started eating somewhat more carbs so I no longer feel like I am starving.

Oh, and my mother and grandmother also had diabetes, diagnosed when they were in their 60s and my younger brother has prediabetes.

From what you know about MODY, does it sound possible that I might have it? Do you have any suggestions?

Comment by Melitta on February 16, 2012 at 8:17pm: A huge problem with the stats on prevalence of MODY is that it is largely misdiagnosed--probably the vast majority of people with MODY are not diagnosed correctly. Testing is available, but it is very expensive and rarely performed. I think the "1-2% if people with diabetes have MODY" is quite an undercount.

Comment by April on February 16, 2012 at 4:15pm: Hi Natalie - I'm crazy busy right now - lot's to do before going out of town on Sat.

But hilarious thing just happened.

I registered on the Kovler site to be part of the registry - oh, I think maybe 6 months ago. . . and tonight, I got send a survey saying they had accepted me for the registry.

In the meantime, I made an "inside connection
and my entire family is now being tested. Sputum samples for me, my 2 kids, my 1st cousin and 6 of his children/grandkids are already being tested at Kovler.

But, I filled out the form at Kovler and I'm curious as to what I'll hear next and whether they'll figure out they already have a sample from me. Argghhh.....

Comment by April on February 16, 2012 at 4:12pm

Comment by Garethc on February 16, 2012 at 1:32pm: That is a fair assumption,Then how many are male to female in ratio and how many contrived the gene from there mother or there father and indeed the possibly of endless number crunching are boundless in the extreme lol

Comment by Knightshade on February 16, 2012 at 1:00pm: Agreed....
Given the desire to do so, one can "prove" *anything* with statistics (or at least give the appearance of doing so).

Perhaps more relevant to where the tangent started, TuDiabetes has 22,776 members.
I wonder if we could infer that there are ~200 people here that have MODY.

Comment by Garethc on February 16, 2012 at 12:25pm: Joys of stats are you can change the mean of the equation,Example 30% of Arabs in Dubai have diabetes.