Monogenic Diabetes (aka MODY)

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Monogenic Diabetes (aka MODY)

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.

Members: 44
Latest Activity: Apr 4

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.

University of Chicago Medicine Monogenic Diabetes Program

Diabetes Forum

How good is your control with oral meds?

Started by DanK. Last reply by Gracie-n-RiverCity Nov 16, 2013. 8 Replies

Hi,I was diagnosed as having T1 3 years ago. However, after a meeting with a new endocrinologist yesterday, she ordered antibody tests to see if my T1 diagnosis was wrong. She thought I might have…Continue

Might I be MODY? (Subtitle: how to convince an endo to listen!)

Started by lynnb. Last reply by lynnb Aug 22, 2013. 4 Replies

Hi MODY group.I think I'm likely MODY, but I can't get an endo to listen.I'm 48, I have a BMI of 22 (I'm 5'5, I weigh 136 pounds).I was diagnosed 2 years ago after a screening at my office showed me…Continue

Can you have MODY without a strong family history/Genetic Counseling

Started by LADA_FEAR. Last reply by Knightshade Jul 26, 2013. 6 Replies

My Naturpoath ordered MODY testing after I tested negative for Type 1,2 and LADA. Initially my insurnace company said it was covered but later said it was only covered if certain criteria were met.…Continue

Lots of questions...

Started by CQJ. Last reply by CQJ Jul 18, 2013. 8 Replies

Hello! I am trying to make sense of my condition and have been learning a lot as I do so. I was hoping someone could tell me if I am off chasing a red herring or if my analysis makes any sense.Here…Continue

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Comment by kaitype1 on April 1, 2013 at 3:05pm

Natalie:

He had ketones. Was not DKA. 8 months prior he showed high levels of glucose in his urine. His fasting blood work showed elevated glucose, but the A1c was normal. Doctor said it must have been from the high sugar breakfast he had at a friends house and he sent us home.

So when I started seeing signs and symtoms I had his A1C checked at a local grocery store and it was 11.3. I must have caught him before DKA.

I dont know what my fasting is. I can start checking it.

Was my son tested for antibodies? I dont know. The endo told us that he was type 1. She never went over any test results. I have just contacted the hospital where he had his two day stay after diagnosis and have them sending all records.

Comment by Natalie ._c- on April 1, 2013 at 2:56pm

Kait, was he in DKA when diagnosed, or at least showing significant ketones? Has he been tested for antibodies? If so, both of those point to classic T1, not MODY. It's entirely possible to have a strong family history of T2, and still have T1 pop up unexpectedly in a child. And if you, yourself, don't have diabetes, then MODY is unlikely, because it's strongly autosomal dominant, which means it's highly unlikely to skip a generation. Which is why the doc said that for it to be MODY, one of the child's parents would have to have it.

As far as yourself, I would expect that your doctor has been testing your fasting blood sugar every so often, and if he hasn't, you can ask for it. You can also ask for an A1c for yourself -- it's not such an expensive test, whereas genetic testing for MODY is, and not generally covered by insurance. The other thing is, if you have a strong family pattern of Type 2, you, yourself are at risk of developing it, and your doc should be keeping an eye on you. I sure hope you don't get it, but better safe than sorry! Good luck!

Comment by kaitype1 on April 1, 2013 at 2:32pm

Hello,

Trying to grab all the information I can on MODY and understand it. My 15 year old son was recently diagnosed Type 1. My father was diagnosed adult onset in his 70's. His mother was diagnosed adult onset in her later years. My fathers father was diagnosed at age 40 and was assumed type 2 because of his age. And my fathers grandfather was diabetic and died early.

Can I have MODY and not know it? Best way to test before doing the genetic testing? Best way for my son to test?

I saw some posts here about fasting blood glucose and I saw some posts about taking blood glucose after meals (how much after).

I have always felt that I have been very carb sensitive and do best on little carbs.

How can I help to determine my sons diagnosis without genetic treatment yet? When I asked the endo last week she looked at me like I was crazy and said that one of my sons parents would have to be diabetic. Is that true?

Please give me any feedback that you can. Thank you!

Comment by Knightshade on July 8, 2012 at 8:37pm

The group has been pretty quiet recently...
How is everyone doing?

Does the change in seasons have any impact on your control?
More activity, warmer conditions, etc?

I've found that my fasting numbers are slightly higher.
Not sure if it is related to the weather, or just that my sleep has been more interrupted than normal.

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.....

 

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