Does anyone have the MODY form of diabetes? I know there is a group but it is quite inactive.
I saw my PA today and we’ve come up with a diagnosis of exclusion. He initially thought I was type 1 but tested negative for antibodies. A 3 month trial of metformin did nothing to improve my fastings so we tried lantus. That did not help and even increased my fasting bs the more we increased the dose. I have been controlling my post meal bs by restricting high glycemic carbs.
Since I did not respond to weight loss, metformin, insulin, he thinks I have MODY 2 or MODY 3. Of course we won’t know exactly which one unless genetic testing is done but insurance probably won’t pay for that. We are doing a short trial of glyburide. If my fastings improve, most likely I have MODY 3. If not, MODY 2.
Has anyone else gone thru this! How did you end up getting treAted? This is nerve racking.
Thanks for any insight.
I have struggled with a proper diagnosis. MODY2 and MODY3 are very different. MODY2 is marked by increased fasting blood sugars and MODY3 has normal fasting but poor responses to meals. Apparently MODY2 does not respond to insulin or Glyburide.
I have the elevated fasting BS (100-115)and my post meals are usually under 140 2 hours after eating. Yup... Insulin didn't work but glyburide brought my fasting down this morning. By a lot. I had a reading of 86. I don't think I've ever been that low.
The quoted range of elevated fasting for MODY2 (GCK) is 5.5 - 8 mmols/l which is 100 - 145 mg/dl. There is more information on DiabetesGenes, but they say the following about MODY2 GCK
"An important point is that these patients do not need treating in the paediatric age range. There is very little if any response to either oral hypoglycaemic agents or insulin (E). Exogenous insulin results in reduction of endogenous insulin secretion and so the degree of glycaemia will be maintained .explaining why these children can be treated with insulin without significant hypoglycaemia. "
Insulin has not been particularly effective in addressing my fasting blood sugar problems.
Got misdiagnosed type 2, then LADA now MODY. Don't know which subtype, waiting and considering bloodwork to determine that. Have been using insulin and it works. Since going on a carb-free diet have not needed rapid insulin very often, if at all. Option of switching to pills but I won't do it. Not interested.
I tried basal insulin which didn’t do anything for me. I haven’t tried meal time insulin but my PA suspects that it won’t do me any good. He explained that the type of MODY he thinks I have is pretty much unresponsive to meds but doesn’t worsen over time. I have to give the glyburide a bit more time but after the second day, it appears that my 86 fasting reading was a fluke.
I just spoke to the research coordinator at the Kovler diabetes center and talked about the genetic testing for MODY. She said that I am presenting as a MODY 2 but can’t be confirmed until genetic testing is done. In case anyone is wondering, they don’t test everyone because of funding issues. Sigh… That’s my issue too. I don’t have sufficient funds to get myself tested. Lol. Hopefully, I can get tested. I have to so another survey then the researchers will decide if I should be prioritized for testing. So basically, nothing can be done to treat me.
Hi Gail: Have you seen April/Annie's posts? She has written about her experience getting tested at Kovler (testing confirmed monogenic diabetes). She also posts a lot on the ADA forums, I think.
I have had multiple contacts with Kovler and never been successful in getting tested. My last contact was applying for a study but they rejected me because I was on insulin and they claimed that MODY 2 patients were ultra sensitive to insulin. This isn't something I've seen in anything else I've read. So I continue to be treated by my endo as what she calls "ideopathic T1." Even with my basal insulin, the best I seem to be able to do with my fasting blood sugars is 120-140 mg/dl.
ps. Glyburide is not suggested for MODY2.
I haven't given up on glyburide yet. But I have found that I hypo in the middle of the night and wake up to elevated blood sugars in the morning.
We know glyburide is not suggested for MODY 2. We are trying to differentiate if I have MODY 2 or MODY 3. MODY 3 can be treated with glyburide. Insulin doesn't do anything except make my BS elevated in the morning. Short trial of glyburide. If my blood sugars do not improve, we are going to assume MODY 2. If they do, MODY 3. Of course, this is without the benefit of the genetic testing.
Is her name April or Annie? I will look up her posts. Thanks for the heads up
Here on TuD she goes by April, but her name is Anni and I think she uses Anni at ADA forums. Her investigative detail is astonishing!
Update: So john Walsh is thoroughly convinced I have MODY based on my lack of response to meds, weight loss, and family history. Since I am careful with my diet and exercise I don’t need post meal insulin and my problem is my fastings. Most of the time over 100 but some in the 115s although the other night, I experimented with a bedtime snack of a tablespoon of peanut butter and got a fasting bs of 85. That never happens.
I definitely have problems post meal if I eat something high carb. My husband thought he was doing me a favor by getting me a bowl of pho for dinner. I ate it to see how high I would get. Bs of 220. There’s my answer:(
I want to get the genetic testing but can’t afford it.
My own story is long, but I'll keep it short.
I'm young, active, juuust overweight. Carb restriction helped my BG somewhat, I have terrible response to meals but good fastings, and Metformin didn't really work for me. I'm now on Cycloset, which seems to work better.
I'm antibody negative, never had an A1c over 5.4, but without meds my post-prandials remain at or near 200 for hours after eating, even with only, say, 10g of carbs.
I fit the MODY3 profile perfectly, right down to the very, very low HS-CRP. My father has...something weird, which started with a presentation of reactive hypoglycemia, like I did. He now has an A1c of around 5.9, is not being treated with meds, and has a BMI bordering on low. Kovler won't test me because my father's parents never had diabetes and because I sometimes have a high C-peptide.
Based on exclusion criteria, there is a higher than 75% chance that I have MODY3, but I don't have a diagnosis. I want to know, but the testing is ridiculously expensive and too much to pay for. Maybe one day...
I wish you a lot of luck!
Thanks for replying guitarnut. I will ask about getting my crp tested. I just read that it is a cheap way to distinguish between MODY and type 2
It'll only distinguish between MODY3 and Type 2. Only MODY3 has the mutation that messes up HS-CRP synthesis. Also, this only applies to the HS-CRP, not the standard CRP. It's still much cheaper than springing for the genetic testing, but you need to make sure they test you for the right one.
Also, you really sound more like you have MODY2 than MODY3. Remember, MODY2 has elevated fasting levels, while MODY3 does not. I think the responses to meals in MODY2 varies, but MODY3 is characterized by normal fasting levels and inadequate insulin response to meals. There is no good way to distinguish between MODY2 and Type 2--in fact, on average, HS-CRP values were higher for MODY2 patients than for Type 2 patients. (After being adjusted for BMI, the average value for Type 2 patients was 0.76 mg/L, and 0.95 mg/L for MODY2 patients.)