I'm posting in the MODY group even though I am undiagnosed, however, I have high BG's that are having an enormous impact on my quality of life. I've done research and believe I fit all of the MODY characteristics. I have had to cut out most carbs, and this is having a huge effect on my weight. I can't eat too much fat because my gallbladdeer function is very low (diagnosed by HIDA scan). So, I am at the point of almost anything, and am considering buying insulin at a local pharmacy. My questions are 1) Can anyone recommend the best place to look on the web to teach youself how to do all of this? 2) Could I just use it for one meal a day and plan to eat carbs that meal? I assume that I should not go hog wild and eat like pancakes, but probably a more moderate glycemic food?

I understand the risk of hypoglycemia and I am not taking this lightly, I am just truly at the end of my rope and have decided this is worth trying. Any input is appreciated.

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I would be very wary of doing this without medical supervision. Is there some reason why you can't get help from your endo?

Yes, I've seen two endos in the past year and each one is not concerned with BG's that go high and then back to normal within 2-3 hours. I am negative for type 1 am, not insulin resistant, have normal cpeptide and am too thin. The last BG "challenge" I gave myself before eating was starting BG 91: one hour pp: 240, two hour pp: 149....my endo response was "my sugar came down nicely at 2 hour mark". These readings from a spoonful of jam (14 high glycemic carbs). Meanwhile, if I go up more than 50 points, which is VERY easy for me to do, I get big GI issues that last for 1-3 days depending on the spike. I am truly stuck with very little to eat as I'm not willing to suffer the GI effects! I fully recognize that I do not have serious diabetic issues with BG's below 300's but my the ones I do have are definitely causing me issues.

So I am wary of insulin as well; however I think if I only use very small amounts it should be ok. The kind they sell OTC is humulin and it is fast acting. Surely I could teach myself how do to this along with metering and counting carbs for one meal a day? I appreciate you chiming in...

OK, I have to side with your endo here. Your BG *should* go up when you eat something, that's normal. Considering that it then drops back down within 2-3 hours, I think you're doing fine. What are your fasting numbers like?

I think that self-administering fast-acting insulin at this point could be extremely dangerous. Your numbers are nowhere near seriously high. Even one unit of humulin could result in a pretty serious hypo, which you really don't want.

I don't know why having high BG would cause you GI problems, unless you've been chronically high for a long period of time (which, given the numbers you have here, is not the case). Are you sure it's not some other cause? Have you had an allergy test? I'm wondering if it's something in your diet that is causing those issues, rather than the BG spike after you eat. Maybe gluten? High-carb (gluten containing) foods will create a BG spike, so it can be difficult to pinpoint the cause.

The other question I have is, why insulin? Have you tried any oral medications? Has your endo discussed the different varieties of medications with you?

I will repeat my earlier statement: taking insulin without medical guidance, and with the numbers you have reported here, could be really dangerous. Please don't do it. Try changing doctors instead.

Hi Loquacity...yes, it looks like the voters in my house (primarly husband) are nixing the insulin idea. But, in answer to your question, I thought the hallmark of MODY-3 was near normal fasting with mildly high (up to 250) spikes? The "danger" is that it can be that way for years and is never caught because of the fasting number. I believe I may have had this for years and it has been in the last two, I've began to develop problems that could be related to daily BG spikes, i.e., like neuropathy and GI issues. My understanding is that BG over 150 every day are not a good thing. Non-diabetics do not routinely, if ever, go over 150. At least that's what I've been told, but I'm not an expert by any means here. I just know that for two years my BG spikes have correlated with gnawing hunger pangs, that morphed into burning, bloating that became a diagnosis of gastritis and biliary dyskinesia. My stomach has settled way down since I've cut carbs, but then I tried that dollop of jam and bang, an hour later, it's gone off again and stays that way for three days....something's not right with that. I just wish I knew what it was. Maybe I'll try to see if I can work exercise to my advantage by running before eating carbs to prevent a spike....hmmmm....I'll have to look into that.

I personally find that moving more has greater overall and long-term positive effects on my BG than anything else, including medication.

MODY has all sorts of 'hallmarks', but the main ones seem to be related more to heredity and insulin resistance (and, subsequently, 'fatness' and 'skinniness'. Gawd, I hate those terms!) than how long it takes to be noticeable. Many MODY patients are diagnosed as Type 1 at a relatively young age (like my Mum, for example), and many are never diagnosed (or women who only ever present as having gestational diabetes). If you're curious about whether or not you are MODY, start by looking at your family tree. If you want more info on MODY diagnosis, there are heaps of resources in this group for you to read.

Given your numbers, though, you need to be treating it more or less as Type 2 at this point. Just remember that Type 2s often have a high level of insulin resistance, which you apparently don't.

I would still recommend allergy testing, as I think there's probably some other issue here that hasn't been addressed. Find a doctor who understands MODY, LADA, or Type 1.5 (they're all related, to some extent), and if that doctor isn't helping you in a way you feel comfortable with, then go find another. It can be a long and frustrating journey, but once you have a good endo you won't look back. Where are you located? Try posting in a regional forum here to get some recommendations.

Good luck!

There are other alternatives to RAPID acting insulin which could cause hypos. I can give you some resources to check out.

April

gibby767@aol.com

Going to sleep soon, though...so perhaps tomorrow.

Thanks! I just found out not only did my paternal grandmother have diabetes (supposedly type 2), but so did all three of her siblings! All of them were thin and diagnosed later in life. The brother had the worse case (lost a leg) and the sisters had milder cases. My dad is also having the exact same BG patterns as me, fasting BG of 97, but Hba1c of 6.5. He is thin and active. I really feel like this has got to be monogenic at this point. I guess I need to get assertive with my doctors; that is just very hard for me to do.

I agree, start getting the doctors to work *for* you, not against you. And please come back here and let us know how you go. We're all cheering for you :)

Hello, Loquacity - I am a confirmed MODY3 (via genetic testing). Isn't amazing how we are all so individual - so different! How fantastic that exercise is so effective for you. I wish that my exercise routine did more than keep my cardiovascular system healthy - sadly it doesn't do much for my diabetes (except very short term).

My own experience is more similar to that of Silverlining. While exercise does bring my BG down a right at the time that I do it, I would have to exercise every single time I eat 15 grams of carbohydrates and that simply isn't practical.

In the end, insulin was a Godsend for me.

When I was diagnosed, I cut out virtually all carbs. My great Endo put me on Onglyza to stimulate insulin production and I ate pretty low carb. About 50-60 throughout the day, including dinner. But I found that could not (okay, did not want to) live without my precious dose of dark chocolate at 8 pm ) and THAT was what led me to go on basal insulin! Probably because the fat content slows down metabolizing the carbs to such an extent: 1 serving of a Godiva Dark Chocolate Mint bar = 4 squares of chocolate, 200 calories, 20g carbs, 12g fat.

When I got brave enough to try eating the chocolate again after a 6 month hiatus, I began waking up with a headache, nausea and tingling fingers at 2 am and BGs in the 230-245 range.

I called my doc and that was my first wonderful experience with insulin (Levemir) which in my book, is a miracle drug.

Also, I have added small bolus doses of Humulin R. This has allowed me to add a few more carbs and eat a bit more "normally." So I actually eat regular greek yogurt or activia yogurt, which I never could have done before. Chobani has 21 carbs per serving.

When I spike rapidly (25 points or more in 15 or 20 minutes) , I get headache, tingling fingers and nausea. If I go over 200, I feel as though the world is receding and flu-like and I have to go to bed unless I can get my BGs down, which I can, because I have insulin, thank heavens. . . but that just doesn't happen any more.

So, I'm unusual because of that. I'm unusual because I am MODY. I was also unusual because I didn't respond to the usual treatment to another common disease.

Unfortunately, physicians today want all patients to fit into their "Norms" - and heaven help the patient who happens to be an "outlier" -- the person who falls into the "odd" 5 percent at either end of the bell curve.

I am actually the daughter and grandaughter of physicians and I remember the lore in my family -- there was a day (I remember the stories) when pretty much ALL a doctor could do was LISTEN to the patient and OBSERVE. Now, physicians are so dependent on TEST DATA and BOOK LEARNING, they forget to listen.

Also, I have concluded that many of them are simply executors and not truly THINKERS. They may be BOOK SMART, but they are not true problem solvers. They don't want a real PROBLEM to walk through their doors. . .one they can sink their teeth into - where they can truly make a difference. They want a multiple choice test. . .

But, I can tell by your mention of the "frustration" in your response that you understand this. . .

We have no idea where Silverling lives, though - so her choices in physicians may be broad or very fes. I hope that it is in a metro-market. . . or near a university or med school. Sadly, in smaller towns or rural areas - none of the health care workers have heard of MODY.

However, she is, I believe, applying to be tested via the Kovler center at U of Chicago. A positive test will help her.

Also, a number of research summaries and medical journal articles have been uploaded to this site and she can always try taking them to her physician to educate him or her.

Best wishes,

April

Thanks April, it is fascinating how much variation there is even amongst people with the same category of diabetes!

After looking at some of your other posts, I've applied to the Kovler center too, so hopefully something interesting comes of that.

Way to go, Loquacity.

I must say - I have rather become a one woman advocate, rabble-rouser and educator about MODY. Their website is pretty badly designed and written. The person I spoke to there promised me he would run the new copy by me before they put it up - but I have heard nothing.

Do need to see whether anything has changed. I offered to provide my critique free of charge (I am am marketing professional with 35 yrs experience and also own my own market research firm now. . . but said I'd provide share my opinions gratis - and I'm a MODY myself).

When I went on the site on my own, if you can believe it, I ended up not signing up because my impression was they did not want ADULTS.

The person I spoke with assured me that was not the case.

So good for you for signing up!

Thanks April. The website isn't very well organised, I found myself looping around in circles a lot, trying to get information, but the content isn't too bad. I've had an email back from them, and will probably have a phone call tomorrow, so will let you know what comes of this. I'm doing a bunch of tests with my endo, too, to try and get a better handle on my own diagnoses.

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