[sofaraway]

Hi there, I'm new to the forum

Not sure if this is the right place to post? But just wondering if there are any other MODY's around?
I'm a MODY 3 diagnosed in 1999, i'm currently on gliclazide, but it's not doing the trick at the moment fasting blood glucose is between 10-15 mmol/l and my before bed is normally 18-25 mmol/l. Doc wants to give it a couple of weeks before increasing the dose, but can't see it sorting itself out on it's own.

[Funnygrl]

Originally Posted by sofaraway

Hi there, I'm new to the forum

Not sure if this is the right place to post? But just wondering if there are any other MODY's around?
I'm a MODY 3 diagnosed in 1999, i'm currently on gliclazide, but it's not doing the trick at the moment fasting blood glucose is between 10-15 mmol/l and my before bed is normally 18-25 mmol/l. Doc wants to give it a couple of weeks before increasing the dose, but can't see it sorting itself out on it's own.

Not Mody, but no, your meds are not doing the trick.

[rea]

they origionally thought I was mody, until they ran more tests - I have no insulin resistance.

they had put me on metformin, insulin, actos, a combination of all three, and finally now I am diagnosed as a LADA, just insulin.

[lottadata]

I just posted a long message about MODY in the Type 1.5 thread where it was mentioned.

I seem to have a mild case of MODY which responds dramatically to teensy doses of basal insulin. I'm currently using 4 units of UL (until my supply runs out.) 3 in the morning (which covers lunch beautifully) and 1 at night.

Lantus was terrible for me. The dose high enough to control as well as the UL was giving me hypos at night. I tried Levemir, but for some reason it pushed my blood pressure way up, though it did good for my blood sugar at a dose of only 2 units.

I will eventually have to use the Levemir and hope I can get the BP to calm down with it.

I avoid the sulfs because I have read that they may worsen heart attack risk and the history of the part of my family that carries the MODY gene is that most of them die of early heart attacks BEFORE being diagnosed with diabetes. That's because we have very high post-prandials but only impaired fasting blood sugars with our gene.

But I don't want anything that will worsen my heart attack risk as I am only a few years away from the age at which my relatives died of first heart attacks.

Why not ask your doctor if you can switch to insulin? Just remember that you' will need a dose typical of a Type 1 on Honeymoon--very low, not the usual doses they start people at.

Start low and work up with the basal first. If your doctor isn't comfortable with this, you might need a new doctor who is. It was my family doctor who pursuaded me to try insulin and I can't believe how much better I feel with it.

[sofaraway]

Thanks for the replies.

lottadata, which form of MODY do you have?

Like you my family all die of heart attacks before the age of 60, but have all had a diagnosis of diabetes.

I think my doctors would be completley against insulin, there is a move to get as many MODy's as possible off insulin, including people that have been on insulin for 20+years. Results seems to show that control is equal or better on sulfs than insulin. So i'm not sure that they would want to try me on insulin, until i was on a max of oral meds.

I don't feel like they are really bothered by the high blood sugars, can't remember the last time had one in range. they just say wait and see what happens.

didn't know about the link between sulfs and heart disease, will look into that more.

I wouldn't be particulary against going on insulin if it got me in control, just don't think they would prescribe it.

http://www.projects.ex.ac.uk/diabetesgenes/

check out this site, got lots of good info on it

[lottadata]

sofaraway,

Here in the US it is prohibitively expensive to get tested for MODY--$3000 for the six genes already identified and they told me at the Joslin clinic that many people who they believe have it, still have genes that have not been identified. Insurance won't pay for the testing. So I don't have a definitive test.

I was given a questionairre and had a long talk with someone who at the clinic who was recruiting for a study of MODY who said after reviewing my history that I fit the description. So that's all I know. From reading up, I suspect I have the HNF-4a version.

The reason they're moving to sulfs in the UK is that they are oral and many people prefer pills to shots. But in the U.S. cutting edge advice is to avoid the sulfs because of the heart attack risk.

From reading the alt.support.diabetes.uk newsgroup, I've learned that your doctors allow people to live with what are now known to be very damaging levels of high blood sugar, which is a shame.

Here in the U.S. endocrinologists now recommend that at 2 hours people should be under 140 mg/dl (7.8 mmol/l). My doctor says "lower is better."

I have finally gotten my blood sugars into the normal range with a combination of a lowish carb diet and a basal insulin and I feel so much better it is ridiculous, though my numbers before the insulin would have been considered very good by many doctors (A1c of 6.0%). But since that 6.0% was achieved on a very low carb diet, and was rising, my doctor did not think it was good enough, especially since there's research suggesting that when blood sugar control goes for Type 2s it goes extremely fast-- so the rise in my fasting blood sugar while still only borderline bothered him since I was eating so perfectly, maintaining normal weight and still getting to 140 eating a low carb meal.

I have checked out the site you suggested and emailed the woman whose contact info is there, btw.

If you want some ammunition about damage and blood sugars, check out http://www.phlaunt.com/diabetes and click on the "organ damage" link which will take you to a bunch of research linking specific blood sugar levels to organ damage.

[seacomp]

Originally Posted by lottadata

If you want some ammunition about damage and blood sugars, check out http://www.phlaunt.com/diabetes and click on the "organ damage" link which will take you to a bunch of research linking specific blood sugar levels to organ damage.

Thanks for the link, the author's views cohere with mine and are similar to Dr. Bernstein's.
I believe the following quote is quite important,

The data here suggest strongly that truly normal people--people whose fasting blood sugar is close to 82 mg/dl and whose 2-h result on an OGTT is closer to 90 than 140 probably don't become diabetic. Those whose blood sugars are higher than this true "normal" do even though the current diagnostic standard embraced by the American Diabetes Association tells them they are normal. They may go on for many years showing only slight changes from year to year, but eventually they suddenly hit a critical point where their blood sugar control suddenly deteriorates very swiftly.

[Maribeth]

My son and I have it and I have run through a variety of treatments.

Since it all stated with my fourth pregnancy I was on insulin for about a year post partum. Then we moved to Metformin, Januvia, Prandin combination. This is when I really did not feel well on the mads even though I had good control. I still feel that Metformin was not right for me even though so many say it is such a good medication.

Januvia did not change anything.

When Byetta came out I started that and we dropped all other meds except I can take Pandin to cover a heavy carb meal. Now that I have been on this for awhile I find I don't need any Prandin anymore and I can tolarate limited carbs too. I have never felt better and I have great even numbers all day long. A1c is between 4.5 and 5.2 typically. It was a ride to get there though.

My son (7) was on 5 shots a day of diuluted H. This was when they originally thought he was type one and then after correct diagnoses just kept it up for awhile. We moved him through two ped. endo's and now he sees my endo who knows allot more abot MODY. We tried diet control for him after weaning him off the shots but he was not growing very much and hungry all of the time so now we are just watching numbers. He is typically 135-200 throughout the day and his
A1c is about 6.0. We has discussed using prandin for him off the label but we have not jumped on a descision quite yet.

We keep hearing from our genetic diabetes specialists who review our case, (Philipson, Hattersley, and Gloyn) that his numbers will not be bad for him. I worry because like many of you many family members with Diabetes have all died in their 40's and 50's from heart attacks. The doctor's repeatedly tell me this is most likely not from our MODY mutation. What do you guys think? I worry more for my son than myself. I would like him to have a long life ahead of him.

Thanks, Maribeth

[lottadata]

I think the doctors are all wet.

My family ALSO has the heart attacks in the 50s. Our MODY (whatever it is) often seems to generate only "prediabetic" blood sugars.

But there is a bunch of new research linking prediabetic blood sugars post-meal to heart disease. I have documented it at A1c and High Post-Meal Blood Sugars Predict Heart Attack

I just did a trial of Prandin and it was okay but not great. So I'm going back to insulin. Insulin is all that gives me normal blood sugars. And that's what I demand.

I also have to cut back on the carbs, even with insulin, because I can't make insulin work with more than 40-50 grams at one meal.

But if I do that, I can keep the A1cs in the 5% range not that much higher from my normal spouse.

[sofaraway]

Oh long time since I started this thread, within 2 months of posting I started on insulin and my control has been great ever since.

I was actually told about a year ago by one of Prof Hattersley's team that there is a larger than normal cardiac risk for people with MODY (i can't remember if it was specifically MODY 3 or all MODY's). but this is related to cholesterol, our protective cholesterol is somehow damaged and misshaped so is not actually as protective as it should be (or as blood tests would indicate).

as for your son, in the UK at least sulfs are the med of choice at low doses, I was well controlled on sulf for a few years before needing to use insulin, maybe that is an option your endo might consider.

[GuitarManDave]

There are a few of us Modys who haunt the 1.5 forum (for lack of a better place).

I'm most likely Mody 3 - I'm waiting for the genetic tests to come back any day. By the way I too was told that insurance won't pay for it but mine did without any questions.

I've spent two years seeing specialists trying to figure out what kind of diabetes I have. I don't fit the usual profile: 43, very thin, eat well, exercise regularly, no antibodies (not type 1). However I have a family history of diabetes going back 4 generations. Also my fasting glucose is pretty low. My problem is post-meal spikes. These are classic symptoms of Mody, probably type 3 which is the most common.

I tried a tubfull of different meds - Metformin, Actos, Avandia, and Prandin. The drugs that treat insulin resistance did absolutely nothing because I'm not resistant. Prandin worked but was very tough to control. For kicks I tried fast acting insulin with meals and it proved to be the cure to all ills. I'm now on an insulin pump and have excellent control. I would strongly recommend insulin as an option to consider for Modys.

Before I went on insulin I couldn't get my A1C below 6.7. My lipids were also horrible even on heavy doses of lipitor - my HDL never went over 35.

I've been on insulin for only two months but my numbers have improved dramatically. My A1C is 5.9 and I expect it to drop further. My HDL doubled to 70 and my triglicerides have never been better.

It is tough finding an endo who understands the subtle differences between Mody and more common diabetes. It took me 2 years to find the right doc but it was worth the struggle.

Best of luck. Use this forum - there are some really smart folks here who have been through a lot and know more than most docs out there.

Dave

[Maribeth]

Very good information. I want to thank everyone for sharing their ideas and experiences. If Guitar Dave doesn't mind I would love to hear if your are a MODY 2, R36W when the tests come in. It does have MODY 3 characteristics. There are not many of this type identified out there so the chances are slim. I just find the geography coincidence pretty crazy.

We just had our Endo appointment last Monday. I am still happy on my Byetta and my numbers are good. I lost 5 pounds. I do take zocor to keep the cholesterol down. My Triglicerides can be very confusing, sometimes they are just great, but if I even have one glass of wine then they skyrocket to the high 400's. I have found that controling certain carb intake is my best bet. No grains, not even whole. Not much fruit either. Watermelon does not make us go high, and we tollerate pineapple,but no carrots, no oranges, no apples for me, obviously no bananas. I live mostly on meat, green veggies and lugumes. Again we tried this for Dylan but because of his size he was not gaining weight and he did not have weight to lose so he has much more carbs than me. We watch what kinds of carbs though.

I was always thin before my third pregnancy which was the first time I became Diabetic. After that I just could not loose all of the pregnancy weight. They cleared me of the Diabetes 6 months post partum when I had lost some of the pounds. The fourth pregnancy was much worse though and the Diabetes stayed on. We did not know it was MODY until Dylan, my third, was diagnosed about a year later. Since he was neg. for gad, and very thin too they did not know what was going on at first. That was when we were Doctor hunting to figure it all out.

Dylan's A1c was 5.9 and his post meal averages for two months were 157 for am, 160 for lunch and 135 for dinners. I have Dawn phenomena so my fastings are about 135-145 in the am. Dylan is never above 112 or so fasting. We decided not to treat for Dylan again. I want to keep looking into it for the next few months. We were happy he gained two pounds because he is very small and thin for his age. The doctor is flexible on starting meds if we say the word. I am just torn on what to do. Again we would be using meds off label. I think it is encouraging to hear that they are using suls on kids in Europe. They seem way ahead of the states on much of the medical stuff.

I heard that the insulin can be tough on your vascular system. Do you think that it is not true? Dylan was doing four shots a day for awhile and an extra for snacks. It was diluted and he still had daily hypos. We would have moved to a pump if he stayed on.

I just saw a new finding on Glukocinase mutation from a Philippe Froguel study that came out today. It leans towords treating postmeal highs as opposed to living with them.

I will keep checking in and reading what you guys think. I wish everyone good energy for the day.

Maribeth

[lottadata]

Maribeth,

The sulfs are a step back, not forward, for kids.

I have heard from quite a few people diagnosed young with MODY who were put on sulfs and found that they caused torturing hunger and blood sugar swings.

I recently heard from a woman whose daughter diagnosed with MODY gained over 30 lbs on Prandin and developed very bad mood swings.

I recently tried prandin, I'm an old lady by now and years of not being diagnosed burned out my beta cells, but even so, though it did something to control my blood sugar, it was nowhere near as good as the combination of cutting carbs and using insulin. And after ten days, I had gained a pound because it was making me hungry.

Amaryl causes me nonstop hypos at tiny doses.

So I would personally not want to put a kid on a sulf!