Prandin or Insulin for Mody?

[GuitarManDave]

Hi -

I'm new to the forum - what a great resource this is!

Here's the Readers-Digest condensed version of my story:
I'm 42, diagnosed 2 years ago. I'm thin and always have been. My dad, grandfather, and great-grandfather all developed diabetes in midlife. All were thin. My A1C has averaged 6.6 over the last year. I have a personal goal to get it under 6.

My first few endos didn't know what to do with me because I sure don't look like a type 2 and my GAD (negative) and CPeptide (normal to high) don't suggest type 1.

I finally found someone who recognized me as a likely Mody - we're working on getting insurance to pay for the expensive testing to confirm. In the meantime he added Prandin to my Metformin(1500g) meds. Metformin wasn't doing much for me. Prandin is definitely more effective which makes sense since Mody(3) is a failure to secrete insulin - I don't have insulin resistance.

The only problem with Prandin is I feel like I'm chasing my bg - sometimes one pill isn't enough, sometimes it's too much and I go hypo. I try to adjust my dosage according to what I eat but I often seem to over- or under-shoot. It seems my reaction to carbs varies by time of day, stress level, phase of the moon, etc.

Some questions:


Is there a legitimate reason to stay on Metformin? I asked the doc and he brushed it off saying "it's probably helping you a little". Is there a good argument for going off it?
Are there any advantages at this early stage of switching right to bolus insulin? My fasting glucose is fine - my entire problem is post-meal spikes which is typical for Mody3.


Thanks for any advice you can offer!

Dave

[soso]

Not actually sure which type I am Dave, but like you my fastigs were fine and my pp numbers were very un-fine.... I did low carb for nearly 2 yrs and got progressively worse in terms of how much I could eat without an outrageous spike.. I think prandin is the drug that delays the release of carb right.. causes a lot of gas? if so, I decided not to try that one myself... met did nothing for me... I exercised myself stupid with little noticable advantage (other than the obvious) I went on bolus insulin just over a year ago and have maintained an A1c in the low 5's ..I recently added a small dose of basel as my fastings were starting to slip out of range as well.

As to going off Met, I guess only time would tell...I guess my question would be is his a good argument for staying on it? If it doesn't bug you side effect wise....? However, I would probably stay on it , start insulin, get that all settled and working, then drop it, or you really won't know what is doing what... if it keeps your insulin needs down, that is a good thing..

I have read some things implying early insulin intervention is advantageous..for myself it has prolonged my honeymoon and c-peptide is known to be a good thing to have..some talk of supplementing it in T1's for it's health benefits...
All has to be weighed against the responsibility and commitment that using insuin brings.
Good luck

[BlueSky]

...


Is there a legitimate reason to stay on Metformin? I asked the doc and he brushed it off saying "it's probably helping you a little". Is there a good argument for going off it?
Are there any advantages at this early stage of switching right to bolus insulin? My fasting glucose is fine - my entire problem is post-meal spikes which is typical for Mody3.
...
If your FBGs are fine and you are not insulin resistant, I can't see the benefit of taking metformin. The best way to find out if it is helping is to stop taking it. If your BG levels, especially FBG, increase sharply start taking it gain. The problem with Prandin is that it stimulates your Pancreas to produce more insulin regardless of what you may have eaten. Januvia would be more appropriate in that its action is linked to blood glucose. But from what you have said, injecting insulin at mealtimes sounds like the most suitable treatment. It is easy, targeted and very effective.

[orpy]

What is a Mody???

I am wondering as I am thin as can be and diabetic. The difference for me is that I don't know of any relatives who were ever diagnosed with diabetes. I took prandin for a while but couldn't withstand the lows (I was constantly having to pop glucose tabs). I also tested okay regarding being type 1; meaning I'm supposedly not.

I'm interested in what you find out because I'm always wondering why they don't put me on insulin. Next time I am going to outright ask. I have never been below a 6.3 or so...no matter what I do (and I'm disciplined) I have highs.

I am on metformin (fast acting) and I really don't know if it's working. I'm very tired of it all...I try to stay positive but I can't help but get depressed at times as everybody is so into food and sweets. Today someone brought in a chocolate cake and I just had to admire it and nothing else. Do I have to live my remaining years never enjoying food? I try to get thrills out of lo carb stuff but I miss my mac and cheese, mashed potatoes, pizza, pasta, and cereal.

So, I will follow this thread to see what people have to say and good luck to you.

[gambi]

I believe I am a MODY. I tested negative for GAD anitbodies, however I do have a low C-pep. I was started immediately on insulin and metformin, via the hospital - and they usually have not clue.

I tried Symlin and it didn't work.
I'm now on Byetta which is really helping my numbers, and controlling my appetite which I really like.

Have you considering the Byetta to use with you meals?

[BlueSky]

What is a Mody??? ...... Today someone brought in a chocolate cake and I just had to admire it and nothing else. Do I have to live my remaining years never enjoying food? ....
MODY stands for Maturity Onset Diabetes of the Young. It is a relatively rare genetic problem that results in inadequate insulin, but there is no autoimmune attack and no insulin resistance. The symptoms are similar to T2 symptoms, hence the frequent misdiagnosis.

20% of T1s test negative for the antibodies, and you could be one of them. But in any case, it sounds like you need to be on insulin. It would give you a lot more flexibility in your food choices.

[GuitarManDave]

Orpy -

Yeah - it takes a while to get used to the changes that this requires. Learning to live with a chronic disease is not a trivial undertaking.

The mental impact has been somewhat lessened for me just because I've had a long time to get used to the idea. My dad had a heart attack at 43 when I was in highschool and I've known about the family history of diabetes since I was young so I've always been aware that I have to be careful about eating healthy and exercising and that someday I would likely have diabetes. I have four young boys who are all 50% likely to inherit my bad Mody gene so I'm using this as an opportunity to educate and prepare them.

As far as whether or not you are Mody - the tests are pretty expensive. Something like $5000 for a bunch of genetic screens. I'm working on getting my insurance to pay. Mostly the docs look for:

- family history of diabetes
- non-overweight
- age 25-55
- poor response to drugs that increase insulin sensitivity

Unfortunately there are many type 2s and 1s that also fit this profile. I had to go through 3 endos including a guy at the Joslin Clinic in Boston before I found someone who put the pieces together. Mody is pretty rare and not well understood.

Keep your chin up. When I consider all the possible maladies that I could be afflicted with I figure diabetes isn't so bad. People live long happy lives with this disease. Yes it requires some adjustment but that's part of life. Best of luck to you.

Dave

[GuitarManDave]

Gambi -

Congratulations on your upcoming nuptuals. Marriage is a wonderful institution. I heard this quote a while back, "I never knew what real happiness was until I got married, and by then it was too late."

In response to your question about Byetta - I'm just starting down the path of insulin inducing drugs so I obviously have a lot of choices to explore. Byetta is certainly one of them.

Your signature says "CGMS -I would be lost with out it". Could you expand on this? What does it do for you that fingerstick monitoring doesn't do? I used one a while back as part of my diagnostic exploration and it was definitely useful to see how I respond to meals but I don't see how it would be useful on a regular basis unless it could help with immediate dosing.

I ask because I have a tough time with post-meal spikes. The same meal will affect me differently on different days. I'm pretty sure stress is the culprit. If I have a nice relaxing meal with plenty of time to digest then I'm fine but if - as usual - I'm scarfing down the food, juggling phone calls, trying to keep my 1-yr-old from diving for pearls in the fish tank then I can guarantee I'll spike. If I could see the spike coming earlier and dose accordingly that would be hugely helpful but I don't see how a cgms would help.

Also - did you have to purchase the cgms yourself or did insurance cover it?

[lilituc]

Well, the general idea seems to be to treat MODY with small doses of sulfonylureas. I've heard some do well on small doses of insulin at meals. It may depend on the type of MODY you have:
MODY - It's Not Type 1 and Not Type 2, but Something New (http://www.phlaunt.com/diabetes/14047009.php)

If you don't have insulin resistance and your liver isn't dumping excessive amounts of glucose, I don't think the metformin could be helping that much. I think doctors say that just because it's not fully understood how/why it works. I ended up on metformin for 6 months despite really unpleasant side effects, but it never did anything for me.

[orpy]

Hi, it's taken me a bit to get back here....

I have never heard of MODY and I am going to ask my endo the next time about this.

I know that there are much worse things that I could have other than diabetes.

Interesting GuitarManDave, my father died at age 49 of a heart attack...

Perhaps he had undiagnosed diabetes...

I'll write more later...my kids just came home!

[Alice]

Lordy, we learn something everyday! I didn't know what MODY stood for either...thanks for posting.

[gambi]

Gambi -

Congratulations on your upcoming nuptuals. Marriage is a wonderful institution. I heard this quote a while back, "I never knew what real happiness was until I got married, and by then it was too late."

In response to your question about Byetta - I'm just starting down the path of insulin inducing drugs so I obviously have a lot of choices to explore. Byetta is certainly one of them.

Your signature says "CGMS -I would be lost with out it". Could you expand on this? What does it do for you that fingerstick monitoring doesn't do? I used one a while back as part of my diagnostic exploration and it was definitely useful to see how I respond to meals but I don't see how it would be useful on a regular basis unless it could help with immediate dosing.

I ask because I have a tough time with post-meal spikes. The same meal will affect me differently on different days. I'm pretty sure stress is the culprit. If I have a nice relaxing meal with plenty of time to digest then I'm fine but if - as usual - I'm scarfing down the food, juggling phone calls, trying to keep my 1-yr-old from diving for pearls in the fish tank then I can guarantee I'll spike. If I could see the spike coming earlier and dose accordingly that would be hugely helpful but I don't see how a cgms would help.

Also - did you have to purchase the cgms yourself or did insurance cover it?

Thank you! Yes I have heard all the moans and groans about getting married. But I've been with my finance for about 4.5 years, we lived together for 2 of those years. We bought a house together a year ago. We pretty much already are married in our eyes, now we just week to make it legal (and have a big party and get drunk!!! haha just kidding but the recpetion will be fun).

As for the CGMS, some people have good luck with it, some do not. I am fortunate that mine works pretty well. IT DOES NOT REPLACE THE FINGER STICK, and it is reccommended that you finger stick prior to taking action, you must confirm a high or low. It does help track trends and warn of highs and lows. It helps my determine how different foods effect me, it is very handy during exercise as well.

My insurace did pay for mine. It is expensive otherswise, if you have a pump the trasmitter is $1000, if you use it without the pump the transmitter and display pager thing are about $1400. THe sensors are $35 each, usually one will last 3-7 days. I initially paid out of pocket and was reiumbursed. To me it's worth it because it is helping me gain much better control.

Good luck to you!!

[orpy]

Thank you! Yes I have heard all the moans and groans about getting married. But I've been with my finance for about 4.5 years

Nice little Freudian slip here!

Congrats!

[David_S]

What is a Mody???

I am wondering as I am thin as can be and diabetic. The difference for me is that I don't know of any relatives who were ever diagnosed with diabetes. I took prandin for a while but couldn't withstand the lows (I was constantly having to pop glucose tabs). I also tested okay regarding being type 1; meaning I'm supposedly not.

I'm interested in what you find out because I'm always wondering why they don't put me on insulin. Next time I am going to outright ask. I have never been below a 6.3 or so...no matter what I do (and I'm disciplined) I have highs.

I am on metformin (fast acting) and I really don't know if it's working. I'm very tired of it all...I try to stay positive but I can't help but get depressed at times as everybody is so into food and sweets. Today someone brought in a chocolate cake and I just had to admire it and nothing else. Do I have to live my remaining years never enjoying food? I try to get thrills out of lo carb stuff but I miss my mac and cheese, mashed potatoes, pizza, pasta, and cereal.
So, I will follow this thread to see what people have to say and good luck to you.

I was dx at age 37 with 1.5.. metformin did nothing for me.. insulin was the answer.. as far as missing pizza.. mac and cheese.. cereal.. you just have to change how you make it. Mac and cheese.. pasta.. we use dreamfields.. availbale on line but our store has it. It doesn't spike me at all. Cereal.. try Special K protein plus.. 9 carbs a cup. Pizza.. I love.. use low carb tortillas and pile on the cheese.. meats.. whatever. Sometimes we fry those tortillas in olive oil and then stack two with " double stuff" One torilla is the size of a plate and only 7 carbs. We really try to find news ways to still have some of what we really like to eat.. and keep it LOW

[lottadata]

Dave,

Is your doctor who knows about MODY in Massachusetts? If so, PLEASE let me know who it is. I'm in WMass and have yet to find an Endo who has ever heard anything about it

For bg control, I use tiny doses of insulin and that gives me extremely good control. I love the flexibility available with an insulin pen. If I'm eating a low carb meal, I use no insulin at all. For a higher carb meal I'll use 2-4 units (rarely 4.) Often I do 2 units and then an hour, one more if I'm not back where I want to be. I am usually around 100 at 2 hours. I try to avoid going over 120 at 1 hour at all times. Mostly it works.

Novolog works very well. I could not make humalog work at all--I went high and then low and it got worse, the longer I used it. I recently heard from another MODY person who had the identical experience with Humalog as I did. (One my docs just shook their heads about, but EVERYTHING about MODY makes them shake their heads.)

One thing that also might be worth checking out, is that I've seen a paradoxical effect. TOO much basal insulin will push my post-meal blood sugars UP, not down, though I don't ever catch the hypo. What happens is I get bursts of those counterregulatory hormones that push up blood sugar and make me more insulin resistant.

As strange as it sounds, cutting back a bit on the prandin dose might work better if you are experiencing anything like that. It is certainly worth a try. I found I had to cut back on Lantus to get better numbers.

[orpy]

Dave,

Is your doctor who knows about MODY in Massachusetts? If so, PLEASE let me know who it is. I'm in WMass and have yet to find an Endo who has ever heard anything about it



I'm from Western Massachusetts also! So you can let me know too! :) Which brings a question to my mind...when do you know it's time to switch to a new endo. Sometimes I'm not sure I'm getting the best treatment yet I'm afraid that if I switch, I might get worse...

I haven't seen the actual endo in over a year...I see the nurse pracitioner...is this normal?

[lottadata]

I'm from Western Massachusetts also! So you can let me know too! :) Which brings a question to my mind...when do you know it's time to switch to a new endo. Sometimes I'm not sure I'm getting the best treatment yet I'm afraid that if I switch, I might get worse...

I haven't seen the actual endo in over a year...I see the nurse pracitioner...is this normal?

All too normal, and one reason people with diabetes have such poor control in this area.

The family practice doctor I see is in one of the better practices, but his "diabetes nurse" must have been trained in diabetes treatment 25 years ago and is outright dangerous. She's still telling people to roll their Lantus before injecting. She prescribed me 1 inch needles in a guage you could have used for crocheting. And she wanted to inject me with Lantus at 2PM in the afternoon. When I called her with hypo symptoms, she did not recognize fast pulse as a hypo system and I was referred to a cardiologist who also did not consider hypo as an explanation.

It was. But I had to quit the overdose of lantus to find that out.

And of course the nurse is still telling people to eat bananas and oatmeal and and keep their carbs high and their fats low.

I saw the doctor rumored to be the best endo in the region some years ago. He took one look at my records and said,"I don't treat people until their A1c is in the 8% range.Don't come back until yours are that high." They never have been, and they never will be if I can help it, so that was that.

I see another endo who is willing to let me try things I want to try, but I have to do all the research myself as this doctor has never so much as looked up MODY after I got the diagnosis figured out on my own. I figured out the insulin dosing myself by reading Dr. Bernstein's Diabetes Solution a few times. About all the doc is good for is writing prescriptions. If I run into real problems I would be SOL with all these doctors.

[GuitarManDave]

To those who asked:

The guy I see is in Worcester - Dr. Nitin Trevedi. Very smart guy - did a fellowship at the Joslin Clinic a while back but is now in private practice. He definitely knows his stuff and actually listens to what I have to say.

Jeez - I never thought I find other Mody folks so close to home. We should start a club - call it Mass Mody ;)

I submitted blood for genetic testing a few weeks ago to confirm the Mody diagnosis. I'm going to be seriously frustrated if it comes back negative. I'll let y'all know. Incidently, Athena Diagnostics - one of the few labs who does Mody testing - is right here in Worcester. I had my endo draw the blood and I dropped if off at their labs personally. Can't beat it for convenience!

Dave

[orpy]

Jeez - I never thought I find other Mody folks so close to home. We should start a club - call it Mass Mody ;)



Dave

I would seriously consider a support group...I could use someone to consult with who really gets it! No one I know even understands diabetes...even some folks I know who have it...they still think it's okay to eat the craziest stuff (like corn and peas; together).

Anyway, are we allowed to say who we see? I go to the office of Dr. Korff however I see his nurse practitioner Jessica Tropp. She seems pretty informed although a bit disorganized at times. I haven't seen him in eons. I chose this office because he had treated me during one of my pregnancies. When I was pregnant they sure made sure I was in control. Apparently it's not as crucial now that it's just me! :) It's been three years of less than aggressive treatment and at this time, I am demanding more. I have decided that if they don't agree to giving me daily insulin (besides lantus) that I am going elsewhere.

[lottadata]

To those who asked:

The guy I see is in Worcester - Dr. Nitin Trevedi. Very smart guy - did a fellowship at the Joslin Clinic a while back but is now in private practice. He definitely knows his stuff and actually listens to what I have to say.

Jeez - I never thought I find other Mody folks so close to home. We should start a club - call it Mass Mody ;)

I submitted blood for genetic testing a few weeks ago to confirm the Mody diagnosis. I'm going to be seriously frustrated if it comes back negative. I'll let y'all know. Incidently, Athena Diagnostics - one of the few labs who does Mody testing - is right here in Worcester. I had my endo draw the blood and I dropped if off at their labs personally. Can't beat it for convenience!

Dave

Did they make you do the whole 6 test suite? When I contacted them last year they wouldn't let me just test the two genes I was interested in. And my insurer won't pay so it would have been $3,000+ to do it.

Orpy,

Korff was the guy who told me not to come back until my A1c was 8%. He has the local reputation of being the best doctor for thyroid issues. But he made it clear he thought an A1c in the low 6% range was wonderful even if I got it eating no more than 60 grams of carb a day, and that was that.


So where are you located? I'm near Greenfield.

[GuitarManDave]

Did they make you do the whole 6 test suite? When I contacted them last year they wouldn't let me just test the two genes I was interested in. And my insurer won't pay so it would have been $3,000+ to do it.

Orpy,

Korff was the guy who told me not to come back until my A1c was 8%. He has the local reputation of being the best doctor for thyroid issues. But he made it clear he thought an A1c in the low 6% range was wonderful even if I got it eating no more than 60 grams of carb a day, and that was that.


So where are you located? I'm near Greenfield.
I think they only tested for 5 of the genes - based on symptoms I'm most likely Mody 3.

My insurance covered it with nary a complaint otherwise I probably wouldn't have bothered. I'm hoping it comes back positive in which case that researcher you referred me to will include myself and probably my children in his study so they might get tested for free. I can't imagine insurance would pay to test them when they are symptom free.

So I was mostly joking about putting a support group together but I wouldn't be opposed to meeting in the "real" world to compare notes, etc. I also think it is a crime how many endocrinologists I had to go through before I got good treatment - and I hear nightmare stories all the time. There should be a referral network where people can share their experiences and help people hook up with good doctors *as reviewed by patients*.

[orpy]

I am located in Hadley, MA

****, so now I understand why I'm starving to death and still not achieving good control...although I think Korff would agree that I should at least be under 6.5...

Last time Jessica Tropp put me on Lantus, then said, "if you're hungry, then eat more protein." I'm sick of protein...I mean, I can't even eat 15 grams of carbs at a whack...we're talking one piece of bread, a tiny bowl of cereal, will send my numbers up...

So, any suggestions for endos in this area who will give me tighter treatment? You can write to me personally if need be.

I wouldn't be opposed to getting together to compare notes on area treatment options.

That is so funny; they blocked out my first word which was d_a_n_g; not even a swear! :)

[lottadata]

Lantus is the WRONG insulin for MODY.

The defect is in post-prandial secretion. When I get to where I have enough Lantus in me to begin to cover meals, I'm hypoing at night and having an extremely fast pulse all day thanks to counterregulation.

Very small doses of meal time insulin work much better for me. 2-4 units, tops. That drops what would be a 280 to 120.

For some people diagnosed with MODY Byetta works extremely well, too.

I got just about normal blood sugars with the other incretin drug, Januvia, for a while, but it impacts the immune system and looks like it might be very dangerous for a melanoma survivor (which I am) so I had to stop taking it. Plus by 3 months the side effects were getting intolerable: nonstop splitting headache and my digestive system ground to a complete halt.

Byetta doesn't affect the immune system, but the one time I tried it, it was a bit overwhelming for me. My blood sugars are a bit worse now, so I might give it another try.

If you have LADA, on the other hand, Lantus might be better, but you still need the meal time insulin.

I did 6 weeks of the Bernstein diabetes diet with no insuiln this past winter to lose some of the weight I put on when I stopped metformin and shifted from R to Novolog. I was eating no more than 6 grams per meal and seeing okay blood sugars
but I got hungrier and hungrier the longer I did it until it was impossible to continue. I am not at all hungry when I use post-meal insulin.

I'll email you privately about the doc.

[orpy]

Got back from my endo nurse practitioner today and I now have humalog! I am really happy yet now I'm scared too. I have been living for the past three years barely eating anything with carbs. Now I'm afraid that if I get used to using insulin, that I'll start to eat everything. I plan on taking it real slow. It's interesting how I have come to depend on controlling my diet so much; I had to. Now it sounds like I'll have more leeway to eat yet I'm afraid of losing control.

[lottadata]

Because you really need insulin, weight gain is not going to be an issue.

When I made an experiment of trying to go back to very low carb as my only form of control a few months ago, I found I got raventously hungry as my blood sugars were higher than they are with insulin. Going back to insulin the hunger disappeared.

I think the problem with insulin leading to weight gain is mostly because it is prescribed incorrectly and people do not learn how to match it to their carb intake, so they end up having to eat to catch up to their too-high insulin doses.

[orpy]

Well, when I was on prandin which gave me lots of lows, instead of eating to remedy it, I would pop glucose tabs...(I love those things and my kids do too)!

Experimented last night by injecting .5 unit humalog...clearly I miscalculated...ended up with 160 after meal...I guess I was expecting big things and I was overly cautious...

Guess I'll be using a lot more testing strips...is there a limit that insurance companies will allow?

[orpy]

Also, does anyone reuse needles for lantus solostar and other pens. I know they say not to but they also say not to reuse lancets...

Any comments about this? Until I hear otherwise, I'll keep using a new needle but it seems like such a waste.

[lottadata]

You can reuse pen needles.

The one thing that can happen with pen needles is that the pen will leak a bit if you leave the needle on between uses. So I take the needle off between uses, but reuse the same needle.

Dr. Bernstein discussed this topic in his most recent teleconference and said that reusing pen needles was fine. Just change them if they start to feel dull. Also, don't forget to do the air shot each time before you inject. VERY important. If the pen needle is at all bent, change it.


With the Solostar, my doctor gave me one as a sample, but I use such small doses I like to use fractions, so I extract the Lantus with a syringe.

I reuse the syringe, but do NOT inject air into the pen (or vial).

[Hammer]

Also, does anyone reuse needles for lantus solostar and other pens. I know they say not to but they also say not to reuse lancets...

Any comments about this? Until I hear otherwise, I'll keep using a new needle but it seems like such a waste.

I don't reuse my needles for the SoloStar. I guess you can, but at 20¢ a piece, I'd rather use a new sterile needle than take a chance on getting something because I was trying to save the 20¢.

Just curious lottadata, but how do you store a used needle? Once you peel the sterile strip off of the bottom of the needle, how do you keep the bottom from getting contaminated?

[lottadata]

Dave,

Did you get back your MODY test yet?

My doctor just gave me a prescription for Prandin and I'm going to be testing it, mostly out of curiosity.

I'm going to start out using 1/4 of the lowest dose, along the lines of what Dr. Hattersley says to do with Gliclazide, the sulf he recommends. It isn't sold in the U.S.. But my assumption is that because Prandin stimulates the beta cell regardless of glucose level it probably won't be my drug of choice. With insulin I can match the dose to the incoming carbs.

just had my once ever six month endo appt and the doc gave me samples of Apidra to try since now that I've dropped the metformin Novolog was not working as well as it used to before. The met didn't make a large difference in the dose, but it did make a difference in the height of the peak--probably because it suppresses liver dumping of glucose.

On my first test of the Apidra the activity curve was perfect for covering 24 grams of whole wheat bread and peanut butter. I was 24 mg/dl over baseline at 1 hour and back to baseline at 2. At 3 hours I was 14 below baseline, but since baseline was my morning fasting reading and I also have stopped taking Lantus due to the blood pressure problem I get with it, the fasting was high enough that the 3 hour reading turned out to be perfect.

So that's nice.

Now if I only could find some way of lowering my mildly elevated fasting blood sugar that didn't push my BP up, I'd be happy. My fasting bg was normal until about 3 years ago (age 57) and it has been inching up since then. Probably because all those years of relying on basal secretion to mop up carbs has taken its toll.

[GuitarManDave]

I'm sure my MODY tests have come back but I've been too busy to call my doctor and get the results. Actually... to be more truthful... I'm almost afraid to find out. If it turns out NOT to be MODY then I think it will be a huge letdown. I've spent two years trying to get a firm diagnosis and MODY has been a perfect fit for my symptoms. To discover that it ISN'T Mody will feel like going back to square one. I know - it sounds irrational. I have an appointment with my Endo in a couple of weeks with a full cholesterol and a1c workup so I figure I'll wait til then - might as well get all the news at the same time!

Good luck with the Prandin - it really threw me for a loop. Often one pill wasn't enough and seemed to have no impact but two pills sent me crashing into the basement. Not fun.

I'll be curious to hear how Apidra works out for you.

One thing I've found after being on the pump for a month is that pre-bolusing is absolutely critical. If I don't give the insulin 20-30 a minute head start then it's worse than not taking it at all - big spike then a big crash. Yuck!

I have to admit now that I've gotten good at counting carbs and figured out my carb-2-insulin ratio I've gotten sloppy with my diet. I realize this probably isn't healthy. Can anyone point me to evidence for this - specifically that it is NOT ok to load up on carbs even if you are keeping it under good control with insulin? Weight gain is not an issue for me - in fact I'm trying to gain weight.

Happy spring!

[lottadata]

Dave,

I know what you mean about wanting the diagnosis but fearing it won't come through so you'll be left scratching your head again.

But it is important to remember that if you have the personal and/or family history suggestive of that kind of problem, the gene tests are not definitive. On the Joslin site where they discuss MODY they say they believe there are many more MODY genes that are not yet identified. I spoke to someone who was recruiting for their MODY gene project there who told me the same thing.

At my endo appointment last week the doctor suggested that I try Prandin along with the other insulins, so I figured, why not. I started with 1/4 of a .5 mg tablet which was better than nothing but not quite strong enough. So I boosted it to 1/2 a tablet today and it did very well at lunch where I ate a meal that can be a problem with insulin as it blends fast and slow carbs. I peaked at 123 at 1 hour and ended up at 93 at 3 hours. I would be VERY happy if that turns out to be reproducible. That was with about 45 grams of carb.

If I can get that kind of result reliably, I might be able to replace the insulin. It was so much more mild than the Amaryl which was terrifyingly overpowering even at a tiny dose.

The biggest concern I have about Prandin is hunger. I've heard reports it makes people hungry and can cause weight gain.
And the other problem is that I'm used to titrating insulin very closely to what I eat, and don't like the idea of eating to the drug. I am old and small so it takes a tiny amount of calories to keep me going. I will gain weight eating an extra couple hundred calories a day.

[lorkatz2004]

Good Morning All

I know all of your frustation regarding T1 or MODY. I had the c-peptide test and it came back at 1.4.........and insulin test was also ordered and it came back as 3.6......with the lowest number as 3.

My antibody test came back normal also.........but even the endo told me my system was not producing enough insulin so he was surprised that the antibody test came back negative.

I am on Lantus at night and only need 6units.......plus pranidin at every meal. This has given me good control for the last week........but if I miss a dose at meal times, I am up in the 150's to 180's post prandial.

Being on Lantus has given me great results..........no more dead tired feeling, no more sick feeling.............I actually feel good for a change. Wonder how long it will last??

Cathy

[lottadata]

I see I had posted on this thread about my Prandin experiment.

Eventually after a few weeks it seemed to be doing less and less for blood sugar control and my weight started inching up.

I ended up using the rest of the samples the endo gave me and have settled on a regimen of using slightly less than a unit of Levemir every morning and Apidra in an insulin/carb ratio of 1/20 along with a mostly low carb diet (I wanted to knock off the weight I'd put on with Lantus and prandin.)

The weight is coming off and my blood sugars are spectacular. The tiny dose of levemir pushes my fasting blood sugar down from 110-120 to 85-90 and that means I don't need to use any insulin if I keep my carbs under about 12 per meal and get them mostly from veggies and berries.

Occasionally I have some high carb treat (fresh corn on the cob, the occasional small piece of brownie) and when I do a few units of Apidra keeps me nearly flat.

I'm a happy girl.