Prandin or Insulin for Mody?

GuitarManDave · #1 (**permalink**) 02-04-2008, 11:36 AM

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 · #2 (**permalink**) 02-04-2008, 11:57 AM

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 · #3 (**permalink**) 02-04-2008, 12:16 PM

Quote:

Originally Posted by GuitarManDave

...

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 · #4 (**permalink**) 02-04-2008, 02:47 PM

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 · #5 (**permalink**) 02-04-2008, 03:13 PM

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 · #6 (**permalink**) 02-04-2008, 03:14 PM

Quote:

Originally Posted by orpy

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 · #7 (**permalink**) 02-05-2008, 03:53 AM

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 · #8 (**permalink**) 02-05-2008, 04:05 AM

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 · #9 (**permalink**) 02-05-2008, 09:59 AM

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

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 · #10 (**permalink**) 02-16-2008, 04:16 PM

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 · #11 (**permalink**) 02-16-2008, 04:54 PM

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

gambi · #12 (**permalink**) 02-17-2008, 06:24 AM

Quote:

Originally Posted by 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?

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 · #13 (**permalink**) 02-18-2008, 05:53 AM

Quote:

Originally Posted by gambi

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 · #14 (**permalink**) 03-27-2008, 08:26 PM

Quote:

Originally Posted by 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.

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 · #15 (**permalink**) 03-28-2008, 06:32 AM

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.