[zoelula]

Originally Posted by foxl

I definitely think low-carbing is keeping me from being prescribed insulin ... but, is that a BAD thing? I think not. And I do not really want to prove myself right by eating higher carb and gaining weight, in order to do it! Or going DKA again ... another possibility.

Nope, definitely not a bad thing. I was just pointing out that my pattern of increase in blood sugar would be very different than yours because of the diet aspect. It does seem, though as though the protocol for insulin usage is still based on need (high blood sugars) not the concept of slowing beta cell death, doesn't it?

[foxl]

Originally Posted by zoelula

Nope, definitely not a bad thing. I was just pointing out that my pattern of increase in blood sugar would be very different than yours because of the diet aspect. It does seem, though as though the protocol for insulin usage is still based on need (high blood sugars) not the concept of slowing beta cell death, doesn't it?

Ohhhh, yes it is. And I am not altogether thrilled ... but we will see!

I will be interested to see how long I last (without pushing it) until I have another beta-cell loss. Perhaps low-carbing will help, according to some studies it should, but who knows what causes the occasional episodes of attack on them by T-cells?

One theory is that it is episodic and triggered by viral infection or other immune-system stressors ... maybe, a nadir of Vit D? So many variables involved. Perhaps your diet post initial dx had NOTHING to do with it, Zoe!

[RobinP]

Originally Posted by luckharm

My A1c was 8.9 and my fasting BS was 180 to 250 when I started on 10 units of Latus 1 time per day. This was only a few days ago and already my numbers are improving. My fasting Bg this morning was 124. I wish I had done this sooner instead of denying myself carbs for months just to keep under 200.

Your numbers sound like what mine are now. The pills I'm on aren't doing much and I'm eating the best I have in years. Low carb and no junk foods. My dr did mention insulin at my last visit, so we shall see. I go back later this month.

[foxl]

Originally Posted by dbc

When the A1c drifted up to 6.5% after being down at 6% on diet, exercise and metformin for about a year. Doctor's criteria was the 6.5% threshold on an upward trend.

We had discussed starting insulin before, when the A1c was around 6.3% (on a VERY restrictive low carb eating plan). At that time he wasn't in favour because of possible/probable hypo issues. We also didn't know each other well enough at that time, and I suspect he had me labelled as a 'normal' patient who would not apply himself properly to managing things and would therefore be likely to experience hypos. He now knows otherwise and largely agrees with everything I suggest

dbc, I overlooked your post earlier. This is exactly what I was looking for -- and your detailed explanation of "why that threshhold" was very helpful! I tried to get my Endo to answer this -- at what A1c would you suggest starting insulin, and she kinda dodged it but I am sure she has a level in mind, too! And I am sure some of that does have to do with concerns over hypos.

Thanks!

[sarahspins]

Like others, I was already taking insulin when I was finally correctly diagnosed... there really wasn't any time after my initial diagnosis of GD where I didn't really "need" insulin... however there was a time when I was told to stop taking it and my #'s were constantly in the 300+ range... my doctor really didn't seem to be concerned with that, even though I definitely was (and I felt horrible... and it's no wonder since I was likely on the verge of DKA several times).

I really think some doctors are just complete idiots, and that's the explination for why some people are "allowed" to run higher numbers (sometimes VERY high) before starting on insulin or even having it recommended to them. A lot of doctors really see it as the last possible option and want to avoid it at all costs - seemingly even if that cost is the patient's health. I was asking to take insulin and being told no... that still just baffles me.

If I hadn't self-medicated I am sure I would have gotten very very sick in a short time.

Despite all of that I had a relatively long honeymoon if you count from my initial GD diagnosis.. following that pregnancy I needed very low doses of insulin for about a year.

It's really something that seems to be unique to everyone... even for a classic T1 and not a LADA/1.5, there's still quite a lot of variability in progression and insulin requirements. Some people don't honeymoon at all, others honeymoon for quite some time.

Even though my diagnosis took a while and my honeymoon lasted nearly 18 months, I still consider myself a T1 and not a 1.5. I had positive antibodies for everything.. which sealed the T1 designation for me. I think being on insulin immediately while I was pregnant likely did preserve quite a bit of my beta cell function.. and I was diagnosed before going into DKA. I had low-normal c-peptide results for a year... which I think is part of what served to confuse my first doctor and convince her I had to be a T2. Clearly I did need some additional insulin, but she was convinced my body was making "enough" based on lab results when it clearly was not.

My personal advice? I would request an RX for insulin (at least rapid) and keep it on hand in case you need it... since you test often and seem to be on top of things, you'll know when you start seeing #'s that you just can't manage with diet. Murphy's law says that when you need it, it's going to happen on a weekend or some other time when it's inconvenient to get ahold of your doctor and get a prescription called in. I don't know that I would start on insulin "just because" - if you're comfortable with your current management then there's no reason to change things, only to be prepared for the unexpected.

[SB_Krista]

My Endo started me on Lantus last week based on my HbA1c being steadily stubborn to dropping below 6.5% with my low carb diet, exercise, and trial periods on metformin er and now Januvia. I seemed to be stuck around 6.7% and he doesn't want me to lose any more weight and would like me to not be so restrictive with carbs. My morning readings, before Lantus were conisistently 120-140 and I don't think I ever dropped below this range.

[Ategeler]

Well I started insulin when I was diagnosed during pregnancy. Then went off after having baby. Then when my fastings starting increasing from the 80's into the 120's they put me on long acting. Since then, I have progressed to needing fast acting with certain meals too. I seem to be creeping. My Dx came in Nov. 2006 and I just started taking the Levemir Dec. 2008. So I guess it was about 2 years from diagnosis that I needed to take the long acting. Ironically, I never took long acting in pregnancy since it never effected my fastings. I only took fast acting with meals. When I started taking insulin after pregnancy it was opposite--first long than short.

[tealas]

Originally Posted by foxl

tealas, I am an ovo-lacto vegetarian. And I have a family of 3 kids, and work fulltime. Sorry but until I see something evidence-based in favor of it, I am not going to further complicate my diet and meal-planning.

Yes, I bet my message came across differently than I intended. It can be hard to communicate 100% accurately via message boards and emails. I wasn't so much saying "here jump on the raw bandwagon because it worked for me," as "Hey look at how much of a difference this seemed to make for me, keep an eye out for it."

Realistically I doubt there would be enough double-blind, controlled studies to allow for an evidence-based medicine review on raw foods & diabetes. I did a quick search and there was a successful (though small) double blind study on raw foods and Crohns. But as a MODY3 I have spent my life dealing with a disease that no one new much of anything about - so I'm probably more comfortable with being off the beaten path so to speak.

I can also understand about having a busy family/work life - I am a mostly single parent of a 4 year old (also a MODY3), and my 69 year old handicapped father lives with us (I basically case manage or perform all his care). I work full-time in a high tech job where I commute 2 hours a day and often do work from home late at night/early am. So I would be the last person to manage a dietary change that was labor intensive to implement!

[MrsMia]

Originally Posted by foxl

Okay, it appears to be up to me ... I do not want to start insulin yet, not with fastings in the 80's and 90's and rarely, peaks over 120 ...

But, when DID you start, as a LADA or whatever, using insulin to preserve your beta cells? What criterion or criteria did you or your MD use?

Linda, these are some good questions. As you know, there are alot of similarities between our cases of diabetes. We both were in DKA when diagnosed and both are currently on just oral medications. I know that if I get off the medications or have them reduced and my A1c and other BG numbers start going up then I will want to be put on insulin. Truth be told, I'm not crazy about the whole, medications/diet/exercise routine that I must go through every day just to get some decent numbers. I don't have a life and the pressure is incredible to keep up all this. I can't even imagine what my numbers would be like if I slacked off just a bit. I'm not shrinking from hard work for my health. It's just that it doesn't seem to get easier even to maintain what I'm doing. It's always difficult.

[zoelula]

Actually from everything I read about LADA/1.5, my beta cell death/rising blood sugars were well within the expected time frame of a few months to 4 years. (I was around 14 months when it started).

[foxl]

Originally Posted by zoelula

Actually from everything I read about LADA/1.5, my beta cell death/rising blood sugars were well within the expected time frame of a few months to 4 years. (I was around 14 months when it started).

Oooh, yes well-within! And most stuff I read says about one year is typical ...

[foxl]

Originally Posted by MrsMia

Linda, these are some good questions. As you know, there are alot of similarities between our cases of diabetes. We both were in DKA when diagnosed and both are currently on just oral medications. I know that if I get off the medications or have them reduced and my A1c and other BG numbers start going up then I will want to be put on insulin. Truth be told, I'm not crazy about the whole, medications/diet/exercise routine that I must go through every day just to get some decent numbers. I don't have a life and the pressure is incredible to keep up all this. I can't even imagine what my numbers would be like if I slacked off just a bit. I'm not shrinking from hard work for my health. It's just that it doesn't seem to get easier even to maintain what I'm doing. It's always difficult.

Totally understand! I am not too crazy about it either it is time-consuming and I have 3 pretty time-consuming kids!

I WILL say ... one week off the Actos, no change in blood sugars, yet! Kelli said she saw it after about two weeks, though ....

[zoelula]

[quote=sarahspins;49526

My personal advice? I would request an RX for insulin (at least rapid) and keep it on hand in case you need it... since you test often and seem to be on top of things, you'll know when you start seeing #'s that you just can't manage with diet. Murphy's law says that when you need it, it's going to happen on a weekend or some other time when it's inconvenient to get ahold of your doctor and get a prescription called in. I don't know that I would start on insulin "just because" - if you're comfortable with your current management then there's no reason to change things, only to be prepared for the unexpected.[/QUOTE]

For me, my rising blood sugars were much more gradual than this. I started seeing a slow gradual but steady trend higher in September and they weren't crazy high until December. I don't know how typical or atypical LADA this is.

[foxl]

Originally Posted by tealas

Yes, I bet my message came across differently than I intended. It can be hard to communicate 100% accurately via message boards and emails. I wasn't so much saying "here jump on the raw bandwagon because it worked for me," as "Hey look at how much of a difference this seemed to make for me, keep an eye out for it."

Realistically I doubt there would be enough double-blind, controlled studies to allow for an evidence-based medicine review on raw foods & diabetes. I did a quick search and there was a successful (though small) double blind study on raw foods and Crohns. But as a MODY3 I have spent my life dealing with a disease that no one new much of anything about - so I'm probably more comfortable with being off the beaten path so to speak.

I can also understand about having a busy family/work life - I am a mostly single parent of a 4 year old (also a MODY3), and my 69 year old handicapped father lives with us (I basically case manage or perform all his care). I work full-time in a high tech job where I commute 2 hours a day and often do work from home late at night/early am. So I would be the last person to manage a dietary change that was labor intensive to implement!

Tealas, you sound VERY busy, too! Okay, I will try to be more open to that kind of eating ... but it still sounds kinda intimidating to me, to change that radically from what I am doing.

[foxl]

Originally Posted by zoelula

For me, my rising blood sugars were much more gradual than this. I started seeing a slow gradual but steady trend higher in September and they weren't crazy high until December. I don't know how typical or atypical LADA this is.

Zoe, just from reading your experience, this is kind of what I would expect. But ... we know that post-prandial control deteriorates first, so Sarah's advice is also important ... and makes me think, maybe I will need to keep doing my MMTTs every once in a while to monitor my progress.