Newly Diagnosed Type 1, was originally misdiagnosed Type 2... questions

Okay, a little back ground here. I am 27 y/o and when I was 23 I was diagnosed by my PCP as a type 2 diabetic, simply because I was over the age of 18 and had an A1c of 8.0. I was put on all sorts of different oral meds then Byetta, then Victoza, then back to Byetta. I began working out feverishly and eating a very low carb diet... I lost 60lbs! But all these things did not keep my b/g from steady rising more and more. So, after 3.5 years my PCP finally agreed to let me see an Endo. After reviewing my chart and talking with me she said I am DEFINITELY type 1, not type 2. She said if I hadn't gone low carb and started exercising like I did they would have figured it out much sooner. She immediately adjusted all my insulin (which I began taking in Nov. with my PCP cause everything else had failed). And she wants me on a pump which I am all for an incidentally have am just waiting on the paperwork to go through.

Okay, so last night I was very very upset because they keep decreasing my insulin doses to increase my blood sugars because they are too low, I am frustrated because my sugars are all over the place and I hate that! My CDE says its because I work out so much that I am very sensitive to insulin and require extremely small doses. Some days I just feel like maybe I shouldn't be taking any insulin but with none it shoot right up into the 300s within 24hrs. I'm frustrated and confused at the moment.

I suppose what I really want to know is, I am taking only 16u of insulin total 6u Lantus, 10u Novolog that just seems like an outrageously small amount considering how the "standard" is 0.5-1u/kg/day. Thoughts? I mean is it possible that I can honeymoon 4 years after because I just started on insulin. Incidentally when I first started I was on 18u Lantus and 7u Novolog.

And finally, all these fluctuations are making me nervous about getting my pump. Is having a pump going to help with all these lows?

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One possibility is that the 6 units of Lantus will not cover 24 hours for you. Let us assume is degrades in performance after 18 hours. Thus you will have 6 hours with less basal insulin than needed. Of course you would see high numbers then. You can try to split the dosage of 6 into 2 shots with 3 units every 12 hours (or 4/4). I personally think that a two shot regime allows a little more flexibility to handle day and night differently. This is important because around 3am most people have the highest sensitivity to insulin. If two shots of basal are an improvement I would recommend to switch from Lantus to Levemir (again with two shots). This insulin has a more even reaction pattern in my opinion.

One advantage of the pump is that you can adjust your basal profile (the basal insulin is pumped according to this profile). Thus you can prepare yourself for sports by setting a temporary basal rate that is lower. Most people need to decrease the basal one hour before sports. After that you remove the temporary rate and the normal rate will take over. If this really works or not depends on the sports and the individual reactions to it. Some people experience high BG afterwards because the liver will dump glucagon and in addition to that growth hormones are secreeted. In combination with a reduction of the basal rate this might not work as planned. On the other hand you can quickly react to that by injecting a correction. I personally prefer MDI and know that this treatment has good potential but for a very active lifestyle the pump is definitely something to consider. The most important thing is that you know the mechanics of diabetes to utilize the full potential of this tool.

Holger -- I definitely agree that 6 units of lantus is extremely small and it's very unlikely that it's doing it's job for a full 24 hours. Julianna -- your insulin needs are probably increasing, and it's very possible that you had a very very gradual and long honeymoon phase. If I had eaten only carbs during the first weeks of my pancreas degradation, I would've been sick as a dog and my blood sugar still would've been sky high. My honey-moon phase was very short. We are all different!

The first rule: Your Diabetes May Vary.

Different kinds of working out have different impacts on BG and the timing of those impacts. There are some great resources to sort out how you and your diabetes respond. Your Diabetes Science Experiment by Ginger Viera (http://living-in-progress.com/) is a book written by a woman who is also a powerlifter, She has step by step processes for chasing down variances. Gary Scheiner's Think Like a Pancreaus is also great (http://www.integrateddiabetes.com/about.shtml)

Pumps can make living with diabetes easier, some folks love'm and some don't. It is a matter of lifestyle and preference. The life style stuff matter more than the variations. I would suggest getting one of those books and start thinking about and tracking how insulin and activity interact. One think that is a plus with the pump is you can use the advanced feature to then tune your basal insulins to your activity levels and how you respond to both.

Good luck with your pump.

Bad Shoe,

I am well aware of that very important first rule. I was just reaching out because even though everyone is different it's nice to know if there are people out their similar to me so I don't feel alone.

Also, I bought Think Like a Pancreas and have read the book cover to cover three times, and read countless chapters like 50 times already... lol. He does a great job explaining things. I suppose I'm just frustrated at the moment.

LOL ok how about, Rule 2: Frustration is Normal.

To feel connected and or less alone follow #DSMA on twitter Wednesday at 9:00 pm eastern time (Your Time Zone May Vary too)

All the best

Hi Julianna! I'm the person Bad Shoe is referring to up above. That's great you read Gary's book cover to cover! It's crucial for anyone living with Type 1. My book is kind of like the next step after Gary's. And Gary actually wrote the forward for my book!

Your fluctuations are actually completely NORMAL. TOTALLY NORMAL. The issue is that there other variables at work here that you have yet to learn about! That's all! I know that sounds too simple, but your body is a very logical system and there is no high or low blood sugar that happens for absolutely no reason.

I wrote "Your Diabetes Science Experiment" after I began competing in powerlifting. I set 15 records during my first year in powerlifting, but I had to work very hard to figure out how to keep my blood sugar under tight control. I started studying medical textbooks and discovered a variety of physiological processes that occur that my doctors had NEVER explained to me before.

Here's a link: http://living-in-progress.com/2011/01/your-diabetes-science-experim...

No more frustration, don't let it do that to you! Instead, take some time to study more, learn more, and experiment more with what your body needs. our insulin needs are all VERY different, and YOUR insulin needs WILL continue to change throughout your entire life. I talk about all of that in my book.

-Ginger

Hi juli, I was misdiagnosed with Gestational at the age of 27, then Type 2 Diabetes because of my age. Oral meds did nothing for me as I got sicker. Finally made my way to an endo who diagnosed Type 1. My endo says that I was probably misdiagnosed because I was probably still honeymooning at that time.

Good for you for going low carb and exercising - that's the best thing you can do for yourself. The exercising and avoiding lows is tricky but there are many here who can help you with that better than I. I do know that Lantus and exercising can be a troublesome combination as some here have seen post exercise lows with fast drops.

I am on Lantus and Humalog. My Lantus needs have been all over the place for the last year. A year ago I was on 49 units; today I am on 15 units. I've lost some weight which is part of it, but hormones are accounting for the rest apparently.

I feel your frustration with your bg being all over the place. The problem is that you can drive yourself crazy trying to figure out why because there are so many factors that influence. I too am one of those who wants to understand so that I can "fix it". Unfortunately, sometimes we never know exactly why - we just have to accept and adjust.

Going to a pump should help you with exercising and also with tiny doses of insulin so hopefully that will help you stabilize. I am moving from MDI (after 25 years of shots) to a pump on Tuesday for the same reasons.

Hang in there and good luck to you! You will find lots of help and support here. :)

I hear ya julianna...i have between 4-7 units of lantus a night as well as a mere 3 units of novarapid throughout the day to cover 160-200gms of carbs. However im diagnosed jan 2012. This keeps me below 6mmols and i usually wake up at around 5 mmols with 7 units of lantus.
Im frustrated at the moment because i do triathlons and swimming smashes my blood sugar. I mean destroys it. I can run and ride for hours with extra carbs (just a few) and can get by no probs. But i have to stuff my face with carbs if i want to swim. I pushed myself to 9mmols yesterday (and rising) and did a mere 20 laps of a 25m pool and i was feeling off. Tested and i was 3.3mmols. So i feel your frutration, some sports just smack you around a bit.
From what i understand, a pump will be a new learning curve but will help with control. If i can find a reliable waterproof one (i hear omnipods arent great?) then im all for it myself!

How dense is the endo population? Can you shop around? If you can, it might be worth trying to find a doc who's a little bit more supportive? The PCP sounds a bit "off" too. I think that it benefits everyone to exercise a lot and that docs of PWD should be engaged with their patients' desires to push their envelope, whether it's taking the dog for a walk around the block or running a long race or whatever.

So here's my follow up question... If my Lantus is at 6u at night, and that's the correct basal dose at night because of the basal test I did... What do I do about my low blood sugars between meals? 

For example, my bg is 100 before eating breakfast, I bolts accordingly an then my 2 hour post is 178, then at the 4 hour mark 62! 
Same thing happens with lunch, I'll start around 90 bolus, and 2 hour was 218 the. 4 hour was 68!

If I decrease the Lantus anymore my b/g will be too high in the am
Could it be the duration of the Novolog for my bolus? Thoughts?

I'm a prety new Type 1 too (LADA 9/11, I was also misdiagnosed as Type 2 11/10). I have done low doses of insulin for about 7 months (Lanuts and Humolog). In December I got a continuous glucose monitor (CGM) and it is great for seeing tends and making adjustments, I just started a trial for a minimed pump 2 days ago (love it) because I didn't want to keep playing with different types of Insulins when the pump has so many options and can better meet my unique insulin needs. I know it will take some tweaking, but I already feel better and pumping is so easy!
When I work out, I can have a low immediately after workouts and about 12 hours later, I also seem to have dawn phenomenon (still working on that). Another book I saw recommended here was 'Pumping Insulin.'
This is a great website, there is such a wealth of information.
Good luck! I have found that the more I learn, the easier it all is.

If you are regularly getting two hour post prandials such as 178 and 218, then you need to adjust your I:C ratios as you are not getting enough insulin. Keep in mind that many of us have different ratios for different meals, so you just have to play with it making small changes and watching it for a couple days until you are in target more of the time than not.

As for the lows in between meals: Unfortunately, Lantus is not an exact science because it doesn't really last 24 hours. And since you are so insulin sensitive, you are right, that 5 units may be too little. I would suggest you split your Lantus into two doses or switch to Levemir which has a bit smoother action. Then you can figure out how much to take at night and how much in the morning

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