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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I have successfully done a basal test overnight and in the morning between breakfast and lunch but I can't do one where I skip lunch and test until dinner because my sugar drops after eating breakfast and I have to eat so I can't skip lunch.

Hey! Glad you made it to TuD.. I haven't read through all the other responses yet. And I don't know if anything I'm about to say will help..

Do you have the book Using Insulin? I find that book to be very helpful in places where Think Like A Pancreas doesn't go into as much detail..

And also, you know that I went to an endo too, recently... they thought my basal Lantus was OK (8 units once daily) but wanted me to do I:C ratios of 1:20 and decrease to 1:18 if that wasn't working.

Well, lo and behold my sugar shot up to 300 after meals because that was not a good I:C ratio for me.

When everything was out of whack with their recommended starting I:C ratio, I read in Using Insulin how typically basal Lantus makes up 45-60% of your total daily dose. Well, I was taking way less than that. So, I increased my Lantus dose to 9u and that was working much better. My I:C ratios are still a bit crazy, but I am terrified of Lantus since once I give it, it's there all day long. It's 1:8ish in the morning, 1:16ish at noon, and then back down to 1:10ish at dinner.

Anyway, I did all that before I finally got to see my CDE. I told my CDE that I didn't think my Lantus was lasting all day, and she suggested splitting it. Before I split it, it was almost as if I ran out 1.5hrs before I was supposed to take the next dose, and I would spike way above 200. Things are better now as far as that is concerned with the split dosing.

I also have noticed that I tend to go much lower in the afternoon between the hours of 3 and 5pm than I even do in the middle of the night at the 3am mark. Also, it seems that my Lantus peaks around 8 hours in. To avoid going even lower between the hours of 3 and 5pm, I take my morning Lantus at 10am. When I switched from taking it at 8am to taking it at 10am, it helped considerably with feeling kinda crappy in the afternoon when my sugar started dropping.. Now, by the time my Lantus is peaking, it's time for dinner anyway, so I eat and everything is great.

Incidentally, my Endo said he had a patient once that honeymooned for about 22 years.

My CDE suggested not exercising a lot right now so that we can figure out patterns with my BG so that I'll know how to deal with it when I do exercise. I know you are really active and this may not be a good suggestion, but if you could take a few days off and check your BG at various times of day, it might help you to see patterns.

Just read some of your later posts.. I do have higher readings in the morning. Because of this, and the fact my Lantus is an odd number.. and I tend to go lower in the afternoons... I take 5 of the units at night (10pm) and 4 of the units in the morning (10am). My morning readings are much better- but I usually get up at 6am which is around when I believe my Lantus is peaking.

With the lower numbers after meals... I didn't consider how long the Humalog stays in your system at first.. and one day started within normal range before lunch, bolused what I thought was appropriate, and dropped like crazy 4 or 5 hours later even though my 2hr reading was fine.

I then figured out my Humalog tends to last about 4.5-5hrs after I take it, so if I eat again during that 4.5 to 5 hours, I need to account for how much of the insulin is still hanging around... so I space my meals out a little more now.

Anyway, that was my thought process... even though I'm still new to all this mess, I feel like if someone is able to find a CDE that they like, trust, and get along well with, that it doesn't really matter what Endo or GP you see. The CDE's are going to form a more close relationship with you and if it's a good one, they will go out of their way to help you.

I kinda called mine in a panic a couple weeks ago.. >.> I have chilled out a little since then, I promise!

I am working with my CDE to try and figure this out. Unfortunately, my necessity for low doses of insulin makes it difficult to get the I:C correct, specifically because I don't normally like to eat this many carbs but I have to in order to take the insulin. Otherwise it will be too high or low. 

As for the Lantus I still don't understand the splitting the dose thing because it just doesn't make sense but I'm trying to figure it out and see what I can do. 

I understand about the I:C ratios. Pump should help a lot with that... if you weren't getting the pump, I'd say there are some insulin pens that do fractional units.

As far as Lantus, I can try to explain.. it's really just a game of staving off the high readings that come when it peters out.

Although it's labeled for once a day, it has a high variability from one individual to the next. In any given individual, it may last from 18 to 26 hours. So some people it might last the 18, some people it may last the 26.. and then there's a bunch of us in between that range. Mine seems to last about 22-22.5 hours before my numbers start creeping up. My problem is that I would eat dinner around 6pm, have a decent reading at 8pm, and then all of a sudden at 10pm my numbers would be like 250.

With the split dose, I take it at 10am and 10pm. So let's say I'm ready for my 10am dose. My numbers may have creeped up a little from 8:30am, but because I still have the 5 units on board from my 10pm dose, they don't creep up way past 200 like they used to. When I go to take my 10pm dose that evening, my numbers don't fly up to above 200 between 8:30pm and 10pm because I still have the 4 units on board from my 10am dose. It just helps prevent my sugar from skyrocketing when the Lantus wears out 22 hours in.

I hope your CDE can help with this, julianne, because having to eat more carbs than you like to "match" the insulin is called "feeding the insulin" - suiting the food to the insulin, rather than the opposite. There are people who are especially insulin sensitive or still in their honeymoon who use ratios like 1:40 or even 1:60. If you had a syringe with 1/2 unit markings you could eat say 30 carbs and take 1/2 unit. But yes, I think it's clear you are a great candidate for the pump!

I'm an insulin resistant T2 on much higher doses than you take, but as others have mentioned, I also use my long-acting (Levemir) in an uneven split dose. I inject 30 in the morning and 32 at night. That way, I get a little bit extra coverage in the morning when I'm likely to go high, and a little less coverage in the late afternoon/early evening, when I'm likely to go low. It used to be more un-even (28/32) but I've been tweaking it.

I think you'll do much better on the pump. You'll be able to fine-tune things like various basal rates and tweaks for your exercise and post-exercise.

I look forward to hearing how it's going.

Okay so I am posting this in the same thread as my original post because it still has to do with the type 2 misdiagnosis.

I went for 4 years with a misdiagnosis for type 2, I am curious if now that I have had the blood work to confirm anti-bodies, and am using insulin instead of oral medications, will I now have a honeymoon period. I only ask because I seem quite sensitive to insulin at the moment but it seems kind of weird that one would honeymoon 4 years later.

Also, update- No LOW's in 2 days, not since the addition of the 2 15g carb snacks. So at least that's better for now.

Glad things are going better for you. I'm also a LADA though I only had the misdiagnosis for 15 months before the oral meds stopped working and I had to figure out what was going on. No, I don't believe you will have what is technically a honeymoon period. Some people refer to the period of time LADAs can go without insulin as a "honeymoon" but to me that is not exactly correct. Much more gradual onset is simply the nature of how LADA works.

I do think you will, in time, need more insulin, but probably not dramatically more. I've been on insulin now for 3 years and it went up a bit, but not a lot. When I went on my pump, like most people, the amount I needed actually went down some, so my net gain isn't an awful lot. Unless I gain weight and/or develop insulin resistance (knock on wood....loudly...for both!) I don't expect it to change much, just the usual tweaking. I take about 20 units a day. One difference might be how advanced your beta cell destruction was when you started insulin. For me, I waited a couple months too long as I was hitting the 300s and even 400s regularly by the time I started. My c-peptide when I started was either .38 or .70 (different labs) so I was no longer making much insulin. You may have started insulin a bit earlier in the process than I did (the 4 years vs 15 months is just individual variation). But even if that's the case, I don't think it will be dramatic.

Super bummed right now... I called my insurance company as its been almost a week and they said no one has submitted any claims for durable medical equipment IE my pump. 
I figured the third party provider that Health Plus uses would have submitted the claim by now!  Animas faxed them the paperwork last Wednesday. 

Hang in there! Call and torment them until they send it in :)

Hi: Unfortunately, having a disease like diabetes means you have to be a pit bull! As in persisting until you get the best care possible for yourself. You are doing so great, keep it up!

Still waiting to find out about my insulin pump. Every time I call to inquire they just say they are still working on it. I've been waiting for 3 weeks now!

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