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 would agree with you about not getting enough insulin for the 2 hour mark, but then t seems like I have too much at the 4 hour mark. My CDE says its better to be high then low especially since I have hypoglycemia unawareness. But decreasing these dosages doesn't seem to have help much with that. 
And I thought about splitting the dose of Lantus but I clearly don't need to take any in the am cause then it'll be working at noon and 4 web I'm tryig to avoid lows. Maybe I'll try taking it at like 6p every night. Then it'll peak about 4 hours earlier? 
And until I get it fixed I suppose I'm gonna have to add snacks into my diet again. 

theres your culprit- your not snacking hence 4 hour lows. Technically, you should try and get 5-6 smaller meals in a day. EG, have an apple midmorning, some low sugar/fat free yoghurt etc. Im honeymooning like you and dont need to bolus for such items, you may not have to either. Andi agree, your two hour readings are too high. Up the insulin and snack on healthy (even low carb if you wanted to) foods. Your waiting too long if your not eating in 4 hour windows imo.

You have Lantus active all the time, although many of us don't think it lasts 24 hours. So it's more likely to reduce lows if you have less of it at any given time.

Some people eat small meals, but that is an older concept of diabetes management. If your basals are set right, then there is no reason you should have to snack. If you are going low and then eating snacks you're "feeding the insulin" instead of the other way around. Unfortunately with such a low dose, it's hard to set it right. One option is also to get syringes with 1/2 unit markings, that way you can try to decrease it by 1/2 unit rather than a whole one. Or you can just get a pump...lol. With a pump you can input multiple different hourly rates to accommodate different basal needs.To answer your original question, yes, a pump would help you, because you can have different basal rates and you can make changes as little as .025!

I also disagree with your endo. Doctors tend to overemphasize preventing lows. Moderate lows (I don't even treat unless it's under 60!) come with the territory and if you avoid having them too frequently you can restore your hypo unawareness. Purposely staying high to avoid going low to me is indicative of somebody that doesn't have any useful ideas on how to fine tune doses!

I have had a lot of low blood sugars this past year, many below 50. It has to be below 50 before I even notice now. They are very concerned about this

As for my endo no having ideas, they do have them. My pump was ordered on Wednesday. I am waiting to hear from someone to see about the insurance and if they will approve it etc. Hopefully I'll be able to get one within the next month and that should help with a lot of things. 

Oh, I didn't know you were that close to getting a pump. There is definitely a learning curve with the pump, but you will find it much easier to manage your blood sugars with one. Yes, it will help with a lot of what you are struggling with!

Sorry,I might have come on a bit strong about your endo, but I just wince everytime I hear "it's better to run a bit high".

Yea I'm gonna keep eating snacks until I get my pump at the very least. Then maybe I can get some of this worked out

I eat 40 carbs at breakfast, 60 at lunch and less than 100 at dinner, I bolus 15 minutes prior to eating.

I agree that the insulin is not matching my rise and fall, I just don't know how to fix it. If I wait too long after I bolus to eat, then I go low before I eat... it's like no matter what I do I go low!

You might want to try cutting the carbs a bit. I personally find that when I go over 50 carbs at a sitting my usual I:C ratio doesn't work well. At breakfast that threshold is lower. Also certain types of carbs will always spike me and I've found them impossible to accurately bolus for so I just don't eat them. Everyone has their own list of these, but for me it is cereal, rice and to a bit less extent, pasta. I used to love granola, yogurt and fruit for breakfast. I tried every kind of healthy, hi fiber, sugar free flax added, etc etc cereal and none of them worked, so now I just eat some kind of egg dish with a small amount of carbs.

I have a couple of thoughts that may help you. Since you've read Gary Scheiner's book you probably understand the importance of getting the basal rate (in your case the Lantus) set right. Have you done any of Gary's basal testing? It involves missing one meal at a time and closely monitoring the changes in your blood glucose. The goal is to set the dose and timing of your Lantus regimen so that it metabolizes the sugar released by the liver only.

Once you are satisfied with your Lantus dosing and schedule then you can experiment with your bolus (Humalog) insulin. Have you experimented with giving your Humalog 15 to 30 minutes before you eat?

As you can well appreciate, we can quantify and calculate all we want, sometimes the variability of our own personal insulin sensitivity can throw our BGs wildly out of control, even with all our efforts.

You are doing the right thing by seeking more information. Attempting to gain normal blood sugars is very important. Frustration is normal, giving up is not an option. Good luck to you.

I agree, Terry, that the basal seems off and needs to be set first. Unfortunately this is hard to do when you're very insulin sensitive. I so think julianne is going to thrive on a pump!

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!

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