Totally Wierd Question

Type 1 and LADA New to Type 1 Diabetes
1

OK, as stated above, this is a rather odd question, but after searching the web, I thought maybe someone hear could understand.

I was recently diagnosed with diabetes. It wasn’t a dramatic, scary scenario in which I felt really sick or had lots of symptoms. In retrospect, I was just really craving water. Just water. Which for me and my addiction to caffeine was a little odd. Anyway, I had a routine physical, where I happened to mention this and she checked my BG in office and it was 445. She sent me to the ER and there it was 540. Other lab test came back with something about ketones and my blood ph.? So they treated me, put me on shots with little info and referred me to an endo, which I will see in about a month.

Since then, I’ve been a little hazy, and have become very skeptical. I started having lows, so I’ve stopped giving my insulin like I was told to. I’m also constantly eating loads of sugar and carbs, like I’m testing myself, just to make sure it’s true. Usually, my BG will go up to about 250-270, but it always comes back down. I tell myself that it only went up because I carb loaded. Any normal meal wouldn’t do that, and anyone’s bg would do that with 12 rolls of smarties. My fasting number is only 108, and I can’t make myself take the insulin, if I’m not convinced I need it.

So, now my question. Has anyone else felt this way? Could they be all wrong?

It’s driving me crazy that I have to wait so long to get some real answers.

2

When you go to your first endo appointment they will run some tests on your pancreas to see if it is functioning. Personally I don’t think that a non diabetic person’s BG would jump like that even if carb loading. I have eaten ice cream and cake take my BG and it is 95. My Hubby can eat the exact same thing and check his and it is 270 + Your pancreas might actually still be functioning, but for you to have a BG of 540 is not good. My DD who was diagnosed T1 in Nov. was 520 when she was diagnosed. I watched what she ate like a hawk until I could get her into an Endo. We skipped the ER and the GP. Keep the Endo appointment. Something is definately going on. I would say if you aren’t comfy taking the insulin and have plenty of strips to test test test to watch your BG levels, maybe you can skip it (I personally would do what the Dr. tells you to. ) I could be way off base, but I don’t think so.

3

My GP who diagnosed me & started insulin b4 I saw the endo said that a non D person like him could not eat enough carbs to get to even a 200 reading…the correctly working pancreas would nail that sucker as it started going up…just food for thought

How low are your lows? Did they start you on just long acting insulin or a combo–maybe you shouldn’t stop, just decrease the amount so you don’t go over 140 (where kidney damage can begin) and so you don’t get any lows ( some endos don’t condier anything >75 low)

4

Thanks for your reply. How is your DD doing? Was she symptomatic? Has her insulin needs changed? Sorry, I’m just full of questions, like does your bg really not go above 95?

5

Dear Veronica.

Wow if your blood sugars were in the 500 you are seriously diabetic. The bit about ketones and blood pH is about a thing called DKA diabetic keto-acidosis a potentially fatal condition. I think if your blood is not in the normal pH range you will not be able to eliminate the carbon dioxide in your body and die. Look up on wikipedia.

If I understood your introduction that you are armed with insulin, a blood sugar meter and not too much info on how to use this. This is not a good combo. Insulin is dangerous you have to clear understanding of what you are doing. Low blood sugar are at best a very unpleasant occurance and a serious emergency situation at worst.

If your BG goes up to 250-270 when ingesting a lot of sugar you have confirmed that you are a diabetic. This is called a glucose tolerance test or glucose uptake test. Look this up too.

The fact that you go back down to normal fasting is really good news means that your pancreas is still working somewhat. And you want to keep it that way. Keeping your blood sugar in the normal range is one of the best ways that is under your control. Some people suggest that if you do you may maintain this happy state for a long while.

What do do until you see the Endo? Good question. If you dont want to inject insulin until you see the Endo go on a low carb diet in the meanwhile. You can measure your blood sugars 2 hours after a meal. If they are horrendous you may need insulin.

Not sure what kind of insulin they gave you so I dont dare suggest how to use it.

6

Hi Veronica,

Normally, I’ve usually got a joke or two to throw around. This post, however, is gonna be one of my “tough love” posts, so stop reading now or as soon as I really ■■■■ you off… (oops, did a joke)

You know, sometimes it amazes me how little treatment and support recently diagnosed diabetics get from the medical community. One month to see an endo and you are newly diagnosed? wow

Faced with anything serious, people go thru phases. One of those is denial, been there myself. Reading your post, it sounds like that is right where you are. Don’t worry, it is perfectly normal. However, you have to treat your condition a little more rationally than that. I know, it’s harsh, it sucks to hear, but unfortunately, from what you’ve written you need to do it. The consequences if you don’t will probably be trips to the ER, hell you may get to know them all by name!

What is a normal meal? How many carbs? If I eat a “normal” meal of a sandwich and a bag of chips and not take insulin I will be approaching 600 within a couple of hours.

That aside, “new” diabetics often go thru a “honeymoon period” where their insulin requirements decrease for a while. How long? unfortunately, it varies. That 108 is a good fasting number. However, you want your sugars to be in that range all day long, not just when you wake up. Right now, it might take less insulin with meals than it did before, but it will still take insulin to keep your sugars down. The ADA recommends sugars less than 140, but most of us here, anyway, shoot for numbers closer to 100.

You need to check your sugars, keep track of them and what you eat. You will soon be able to look at a plate of food and “know” how many carbs are there, but you need experience to be able to do that. IT WILL COME, but you have to work for it.

And, we have all been right where you are. Folks here at tudiabetes are great at understanding and offering their experiences and support. Being diabetic is a uniquely personal experience. Everyone is different at how their body’s are affected by diabetes, insulin and just day-to-day living. However, despite the way our bodies react, we still have the same condition and other people’s experiences WILL help you, if you take the time to learn from them.

now for the love part. I was diagnosed at age 7 in 1970. We have one member that has posted here who has been diabetic for 62 years. Another is 91 years old. There are a ton of folks here who may have been diabetic longer than you have been alive. You can do this. It won’t be easy, but if you let your family, friends and maybe us help, you can do it. You can do it all by yourself, but it is a lot harder, I speak from experience on that one. I’ve was mostly self managed for the last 39 years (it sucks btw).

So please take your insulin. Watch your sugars to make sure you take enough and watch your sugars to make sure you don’t take too much until you get the “feel” for things. Don’t worry if you get stressed, if somedays things just don’t work like they should (I call those my “WTF” days).

I know this post may have been a little more reality than you wanted, so feel free to tell me to shut up (my kids do when I’m being stupid).

7

Hey Denise,
I find it so hard to think that anybody wouldn’t hit above a 200 with a lot of carbs. I’ve even questioned whether my meter is lying to me. I’m going to get really huge if I keep deliberately trying to raise my bg and feel guilty too. It can’t be good for me.

Currently they put me on novolog at meals and levemir morning and night. I’ve had two lows, one of 45 and the next was a day later, and it was 39. Both were really scary, so now I’m only taking the one shot of Levemir in the morning of 7 units instead of 14. I’ve stopped the novolog completely. I wonder what harm it could do to take a medication I don’t need, besides those nasty lows.

8

Thanks Anthony for the info. I will have to look up the DKA thing. I really didn’t get much of an explanation about anything, just the $75 bill for the copay and some scripts and samples. And of course the this is how to inject saline in your stomach. I didn’t actually do my first shot of insulin til I was alone at home. The saline was easier!

So, I would go low carb, but I’m a vegetarian. Most of my diet is carbs and gummy bears. I’m afraid I might lose weight if I lose my main food source, and I really can’t afford to.

“this happy state for a long while.” Does that mean it will go away for awhile…forever? And what is considered a “horrendous” blood sugar?

9

Scott,
I certainly appreciate your tough love (and jokes). I’m sure denial is part of it, but when your numbers don’t seem that bad, it’s hard to believe. I mean if I was in the 200s all the time or it I went up to 600 after a meal, well then I’m sure it would be easier to accept it and treat it accordingly. I know that if I stay on the amount of insulin they put me on, I’d be low all the time. I think I could go without and truly be OK, but just in case, I’m still taking one shot. No one told me how to adjust the insulin, and insulin is not something I’m messing around with. I think I’ve already had 2 weeks worth of WTF days, starting with my physical! Again, I’m annoyed I have to wait so long to talk to a DR, and deep down I think he’ll tell me it’s a mistake. I’ve read about stress hyperglycemia, and have wondered if it’s an isolated incidence. Hanging on to hope I guess.

I’m certainly glad I found this site with so many wonderful people. It helps to know others are thriving and willing to give their advice and experiences. Thanks Scott!

10

ok, but do one thing… live a normal day and test your blood sugars every two hours and see how many of your readings are at 120 or below. I just worry that you are going end up in the ER after a meal or two. You’ve already experienced the signs of high blood sugars so watch out for them, ok? I hope it was a mistake, and it has been with others.

Your endo will run blood tests to determine whether your pancreas is losing the ability to produce insulin. Write down a list of questions you have (and don’t let him brush you off on answers), if you don’t understand what he means, ask him to explain it better. Sometimes, they forget that not all of us have years of medical training and jargoneese. Read around on here for a while and you’ll get a good idea of what you need to find out.

Keep us updated on what goes on!
Scott

11

It could be that you’re still producing a bit of insulin on your own - some diabetics go through what is called a ‘honeymoon phase’ when they’re first diagnosed. Or it could be that you’re not on the right insulin dosage or even on the right type of insulin.

It does sound like you need it, though. Non-diabetic people don’t hit 500, and that is a good indication that something is afoot with your pancreas. :slight_smile: I would call your doctor and tell them that the dosage you’re on currently is taking you too low and that you’d like for them to adjust it to better suit you and your day to day activities. I’m sure the doctor and or their staff would be happy to help you, even though you haven’t been in yet.

I know this is hard to come to terms with, but there are a lot of really great supportive people here if you should have any questions. And I’m sure your endo. will clear up any questions/concerns you may have about this when you get in.

12

Dear Veronica.

Wow, nonchalant your health care system is, although they seem professional about the billing. Our Commie one would do much better for the patient. So at least they showed you how to inject salt water into tummy.

Damn, a veggie diet if it is high in carbs not the best and no comments on gummy bears. Then you can cut calories on a short term basis that will improve BG a bit. Are nuts veggies? if so they are good. Avocado is good. Lot of calories, fat and low in carbs.

Happy State: There are 2 main parameters that describe a diabetic 1) How well your pancreas is working and 2) how insulin resistant you are.

The best possible case is somewhat working pancreas and no insulin resistance. The worst possible case is pancreas not working and insulin resistant. This is still called Type 1: damaged pancreas and Type 2: insulin resistance. Most diabetics have some degree of both parameters and are not theoretical pure type 1 and not theoretical type 2.

You want to have a working pancreas with low insulin resistance. This will never go away without a major cure and if you do not take corrective measures it will get a lot worst.

Over 230 , 2 hours after a meal would be horrendious.

13

Hey Veronica,

Please take your insulin. I was DKA, almost died & it was no fun. Normal fasting (I’m assuming you mean when you first wake up) is below 100, though 108 isn’t horrible. I’ve tested my husband after he’s eaten enough carbs to send me into a coma & he’s never been high. To stress what the others have said–250-270 after meals is high! The highs cause damage to your body, to every organ in your body.

When you say that your numbers come back down, to what?

You cannot eat loads of sugar & carbs if you want to control diabetes. It’s a fact of life.

I’m very sorry you’ve received no support or help. Infuriating & irresponsible, but you can educate yourself. We all end up doing that anyway. There’s a lot of info here you can search. www.diabetesincontrol.com is a great site & there are many others. One of the best is Jenny’s blog on Diabetes 101 http://www.bloodsugar101.com. Please check it out.

Keep records of your meals & your insulin. Your endo will need this to determine your doses. In the meanwhile, stop the carb overload, test yourself often.

What did the hospital tell you to take regarding insulin doses for meals?

14

Don’t diss the gummy bears. LOL
Nuts are not veggie, and I know they are supposed to be good for you, but full of fat. Little fat phobic. I’m just really athletic (runner) and carbs pretty much fuel my activities. I actually thought I was REALLY HEALTHY before this.

So maybe when I see the endocrinologist he’ll tell me what the problem is. Meanwhile it’s good to know what a horrendous BG is. Thanx!

15

Thanx again Scott, but I can’t test too often. Strips are expensive, and they gave me a script for 3 times a day so I have to conserve. I think I’m supposed to test before meals, but I’ve been testing after since I stopped the Novolog.

I will certainly stay watchful, and do some serious research before I go see the specialist. Although, if I ended up back in the ER, then I’d know, right? Maybe I’m just glucose intolerant or can take oral meds.

16

Hey Gerri,
I appreciate those links. I have a lot of research to do. It seems a little daunting, but I’m tenacious. At least now I know 200s aren’t “normal”. Something to consider… I guess I should stop trying to incite high numbers, it’s just the only time it seems real. I’m so weird.

Usually if I test before the next meal I’m around 120-160s. Keep in mind I’ve only tested before a meal a few times. Can’t waste my strips, especially since I burned through a lot of them the first week.

They had me on 5 units at meals and 2 shots of 7 units of long acting. Total of 29 units. I weigh 104 and am 5’4" tall. Doesn’t that seem like too much?

17

I’m so needy, I hate this…
so what doctor should I call? My GP who hasn’t seen me since the ER put me on insulin, the doc I saw in the ER, who didn’t help much to begin with, or the specialist who has never seen me, and probably won’t help until he sees me in person? Can you tell I’m getting just a tad bit cynical?

I’m so grateful for all of your responses, and for now I’m relying on you and the internet. Thank goodnes for the internet/ It’s the first time people have answered any of my questions. THANK YOU!!

18

Veronica.

If you are fat phobic and protein uncertain then there is only carbs remaining and that is the worst possible choice for a diabetic. Well when I first developped diabetes low carbs wee not an in thing. So I ate ones that turn into blood sugar as slowly as possible. This is called glycemic index. Look this up and chose your foods with the lowest possible value. There is a grain called Quinoa and boiled rye kernels both not bad teryaki or soy sauce.

You now have a very serious disease that will need adjustments and a lot of work to stay somewhat healthy.

You know what the problem is the evidence is 100%.

19

Call the endo… it is very possible that you can get in with a Certified Diabetes Educator (CDE) or at least on the phone with one in the next day or two. There will probably be at least one in their office. Most major hospitals also have diabetes education centers that I’m sure you could get in with quickly. DO THIS.

Your insulin dose varies depending on your body. I’m twice your size and was taking 40 units long acting a day and 18-25 units with meals. You are not on very much insulin. Even on my pump, I’m taking over 70-80 units a day.

Veronica, call the endo, they may be able to help you out with some strips. They’ve let me try samples of different insulins, so ask them.

The more I read your responses, the more I am convinced that you are diabetic. I see excuses, denial in what you reply, I hope you don’t have to learn the hard way.

You are not being needy, you are doing exactly what you should be doing when something serious is going on that you don’t quite understand. Getting answers.

Once I was going thru a particularly rough time in my life and a friend said to me "Everyone has a cross to carry in this life. Some of those crosses are light, some are heavy. Sometimes they just seem heavier than they really are. And there’s not one damn thing that says you have to carry that cross all by yourself

20

Hey Veronica,

Hope you’ll believe me when I say that I know how you feel. Lots of sisters & brothers here who also totally understand. We’ve all been there. It’s so overwhelming, Daunting, indeed. Honey, just take one step at a time. Finding Tu D is a great first step & we’re here for you.

You’re not needy, just needing answers. Totally different.

I’m tenacious, too! Tenacity is a good trait to have for taking care of yourself. I was up until 4 AM night after night seeking answers & help.

120-160 before meals is high.

Yep, don’t incite those numbers. You’re a diabetic. Now, move on to taking control.

Insulin doses are specific to each individual & also dependent on what you eat, how active you are & your size. Also dependent on hormones & often time of day.

Gummy bears & smarties don’t cut it:)

I’m angry beyond words that the hospital just gave you a dosage with no education at all! Want to scream. What should have been done is to either give you a sliding scale (which is how some start out). Basically, this means that if your BG before meals is a certain number, then you take X number of insulin units to bring you back down to a target number (anywhere usually from 80-100) & then X numbers to cover the meal. The most effective way to figure out doses is by carbohydrate counting. This is really easy, but is trial & error. So to answer your question, I can’t really say that your doses are too much, but they probably are if you’ve hit lows a lot.

Please call the hospital & tell them to change your prescription for strips to 10x day. Absurd that the Rx is for three times a day. You’ve got to be able to test more to know where things stand. Testing is power. You need to test first thing in the morning, right before meals, two hours before meals & before bed. You also need to test whenever you feel low.

As Lauren said, newly diagnosed diabetics often have some of their own insulin. Taking insulin will help preserve whatever beta cells you have & is a good thing.

Please take your basal long lasting. One shot as soon as you get up in the morning & the other right before bed. Also take your rapid acting before meals. Try taking slightly less to prevent the lows if you can’t get advice from a nurse, doctor or CDE. But, you’ll only know if you’re taking sufficient insulin if you test & record your numbers.

Keep us posted & keep asking questions.