Frustrated and confused

By nipsy Latest Reply 2010-03-24 19:01:28 -0500
Started 2010-03-23 03:30:25 -0500

I am a recently diagnosed Type 1 diabetic after being told for 10 years I was "borderline". I go back in two days to see the blood test results and figure out my next move.

My problem is this: After reading on so many sites and literature the "normal" sugar levels, it makes mine seem just a little off. However, I know when mine are bad. There are times it gets so low that I get dizzy, fall, or even blackout.

When it gets too high for me, I get clammy, sick, and downright off. Like right now, my sugar is 169 and I feel horrible. I can't stop drinking fluids and am shaky. Yet I also get that way at about 125. If my levels go below 100, then I feel horrible as well. I am worried that this doctor is going to blow me off, or try and work it out with diet, which obviously hasn't worked in 10 years, its not going to now.

Am I worried about nothing, or are my levels really not a big deal? I grew up with diabetics, but they all had really really high levels, not these piddly ones I get.

4 replies

GabbyPA 2010-03-24 19:01:28 -0500 Report

Hi Nipsy, Welcome to the community. Hopefully we can help you get some questions to ask your doctor.

I concur with KD, you don't sound like a Type 1 diabetic. Diet and exercise, while important to a type 1, are not treatment for a type 1 diabetic. Type 1 is insulin dependent because you no longer produce insulin on your own. However, type 2 can still use insulin as treatment and that is becoming more widely used, so maybe that is what your doctor meant and you presumed he meant you are a type 1?

Just a little off is well, still off. So I would not want to make you think that you should not take a 169 seriously. A normal, non-diabetic system will top out at about 140. Even if they ate the whole bag of cookies and washed it down with regular soda. So your numbers though still relatively low, are still high and dealing with them at this stage is MUCH better than waiting until you are posting 200's and 300's.

The fact that you black out is a bit worrisome. Have you ever tested (or had someone test you) at that point? That may tell you a lot about what is going on. When you see your doctor tomorrow, don't leave until you get answers that you feel you understand. It is hard to know what to ask when you first are diagnosed, but take a notebook with you and write down what he says so you can look back and as you learn more, you will see what he means...or you will have more questions.

kdroberts 2010-03-23 12:47:14 -0500 Report

Are you on insulin or any other medication? Are you sure you are type 1 and not type 2? I don't think I've ever heard of anyone being "borderline" type 1, let alone for 10 years. Your numbers are also not typical of a newly diagnosed type 1.

The numbers you posted are not horrible by any means, the 169 could be lower but compared to a lot of diabetics it isn't that bad.

nipsy 2010-03-23 13:04:58 -0500 Report

No insulin as of yet, I go in tomorrow to find out the results of all the testing, and we will see then. The doctor is the one who told me Type 1 diabetes, not I. I've struggled for years to know when its too low and when its too high, trying to keep it in line with foods, but after all the weight loss, I can't control it anymore. The 169 is after NOT eating past 8 pm, yet 5 hours later its that high?? I've not gone above 212 that I know of, and lowest has been 68.

After fasting, my numbers range between 88 and 112. I know they aren't high numbers and aren't that bad. Thats my problem. They don't seem that high when compared to other diabetics, but numbers like 169 make me horribly ill and I'm tired of being blown off and told we will wait. I think 10 years is long enough to struggle through on my own.

Thanks for responding.

kdroberts 2010-03-23 13:27:53 -0500 Report

This is very weird really. What type of doctor are they? A type 1 doesn't produce insulin so to diagnose you type 1 and not start you immediately on insulin seems strange. Also, your numbers seem strange as well. A type 1 who doesn't take insulin would be seeing numbers in the 300s, 400s, 500s and higher without them coming down. Type 1 also comes on quickly with no real warning, 10 years is not right. Even if you had LADA or MODY where your insulin needs are not immediate you would still need some serious management and oral medications to help you. I guess you will find out but make sure your doctor explains the diagnosis and confirms that he has done testing for DAG65 and GAD67 antibodies, c-peptide, insulin antibodies and other tests to confirm type 1. Just based on the limited info you post here I would bet a lot of money you were type 2 if you hadn't have said type 1.

Ask your doctor to check your thyroid as well. Some of the things you say about feeling crappy can be attributed to thyroid problems which are quite common with diabetics.

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