I was diagnosed Type I but am wondering if they are right?
I got my C-Peptide results back and it was a 1.7 (normal range is 0.8 - 3.0). When I came home from the hospital I was on 8 units of Humalog before meals and 35 Lantus at bedtime. I am now down to 1 unit for every 40 carbs and 23 Lantus at night and my sugars still run on the low side.
In fact last night I did not take any insulin at dinner time, my BG was 74 before dinner. Two hours later my BG was 134 after eating 68 carbs. This morning my BG was 85 and I ate breakfast, taking no insulin, and my BG is 126 after eating 46 carbs. However, I did take my 23 units Lantus last night at 9:30.
Am I honeymooning, could I be Type II or could the doctors have been totally wrong??
Has anyone else here been diagnosed Type I and turned out to be Type II? I am not overweight and am generally healthy.
Hi Mark - I’m guessing you’re still producing insulin. I think I’m “honeymooning” too but not at a steady rate. Some days I am constantly going low, but other days, I run high on the same basal and w/ the same food and activity. I can actually skip my basal sometimes and not go too high. Now that you’ve lowered your BS levels, your pancreas is probably working a little better. Not sure how long this lasts, but it’s kind of a bittersweet thing. Yeah, you’re producing your own insulin but it isn’t steady/constant to know how to change your units. I’m hoping the pump will make this much easier.
Oh, and the Mountain Dew thing was totally normal before diagnosis. For me it was copious amounts of water and Sierra mist. The day I figured out I was showing symptoms of diabetes, I had about 64 ounces of water in 3 hours.
Hey Mark it sounds to me that you are in the “honeymoon” period. But before you decide please talk to your Dr. Me and my daughter both thought we were cured when that happened to us ony to find out the hard way (for me) we weren’t. Good luck to you and take good care of yourself!!
I split my Levemir b/c it doesn’t really work for 24 hours. I think Mollie said your basal was Lantus - Levemir is just a different basal. If I’ve had 2 drinks in a night, I usually skip my nighttime basal so that I don’t go too low in the middle of the night and I always seem to wake up at my normal numbers, even though there is no basal left. I also used to forget my basal until I figured out there was an alarm on my cell phone, and it didn’t seem to affect my numbers much. I suspect that will change over the next several months.
My current IC ratio is 1:15. That makes it pretty difficult to dose w/ pens that only give whole units, so I’m very jazzed about this pump thing b/c I can actually bolus for 36 carbs as opposed to eating up to 45. I also think I’m a bit more sensitive to insulin in the morning (which seems to be the opposite of most people) b/c after breakfast is when I’m most likely to go low. This is all total speculation as I am really acting like I know it all.
As for Type 1.5 - I give up on trying to define what that is. Some say it’s LADA (latent autoimmune diabetes in adults) which is really what we have. But that is the same thing as getting Type 1 in adulthood. Some say 1.5 is something else. MODY is mature onset of diabetes in the young, so I’m pretty sure you don’t have that. I think MODY is more like teens and kids getting Type 2. I went through the same thought process at first and was so totally puzzled b/c I was at my thinnest ever (due to the weight loss from the undiagnosed diabetes) and I had no Type 2 in my family history. Then I got my antibody test results and showed positive for GAD-65 which means I’ve definitely got the autoimmune diabetes. Your endo should do those tests. I never got a c-peptide test but it seems pointless now b/c if I am producing insulin, it doesn’t change what I do.
MODY isn’t a form of Type 2, because people who have the commoner forms are NOT insulin resistant. The classical definition of Type 2 includes insulin resistance. My insulin/carb ratio is between 1/12 and 1/15. A type 2 of my age and size might have one of 1/5. And I can’t use more than 3 units of basal. A Type 2 of my size might use 30 or more!
However, a lot of people with MODY are misdiagnosed with Type 2 and since they aren’t put on insulin no one discovers they are insulin sensitive! People with MODY respond very strongly to the sulfonylurea drugs that used to be given to all people with Type 2 and now are only given to some.
Also, MODY used to be diagnosed mainly in kids only because only the very worst cases got diagnosed, but I’ve met a few people diagnosed in their 30s (with gene tests) after a GD pregnancy. I should have been diagnosed then had it not been 22 years ago when such things were unknown. It isn’t usual for a 117 pound woman to develop GD a few weeks into a pregnancy and nowadays that would trigger some further testing!
The commoner forms of MODY involve gene defects that cause failure to secrete insulin as blood sugars rise, so for many people fasting bgs stay near normal and they can’t get diagnosed until quite old when they’ve burnt out the beta cells and are mistaken for Type 2s. There is another common form of MODY where the blood sugars are always mildly elevated and cannot be lowered even with insulin but these people don’t get complications.
Also, with the more common form of MODY there may be a very low renal threshold and they spill urine at 140 mg/dl! Some have other kidney irregularities. I personally have an extremely HIGH renal threshold, which is another reason I had so much trouble getting diagnosed. I don’t spill detectable glucose into urine until I go over 250 mg/dl!
I hear from so many non-obese people who have oddball forms of non-insulin resistant diabetes thanks to the MODY page on my site, that I’m starting to think there are a LOT more forms of diabetes out there than anyone realizes.
When there were no real treatments, it didn’t matter. As new treatments come available which respond to specific causes of diabetes it does.
For example, some people with fairly severe forms of the more common form of MODY appear to do extremely well on Byetta and I personally had a dramatic response to Januvia, though I stopped taking it due to it’s possible ability to promote melanoma.
Thanks for the info. I have never been able to find such a good description of MODY. I guess they need to rename it (like they need to do w/ all the different forms of diabetes b/c Type 1 and Type 2 is so lazy) since it says “of the Young” in the actual name. That is just all sorts of confusing.
And I agree with you - I think there are several forms of diabetes and the ADA needs to get off their butts and deal with it. I would prefer that my doctor got to put LADA in my file instead of Type 1, but she can’t b/c Type 1 and Type 2 are her only options for insurance.
Type 1 sure sounds like an option going by what I know so far - have you looked into LADA (type 1.5) diabetes?
None of us can really say without more information though - like: how long ago were you diagnosed? Were you put on insulin straight away? Did anyone do an antibody test? If not, perhaps you could ask for one - it’s not entirely definite, but it’s got a good chance of telling you if you’re type 1. A much better chance if your diagnosis was recent.
It’s worth asking questions and finding out for sure, even if it’s just for your own peace of mind. Unfortunately some doctors treat all forms of diabetes the same, but there are different options available to you depending on your type - you’ll need to do the research yourself though! Have you seen an endo? If not, DO!
I’m a T1 LADA who spent a year or so treated as a type 2. It might not sound like a big deal, but during that year I could’ve started insulin instead of feeling horrible because my diet changes, extra exercise, and pills did nothing for me. I felt so judged, my doctor seemed to assume that I wasn’t doing ‘what I was told’ but omg was I trying hard! Yet my BGs just kept climbing until the doctor finally sent me to an Endo. That year taught me a lot - most importantly, that I should never trust a doctor without researching things for myself!
I went to see my Endo’s nurse practitioner today. She still thinks I am a Type I and that I am over medicated with Lantus and that the extra dose was “covering” my Carbs during the day. While my average for the day is still good I was still spiking 2 hours after high Carb meals. so they cut my Lantus to 15 units at bedtime and want me to try a 1 - 20 insulin to Carb ratio starting tomorrow. Just an FYI, Washington University uses 10% of your body weight to figure your Lantus dose.
They gave me some syringes with 1/2 unit measurement and plan to start me on the insulin pen while we wait to get the pump process started.
I see the Endo tomorrow and will hopefully have further blood work done to get a more definitive answer. Funny story about the Endo appt. I went to make the appointment and was told the first opening was in December. Just so happens the receptionist was checking tomorrows schedule for something completely unrelated and I asker her to see if there were any opening for tomorrow and there was one, she and I were both in shock, I took the appointment!
Jenny, thanks for that explanation. I’ve never been able to understand what MODY was. I think there must be many different causes of diabetes, and it’s only going to get more confusing having similar names for all of them.
I agree about wishing there were more precision in diagnoses. The ADA actually includes MODY diabetes as a 3rd kind of diabetes in their official Diagnostic Criteria document, except that they have their facts wrong and write that you can only have it if a parent has been diagnosed with diabetes, which research has shown is not true.
Many people with the more common MODY genes have impaired glucose tolerance not diabetes and don’t get diagnosed because their fasting blood sugar stays high normal. My daughter has the IGT at age 24 though extremely thin and fit. My brother has high PPs but normal fasting and his doctor tells him he’s fine, so he thinks I’m some kind of health nut. My dad ate a rigid low carb diet from the ages of 38 to 100 (when he died of a fall) so he never got diagnosed either. He said he had to eat that way or he’d pack on weight and feel like crud all the time. If I eat a very low carb diet I’ll test high normal to IGT, too.
My doctor still puts Type 2 on my paperwork for insurance.
Just yesterday I had another long-time friend express amazement when I told him I’d been diabetic for 9 years. He said, “But I just saw you at the wedding and you’re thin!” It would be so helpful if the oft-cited media chant that obesity causes diabetes could be trashed for once and for all.
That makes a lot of sense! Glad the NP was helpful. OTOH, since you were getting the great numbers with all that Lantus, and NOT hypoing, one almost wonders if you’d do better with a bit more Lantus! The main thing you want to do is keep those blood sugars as close to rock solid normal as possible, and in my own experience that can mean doing all kinds of weird and crazy things besides the One Size Fits All treatment that doctors prescribe all people with one kind of diabetes.
But you are just starting out now, and have a lot to learn, so doing what the doc recommends is wise. As time goes on and you get more comfortable with insulin, and learn how to tweak your doses you might feel more comfortable experimenting with the doses until you find the best balance for you that gives you the best control without hypos.
I am Type I according to my Endo. I was not Hypoing to an extreme but I was still going high so the Endo wants me to continue with the Lantus and Humalog. My BG average since seeing the NP on Tuesday has been 102, my highest BG was 168 and lowest has been 65, I would say they have done a good job.
My Endo did the insulin antibody test, a new C-Peptide and repeated my A1C. The only result I have is the A1C and it was 12.3% that is about a 360 BG on average! I am luck to not have any complications. So I know I need to be listening to the Doc!!! If I keep the numbers I have had over the last week my A1C will be much improved when I go back in December to the Endo. I go back to the NP in September. I have just not had time to call her office for the other 2 test results. When I get them I will post them.
I have gained 9 pounds since being diagnosed, but I could use the extra weight and fat as I have a hard time finding injection sites that have enough fat, even injecting at a 45 degree angle I still find muscle sometimes, OUCH!!! The only place I know I am 100% safe is in my rear end but my stomach is pretty safe too.
Well I got my results back, my C-Peptide level was just below the normal range, my result was 231 normal range is 297 - 1419. My GAD Antibody test was negative, about 80% of adults diagnosed with type one are positive. There is no thyroid disease and no thyroid antibodies. My Endo has diagnosed me with idiopathic Type I diabetes. My Endo expects to see complete loss of C-Peptide over the next 1 - 2 years.
Mark, did you have any other antibody tests done? My C-peptide was 1.7 also, and my GAD antibody test was negative, but I was positive for one of the other, less common antibodies to my islet cells. I know that I still have some insulin production as my secondary phase kicks in if I go above about 180 or so. But I am hoping the honeymoon can be prolonged for a long time by keeping my BG normal.
I am new to this website but i read your comment and I also got diagnosed with diabetes at 21 and now i m 22 with a 9 month old son. I was taking metformin but since my pregnancy i stopped since they put me on insulin. Right now unfortunitly i m not taking anything since i dont have any type of insurance. I try to control it by not eatting food that might level my sugar but it sometimes doesn’t work. I m glad i found this website cause it sometimes feel like i am the only one in this world that is young with diabetes. -Vanessa
but my stomach is pretty safe too.