I was diagnosed with Type 2 seven years ago at age 41. Two years later, I got the true diagnosis of Type 1.
I’ve been on the OmniPod insulin pump for a little over a year (and I love it!). A couple of weeks ago, I wore a continuous glucose monitor for five days – and may have learned why I often go low mid-morning. The report shows a steep, smooth decline in my blood glucose right after I have breakfast. That didn’t happen at any other time. My diabetes educator believes that my pancreas may still be kicking out some insulin in the morning. That hadn’t occurred to me! I thought that my pancreas was a full-time slacker.
Have any of you gone through anything similar?
I had a blood draw for the C-peptide test a couple of days ago to find out if I’m still producing insulin. I never had this test before, just the GAD.
It’s highly likely that you are still producing insulin.
Actually some research by Dr. Bernstein (author of the Diabetes Solution) shows that some people with type 1 for over 50 years still produce small amounts of insulin. So it’s very possible that as a LADA you produce some insulin still.
I don’t know if I have ever had a c-peptide test, but I was diagnosed in ketoacidosis at the age of 21. And I seem to get ketones too often to actually have some insulin production, but I would be interested to know mine as well!
A nurse called me today with the test results: abnormal, confirming diagnosis of Type 1. When I asked what the value was, she said that the report said only “abnormal.” She paused for a moment and said, “Abbie Normal.” I replied that I certainly am – and we both cracked up. (A reference from the movie “Young Frankenstein.”)
My diabetes educator will go over the results with me next week and I’m eager to know more.
In a funny way, the “confirming Type 1” part was validating for me. I’m the one who did the research and pushed to be tested for Type 1 and the GAD test was at the low end of normal but the endo said that I was in the early stages of Type 1. This test absolutely confirms the diagnosis and makes me feel proud of myself that I pushed to get the right diagnosis.
Your situation with ketones is interesting because I’ve never had them – even when I was over 400! I didn’t realize that ketones were related to actual insulin production. It’s a good day. I learned something new.
Good for you for pushing for an accurate diagnosis! Let us know when you know the results… I’m curious about how much insulin you are producing. They probably did the c-peptide test, which will tell you that!
I just got diagnosed as LADA in February, just before my 42nd birthday. My GAD tests were higly positive with results in the 40 range, but my C-peptides were down at the very bottom of the normal range, so I’m still producing a fair amount of insulin on my own. I’m currently taking 18 units of Lantus once a day, and that (along with diet and exercise) was enough to lower my last A1c down from 7.6 at diagnosis to 6.3 last month.
My fasting bgl is pretty erratic, ranging from 70 to 120 on a regular but random basis that I can’t pin on anything in particular. Like you, however, my post meal test at around 10am is remarkably stable, usually right around 100 (I usually eat the same breakfast - egg whites and oatmeal). It must be my remaining beta cells kicking in.
I did a test drive on a cgm a couple of weeks ago, and it didn’t turn up anything too erratic for me. Overnights were stable, post meals were pretty moderate rises, and overall I was within target ranges most of the time. For me, though, just knowing I was on the cgm and that my every move was being watched caused me to be more dilligent in my diet than usual, so I didn’t get the “real world” results I was hoping to see from my typical far-from-perfect food choices.
I too was originally diagnosed by my GP as type 2. He referred me to an endocrinologist, and in the two months it took to get in to see him I did a lot of research and strongly suspected I was LADA. I was very relieved when my endo agreed with my suspicions and ordered the GAD and c-peptides, the results of which (above) were definitive. I would have kept shopping for another endo if he hadn’t ordered those tests.
Congratulations on your persistence and getting the right diagnosis!
Hi there Janet, my name is Jody and I was diagnosed fully insulin dependant back in June of “09” It has been a strugle to figure out what is going on and how to control it. I know what you are say about producing insulin still, I myself find this a very frustrating thing to have going on, and I say this because I have this problem but it is very spuratic and happens at any time and any amount. I work 2nd shift and operate heavy machinarey, I have gone from 244 down to 31 in a matter of minutes( thank god though i was very noncoherant i follwed directions very well) and when this happens i lose complete time frames, its very scary. So trust me i know how you feel.
The first endo I had explained it to me when I was first diagnosed. My pancreas seems to produce various amounts of insulin. When my sugars get too high, it causes it to stop producing as much; when my sugars are good, my beta cells decide to start working again. This was in 2004 and my insulin needs have risen, but they still fluctuate, hour to hour, day to day, week to week. I am constantly tweaking my pump’s basal and bolus amounts, trying to figure out the patterns and then trying to stay ahead. Drives my health care team nuts. I’m real good, then I get overwhelmed by it all, melt down, and start over. Frustrating and stressful. Sort of like having an employee who may or may not decide to show up for work, and when they do, they may be overly efficient, or go back home. A roller coaster ride with no end.
Hi Mary,
Your recent posts about having to constantly tweak your Insulin needs from day to day stuck a big YES chord with me. As I am also a LADA type diabetic, diagnosed only when it was very advanced, this is the way it is has been for me since going on Insulin therapy 8 years ago and there is no question but that I am Insulin dependent.
What I am wondering is, is this daily, meal to meal, almost hour to hour tweaking, and in my case
susceptibility to lows out of nowhere especially characteristic of the LADA type? So little is known.
Just wondering…
How’s it going?
Keep posting!
Tess
Once I finally get my basals/boluses figured out, the numbers are usually good for a few weeks before I need to tweak them again. Other factors contribute: how stressful is my life, am I working as a teacher, am I performing, have I been ill or injured? And sometimes my blood sugar just drops precipitously. So when my meter says 85, I have to figure out whether it is going to stay there or suddenly plummit. If I trust falsely, I could get in trouble on the road, in front of a classroom of adolescents or onstage. If I am wary, treat a low that’s not coming, my blood sugar soars, which also adversely affects my performance teaching or acting. That’s why I would really like a CGM. Also, I sortof do my tweaking a la zen (this seems like it might work). Using the force, blindfolded, peeking occasionally. Exercise, carbs and temp basals: I get the theory, which buttons to push, but beyond that I haven’t a clue.
I follow Dr. Berstein and am uber low carb. Although I have variation due to exercise, stress, sickness, and time of day, I find that I stay within a small range. I eat most of my carbs in the evening when my cortisol is the lowest, but this won't work for someone who does shift work. I've been doing this for a year and still don't need insulin. Dr, B's diet isn't easy, at first, but it really works for me.
