Okay so my endo at my last appointment told me I was more than likely LADA due to my c-peptide continuing to drop so quickly and that I am underweight and my blood sugars are becoming harder and harder to control. My c-peptide last March was 2.7 with a BG of 131 my c-peptide in Decemeber was 1.5 with a BG of 137 so it dropped 1.2 points in only 9 months. He told me that my A1C of 6.1 was excellent so I did not have to go on insulin yet. Okay but what I do not understand is the antibody testing… he tested me for islet antibodies and it came back negative. Did you guys have the islet antibody test or GAD? IF the islet antibody test came back negative then would the GAD come back negative as well?? This is confusing to me… by the way I do have hashimotos autoimmune thyroid as well.
Hi, there…I am so interested in your post. I tested negative for antibodies last month, but my Endo says I am diabetic and “insulin deficient” but not insulin resistant. But because of no GAD antibodies, she is considering me a type 2 for now. I do not know whether she tested me for the islet antibodies, too. I will see her at the end of Feb and I have a bunch of questions to ask her.
My A1C was 5.3 in Dec which was great…and I’ve been controlling my BG really well with diet (very low carb intake) and my Endo put me on onglyza…but I am just not sure how well the oral med is working. For example, I had a turkey chili for dinner the other night and a salad. I decided to splurge and have some dark chocolate for dessert. My BG was fine (high 90’s at 1 hr and at 2 hours…but I woke up at 3 a.m. and just decided to do a random check: 155!!! And I checked twice…it wasn’t just a fluke. So what is going on???/
I meet with the dietician tomorrow a.m. I have all my meter readings downloaded since 11-23-10. I have examples of menu and workout schedules. Basically, I don’t feel I can eat more than about 25 carbs per meal and that is only at night. Otherwise, I stick to about 15.
So, I just had a small packed of fresh popped popcorn with 1 oz of hard cheese to add some fat and protein. I’m going to test at 3o mins, 1 hr, 90 mins and 2 hrs…I’m just really curious to see what the heck the Onglyza is doing for me. I may add a bit of fruit on top of it…half of an apple. The popcorn had 14 carbs…then the 1/2 apple…
Oh, I meant to tell you, I have Hashimoto’s as well and my Dad and his sister were both adult onset autoimmune diabetics…
I wish I could do a better job of answering your question…
Best WIshes
April
That’s what I was wondering…thanks for your reply!
Sounds like your numbers are great! If I eat over 10 g carbs my blood sugar is about 200 but then again I am not taking any meds. You may have the very early stages of LADA, my numbers used to be much much better than they are now but have progressively gotten worse pretty quickly over this past year. You should get checked for antibodies and watch for worsening blood sugar. Let me know what you find out!
Hi there! I was diagnosed with LADA after having my baby, and my “gestational diabetes” didn’t go away. I had a relatively good c-peptide, but below normal, and it was the presence of antibodies that confirmed the diagnosis for them. I went to a research conference this past weekend and they are working on halting diabetes onset by treating with “vaccines” that induce immune tolerance. They are starting to look at people with decent c-peptides, but clearly “high risk” for developing full autoimmune diabetes. The define “high risk” as having antibodies to at least 2 of the 4 antibodies that are typical in diabetics.
What that means to me is that for many of us, the immune attack can be against a variety of things, and we will not consistently have antibodies to everything. Therefore, you may not have islet antibodies, but you might have GAD or insulin antibodies… The most important measure though is your c-peptide, and your increasing blood sugars. They all sound like Type 1 or LADA, and an A1C of 6.1 is great, but post meal spikes are not good for your health even if the average overall blood sugar is okay.
Best of luck!
I had to go on meds…I just couldn’t sustain eating what I had to eat eat. The final straw was eating half of a bell pepper (it was a yellow one) and shooting up over 200. By that time I had had eliminated all fruit, all breads, rice, pasta, any processed food of course, red veggies, all potatoes, tomatoes. I was down to lettuce, broccoli, eggs, lean meat, cheese, nuts…well, you get the picture. I exercised like crazy and my BG was staying okay, but I was losing weight fast (not from DKA…just not enough calories) and I was not very happy.
In any event, I am extremely vigilant about testing. Daily. And now I have the software for my meter and can view the trends, which I don’t plan to be too anal about…but will look at monthly. VERY helpful…Thanks so much for sharing your story…I’m seeing the Endo again on 2/15 so at that point I’m going to get copies of all my labs, see how often I should be tested for antibodies. Also will ask about MODY etc… In the meantime, I just need to relax about it a little. After worrying for about 8 weeks, it’s time to chill a little! So, it is the status quo between now and the next endo appt unless my numbers change a whole a lot all of a sudden!
I am in the same situation as you. My c peptide levels have gone down in the last eight months and have tested negative for antibodies. I am doing the low carb thing and walk at least two miles a day to keep my bg down. I spike after meals into the low 200’s but will come down in a couple of hours. My fasting levels are in the 90’s. My endo is not sure what I am because I am thin and don’t fit the type 2 profile.
In people with adult-onset Type 1 diabetes/LADA, the most common antibody is GADA, with ICA not too far behind. IA-2 is somewhat rare in LADAs. All spelled out, the antibodies are glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies. One thing I would caution LiL MaMa and April about is that studies (see my blogs for references) have conclusively shown that going on exogenous insulin early preserves remaining beta cells. Even small amounts of long-acting. Best of luck to you! Just be persistent and your own best advocate to get the best medical care for yourself.
Wow okay so you do sound a lot like me! I am basically doing and am where you were before going on meds, Barely eating, very low carb, exercising constantly and anything I eat sends me to 200. What meds did they put you on? Is it helping at all? Keep me updated!
That is why I want to be put on insulin to preserve the remaining cells but my endo is refusing because my numbers are so good…but he doesn’t know what I’m doing to get those numbers!!! So should I ask to be tested for GAD antibodies at my next appointment?
I would request the full suite of antibody tests. Also, we do have one TuD person whose doctor told her that she was not GAD positive, but when she actually saw the lab results she was slightly positive, so indeed did have autoimmune diabetes. You are “slightly antibody positive” like you are “slightly pregnant!” I would let your doctor know what you are doing to achieve these results, and insist that you be put on insulin (even small amounts of long-acting) to preserve your beta cells and prolong your honeymoon. Let us know how it all goes.
Thanks for the wonderful advice Melitta 
Wow, Melitta…that is sooo interesting. I am thinking of getting my labs faxed to me. I think I’ll call tomorrow.
OMG…yes…day and NIGHT. I am on Onglyza…which is a newer version of Januvia. There are apparently 3 ways that oral meds lower BG: 1) stimulate insulin production from remaining beta cells; 2) decrease insulin resistance; and 3) reduce the liver’s output of glucose.
It seems like all of the meds hit 2 of the 3 of these methods! Onglyza and Januvia stimulate insulin production and reduce the liver’s glucose output.
Yes…I have seen a HUGE difference. I got pretty used to eating low carb…so I haven’t gone back to huge pasta dinners (LOL)…but my intake has surely increased.
Yesterday, I met with the dietician at the Endo’s practice. The only thing she fussed at was that I was not eating enough carbs…I took in a print out of all my BG readings for 6 weeks and after lunch and dinner…my BG isn’t going up at all after lunch or dinner…and she says it should go up at least 15-20 points! So, I need to eat some more carbs…So, a bit more brown rice, fruit, low carb bread (my favorite is from Trader Joe) and even a bit of forbidden stuff…like a sugar free pudding with 12 g carbs or something! Whoa! Tonite I had a Walker Shorbread cookie with a cup of warm 2% milk (I’m about to go to bed)…what a treat!..Of course, I just walked 4 miles at 7 pm…and my BG was only 79 when I got home…so a carb or two is in order!
Only worry about the Onglyza is that I’ve heard it doesn’t preserve the beta cells like insulin, so I want to talk to the endo about that when I see her in Feb…
But the difference from a quality of life perspective is HUGE!!!
Take care!
Anni
One of my most favorite diabetes researchers is Ralph Defronzo. He won the ADA Banting award in 2008 and has been a vocal critic of ADA/EASD approach of stepwise oral medications and instead has suggested another protocol, immediate triple medication. More than a decade ago, he advocated a “triumvirate” of defects in diabetes as you indicate, but now he suggests that there are actually “eight.” He has done extensive work on beta cell dysfunction and looked at how various medications preserve beta cells. After his lecture in 2008, the ADA gave him a grant to either “put up or shut up.” The first results are coming in from his trial and the results look good.
He discusses that work in This presentation from December. He has a great discussion of how different oral medications impact all the three primary and total of eight defects. Of particular note is his assessment of how various drugs preserve beta cells. His conclusion, Byetta and Victoza are far superior (over Januvia and Onglyza) for preserving beta cells. His reasoning is that that Januvia and Onglyza reduce the inhibitor of GLP-1, while Byetta and Victoza directly increase GLP-1 and he has charts showing the dramatically different insulin response and preservation properties.
I know you have had luck with Onglyza, but it is something for you to think about.
Wow…thanks for the reply I am just basically a diabetic robot at this point revolving everything around my diabetes UGH!!! So this gives me hope, especially since my dr is refusing insulin at this point. Maybe he would give me an oral.
I am currently struggling with the same situation. Every article or journal I read points in the direction of insulin therapy. I am slim and very active. I do not consume bread products and eat a very low carbohydrate diet (of which mostly comes from fruits and vegetables). I saw a significant reduction in my A1C the first year but now it is creeping back up again. My doctor refuses to introduce insulin because he also believes my numbers are “ok” but he does not realize how restricted my diet is. I am currently looking for a second opinion and hope to hear back from an Endo in Syracuse. It is completely frustrating to know that you are doing everything in your power to try to be “normal” but what you truly need is not being provided by a medical specialist. It is hard to take “no” for an answer when you truly want the best for your body. I believe you definately should ask to be tested for the GAD antibodies (my test was positive and was also told I have low insulin production). Continue to educate yourself and as Melitta mentioned, we HAVE to be our own best advocate.
Oh, yes, we HAVE to be the Quarter Backs of our disease, to use a “male” sports analogy. But it is a good one. If your doc doesn’t accept this…FIND ANOTHER DOC! Seriously. A friend of mine who is a very successful business woman has breast cancer I and I only found out 2 days ago, though her mastectomy was in late Dec.
Well, SHE told me she decided against the top oncologist in the city b/c he was obviously “Command and control” and she was NOT going accept that. And, I have to say that I feel the same way right now…after the health problems I have been through in the past 12 months.
I have been dismissed and discounted and ignored and I simply WILL NOT STAND for it any more. If I do not get copies of my lab reports, if I do not get answers, if I do not get full knowledge…I WILL WALK.
I am just as intelligent as the doctors. I did not choose to go into their field…so I am not as well trained…but I can understand the concepts JUST as well as they can, thank you. In fact, I have MADE diagnoses they have missed because I spent the TIME that they could and would not to dig in and roll up my sleeves.
Sorry, if I sound a tad militant…but I guess, at this point I am.
I would go back to your Doc, Lil Mama with a slew of questions ALL written down in bullet points on a piece of paper…outlining what you do know, what you do NOT know and what you WANT to know. Put it in black and white and have 3 copies. One for you, one for the doc and maybe one for the nurse or the resident who might also be in the room.
And go from there. And if the Doc is offended…why then look elsewhere…
Best wishes…
Anni
Love your spunk.
Hi Jean: Because you are antibody positive, you definitively have Type 1 autoimmune diabetes, and the only treatment for T1 is exogenous insulin. Yes, LADAs can go for a time without insulin, but why?! Crazy as it is, some people here have gone on insulin by just getting R or NPH (which don’t require a prescription). But hopefully you can convince your doctor to do the right thing and prescribe some of the newer analogs.