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Permalink Reply by Korey on September 15, 2011 at 5:44pm

I have had a similar experience.

In January 2010, at the age of 37, I went to my doctor with a complaint weight loss and excessive urination. I have no family history of diabetes and no risk factors for diabetes. I am 6'2" and weigh 185 lbs. Fasting serum glucose was 333 and urine glucose was 500. I was told I was a type 2 diabetic and would need to start metformin and glucophage. I asked if any additional testing needed to be done to confirm type 2 rather than type 1 and was told no, that everyone my age who is diagnosed with diabetes is a type 2.

Not satisfied with this explanation, I went to another doctor for a second opinion one day later. Second physician performed HgA1C (11.8), c-peptide (1.6, with reference range 0.9-7.1), fasting glucose (292), and random insulin level (3.5 with normal 30-250). Second doctor diagnosed me as being type I based on low random insulin. He started me on long-acting Lantus. Even with a very small dose of lantus (slowly titrated up from 2 units per day) and no other diabetic medication. My fasting blood glucose began to come down almost immediately, indicating no insulin resistance and another indication that I was a type 1 rather than type 2.

Using only long-acting Lantus, with no short-acting insulin before meals, dietary changes, and regular physical exercise, my A1C continued to drop.

In July 19, 2010, I had to take my mother to see an endocrinologist for a thyroid issue and thought, while I was there, I would get his opinion as well. Endocrinologist performed C-peptide (2.7), anti islet-cell antibody (negative, indicating not a type 1), and A1C at that time was down to 6.3. Based on islet-cell antibody test being negative, endocrinologist said I was a type 2, told me to stop using insulin therapy, and to begin diabetic oral medications for type 2 (onglyza and actos-metformin).

I discussed with my primary care doctor and decided to decline advice of endo. because I figured if just using lantus was working, why should I change. We did decide to try some metformin in addition to insulin just to see if it would help bring my numbers down even more, without adding additional Lantus, and sugars did come down some.

So, now, almost 2 years later, I am only using 25 units of long-acting Lantus once per day, no short-acting insulin, and metformin twice a day. I limit my carbs, go to the gym every day, and have great control using only this regimen, with A1C down to 4.7 as of 06/29/2011 and A1C of 4.8 as of 9/14/2011.

I have now decided, after 2 years, that for me it doesn't really matter whether I am a type I, type 2, or LADA. My therapy is working, my blood sugars are under good control, no highs or lows, and I am healthier and happier than I have ever been in my life.

Hope that helps.

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Permalink Reply by Kimberly on September 16, 2011 at 7:13am

The GAD-65 test is not the only antibody test for T1. Besides that, just because you don't show the markers for any of the 4 tests out there doesn't mean you aren't T1. I would suggest getting a bolus insulin, too, though. Your Lantus is probably covering for the food you're eating and you might me able to dial down that dose if you covered carbs with the bolus insulin.

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Permalink Reply by catandmouse on October 12, 2011 at 3:06am

I am currently being treated as somewhere between Type 1 and Type 1.5. I was diagnosed as a Type 2 diabetic about 6 years ago at the age of 50. I was overweight and hadn't tested negatively previously so it was a reasonable decision. I was passed around several Endos until I finally stayed with my currenty one, who told me straight out (just by looking at me pretty well) that he reckoned I was Type 1. He did the tests and confirmed it.
He reckons my pancreas was hit by some kind of infection. We obviously checked out for anomalies, such as cancers, but they were all clear. He told me he could try and find out what it was, but that there was little chance of success and that it wouldn't change the treatment anyway, so I didnt bother.
So I am now being treated as a Type 1, but with a small amount of pancreatic activity, which translates into an insulin pump with a couple of other medications.(glucophage and januvia)

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Permalink Reply by russell.stamets on October 12, 2011 at 6:30am

I was diagnosed LADA in May 2009 (A1c of 11.1). I was fortunate to have a DO who suspected it at the start. I'm also lucky he said there was no evidence for better outcomes for the immediate use of insulin when I said I would do anything to avoid it. He said the oral meds and lifestyle changes would work for a while if I wanted to buy time. Quitting alcohol, very strict diet, a few researched supplements, acupuncture, meditation, and more have me at A1c of 5.5 now and holding. I cut out the glipizide 6 weeks ago. Just metformin now. The science on LADA is hazy. The kneejerk use of insulin is troubling. Here's part of a conversation I had a while back with my DO. We'd just gotten results showing I was positive for GAD but had a 0.0 on the IA. Here are 2 questions I asked my DO at this point along with his answers.
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Q: How is it possible that it could be LADA or autoimmune-related when the IA (islet-antibody) test showed 0.0?
A: No test is 100%. GAD is positive in most LADA such as in your case. The other antibodies are not as specific in LADA but often in Type 1.
Q: How could it not be autoimmune related when the GAD indicated as much and I don't seem to fit Type II?
A: I believe you are LADA and, therefore, autoimmune. There was a study that looked at 5 criteria: 1) age <50 2) BMI <25 3) Acute symptoms ie. Weight loss, polyuria, poly dypsia 4) personal history of autoimmune disease 5) family history of autoimmune disease. The sensitivity was high if you had 2 or more of these and you have the first 3. Then by having the positive GAD pretty much confirms this.
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I think as far as the science goes with LADA, this was a sound analysis he provided. I’m hoping I can prove my DO and the accepted evidence wrong about the assertion that LADA leads to insulin, period. Anywhere from 2 to 12 years before you can’t control your BS any other way. Originally, my hope was that however long I could delay it might see the development some magically perfect pump, or viable islet transplant, or... another pill? It’s only in the last 100 days, when the predicted, “inevitable” upswing in my carefully tracked morning fasting numbers flattened, and then dipped, and stayed below 126, that I began to let myself contemplate some kind of reversal. My understanding is that the best I could’ve hoped for was a flattening of the trend, not a drop close to normal. But I won’t know for sure for years.
If you're new to this, it's a firehose of confusing, contradictory information. Take your time. If you want more detail of my experience then I can put here, I'm recording all that full time work will alow on my blog (russellstamets.blogspot.com) Keep asking questions. Sort. Ask some more.
Good Luck
Russell

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Permalink Reply by Lila on October 13, 2011 at 2:26am

Why is the use of insulin troubling? If you need it, you need it.

If I was diagnosed with myopia, I'd go get a pair of spectacles or contact lenses. Eating more carrots isn't going to help.

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Permalink Reply by Melitta on October 12, 2011 at 11:25pm

Hi Elikat: You have all the classic symptoms of a person with adult-onset Type 1 diabetes (you wouldn't be described as LADA because there was nothing "latent" about the onset). The GAD antibody test isn't enough; testing for the full suite of antibody tests should be done ((glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies)). You are obviously insulin-deficient; I wrote a blog about the medical misdiagnosis of insulin-deficient diabetes. Read if you want to and see if you can relate.

I would disagree with Russell; the science on LADA is not hazy, or no more hazy than the science on Type 1 diabetes. LADA is slow-onset Type 1 diabetes in adults, and the appropriate treatment for Type 1 diabetes, at any age of diagnosis, is intensive insulin therapy as soon as possible. "Intensive insulin therapy" of course varies by person, and does depend on how much remnant beta cell function the person has.

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Permalink Reply by Gerri on October 13, 2011 at 2:22am

Agree with Melitta. She's our LADA expert. Am heartened to hear how many of you sought your own answers. C-peptide does indicate T1. For insurance purposes, an appropriate diagnosis is important. Are you using both basal & bolus insulin?

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Permalink Reply by Brian (bsc) on October 13, 2011 at 5:22am

You have gotten good advice. I was diagnosed as a T2 in 2005. Weight loss, diet and eventually up to triple medications were tried. I found a very low carb diet was able to control my mealtime blood sugar swings, but my fasting blood sugars were always 120-140 and medications did nothing. My c-peptide was 1.6 ng/ml with a fasting blood sugar of 131 mg/dl, within range, but low and disturbingly low for a T2 with a blood sugar of 131. Eventually, I got a GAD, it came back negative. And like you, I was never really overweight.

So this left me in a frustrating position. I was unhappy with my blood sugars, medications didn't work and despite repeated requests I could not get either more tests or insulin prescribed. Eventually, I did get insulin (that is a story in itself) and my control is now wonderful. I can now routinely meet my blood sugar goals and my A1c is 5.6%. There are perhaps reasons to advocate for a correct and specific diagnosis. For me, getting appropriate treatment was the first priority. At some later date, should I wish to move to a pump, having a type 1 diagnosis is far better than having a type 2 diagnosis. But I will deal with that when the time comes.

You may or may not get a specific diagnosis. In any case, you will need to come to terms with things. We often wonder why and how diabetes happened. As if understanding will help us deal with it. In my case, I have accepted the way I am (whatever that is).

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Permalink Reply by russell.stamets on October 13, 2011 at 7:25am

Elikat, if you still have confusion, then you have a balanced picture. It is a credit to this online community that such an informative, civil discussion can take place, and differing opinions can be offered. I think we can definitely defer to Melitta on the Diabetes Establishment’s current position. Her footnotes all appear complete. You, like each of us, have to decide what you consider a “fact”, what a primary source is, and who, if anyone, you will trust as a “voice”. It is my opinion, for example, that the ongoing proliferation of new types and subtypes being coined for adult onset autoimmune flavors of diabetes indicates more than than “hazy”. It seems downright foggy. It reminds me of the dozens of subatomic particles the physicists have to keep coming up with to explain new data. Until there’s a unified theory, they’re just sticking pins on a blank map. But the point is, besides observations like that, I can only offer you MY body of evidence, literally: healthy, slim guy gets high blood sugar readings out of the blue, has LADA “confirmed” (see above), takes metformin and glipizide as far as they’ll go, then uses holistic approach to go even lower, to near normal, and stay there (I’ll have to add “so far” to that, forever). There’s no question I’m an outlying “pin” on the map of what you’ll hear. Anomaly? Or part of the undiscovered larger picture.

Alright, enough. Part of my approach is also to go out and spend more time enjoying the beautiful day we have here than in front of this screen. Good luck Elikat. Happy Thursday all!
Russell

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Permalink Reply by Elikat on October 13, 2011 at 2:04pm

First, thanks to all of you for sharing your experiences, thoughts and suggestions!

I had a follow up visit with my Endo yesterday and he reclassified me as Type I based on my test results and how I have responded to the 20 units of Lantus. My bg numbers are consistently between 85 and 105, so at this time I am not adding a bolus insulin, but he cautioned that it is coming as my pancreas is sputtering out.

And, of course, while the diagnosis is not as important a getting the proper treatment, the knowledge of what the future treatments possibly will include due to that diagnosis, helps with preparing mentally, physically, and emotionally.

Thanks again for all of the comments and guidance as to what I should be asking my Endo. It is the most prepared I have ever felt walking into a doctor's office.

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