Let me just start by saying that I hate doctors. Went through hell when I needed to get on insulin. I had been going the low carb route and GP was unwilling to do anything because my A1C was at 7, walk in clinics don't manage diabetes, and good endo refused to see me without a referral.
I was diagnosed with diabetes 1/2010. Quickly lost 50 pounds to get to my correct weight. Have been insulin dependent for over a year with Apidra and Levemir, and as far as I can tell my body is not producing any insulin. Too much basal and I go low, and if I eat carbs without bolus, my BG will go up by the carb amount and stay there until I take insulin.
So during my physical, my GP tells me that he will test to see if I am really type 1 and all he gives me is the Insulin Antibody test. I score a 14.0 which is far higher than the < 0.4 it should be, but my understanding is that because I'm on Apidra/Levemir, I might have developed an immune reaction to that, so the test is inconclusive. Then I go to my endocrinologist with that information, and tell him I want a Gad 65 test and C-peptide test. He says the IAA does the same thing as the Gad 65, but is willing to do the C-peptide test.
My question is: will the IAA test and the C-peptide test be enough for a conclusive diagnosis, or do I have to find another endocrinologist to do more tests?
And yes, I'm switching endos since he might not even know what 1.5 LADA is. What's sad is how much hell I went through finding a doctor willing to put me on insulin when I was crashing.
IAA stands for Insulin Auto Antibody. There are several (two or three) different IAA tests. Being positive for this means your body attacks insulin. This is seen sometimes in people on insulin injections.
GAD stands for Glutamic Acid Decarboxylase. It's an enzyme used in the processing of insulin.
IAA and GAD are NOT the same thing. Any endocrinologist who thinks they are should be dropped.
When my endocrinologist tested me, he tested me for GAD and ICA (Islet Cell Antibodies).
If you come back positive for GAD and have a low or zero c-peptide, that's conclusive. Even a single test positive for GAD should be conclusive. A low c-peptide means you aren't producing much, if any, insulin, which isn't exactly conclusive as to the reason. If, however, your insulin needs don't indicate insulin resistance and your c-peptide is low, I'd say you probably have LADA or type 1.
Somewhere around here, someone's posted a full list of the entire suite of antibody testing. The next time I see my endocrinologist, I'm presenting him with the list and asking that he take as much blood as he has to to test me for everything.
I think it might be best for you to find a new endocrinologist.
Thanks! That's pretty much what my understanding was. I'll give the Mayo clinic up in Jacksonville a try. I've just been through the wringer with doctors, and what's really frustrating is the amount of time wasted.
When my endocrinologist tested me, he tested me for GAD and ICA (Islet Cell Antibodies)
yes, those were the 2 tests that I was given too and I tested positive for both. Cpeptide test should be fasting and, i think, BG's below 200 at time of test. Also, as Gary just stated, check for ketones or if ketone prone with high BG's. A type 2 can have really high BG's and typically not have 'ketones', i.e., don't or won't go DKA, as it's not an autoimmune disease. Good luck, maybe find another endo.
I've had horrible experiences with all kinds of doctors, including endocrinologists. I can't imagine what I'd be going through now if I'd stayed with my first endocrinologist. (Thank GOD he stopped taking my insurance.)
Yeah, I've been through the mill. This was frustrating because my GP who did my physical said he was going to run some blood work to see if I was type 1, and then I returned a month later and he hadn't done the right tests. Nor was he particularly willing to follow up. Then I saw my endo in an appointment scheduled months ago, and he lacks the knowledge and or motivation to find out. The endo (as are all of them) is a solid hour's drive away, so I kiss half a day away along with $20 in gas to hear him tell me that my numbers are better (while I informed him that I figured out on my own that the metformin he had be on was causing most of my highs and lows).
My first endocrinologist told me I didn't have reactive hypoglycemia, despite having every symptom. He also refused to test me for it, even though my father has it. If he still took my insurance, I'd never have even gotten a meter, let alone discover that my lows had morphed into highs. I'd probably still be chasing my tail about why I feel sick after eating. (Especially because my A1c is usually in the low 5's, so no one would think that my post-prandials can easily hit 200 without meds and with minimal carbs.)
I guess the good news is that you aren't going farther for a new endo--they're all far, anyway.
I got the blood work done with my new endo, and got a firm type 1 (LADA) diagnosis. I have all (flaged on every one) the antibodies non-T1 diabetics don't have, and my C-peptide is low. Thanks for all help. It's all good. They'll finally stop treating me like a type 2, and I can get all the stuff I need.
BTW, what is the difference between the LADA forum and LADA group?
I always get confused when the word " LADA " is being used ..is one referring to a person with type 1 diabetes diagnosed as NOT Juvenile and type 1 ....OR ??? I ( Canadian ) was diagnosed as living with diabetes in 1983.., age 42 plus ...meds did not bring BG's down ..6 weeks later and with Dr's discussion I suggested insulin ; was hospitalized and trained " on supplying insulin " ! Insulin did the trick .When I started pumping in 2001 a C peptide was performed ..again it confirmed , what both GP and I knew since 1983 : I required insulin to survive
Type 1 and LADA refer to the speed of onset--T1 is faster. They both end the same way, but generally kids get T1 because their autoimmune reaction is faster. I have asked two endocrinologists, though (one of whom is a pediatric endocrinologist), and they both said that children can also get LADA. It isn't as common, but it's possible and they've seen it happen. Adults can get T1, too.
That was a very good explanation of the clear distinction between T1 and T1.5 diabetes. Their life cycles are completely different and it fully explains why T1.5 diabetics are often mis-diagnosed as having T2. As was Manny, our founder.
I was diagnosed in 1971 at age 24 as a T1. Although initially, I was started on insulin, I was later switched successfully from insulin and maintained control with oral meds exclusively several years after diagnosis. This demonstrates to me that I was in fact LADA and not T1.
I didn't like the orals, so I chose to return to insulin. But it wasn't because the orals weren't working. Now after 41 years, I doubt that the oral meds would still work. So now I regard myself as simply T1.
I'm glad you have confirmed the LADA/T1 diagnosis, but I'm sorry you have it. The difference in the LADA forum and LADA group is that the forum is a set of discussion topics visible by everyone tagged as LADA, while the LADA group is a more complicated set of information, discussions, comments and open often just to group members.
Hope that helps.
ps. And for the most part, we consider LADA to be just T1, but you get in as an adult and it can have a slow onset.
My understanding and feeling is that LADA is simply slow onset type 1, and the reason it is slow acting is mostly due to the differences in how child immune systems respond in comparison to adult ones. So I see myself as T1 with a LADA or 1.5 subcategory. Additionally, my issues are along the lines of LADA.
Regardless of where it falls, my diabetes progression was more along the lines of LADA and not the quick progressing T1. I believe that I had symptoms of diabetes for a few years before my T2 diagnosis (which involved drinking a ton of fluids for a month and a trip to the ER for dehydration). Then over the next 3 1/2 years, my body has slowly ceased producing insulin. Also, my insulin needs are on the higher end for a T1.
Well, the LADA label helps us connect with people who have similar issues and experiences, and I have to have that T1 diagnosis, so that 1. my insurance company will let me have the CGMS and pump I want/need, and 2. my doctors will quit pushing those #$%*& type 2 meds on me when I don't produce insulin.
For example, I had still been on Metformin but ER metformin doesn't work well with me, so I was on regular metformin 500 mg 2 times a day when my body was producing almost no insulin. The result was that 4-5 hours after taking it, my BG would drop 50+ points, and 9 hours after taking it, my BG would rise 100+ points above normal. After figuring this out, I was breaking them up and taking it 4 times a day. Shortly before I got the blood work that identified me as T1, my PCP was annoyed that I got on insulin so quickly, and he wanted me to try a combination of T2 meds instead. Now on the bright side, it would have sent me into DKA enabling my former medical team to make a T1 diagnosis.
So based on my experience with doctors and insurance, I really need that label. Interestingly enough, the person who referred me to my current endo was a diabetes instructor who had showed me some insulin pumps, AND after talking with her for 5 minutes she was sure that I was type 1.
I should have said LADA. So I totally agree with you.
The various flavors of diabetes have been badly named over the past years and they continue to be so. It started with Juvenile Diabetes and Adult Diabetes and gets worse. The mistake they make with LADA is the "Adult" on the end. Maybe LAD Diabetes is more accurate. But that too would cause confusion.
We should request Manny to explain to us exactly how he sees LADA. He is very knowledgeable and articulate.
What I do hate is when people say "Oh, you have the bad type!". If a diabetic with the "good" type eats sugar, then it mutates into the "bad" type. What a bunch of crap! I've given up trying to explain it because I don't carry crayons around with me.
