A very big number. I too would like to know what (if anything) is being done to raise consciousness about this in the professional ranks.
Anyone?
Thanks to everyone for their thoughts and feedback. I will most definitely be discussing with my provider the tests needed to get me a confirmation of the diagnosis. I also have a meeting with the Chief Medical Officer of my hospital tomorrow to discuss my experience at the hospital and the conflicting diagnoses.
Does it really matter if a ton of meds do work for a time and then you go on insulin later?
Hi @Terry4: Oh, a complicated question. Yes, ~10% of “Type 2s” are autoantibody positive and actually have Type 1. It was 11% in the first study published on the matter, in 1977, the Accord Study had 10%, and so many subsequent studies have found the same thing. And ~10% of women with gestational diabetes are autoantibody positive as well. And no, I am not aware of any professional or organization that is working to change this, and as you know, I study this quite a bit. I myself have been slowly working on the problem for years, but of course I am “just” a patient with T1D, and I work full time and have a life! The Diabetes Forecast articles came out after I wrote to the editor, Kelly Rawlings, and asked her to research/write about misdiagnosis. But unfortunately, the American Diabetes Association has not done much to change and still promotes wrong information about Type 1 diabetes (ADA’s website says, "Type 1 diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. Only 5% of people with diabetes have this form of the disease). Of course, it’s people of all ages who are diagnosed with Type 1, and it certainly isn’t 5% if 10% of Type 2s actually have Type 1. So Terry, my plan is to retire in a few years and devote myself to this problem in a more systematic way!
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I think the real problem is when a series of meds are not working well and the doctor wants to stay the course for many months at a time while the patient has to endure lots of hyperglycemia. I think if the oral meds are working well, that’s one thing. But if the oral meds start out as marginal and get worse, that’s quite another thing. I don’t think extended periods of high BGs are good for anybody.
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This is a shame. I know you have done a lot of good here but it would be nice if the average primary care doctor knew the numbers as you do. That is an ambitious retirement goal but you are well positioned to help many.
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For me Met and a low dose of a sulfa did work well for awhile. When that stopped working things were dramatically increased ( meds increased and added) and I am now seeing what looks like under 6. I am sure if this stops working it will be insulin.
Welcome fellow warrior. Although I’m a Type1Brittle we all fight some of the same battles & issues. Happy & thankful that you have a great support group. That will help you more than you think but the ultimate battle is going to be up to you. You will have ups & downs but just dust yourself off & start again not blaming yourself or let yourself feel defeated because you’re not. Enjoy your life & all that you treasure. Gods blessings
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Just a quick update for everyone… It looks like my PCP ran a GAD test as part of my last labs and it was just resulted this morning. My value was a 0.00 so (if my online research is correct) this would seem to indicate that I am a Type 2 as they thought. If I’m wrong in this assessment I’d love to know!
Thanks again to all for your great feedback!
OP, there are five commonly run antibody tests for Type 1. Being negative for GAD is not conclusive. If you were also negative for the other four, then that would mostly be conclusive (there are other mechanisms of autoimmunity besides the five antibodies tested for).
I initially tested negative for GAD, then later tested positive for GAD and IA-2. I think many “modern” physicians will use the best practices of testing new diabetic patients for all five antibodies, but many (maybe most) physicians don’t keep up with the best practices for diagnosing diabetes.
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Hi Penguin (Love your name). A negative GAD is not conclusive for ruling out type 1. As mentioned by others, there are other antibodies. In fact, people can still have t1 with no detectable antibodies. The diagnosis has to made on the basis of quite a few factors, that may include response to meds.
more important would be
- Family history (complete lack of diabetes history in the family makes T1 more suspicious).
- sudden onset in apparent DKA
- C-peptide tests, along with glucose test (you want to be doing this test when your sugars a bit high)… A high c-peptide along with a high fasting level will point to t2. A low C-peptide with a high fasting level will point to t1.
- Your response to oral medications. If you do not get a clear response to oral medications in a pretty short time, then you want to consider T1.
- Low carb eating, will of course help get sugars under control. But it may blur the response for 4).
And one more thing that Melitta made passing reference to, but that I want to make sure is clear: antibodies don’t always show up on tests right away in new cases. Sometimes it takes a while.
This is an interesting discussion. Melitta said 10%+ of “T2s” show anti-body positive. I suspect more might be but are not showing up in the tests. However, as far as I know there is no current treatment to stop the auto-immune attack.
My question is does it really matter? Whats the difference if we call it T1 or T1.5 or T2 or something else? I would think what matters is how much insulin the pancreas is producing which would include the fasting period profile plus what the post meal sugar spikes look like.
IMHO - combination of insurance coverage plus proper treatment
OK, but shouldn’t proper treatment really depend on the amount of insulin being produced by the pancreas? The term Type 2 as I understand it was a marketing term by UpJohn to classify a segment of diabetics not yet insulin dependent which they could target the sale of Orinase to.
With CGMs shouldn’t we really be looking at the 24hr blood glucose profile and treating to keep that in proper range? To me that would be proper treatment. Right now we have no way to treat the underlying auto immune issue so does it matter whether you currently are under attack, where previously under attack or something else?
The name is not so important but the treatment protocol is. It would matter if an actual T1D patient had to trudge through a list of T2 drugs that burns up the calendar and raises exposure to hyperglycemia and attendant risk of complications. The best thing for any T1D is to get on insulin sooner rather than later.
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I currently think it does matter what the type of diabetes is.
There are two types essentially: Type 2, where there is plenty of insulin, at least at the beginning, but that insulin can’t be used well.
Type 1 (slow or rapid onset), where there is inadequate insulin.
The line may blur between the 2 in some cases. And then there is MODY… which is a different and variable kettle of fish.
If type 2 is a disease of very high, but ineffective insulin, then the approach should be to find ways to increase the insulin sensitivity. Simply forcing even higher levels of insulin (though drugs or injected insulin), may compound the problem as the insulin levels are still high. To put it simplistically, reducing insulin resistance involves a combination of insulin sensitisers. exercise, low-carb/keto diet, weigh normalization. I used to believe that just normalizing blood sugars should be enough for type 2, now I believe that normalizing blood sugars and insulin levels should be key.
For type 1, the appropriate treatment is replacing the absent insulin, and making sure it is used well and insulin resistance is prevented (insulin sensitisers, diet, exercise, etc, etc.).
The general lifestyle approach for both is similar , but the underlying rationale and focus is different. Medications may be different, though not always.
My 2c. I’ve been reading a lot of Dr. Fung, The Art and Science of Low Carb, keto literature etc. lately, and my way of thinking has changed.
I have also seen some very dramatic reversals of type 2 diabetes, when major lifestyle changes were made, and weight loss also achieved. We have people with a1cs in the double digits reduced to normal levels, and medications being stopped / reduced. Not all see such dramatic benefits for type 2, but I’ve seen enough cases in the last few months to be totally convinced of the importance and probable efficacy in most cases, of aggressive lifestyle measures.
Terry - while the best thing for any T1D is to get on insulin sooner rather than later, what is a T1? From stem cell work we know T1s who they thought had no beta cell activity actually have “some”. Is a T1, someone who only has 20% or 30% or 60% pancreatic function?
I have a file cabinet full of studies, one dating back to the 1950’s when Orinase first came on the market. They all say the same thing, early insulin intervention is the best approach even with the T2s.
I heard Dr. Ralph DeFronzo at the BeyondA1c forum in July and he said using metformin and sulfonylureas as step 1 is a huge mistake. This is based on his Qatar study which is ongoing.
I know the research and clinical medical communities have agreed that when certain blood glucose thresholds are exceeded, then a T1D diagnosis is justified. We know, however, that impaired glucose metabolism is really a spectrum or range of impairment. If someone can see that their glucose metabolism is starting to fail but has not yet exceed the diagnosis threshold, does that justify inaction? Even though, in many early cases, it can be argued that intervention with insulin can extend the benefit of endogenous or home-grown insulin.
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The T1/T2 classifications are oversimplified, which leads to formulaic responses that aren’t always appropriate.
Type 2 isn’t really a specific disease. It’s a diagnosis of exclusion. When the tests aren’t conclusive (or aren’t performed at all!), the patient is told they’re T2. So T2 is actually an umbrella classification covering a lot of different conditions, which don’t all have the same characteristics.
For instance: the common mantra is that T2 is characterized by insulin resistance. While that’s true of many, it’s not true of many others. Without basal insulin, I run a little bit high. Without bolus insulin, I have monumentally dangerous postprandial spikes. Yet I have almost no insulin resistance (TDD around 20 to 25 units). Nor am I the only person “officially” T2 who exhibits a similar presentation.
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