After over 20 years of being misdiagnosed it's official, I'm a Type 1

When I was in my late 20’s I was diagnosed as a Type 2. No tests were ever given but I guess they just assumed because of my age. Was not overweight at all and was in pretty good shape so it never made sense to me. After being prescribed some meds that made me feel even worse I demanded to be put on insulin which immediately made me feel ‘normal’ again. For the past 20 years doctors have always pushed me to exercise more, eat better (which I already was doing), and would always try to get me off insulin and to take meds, basically making me feel like this was something I could do something about. I always told them I don’t think I’m T2 but you can’t tell a doctor a damn thing, they think they know it all.

Finally decided to look into getting a pump and the insurance required a C-peptide test, which finally my doc agreed to do. He also gave me tests for antibodies. Sure enough my c-peptide was <0.1 ng/mL and I had way high GAD65 antibodies. I am actually relieved. I highly suspected this all along and there is no doubt the medical community has a bias against T2’s, they act like it’s your own fault.

Just thought I’d vent.

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I hope you thoroughly enjoyed looking your doctor straight in the eye and saying "I TOLD YOU SO"

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Glad “they” finally got it right for you. 20 years…had to be hard to deal with!

That makes me wonder how many T2’s are misdiagnosed. I do believe some T2s could cure themselves, but certainly not all, and certainly not T1s being called T2s!

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Its estimated that as high as 15% of Type 2 diabetics are actually LADA.

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I was also 21 at diagnosis. An urgent care doc told me to lay off carbs and sent me home. Then I went to the emergency room the next day and saw an endo who changed it to type 1 and gave me
Insulin. I was in keto acidosis so I stayed a few days.

Some doctors base their dx on our age some use weight.
When I was diagnosed those tests didn’t exist however I was very underweight. Still the urgent care doc said 21, you are type 2

Type 1 is actually pretty rare. If your doctor saw 10 patients and called them type 2 without looking he would be right 90 percent of the time.

So although it’s really irritating, it isn’t uncommon.

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I just LOVE the fact that the whole reason they went to the T1/T2 terminology was to eliminate the erroneous connection between age and “juvenile” diabetes, and yet STILL you get any number of people with actual MD degrees making this snap conclusion: “You can’t have Type one, you’re too old,” not even recognizing they’re contradicting the whole meaning of the words coming out of their own mouths. Drives me nuts. At least you were able to get put on insulin. I was correctly dx’d at age 28 in 1983, BEFORE the new terminology came into use, though my MD knew of it and told me about it. Just lucky I guess, though my case was of the sudden/acute onset type, so maybe that helped. But he had to write “Juvenile type” on my medical record.

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My first medic. Alert bracelet said Juvenile Sugar Diabetes.
That was the only option other than Adult Sugar Diabetes.
Even though type1 and 2 were already being used.
I think you can get anything you like now.
Sugar diabetes sounds so 1940

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Wow, 20 years. There is no excuse for this shoddy practice of so called medicine. Imo everyone D should be tested for antibodies. I am glad you were finally properly diagnosed.

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Wow, that’s a huge accomplishment @Baddog40. Don’t forget to push other diabetics you meet. It’s so important. Good for you!!!

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I’ve had diabetes since diagnosis at age 43, on insulin from beginning. My endo told me (a diabetic pumper himself) that I am a Type 1 since my pancreas has stopped insulin production altogether. I am 70 now, still pumping (since 2000). It confuses everyone,including diabetics AND doctors, when I tell them I’m a Type 1 diabetic.

It’s high time we consider changing the whole labeling system in diabetes. Types are outdated and, I’d argue, actually impede proper diagnosis.

Instead of “types” I suggest (in my controversial manifesto) that we shift the nomenclature to being on a two-dimensional continuum of disorders: insulin resistance and insulin production. Many people have both, not either. So why artificially separate into “types” when the “types” no longer are helpful in diagnosis and management – especially when LADA is introduced into the mix!

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The really fun part is in a hospital with a pump. The doctors and nurses act like they have no idea what it is or how to use it. I have to sign a lot of waivers.

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When I was in the hospital, they gave me the choice of me managing all my diabetes needs or they would. Of course I chose me. Back in the day they would bring me my meal and my insulin 30-40 min later.
It’s like they had no idea how to manage it anyway.

This past time they would just ask me what my sugars were 3 times a day, and how much insulin I took.

I wouldn’t do it any other way unless I was out cold.

Antibody tests are expensive, not readily available, and not that reliable. The standard test to differentiate between Type 1 and Type 2 is the (proper) glucose tolerance. The test must measure both sugar and insulin level. If the insulin level is 0, obviously Type 1. If sugar level and insulin level both rise sharply, then Type 2. For someone first put on insulin and then given a glucose tolerance test, the insulin level will be a straight line for Type 1 and will go up for Type 2 (but the glucose tolerance test should have been done before insulin was prescribed). If one suspects a false diagnosis of Type 1 and prescribed insulin, the proper test is creatinine, which is a byproduct of insulin production and will be 0 for a Type 1 even if taking insulin, and normal for anyone who is not Type 1.
Some doctors (we had one in my home town) order a faux glucose tolerance test for those who come in with fasting sugars of 70 mg/dl = 4 mmol/l. A large quantity of glucose is given, and if sugar goes up, Type 2 diabetes is diagnosed; if sugar does not go up, hypoglycaemia is diagnosed, so all those tested need extensive and expensive medical care.
A normal physician, if one has a fasting blood sugar less than 126 mg/dl = 7 mmol/l, says one does not have diabetes and lets it go at that. A very few persons do have normal fasting sugars but postprandial sugars above 200 mg/dl = 11 mmol/l and are technically diabetic, but this is very rare, and physicians not trying to maximise revenue do not do the faux glucose tolerance test that does not measure insulin levels.
(It is also not clear what it means if someone has sugars that rise to 200/11 after a meal then quickly drop below 126/7, or if this really requires treatment; strictly speaking, blood glucose is now an obsolete test for diabetes–though still commonly used–HbA1c should be used as the definitive test for diabetes.)

I had assumed that the post by @Melitta about JDRF’s lower cost antibody testing effort had already been referenced here. I now think I was wrong, so here’s a link to her post.

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@MichaelW, in fact autoantibody tests are inexpensive ($55 or $10 via JDRF T1Detect), readily available (JDRF, Mayo Clinic Lab, etc.) and quite reliable (laboratory standardization was done in ~2010). Diabetes researcher R. David Leslie MD says, “The best way to identify autoimmune diabetes is to assess diabetes-associated autoantibodies [GAD, IAA, IA-2, ZnT8], which represent the only relevant categorical trait.” An American Diabetes Association position statement affirms, “Consider measurement of pancreatic autoantibodies to confirm the diagnosis of Type 1 diabetes." AACE (American Association of Clinical Endocrinology) now recommends using autoantibody testing to differentiate between Type 1a diabetes and non-autoimmune diabetes such as Type 2 diabetes.

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@Baddog40, congratulations on getting correctly diagnosed! Woo hoo! My mother always said, “better late than never.”

They called it “sugar” diabetes because they had to distinguish it from all those other kinds. Apparently.

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Yes, of course.

Diabetes insipidus is an uncommon disorder that causes an imbalance of fluids in the body. This imbalance makes you very thirsty even if you’ve had something to drink. It also leads you to produce large amounts of urine.

Well there is another condition called diabetes insipidus. However so rare it’s hardly worth noticing.