Type 1 Diagnosis Stages

So I am new to this whole type 1 diabetes and tslim insulin pumping paired with dexcom. I got diagnosed with diabetes 1.5 and was told I am in the stage 1 phase of diagnosis. Meaning I have the antibodies and I am also insulin resistant.

My understanding is that most people aren’t diagnosed until they hit stage 3 where the symptoms of type 1 happen and the sugar goes up super high needing insulin 24hrs a day. I have been diabetic since I was around 18yrs old I am now 34. I was misdiagnosed as type 2 at 18 because I am overweight and insulin resistant. I didn’t get my type 1.5 diagnosis until I was 33. Being diabetic for so long, I have very little awareness of low sugar. My question is this:

1.) is it possible for someone of larger size or fluffy be diabetic 1.5 or just plain old type 1? Because I am so nervous that I got misdiagnosed again. Usually type 2’s are fluffy. I am a big girl which makes me insulin resistant. I also tested positive for 2/3 antibodies both times they did the antibody panel. My endo says that confirms my type 1.5 diagnosis.

2.)is type 1.5 and LADA the same thing? My endo says it’s not because LADA means all beta cells are depleted and not producing. Versus I still produce plenty of insulin based on my cpeptide which means I still have active beta cells. Can u be type 1.5 and still produce plenty of insulin?

3.) is type 1.5 the same as type 1 just slower progressing?

Sorry this is so long. I don’t feel my endo answers all my questions completely. So I am hoping to get answers here.

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I’ve been insulin dependent since 1972 and have always been overweight to some degree.
The PCPs I’ve seen over the years have questioned whether I am type one or two.
Mostly I’ve had to take care of my diabetes myself.
Over the last four years I’ve average A1Cs of 5.5-6.0 with minimal help from my PCP.
I’ve asked the last three PCPs I’ve seen (over about ten - twelve years) about seeing an Endo and the response has been, “You don’t need no stinkin’ Endo!,” followed by the PCP hocking up a big loogie. I’m not joking… much.
Getting back to the question of classification of an overweight, insulin dependent diabetic I don’t know the answer and would very much like to.
Just recently I found a Endo who would see me without a referral from my PCP so I am hopeful I can learn more.
Perhaps others can comment.

Mark

There is not really an official type 1.5 or LADA category. They are both type 1. LADA is a description used that means Latent Autoimmune Disease in Adults, meaning you get it later in life versus being a kid and it almost always progresses at a much slower pace. They do think you are not as insulin sensitive as when a kid gets it. That I know of Type 1.5 is hardly used anymore as who knows what it really means??? It was just a description to explain all these adults getting type 1 and there was a prevalent theory it was a kids thing, all these adults were etc, so lets make a new category to dump them into, but what does it really mean. There are all sorts of theories out there, one is getting it before the age of 7 is even slightly different.

I have heard type 1.5 to be used as a description for the person that doesn’t make insulin but has no antibodies. And that’s the problem and that’s why it’s not an official designation. . Type 1 or type 2, RH or Mody I think are pretty much the official categories.

But the basic is a type 1 has antibodies that attack the beta cells and they have to end up having insulin to stay alive. And as an adult it’s usually slow onset, so that process can take years, 8 years or more to completely happen. 40% of us are misdiagnosed as a type 2 at first, Lifestyle changes, medications work at first because we make insulin for a while are some reasons we are misdiagnosed so much, And then they see an overweight person and just automatically think type 2.

A C-peptide test tells you how much of your own insulin you are making. Low or low normal is a sign of type 1 as you are losing or have lost the ability to make insulin. High or high normal is a sign of type 2 because you are insulin resistant and making extra to try to compensate. However some type 1’s don’t make insulin and don’t make antibodies and they don’t know why. And there seems to be some other forms. There is also Mody which is a little stranger and you might read upon that.

You can also be insulin resistant and a type 1. A type 1 has lost or is losing the ability to make insulin. Insulin resistance happens because the cells can’t use insulin well. You have the anti bodies which means though that you are eventually going to lose the ability to make insulin yourself.

Honestly I would get copies of your blood work, your antibodies and your C-peptide. What one doctor says is plenty, another might not say that. Not only is it good to have a copy for your records, but that way you can judge for yourself how your body is doing.

A type 1 classification can also be very important for insurance reasons. As a type 1 we qualify for CGM’s and pumps and misc much easier. Waiting and classifying it into stages is something I have never heard of before. Possibly waiting to see what is going on because you produce plenty of insulin I could understand. But again I would get your results so you can tell what that plenty means.

One of the problems is they see a person as overweight and high blood sugars and automatically go you’re type 2 without testing. Then they pile insulin into you and that makes you insulin resistant. But one theory is that insulin can save your beta cells for longer too. But that is a long time to have plenty of beta cells still. Get copies of your tests.

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Just a note, some endos are jerks…my first endo was. He said I was a type 2 and never bothered to test me, even though I asked and told him because I had an uncle that was a type 1. He was also very set in his ways and wanted me back on the meds that had made me sick, I refused to go back to him after a few visits.

I switched doctors who sent me to a new endo and my next endo was a gem, she was a type 1 and tested me without me even asking. And my third endo is also very nice although I really don’t need an endo input for now, just someone to write scripts and blood work.

Many people have run into jerk endos, pcp’s or nice ones etc. I’m just saying this because if you are in the US you can switch if you are unhappy with your endo. Although endos are in limited supply and if you are in smaller cities it can be more difficult but there is also telehealth options available now.

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All true. I live in a rural area with the closest doctor of any kind is about fifty miles away.
I had a really good PCP for a while but he retired, un-retired and then retired for good.
My current PCP, who has been good about supplying drugs, has never, not ever when I asked him to, inspected my feet or done a foot nephropathy test. Maybe not malpractice, but not good medicine.
The last time I looked for a Endo, about 5-6 years ago, I couldn’t find a single Endo in the area (I could drive to Houston, 150 mi) that was taking new patients. Tele-med would suit me if I can be worked out where I live.
Anyway, I look forward to getting some help from the Endo.

Mark

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What’s most relevant is your C-Peptide. When it goes very low, you will be fully insulin dependent. If you are making some insulin, the other drug can be used with or without insulin.

Basically yes. It also tends to occur more in older people rather than children (with “juvenile diabetes”), which was my diagnosis age 5.

@BoBa_TeA It does sound like your are LADA, while I am not LADA or type 1 started multi daily insulin injections in January. I kind of think of it as having a foot in each type. When it comes to insulin resistance, that isn’t the territory of type 2 DMs. For me what makes me less insulin resistant is regular daily exercise.

Your number 2. makes me wonder about your Endo’s intelligence. Technically there is no real type 1.5, There is type 1 that comes on acutely, usually in childhood, and then LADA which usually hits around the same age that many are diagnosed as type 2, around 40. This has lead to confused diagnoses. It doesn’t help that LADA in the early stages often responds to type 2 meds. LADA is very slow compared to classic type 1 in killing off Beta cells. Some people go for years without needing supplemental insulin.

The answer to number 3. is yes LADA - type 1.5 is type 1 diabetes mellitus.

One thing that could be driving insulin resistance is you are a woman. Quite a few women suffer from poly cystic ovary syndrome (PCOS). That is something to consider.

Good luck to you and welcome to TuDiabetes.

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Let’s remember you can be both type1 and type2.
But generally If you are making normal levels of insulin, then your resistance is the thing you should be concentrating on.

I call them Endorks. I was initially mis-dx’d as T2 cuz I was 30 tears old, went from my working weight of 110 lbs - I was a ballet dancer to 95 lbs. No D of any type in my family - basically no risk factors for T2 - yet I was an adult. It took being found by a neighbor in a coma from DKA to get the correct Dx in the Emergency Dept. I hate that there are HCP’s out there that use only age and weight to Dx. There are, as the original poster said, “fluffy” people with T1D and skinny folks with T2D. A simple blood test can determine the correct Dx - and more importantly the correct treatment.

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