What difference does it make?

Hi folks –

I’m newly diagnosed as of mid-Dec, probable type 1. I am 39, have never been overweight, eat reasonably well (vegetarian for a long time) and am quite fit. Or at least I was until I started feeling like crap and losing weight for no reason and and and… you know the drill. Fasting glucose 254, A1C 11.5 at diagnosis.

Complication: I was diagnosed while temporarily living away from home. So I saw Endo #1 about 3 times, and will see Endo #2 (at home) in a couple of days. Because of the move etc., I haven’t had the kind of full on education some of you have had – e.g., I have not seen a dietician yet, or been taught to carb count (I’m doing really well figuring it out, though.)

I say “probable type 1” because that’s what my dr said. No family history, no obesity, and GAD test positive. I think islet test was negative. I don’t know about C-peptide; I do know that my “serum insulin” was <2.

OK, so here’s my question: if I’m going to be insulin dependent, what DIFFERENCE does it make whether I’m type 1 or type 2? (I know many type 2s are insulin dependent.) Is there an actual medical reason that we are all obsessed with this distinction? Or is it just the sociological stuff that is behind the occasional type 1 vs. type 2 squabbles? I.e., that type 2s allegedly “did it to themselves” and type 1s didn’t?

I’m not immune to that stuff. I will flat out confess that I want to be type 1 because then I know that there is no sense in which it is my fault. I don’t actually endorse that attitude. But I will admit that I feel it.

Type 1 and Type 2 are too completely different conditions; Type 1 is an autoimmune condition and Type 2 is not. Treatment is different and the typical chronology is very different. Type 2’s can be pre-diabetes without knowing it, and if they find out they can treat it with diet and exercise, sometimes for years. Diet, exercise and maintaining healthy weight are crucial to Type 2 (not saying they don’t help type 1 as well). Type 2, simply put is a condition of insulin resistance and that is what needs to be treated. They make enough or even an excessive amount of insulin but their bodies have trouble using the insulin they make. Type 1 is a condition of insulin deficiency. Our bodies make very little or no insulin, so we are dependent on exogenous insulin to live. Type 2’s can become insulin deficient over time but it is often a decade or more. From all the time I’ve been on this board reading posts by both types I see many common issues, but also many differences. Even Type 2’s who are insulin deficient have different issues in terms of numbers and patterns. DKA is more of an immediate risk for Type 1’s than it is for Type 2’s; lows are more frequent.

Also, a practical difference is that type 2 and type 1 have different insurance guidelines. You will more easily receive larger amounts of test strips if you are type 1, but might struggle to get enough if type 2. Pump use is much easier to get approved for a type 1 and still considered a type 1 treatment, but that, hopefully will change. Type 2’s seem to have more flexibility in eating according to the glycemic index; for many type 1’s it really doesn’t matter if it is whole grain or brown rice.

I will admit I am perhaps overfocused on the differences because I was misdiagnosed and had to struggle to get the right care. But, yes, imho it matters

I agree, if you want an insulin pump or CGMS, having a type 1 diagnosis can make all the difference with insurance companies. There are a lot of misconceptions about diagnostic types.

Diet, exercise and maintaining healthy weight are crucial to BOTH TYPE 1 and Type 2 (not saying they don’t help type 1 as well).

Type 2, simply put is a condition of insulin resistance and INSULIN DEFICIENCY and that is what needs to be treated.

Type 1 AND TYPE 2 is a condition of insulin deficiency - the leading researcher Ralph Defronzo suggests that T2s have lost 80% of their beta cell function by the time they are diagnosed

And finally, I have had to put up with constant nagging from health care providers that I am fat and inattentive to diet since I am diagnosed as a T2. I believe the same general health suggestions apply to diabetics of all types and they both should care about white rice vs brown rice. But the white rice didn’t give me diabetes and eating brown rice won’t cure me.

Hi - Welcome to the club. If you are going to be insulin dependent, I think you are better off medically being Type 1 without significant insulin resistance to being Type 2 with insulin resistance and insufficient insulin production. A Type 1 without insulin resistance “just” has to match insulin to carbs and usually is taking only insulin for blood sugar management. A Type 2 on insulin is often taking much larger doses of insulin plus additional drugs to manage the insulin resistance. Personally, I think simpler is better.

As BSC said - you still have to manage your diet and exercise although a Type 1 ususally has somewhat more leeway on eating carbs.

Maurie

Zoe and bsc have pretty well answered your burning questions there. I didn’t realise that in the USA that if you have T1 tho’ that you’ll be able to get onto the pump or have ability to test BG’s more often (that’s the way I interpreted what was written above). So in away if you get diagnosed with T1 - it sounds like a better thing.



What’s got me writing here today - is I was chatting with my Mum today - and her sister is T2 (lives in Wales). She doesn’t test her BG’s much - and she’s having probs with health lately related to diabetes. She’s also just lost 14 lbs in one month - which makes me wonder if she’s maybe going the insulin way - but she refuses to go onto insulin. Sigh. If only I could flap my wings and go over to visit her and talk to her.



One thing that really astounded me - and I may blog about this later (so many things to blog about) - my Mum thought I got diabetes because of my being over weight (which I wasn’t at my young age)!! My own Mum said this is what really has me flabbergasted. I was diagnosed at 6-7 years of age (we’re not quite sure - she says it’s not an important thing to remember - crikey), she realised something was wrong when my pants were falling down all the time and peeing the bed at night. To think that 44 years later, that my Mum thinks T1’s get diabetes because we are overweight - really was a slap in the face. I managed to stay calm over the phone as I explained the difference between the types of diabetes that we now have - but I don’t think she quite got it. She thinks diabetes has become too complicated now - if she feels this way - heaven help me - what she says to her 60 year old sister.

Hi Kestrel: You are GAD positive, a definitive test which means you have Type 1 autoimmune diabetes. It usually does matter to have a correct diagnosis to get appropriate treatment and to get insurance coverage for durable medical equipment and sufficient test strips. And for me, I want to know what disease I have and be correctly diagnosed–Type 1 and Type 2 are different diseases. Are you on exogenous insulin now? If you are not, you should be. You are right, it would be good to see a dietician, see a CDE, get all the training you possibly can. Also, the book “Think Like a Pancreas” is incredibly useful. Best of luck to you, and use TuDiabetes to get the support and knowledge that you need.

I am a Type 2 and am happy for you that you are not the bad diabetic like I am.

We in the Type 2 community hear and feel it everyday. I would urge you to read up on various threads in TU and do some research on Type 2. It might help you in your view.

Pauly I completely understand where you are coming from. I was recently diagnosed type1, but I’m an overweight 35 year old woman so everyone just assumes I’m wrong about my DX. It is so bad, my doctor gave me a copy of my GAD test incase I have to see another dr I can have proof of my type 1.

I have given up trying to defend my type 1 DX, now I just tell people that type 2 goes way beyond “lifestyle” and that they should educate themselves before they open their mouths.

Hi Pualy – sorry if I wasn’t clear enough; I know it’s not fair to think of type 2’s as “bad diabetics” etc. I wasn’t ENDORSING that attitude, I was just being honest and admitting that I find myself thinking that way sometimes. Just as one can find oneself thinking, say, sexist things. It’s one thing to admit you have certain thoughts and reactions, and another thing to actually think those thoughts and reactions are RIGHT.

Thanks everyone! I do know about insulin deficiency vs resistance, and that many type 2’s can control their sugars with diet and exercise, at least for a while. But I also know that many type 2s do develop insulin deficiency as well, and do go on insulin eventually. So I guess what I was asking was what real difference there is between type 1s and the later stage type 2s, whose beta cells are seriously compromised, and who are dependent on exogenous insulin. By “real difference” I didn’t so much mean “can different antibodies be detected” or “did it have a different cause”, but rather “are there
differences in lifestyle, foods, long term or short term risks, etc.”

So it’s helpful to realize that DKA is more of a problem in type 1, and I didn’t know about the insurance differences. And good point that the type 2s will typically need higher doses of insulin.

May I ask what makes you a bad diabetic??

Apology accepted as you are a new diabetic and will learn more as you go on. We are different. I dont post often in the Type 1 or Type 1.5 forum but when I see the T-2 community being detested and loathed I have to say something.

While your question has been addressed thoroughly, I would just add another reason that a correct diagnosis is important. Given that you tested positive for GAD antibodies, you have an autoimmune condition. Unfortunately autoimmune conditions often come in groups – so in the future if you were to face any other autoimmune condition, you may be more aware what to look for. Many people with autoimmune diabetes also have autoimmune hypothyroidism (Hashimoto’s) or Celiac.

without getting into technical differences, if you’re type 1 and have average or above-average insulin sensitivity, you will go low more often, but you also can be a little bit (but not much) more generous in terms of your diet because you can cover your carbs with insulin.



type 1s typically present with different comorbidities than type 2s (i won’t say fewer comorbidities, but certainly the incidence of celiac disease and other autoimmune conditions is way higher among T1s, and T1s tend to suffer from obesity/metabolic syndrome less often than T2s, at least at the time of Dx). you sound otherwise healthy so this shouldn’t be that much of a concern.



in sum, i think T1 probably requires more careful monitoring/attention to detail, but requires less drastic lifestyle changes than T2, although there’s a bit of a chicken and the egg problem at work with respect to comorbid obesity and other issues. i will say that the bottom line i’ve gotten from my endos is that T1 is a lot of work but that you can live a long life free of serious complications (you can and will get minor ones) if you actively manage it, especially given the tools we have now.

I don’t mean to hijack this thread ,but I have had the same questions myself. In late september 2009 I had a ful physical and my BG was 101. The third week in Oct. I was feeling tired, wanting to sleep all day, urinating alot, and blurred vision. I went to my doctor and my fasting BG was over 600. I was put on gliburide and actos. It took 3 weeks to get my BG below 600. I went to a diabetic educational clinic and they thought I might be LADA. As far as I know no test have ever been done. I’ve been slim (mostly underweight most of my life). When I was diagnosed I was overweight as far as BMI, but it was musle weight. After I started on the meds I gained alot of weight. Now I’ve lost most of the weight, still a little heavy, but fit. I now take actos and byetta. My BG is under control (110 to 135 fasting BG) and a 6.5 A1C. Is it that important to know for sure what type as long as I’m under control?

Yes and no - I think it is important to know

a)is the cause autoimmune or metabolic/insulin-resistance related

b)will insulin therapy be needed

Getting the answers to those questions is much more important than knowing ‘type’.The main thing is getting the right tools you need to control and manage your condition. I appreciate that in some countries, getting the right treatment may be dependent on which ‘type’ box is ticked.

There does exist type 1 people with some insulin resistance. A lot of people diagnosed 1.5 have both autoimmune and insulin resistance.

Yeah, one big thing I’ve come to realize since I first asked the question is this: it matters whether the cause is auto-immune, because auto-immune problems run in packs, and you need to be checked for others…

Is it important to get a proper diagnosis even though you are currently under control? I would argue yes, you should take this “breather” time to try to address these important questions. Why? Although many LADA diabetics can achieve control for a while, things can take a turn for the worse and if you are stuck with an incorrect diagnosis, you will suffer from incorrect treatments. What I have learned is that your diagnosis is what your chart says. Even if it says something wrong, it still says what it says.



Consider this, your doctor thinks you are T2 right now, you blood sugars degrade, you see the doctor, he ups your meds, tells you to lay off the sugar, eat a good diet and lose some weight. He then sends you away for three months. You return, are worse, he gives you even more meds and gives you even more grief for your sloppy diet and slovenly behavior and sends you away for another three months. This can go on for a while, perhaps a couple years. If you are actually LADA, most people think you should move quickly to insulin to protect your remaining beta cell function as opposed to doing the standard T2 dance of self pancreatic destruction.

don’t forget the insurance issues. T1’s get more leeway from insurers for test strips and CGM’s. if you’re using insulin, T1’s seem to get priority when it comes to paying for a pump.

The “insulin dependent” lifestyle requires some adjustments, but they’re not insurmountable. Primarily it’s an issue of remembering to keep your ‘stuff’ handy and a little more thinking ahead when going through security at the airport.

When you see Endo #2, bring your test results and get a firm diagnosis. Ask to be re-tested if he/she won’t accept the results you bring. Don’t accept a diagnosis based solely on a physical exam.

Good luck. See you around.

Terry