T2 to T1 according to the doc - what do you think?

According to my Doc, I am now a T1 because my beta cells are just about gone.

Technically, and for insurance purposes, that may be true. However, for treatment purposes, I argue that I am an “insulin-dependent T2” after 18 years on oral meds.

Of course, I believe that eventually (when research & testing catches up) I will be classified as MODY since it is all through my family, including 2 other siblings and we’re all within “normal” weight ranges - but I digress.

It DOES matter for treatment purposes, as guidelines are different - for example, with Symlin.
What say you?

I say that it’s not type 1 without the autoimmune response. I think you’re probably right that you’re an insulin dependent type 2, which is not uncommon. I don’t know enough about MODY to say. I’m sure there are plenty of members here to tell you better than I, but yes, I agree with you that your doc seems to have his terms confused. Too many people think type 2 can turn into type 1 or vice versa just because the treatment needs or the lifestyle of a person have changed.

As if everything with diabetes is confusing enough to begin, now to try to unravel what you “are.”

Agree that having virtually no insulin production does make you technically Type 1. Without a C-peptide to know about antibodies, you could really be a Type 2 who’s insulin dependent.

MODY individuals have insulin output, though sporadic, & MODYs aren’t insulin resistant. There are Type 2s who aren’t overweight, to further complicate matters, unless they’re really MODY, too.

Not sure how being an insulin dependent Type 2 would impact treatment since your beta cells are kaput. You should be able to take Symlin since you aren’t producing insulin, right?

I agree… and I think in large part this “type confusion” has a lot more to do with ignorance on behalf of the doctors than patients… it sounds like Cheri has it figured out, it’s her doctor that needs some help!

My understanding is that if you are correctly diagnosed as Type 2, you are always a Type 2. Type 2 is a progressive disease and the move to insulin is part of that progression.

I also agree. T2s can’t turn into T1s unless they were wrongly diagnosed in the first place (happens a lot) and they have the autoimmune response. There are also idiopathic T1s for whom antibody testing is negative - whether those antibodies were always negative is a point of debate & too much to discuss here.

Even the medical community is is somewhat confused on this issue of T2s turning into T1s. I think it comes from years of getting it wrong.

As I understand it, Symlin is used with both T1 & T2. I’m sure someone will correct me if I’m wrong.

Welcome to the world of confusion!

HI GERRI!!! Long time no talk (I’m back from the deadline wars).

As far as treatment and Symlin, it’s a matter of the dose. They have one guideline for T1s and another for T2s. T2s can actually take twice as much as T1s.

Regarding your description of MODY, you might be right - although there are several different types of MODYs (and some with insulin resistance) - and we just really don’t have all the answers at this point. I am VERY insulin resistant and am learning how to combat that. Jenny once mentioned maybe LADA, but I’ve been tested for GAD anitbodies and they aren’t there. Of course, she also says that not all LADAs have these antibodies - and I still need to get tested for islet cell antibodies and/or tyrosine phosphatase antibodies.

But with my family history, gestational diabetes, and the fact that I have Hashimotos - I know it’s an “other” - somehow autoimmune related. My theory is that there are other types of autoimmune related diabetes that we just don’t know about yet. I read about the fact that researchers suspect there are related antibodies we have yet to discover. Too little is known about the various “1.5” types

I have had a C peptide and that’s why my doc now says I’m a T1. However, I just don’t believe it’s the same. My issues are vastly different from the typical T1. I have come to understand that T1s have a much harder path to walk in order to stay within the lines because they deal with things like wild swings and so much more.

Having said that - I feel connected in a special way to anyone with any type of diabetes. But as for the doc, I’m going to have a further discussion with her about this.

Hi Susi - thanks for the response.

You’re right about the “world of confusion”!!

See my response to Gerri above - the Symlin issue is a matter of the dosage difference for T1s vs T2s.

Welcome back!

I admit to not knowing much about the various types of MODY. It’s mind boggling. You’re definitely dealing with a different set of issues than a Type 1, 2 or 1.5. As is sadly the case again, we have to be our own researchers & doctors.

Hopefully, once more is known about autoimmune diseases, diabetes won’t be lumped in these current broad categories. Many of us have multiple autoimmune problems & it certainly is a complex set of inter-related metabolic issues.

About Symlin… Isn’t the dosage dictated by insulin production? Since you have very little, wouldn’t dosage be calculated as a Type 1? I thought Symlin was only indicated for Type 1s & risky for Type 2s.

Thanks, Gerri
Actually, it’s only indicated for diabetics using insulin, whether T1 or T2 - and for some reason, T2s are able to take it at a higher dose.

According to some sources, 15% of all T2s display the signs of autoimmunity. Perhaps there is a spectrum of autoimmunity that leads to pooped out pancreas. A T1 is an autoimmune that sets in quickly, LADA sets in over a period of months to years and the other 15% of T2s occur over years.

If you went to a doctor and refused to give him a background, how would the doctor diagnose you? Having been diagnosed as T2 for years biases any future diagnosis. The fact that you did not initially present as a normal T2 is not proof that you are autoimmune or MODY and neither is a genetic connection. If you can “prove” you are autoimmune, LADA or MODY, then presumably that would change your diagnosis. But you would have be tested for antibodies and sequenced for MODY, all of which can be expensive.

If you are having trouble with your digestion and blood sugar control and you think Symlin would help, perhaps you should just ask your doctor to prescribe it. If he refuses, you are pretty much stuck anyway. But if he agrees, then your insurance is faced with a medical opinion in conflict with your diagnosis and the insurance would presumably either approve the Smylin or approve the tests to prove you don’t need it.