Type Weird

Type Weird is a term I coined many, many years ago, when it became apparent that I did not fit into the classic Type 2 box, and there was no antibody testing for Type 1.

I had what would be a slow onset for Type 1, but a fast onset for Type 2. The first hints that I might be developing diabetes came in 1991 and 1992, but I was not formally diagnosed until Aug. 1993, and I was sent to an endo in Dec. 1993, who put me on Glucotrol, which did absolutely nothing for me at all, and in May 1994, I asked to go on insulin, which did wonders for me. At the time, my TDD was in the 20’s, not an extremely high dose. Although it took some unpleasant experimentation to get the right combination of insulins, and I suffered through the old R + NPH regimen, I finally got onto the pump in 1999, and it’s been pretty smooth sailing since then, although my weight has gone down, and my TDD has gone up, which seems to indicate to me that my beta cell function is continuing to deteriorate, if it’s there at all. And I was never obese to start with.

The reason I bring up this thread is that I’m discovering that I’m NOT alone. Many of those in the Thin Type 2 group seem to fall into this NON-classic Type 2 category, simply because many of them have been tested for antibodies and DON’T have them (I’ve never been tested – DID test positive for Hashimoto’s, though). And many of them DO have significant insulin production, but not enough to maintain normal BGs without help.

The problem is that docs see them as Type 2, and then proceed to treat them as if they were classic Type 2’s, which they’re not, and automatically use oral meds which may not really be what they need. It’s like they’re flying under the radar, and the medical profession will not acknowledge their existence.

They can’t actually be classed under the LADA category, because of the lack of antibodies, yet their treatment needs may be more similar to LADA than to classic Type 2.

I’m wondering how many people would fit into this category, if it existed, and whether they could join forces with the LADAs simply in order to get appropriate treatment. I know one member of this group put HIMSELF on insulin because he simply could not get the cooperation of his doctor. It’s a shame when a person has to go that far. And I don’t think he’s alone, either.

What do YOU think? Do you have any stories or suggestions that really should be shared with the world at large and with the medical profession?

Nag, I’m a morbidly obese T2 and oral meds didn’t really help me, either.

I think I should have been on insulin YEARS before I demanded it.

We’re learning so much now about the various genes and their combinations in different people. I don’t think it’s a thin vs. fat thing. It"s way more complicated than that.

Maybe diabetes comes in a dozen types, not two or three or four.

Oooops … I meant to type “Nat”. Stupid phone keyboard…

Natalie, The members of tudiabetes have given me such awareness of how truly complicated diabetes is. The different types, some that respond to one aid and some that survive only by injecting. It’s all very confusing, but the medical community you would think would have it all sorted out, but as I learn, they can be very naive to think the one size (or two) fits all. And then its also you can brittle, insulin sensitive or super carb sensitive (the YMMV thing). Then a few days ago I watched the Brett Michael’s interview where he’s says his daughter is “pre-diabetic” and they’re “fighting it” with diet and exercise. Now, I don’t know if we had understood the signs of diabetes that we could have caught Nate’s BG when it barely reached the threshold that we could done what it took to prolong diagnoses but thats the thing, I believed the type 1 in children is quick-onset once there wasn’t enough beta cells to produce enough insulin to cover food. Now, I do know studies are being done with children with markers, siblings of type 1s and newly diagnosed. Is there all this gray area between all the types, if there is there needs to be more awareness.

S’OK – the ol’ gray Nag, she ain’t what she used to be… LOL!!!

And yes, I think you’re right – among the obese, it surely must differ too, although I haven’t put as much study into that area, since I’ve mostly concentrated on myself. I do know, however, that obesity itself, above and beyond diabetes, is much more complex, and much more treatment resistant than the public and media recognize.

I really wish I were seeing more research into the varieties of Type 2 – not just stuff that excludes everyone who doesn’t fit into the narrow range of classic Type 2’s with A1c’s over 8. Wishful thinker, I am!

I too, am a Type weird, I would say anyway. I have insulin antibodies, but negative GAD and negative ICAA. I started on insulin about 2 weeks after diagnosis, when oral meds werent’ cutting it, and I was diagnosed with D after suffering bilateral pneumonia and 2 weeks in the hospital. I was on MDI for a year and have since been on a pump for the past year. I am fortunate, because I have an endo that supported my decision to pump. I habe a TDD of about 20 units. Have lost 50 lbs since diagnosis which hasn’t affected my control or dose. I was never “obese” or insulin resistant. ALthough I am a T2 on paper currently my endo classifies me as "t1 “ish”. Don’t know why. I still make a little of my own insulin. This helps alot.

I wish your endo would just go with the flow and put you down as Type 1, because Type 1’s get better medical treatment and insurance coverage. Not to speak of being in the hospital and being treated with Type 2 protocols, and then they can’t figure out why your BGs are going up and not down. If you’re not a classic Type 2, the hospital can KILL you by treating you with Type 2 protocols.

It’s coming. I think we’re on the edge of an explosion of new medical knowledge as the genome gives up its secrets. I’m amazed with how much we’ve learned already. To me, it’s starting to look like a nearly vertical learning curve.

Natalie, from your account here, you were never Rx’d Metformin; you were Rx’d Glipizide, a sulfonylurea. The FDA did not approve Glucophage (Metformin) for T2 diabetes until 1994. Glucotrol, the oral medication you mention in your post, was the Pfizer brand name for Glipizide which is the oral med that I was Rx’d when I was first dx.

Since Glucotrol (Glipizide) is a sulfonylurea and causes the beta cells in one’s pancreas to release insulin, it would make sense that Glucotrol would not work for you if your pancreas were not producing much insulin. The pancreas cannot release what it is does not have available.

That’s exactly what my doc said when I showed him that Glucotrol was not working.

When Metformin came out, my PCP offered it to me, but I refused, because insulin was already doing the job at a reasonable dosage. And I couldn’t, and still can’t, see any reason to subject myself to its GI side-effects when I already have GI problems to begin with.

In answer to a post you wrote on another thread (couldn’t answer there) – highly insulin-resistant Type 2’s face a true quandary, because there IS no happy answer for them. So far as I know, there is no consensus on whether hyperinsulinemia contributes to cardiovascular disease, but it may be true. The sulfonylureas just contribute to hyperinsulinemia, and that contributes to weight gain, so whether the insulin comes from their own pancreases or from a “goose” by a sulf, or from injected insulin, the result is still the same. A vicious circle.

The question about the sulfs, for which I have no answer, is, is the possible increase in CVD a result of the drug itself, or is it a result of the increased hyperinsulinemia? If from the drug itself, then injected insulin would be a better answer, but if from the hyperinsulinemia, then it’s a wash, and a bad one.

I would be suspicious of the other orals, simply because they are all rather new, and who knows what they will cause down the line? An example is that several European countries have recently banned Actos, on the likelihood of it causing bladder cancer.

So I just don’t see any good answers for Type 2’s. Diet and exercise, always, but they have their limitations. Low-carb has given some exemplary results to some people, but demands self-discipline and education, which many Type 2’s may not have. Bariatric surgery works for some, but it has its risks, too, and demands a life-long change in eating habits.

I can certainly see why Type 2’s can be fatalistic – you CAN’T just pop a pill and forget it, but NOTHING is effective without a lot of hard work and discipline. My hat’s off to Type 2’s who work at it day in and day out and and never give up!

One of the problems with T2s is that they often can slide for awhile. The disease is not in their face like it is with a T1. T1s learns quickly that they will go DKA or die if they do not manage their diabetes. For them, it’s mission critical. OTOH, typical T2s can live in denial or simply choose to ignore their diabetes for years until one day the symptoms of chronic neglect catch them.

My own feeling is that many T2s are not led into good paths of therapy. The doctor who dx my diabetes is a personal friend of mine. He Rx’d Glipizide for me, and I know he was sincere and meant absolutely no ill will toward me. He did what he thought was in my best interest. In fact, he took Glipizide himself! I guess what bothers me though is that for whatever reason, insulin was never offered. I really hope this mindset changes. I’m glad I have an endo who understands this and gets it. He’s all for T1s and T2s getting on insulin and going low carb if they have the discipline to do so. However, when I read all of the stories of patients who are not receiving sound treatment and are floundering on the pill-pusher merry-go-round, yes, it does bother me. I believe that the medical community can do better, and should do better.

In the case of Type Wierds, as you put it, starting them on oral meds is not necessarily doing them any favors either. Your own story is a good example of that.

You are right though; no matter what type of diabetes one has, it takes hard work and discipline to stay ahead of this disease. Oral meds alone and insulin alone are not enough.

Thanks for all the good information you guys. I still can’t understand all the jargon but I’m working on it. :slight_smile: BMD: My husband just had an angioplasty this year. He’s not diabetic. It was frightening for us. He’s okay now. Hope you are too.

Thanks for asking, Peetie. Yes, I’m doing fine. What was freaky for me was having the cardiologists open my two blocked arteries and insert the stents while I watched the process on an overhead monitor. There was no doubt in my mind that I needed those stents.

The worst part of the ordeal was the post-procedure medications that they Rx’d. At first they put me on Plavix, and I was allergic to it (hives). Then they Rx’d Effient. That was an excellent oral med, but it made turned me into a bleeder. I worried about getting into an auto accident and bleeding to death. Anyway, I’m finally off Effient now and am doing fine. Glad to hear your hubby is doing good as well. :slight_smile:

We had this discussion. I am OK with it now, because I am getting the propper treatment. I am in the healthcare field (I am a NP) and would never give up my insulin pump if I was to be hospitalized again. I am fortunate that even with a T2 diagnosis on paper, my insurance compamy has been nothing but wonderful in 100% coverage for pump and supplies and with strips and even CGM sensors. This is why I haven’t pushed it.

Natalie, I don’t think you are in fact Type Weird. You are Type ‘needs to be on insulin’ and you have the treatment that you need, so it is a positive outcome there. But in fact, you have not have the appropriate tests done. No antibody testing - for all you know, you might really have antibodies. Or you might not. You also haven’t had C-peptide testing done.

The results of these two tests will not change your outcome or your treatment. And because you already have the right treatment, labels are irrelevant. But I don’t think you can conclude anything until you know where you stand in terms of antibody and C-peptide levels.

As you know, I too have had my own diabetic existential crisis and thought I too was Type Weird. But the results of my antibody tests (negative) and C-peptide tests (almost zero) finally brought closure and a final tag of 'Type 1b (late onset, non-autoimmune Type 1).

I am still so weird that I am the subject of water cooler conversation among the doctors in my hospital diabetes department!

Well, since I invented the term, Type Weird means exactly what I decide it means, no more, no less. Sounding astonishingly like the Red Queen in Alice in Wonderland!!! :slight_smile:

Since 2 CDEs and one endo have independently told me I’m a Type 1, and not being ENTIRELY stupid (just mostly), I tell people I’m Type 1 for all medical purposes. And since it won’t change my treatment one iota, I’m not willing to spring for antibody or C-peptide testing at this time.

Type Weird is just my way of making peace with myself emotionally (not that I’m being particularly successful at this point) with this beast of diabetes.

You can, of course, define yourself in any way you choose. And I have the luxury of not having had to pay for my antibody and C-peptide testing so I am in no position to tell people to pay for something that’s not going to make one iota of difference in their treatment. I’m just pointing out that you haven’t actually had the antibody and C-peptide tests - these could confirm autoimmune Type 1, or non-autoimmune Type 1, or maybe even muddy the waters further. But you can’t say for sure until you’ve had the tests.

Count me in on the Type “Wierd” classification. I was one of those average weight (not thin) type 2’s. I worked out a ton and was very muscular. I think I was 148 at the time. Now I am under 120. It took me almost 3 years to get my bgs under control. The CDE’s and their diets sent my bgs soaring. I also found that exercise sent me soaring. The only thing that has helped me is a pretty low carb diet. If I eat more than 10-12 carbs per meal, I spike. I have been able to stay off insulin so far but my doctor thinks I will need it soon because he assumes since I am now thin, I am no longer insulin resistant. Since I have high deductible insurance which won’t pay for my insulin until we spend $6000, I am waiting it out as long as possible. I really do think there are some of us who don’t fit neatly into a category.