My story, with lots of questions! New type 1


Hey Zoe~ I've been following this conversation and I disagre (well, for me anyway) and feel this has been a great conversation and has probablly helped a lot of folks. As a CDE who's been involved in the diabetes community professionally for over 20 years and as a sibling (my sister has had T1 for 30 years) this conversation has been excellent. I totally agree that symantics are a huge part of the discussion and science as well. The problem is that as several have mentioned everyone's diabetes is a little bit different becuase the human physiology is SOOO complex that one enzyme different from one T1 to the next can make a difference and T2 is even more complex (physiologically). I also know that as Jean (aka laguitarista) makes a good point about genetics and that I know several folks who have + GAD, develop the entire spectrum of insulin resistance markers (elevated triglycerides, low HDL-cholesterol, extra weight, insulin (even though they've been taking it for years) that doesn't seem to work very well and more than expected is needed to control sugars) and if the hadn't developed T1 ever they most likely would have still developed T2. The ongoing classification of Type1 and Type 2 has oulived the science and I'm hopefull that to make everyone even more confused they (whoever is in charge of the classification system) will come up with a less confusing way to 'categorize'. Really T1 and T2 are totally different diseases with different mechanisms resulting in a similar situation (elevated sugar/glucose). Besides LADA there is also another somewhat common form that we see clinically called ketosis prone (Flatbush) that is more common in the black community where the presentation looks like T1 because there can be ketones and DKA, but then glucoses can get very high without DKA (in the 400-700 mg/dl range) and those folks can go without insulin sometimes for months without 'getting sick'. My point is that there are many varieties of diabetes that don't fit into the current T1 and T2. As per this conversation that are also differences within T1 community and T2 community. So, thank you for keeping that conversation going because it was beneficial to me. AND, thanks for all the other posts, you've obviously spent a great deal of time/effort (besides what it takes just to live with D) to understand your diabetes and what works for you, I wish more folks (not necessarily on this formum, but in general) would follow your lead.


Hiya sm (snarkymonkey)~ I've really enjoyed being 'in' on this conversation so, it totally sucks that you have to be dealing with D, but I think your initial post will continue to generate comments for a long time so I encourage you to think of yourself as both getting and giving. I know someplace in the chain someone mentioned meeting with a CDE and I, seeing as I am one, I totally agree. You need both this type of forum and direction along with a person whom can help guide you and you develop a sence of trust with (sometimes the CDE's, both RN and RD, have more time and 'practical' assistance than your MD). A person with D needs a team approach with YOU as the leader and your forum friends, MD, CDE's, pharmacists, health psychologists, family, friends etc......... all playing a role. Just like in any profession or discipline there are all varieties and competencies of providers so shop around if you can and find team members that work for you!


Semantics, semantics... I think I'll bite.

As a CDE, perhaps you could push a movement to eliminate current terminology. There obviously needs to be more designations, because it sounds ridiculous to say that a person can have both types. It truly does. They have different causes.

When using MINIVANDITTI as a guide, one realizes that a disease process may occur due to metabolic, infectious/inflammatory, neoplastic, iatrogenic, vascular, anomalous, nutritious, developmental, idiopathic, traumatic, toxic, or immune-mediated reasons.

Diabetes occurs primarily through immune-mediated or metabolic mechanisms. There is a possibility, of course, that you may have a combination of both mechanisms. This does not mean a person has 'both types'. It means that they have a combination. You also should not forget about diabetes insipidus, though that's caused by a different metabolic mechanism than even 'type 2'. My sister had diabetes insipidus. And as an FYI, animals can have all the 'diabeetuses' too, varying from species to species in severity and pathogeneses.

Anyway, if I were in charge, I believe it would make the most sense to do the following classifications:

Type 1 would become Immune-Mediated or Autoimmune Diabetes Mellitus
If a type 1 then developed insulin resistance, I would add 'with insulin resistance'. I would not add 'secondary' because in this case, the autoimmune process attacking the pancreas did not tell the body to become insulin resistant. The genetic predisposition was already there.
And of course, you can further divide the classification of immune mediated or autoimmune into the various types of autoimmune processes that result in a 'type 1'... LADA, MODY, etc.. whatever.

Pre-type 2 would become something to the effect of Early Metabolic Syndrome (if it's not called this already. Horses develop metabolic syndrome which is a state of insulin resistance; they never fully develop diabetes, but having elevated blood glucose for long periods of time leads to regional adiposity and a condition called laminitis, so this is my basis.)

Type 2, then, would be something along the lines of 'Insulin Resistant Diabetes Mellitus'... and if they later become insulin dependent as a result of destruction to the pancreas? I would add something to the effect of 'with secondary insulin dependence'.

I don't know why human medicine insists on making things very convoluted, but they do. I know it's because they still don't know a lot about diabetes in general (let's face it, they don't) --- but having a classification scheme similar to above, better defined and better labeled perhaps, would solve a lot of issues with arguments like these. Maybe in veterinary medicine we just like to make things make sense. Sure makes it easier to explain to clients.


Although, I think I'd change the Pre-type 2 to Early Insulin Resistance since metabolic syndrome is used for something else in human medicine already.


Hi Kara! Thanks for posting. I enjoying all the conversations too, it's all been very helpful! I do hope I can give something back to this forum.

I certainly agree about tapping all the resources I can. As a CDE, do you have any thoughts on my original questions that haven't already been addressed? I've been researching local CDE's and nutritionists, but it could be a while before I can get to see them.


So, it's an awesome morning so far! For the first time in months, I DON"T HAVE A HEADACHE!!! Happy dance!

I'm not sure if it was because of the amazing shoulder rub my hubby gave last night, or the fact that my bs is finally under 200 (I know it's still high, but 2nd happy dance for being better!), or both, but I'm so grateful to get a break! Without that constant head pain, the rest of my lingering symptoms don't seem so bad. :-)


I really agree with a huge majority of what’s been posted. Being a ‘seasoned’ RN CDE I can only speak from thatnperspective and not having to live with D. I very much agree with whoever it that said that your hydration status and whatbcould be having some insulin resistance on top of not having enough insulin created the slow progression to ‘reasonable’ sugars. About your labs, with + GAD your body won’t be making enough insulin so whatever you want to label that (insulin deficient)’ T1, whatever, you’ll most likely always need some insulin. The others, give it at least 3-6 months for your body to equilibrate some and then you’ll need those all rechecked, in addition a TSH which is a thyroid test to make sure your thyroid gland isn’t being “autoimmunely” ‘taken out’/destroyed’ as well. I think the autoimmune hypothyroid is the most common autoimmune ‘disease’ there is. I know it sounds cliche’, but it’ll take some time for your body to balance, then getting or keeping that balance is the tricky and often frustrating part. just do your best!


Can I ask where you are located? Maybe I can help out


when i was diagnosed alomost 11 years ( i was diagnosed in march of 2002 so i count tht as the begining of a year ) my blood sugars were over 700 and i had many of the symtoms you have. how you feel usually depends on your blood sugars and its diffrent for everyone. i start feeling low when i reach the 80s and i normally feel fine until i reach the 230s. once your blood sugar drops you will feel alot better! if your still haveing really high numbers after 2 weeks you need to talk to your doctor cause you probably need more insulin. high blood sugars like that for a constint amount of time can lead to kidney damage, blindness and other complications. ( im only 14 and so i pobably dont know as good of info like others on here )


I couldn’t agree more!! All we can do and have tried and will continue to do is have educate and have conversations about it. In vet med do you use the phrase ‘fleas and ticks’ for referring to two different disease states that are occurring, but get all jumbled up? They use that sometimes in human med and I think it fits really well. Except with D it’s two different disease states that very unfortunately got named way too similarly and that started the confusion, way back when…


Thanks, Kara, that's very kind! This forum was part of how I figured out my correct diagnosis when I was living in Guatemala, the oral meds stopped working and my blood sugars were in the 300s and 400s, so I like to help others and still come here when I have questions because the learning is ongoing.


I don't know that I have questions about your diagnosis, so much as it seems that you have a fair degree of insulin resistance in addition to your antibodies. I say this because you are taking larger doses of insulin than a Type 1 without insulin resistance with still not good results and because you've gained weight and have difficulty losing weight.


What were you doing in Guatemala? My aunt spent 7-8 years in The Peten helping set up women’s health initiatives/sanitation and the like. That was back in the 90’s.

And I agree, ongoing learning is paramount.


Yay! Congrats on getting your blood sugar down - under 200 is a great milestone! And on feeling some relief.


We also see many T1 who also take metformin which is an ‘insulin sensitizer’, but that’s something you would need to discuss with your MD.(this for sm and you, Zoe).


Zoe- my endo did bring up the possibility of insulin resistance (he actually said that I might have both type 1 AND 2), but didn't go into what that really means for me.

My pre-lunch bs just came in at 149, so it looks like my dose will stay close to 88 units of the novolog mix a day until I switch to basal/bolus. What would be the normal dose for someone without insulin resistance?

Is there anything other than diet/excercise that can help improve insulin sensitivity? Other meds, supplements, etc?


Plus Bernstein has been T1 for zillions of years and is fine, his triglycerides more than perfect. Many doctors still consider him a renegade MD. But he and his patients are walking proof of his ideas.


Snarky Monkey, you sound mature and smart. If you think you could handle it, and you want the best tool for fine tuning your treatment, push your doctor to put you on an insulin pump. I guess your insurance/$ situation would be a factor too, as a pump is costlier to maintain than MDI... But it makes all the difference for me. MDI couldn't track my basal pattern effectively.


I take a TDD (Total daily dose of basal + bolus) of about 20 units; I think that's pretty typical for a T1 without IR, though we all vary a bit.

Unfortunately losing weight (which is hard to do with insulin resistance) is one of the key things to improve insulin sensitivity. But exercise if you're good at that is a tremendous boon. I've walked 10 blocks to the market and then around the aisles and gone low - not major exercise! So I started taking less for breakfast those days. Eating low or lower carb can also help both with IR (because you need to bolus less for lower carb meals) and weight loss.

Some Type 1's with insulin resistance take Metformin and states it helps. I think there is even a group for it on here, though your doctor might want to get you stable first. There is also a drug called Symlin which both Type 1's and Type 2's can take, that lowers need for insulin by as much as a half, reduces blood sugar spikes, and can help with weight loss. But it is injections with every meal, and quite complex to take as everyone is different in terms of the timing they take it,dose they use, and how much they reduce insulin. I took it for a few months and though it did reduce my insulin use by nearly 1/2 I didn't lose an ounce (I'm 63 - losing is near impossible), so I decided for me it wasn't worth it, but others have had success. There is also a Symlin group on here, but I think your doctor will definitely want you to wait before exploring that.

Btw another boon of the basal/bolus regimen is corrections, which I don't believe you can do with 70/30 as they include your long-acting. For example if I was 149 before lunch I would add a correction to my bolus, because if I start that high there is nowhere to go but up. Corrections for me are a big way I got my A1C so low.


For me? I'm pretty insulin sensitive, it was one of the ways I rediagnosed myself as Type 1.