Questions of new types & general type 1 issues

lately ive seen things such as type 1.5 & type 3…are these new developments or just new labels?i can only guess with this, but when i was diagnosed my endo told me i had a choice of being type 1 or 2.yes,sounds as weird to me as it does to you.he said i had the choice of pill or injection but would be set months back by the pill & of course rate of death higher.this all being brought up at the time when i was in my early teens.would that be a type 1.5?maybe is just me ,but has anyone else had multiple dr’s treat their diabetes as if it were the sniffles?i need to test 8-10 times a day because it is the only way thing stay under control,i tell these dr’s & they tell me the max is prior dr actually waned my supplies down drastically.
for example…
when i got there i was receiving 500 strips a month,then they brought it down 100 less each month until i only got 100 strips for 45 a dr i would think they would know the importance of used to be that dr’s were actually impressed i was that cautious with my levels,then gradually i hear "thats a complete waste,there is no need for more than 3 tests a day"
Am i the only one who thinks there is something wrong there?especially if you are active or need to eat more than normal,all those “unknowns” are some scary things.

I’m a big believer in trusting your instincts and it sure seems to me that your instincts are spot on! You deserve a good TEAM of diabetes healthcare providers. Please keep searching until you find healthcare providers you like.

There is a big difference between Type 1.5 and Type 2 – and you don’t get to choose. Type 1.5 is an autoimmune disease. In a nutshell, your body attacks its own pancreas until the pancreas can’t produce any insulin. The difference between Type 1.5 and Type 1 is that Type 1.5 occurs later in life while Type 1 is usually diagnosed in childhood or early adolescence. Insulin injections are mandatory for Type 1 and Type 1.5 people with diabetes. Insulin is life support. Without it, we would die.

Type 2 is a completely different condition, although it has the same primary symptom of high blood glucose. In Type 2, the pancreas still produces insulin but the body lacks the ability to use that insulin properly – a condition called “insulin resistance.” The body keeps producing insulin but the blood cells can’t use it correctly so blood glucose goes up. There are oral medications that reduce the insulin resistance, allowing cells to use insulin more efficiently. (There are other oral meds, too, but I’ll leave those for another day.) Type 2 sometimes can be controlled and can usually be improved through diet and exercise. Diet and exercise are important for Type 1, also, but contribute to overall health, not to controlling diabetes.

Type 2 people with diabetes often need to inject insulin, too.

I started out with a diagnosis of Type 2 and received the correct diagnosis of Type 1.5 a couple of years later. It matters that you get the correct diagnosis. First of all, if you don’t have Type 2, you can stop taking the orals meds since they won’t help. Knowing that I had Type 1.5 helped me adjust to and accept the fact that my pancreas was going to stop producing insulin altogether and I would have to be on insulin the rest of my life. It’s not my “fault.” It’s a biological fact. Diet and exercise didn’t control my blood glucose before my correct diagnosis and I felt like a failure. “All the other Type 2s seem to be able to do it. I’m not doing it perfectly. I’m a bad diabetic.” That was the dialog in my head.

As for Type 3, I think that refers to people close to diabetics: parents, spouses, etc. In a sense, since diabetes is a huge part of their lives, they “deserve” their own type of diabetes, too. :slight_smile:

You are completely right about testing often and how many test strips you need. There IS something wrong there – and it’s not YOU! :slight_smile:

Be a good advocate for yourself and keep coming back here to ask tons of questions. There’s so much collective wisdom here. You’re among friends. Wise friends.


Wow! So sad…it sounds like malpractice to me but we keep hearing these stories. How long have you been diagnosed? Janet covered it all…T1.5 is generally a T1 diagnosed later than usually seen (I was 50) with a sometimes more gradual onset and decreased insulin production as opposed to insulin resistance. There are more types, but I am not familiar with the T3 moniker.

Nicely covered, Janet!

Yes, Type 3 is an honorary distinction we give here on our site (and elsewhere on the internet) to those spouses and parents and other loved ones who are involved in caring for the diabetics in their lives. They don’t have to test their blood sugars, but they certainly have to put up with the effects of ours. :wink:

Russell, the official term for “1.5” is LADA, or latent autoimmune diabetes in adults.

thanks for the info.that type 3 thing is pretty funny,some do really have to put up with some craziness lol.its been a while since i was diagnosed so i dont remember the exact age,15 or 16.what i remember clearly is how much school i missed though.the school didnt care what was going on so instead of working with me they held me back a year & eventually expelled.i got in trouble for eating in class because of my blood sugar, no that would be a lawsuit today lol.well i think since ive gotten my new dr,things may get taken care of correctly.ive only been there once so who knows.havent been to a endo in years because there are none here that would take that i have medicare there are more possibilities.

Good luck, Russell. it sounds as though you know what you need to do and are just needing the professional backup.

Hey, you’re nearby. Try to look up Dr Jorge Diez as an endo. He’s based out of Hartford CT. He’s pretty
good and knows a lot about T1D, but you have to push him a little. Basically he wants you to manage your own diabetes and he’s there for advice and suggestios- but he knows that T1D is YOUR life and YOU know it better than any doctor ever could. He is young- maybe mid 30s or 40s? But, he’s helped many patients with T1D.

I’ve had a few really really really bad experiences with endos around here. They don’t seem to do their “homework” and I end up dumping them like a bad boyfriend- requesting my records and everything. I’m curious as to the name of your current endo, because he sounds like someone that I had (and dumped)

I’ve been diagnosed for almost 11 years and I’ve been through about 6 doctors. Which is kind of a lot, seeing as I would only see them in person once every four months (and I took a bit of a “vacation” for a while too- which is bad- don’t recommend it)

Oh, and I test about 12 tmies a day- sometimes more or less.
There should be NO LIMIT as to how many times a day you test.
What happens if you don’t feel well one day and use 16 test strips? Does that mean that you would have to ration out the rest of your prescription, skipping some days that month?

Your current endo needs a wrist slap. What he’s doing to you is not right.

Type 3 diabetes, along with being an honorary title for our family and friends, is actually a new form of Diabetes. I only found out because my friend at Brown University worked in the lab of the lady that discovered it. It seems that your brain makes insulin for use of your brain, and when the brain’s insulin levels drop, it causes abnormalities in brain cells, including degeneration of tissue. This is now being considered a possible cause of Alzheimers.
Dang, how many types are there now? 1, 1.5, 2, 3, and gestational? five flavors, very different causes…

More than that, even. There’s MODY, there’s diabetes caused by pancreatitis, diabetes caused by other organ failure (gall bladder, etc), diabetes caused by a lack of a pancreas (we have a member here with a newborn with this kind of diabetes).

I forgot to mention in my original post that there are blood tests you can have to determine if you have Type 1. One measures whether your pancreas is producing insulin and the other tests for certain antibodies that are present if you have Type 1.

Sorry. Still don’t know of a way to choose your type. :slight_smile:

It’s easy to determine if a person has Type 1 diabetes. The definitive, gold standard test for Type 1 autoimmune diabetes (at any age of onset) is antibody testing (glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies). The out-of-pocket expense for the test is less than $500, very worthwhile I would say. A c-peptide test is also very useful to indicate how much insulin production you have.

i’ll have to check him out,trying to stick around waterbury but its hard to be picky here.the last endo i had was dr.juan fica.REALLY good dr,but he got caught scamming the welfare insurance.he had a fake dr acting as him in on paper he was seeing twice as many people than he actually was.his partner failed the courses to become a legal dr (in some eastern block country) like 8 times.i was lucky & usually saw the real dr.he diagnosed me & then got me on the right track,then it was a matter of what i wanted as treatment.i wish the guy didnt get sent to prison because he helped alot of people.i think ive only changed primary docs around 5 times in 13 years,at first they are ok & then like clockwork the p.a. finds something they take insulting about me…then the bad mouthing begins.i actually got denied social security many times because of that.the lady told s.s. i was in a band & touring.dunno where that came from but the people believe the “professional” over the patient any day.
i dont have a current endo,just my new primary.dr mongeluzzo, i was impressed by how non-judgmental he was & asking for my prior was dr cherneskie out of terryville,he seemed to have a yea whatever kinda attitude when it came to my treatment.if my problem wasnt diagnosed by the 2nd visit to a specialist,he would either assume nothing was wrong or just slap a diagnosis down which werent specific at all.avoid him (terryville medical),alliance health care & basically associated with either hospital here.
so do you mean you took a break from going to the dr or treatment altogether? i wouldnt be able to do either,not knowing where i’m at sugar wise drives me insane lol.does that dr.diez have more than one office?i see alot of that now

i’m guessing it was borderline then because of my age ,like maybe he thought my pancreas could actually do its job lol.

a newborn? wow thats sad,i cant imagine having to do all the necessary stuff i do to stay alive to a would be nice if that govt bailout went all to stem cell research

funny you should say that, i did have to ration numerous times,sometimes going without for a few days.i would call the dr constantly & tell him to writ the correct testing amount on the script.he & his p.a. said tough ■■■■ we wont write for more than"x" amount per i had to pay out of pocket alot too,at full price.the p.a. said there was no reason to test that much(nor thought anyone did) she went as far to say i was selling my strips for drugs,i wish i had that on basically my advice to any diabetic with the state insurance or if ya dress a bit out of the norm avoid that dr.
i’m gonna try for the same amount of testing as you,i would feel much better if i checked 12+ times a first the docs try to get you to test alot when you get your diagnosis,because no one wants to.then as people understand it more & can self regulate with no help from the dr aside from getting your prescriptions thats when they get like that.less visits means less money.just a theory,but there are so many docs now that just see their job as a paycheck ,no real human concern.

Oh, well- I’m the only T1D that I know (except for some kid I met about a month ago) so I’ve been pretty lonely about the disease for a long time. No one in my family has it and no one that I have even SEEN has it. So, after doing all the testing, and working against the antibodies, and the resistance, and the Dka, and insulin shock comas, and seizures… I got frickin tired!

And I know it doesn’t help at all, but… I took a break from T1D. I tested maybe once every three days, injected only my basal, blind injected my short acting, etc. I actually was “okay” with it- ended up not going into shock anymore or Dka while doing that (so lucky!) So, I’m paying for that now- it’s taken a lot of work to get me back to where I need to be. That little rebellion happened about five years ago? I guess I don’t bounce back as well as others? :slight_smile:


I’ve never actually heard that term, but my doctors (all 7 that I’ve been through haha) have said that I have insulin resistance- along with antibodies- so Type 1 without being overweight, including resistance.

Nice to see a name for it.


up until i found out i had it,i’m 99% sure i didnt know any diabetics.when i was in kaynor tech, the nurse said there was only like 3 others in the school.same goes for me with the family thing,i’m the only one.funny thing about that is i’m the only one without glasses lol.ive heard from a few people a while back(late 90’s?) that in some people the polio vaccine actually reacted with a persons body diabetes being the side affect.i was told it was only from a certain batch, which explains alot.when people started to pay attention after all the glucometer commercials started,i noticed alot of people coming down with it around my age who had no family history & were otherwise healthy.if i found rock solid proof of that, imagine the size of the class action lawsuit?giving people a death sentence because of a screw up isnt really taken lightly.seeing as how it was mandatory to get that vaccine to be allowed to be in school,i’d imagine towns/cities & maybe others could be held liable.
so you’ve had the seizures & comas? i must be lucky because i haven’t had any of that,no insulin resistance either,used humalin-n & humalog the whole time.ive had to use others for a we at most & they didnt work well at all.were the comas from high or low levels?to be honest i rarely get fed up with t1d,i just dont think about it somehow.when i actually do i just get upset & angry,but it dosent prevent me from testing & what not,it makes do it more because i get fixated on what can happen if i dont.i guess the best way to put it is,i control my body i wont let it control me.granted i have physical limits now,like i cant hike the whole blue trail like i want to because i couldnt haul all the food i would need.i try to keep my abilities as close to a non-diabetic as sucks having to carry a 20-30lb backpack with me hiking sleeping giant,but i still take the toughest trail which is almost vertical & outlast my friends.the low sugar gets ridiculous when i do that but thats what the backpack is for,so how long do those coma’s last?i’ve only had a mild seizure before,but that wasnt t1d related.that whole night i had real bad tremors & when i woke up in the morning i was in a large bush lol.that part must have been from the amount of klonapin i needed to stop the tremors.6-8mg i think.

Yeah, I had major issues with Lantus- I was on it for two years and it would send me into shock during my sleep. I’d wake up on a gurney, ER, ICU, parametics at my side- having no clue how I got there- my head aching so badly- and of course I’d be fighting them subconsciously cuz who wants to get brought into a hospital in their underpants?

After seizuring with insulin shock during my sleep twice a month for five months, I told my doc to take me off the damn medicine and if he didn’t I threatened a lawsuit. I was so exhausted. I switched docs anyway, after, and was put on the pump for a while- when that didnt work out, I went to Levemir and it has worked beautifully. No issues with it at all.

I was on Humilin N about 9 years ago- that was one that you’d inject twice per day, right? And it has its own cycles- meaning you have to eat at certain times else you’ll go low?

I’m a bit of a puss when it comes to exerting myself physcially. I will do it (like working out for two hours of intense cardio- burning over 1000 calories) I love to do the workout, but I know that I will pay for it afterwards- with HIGH BG. A few times I did less intense cardio and ended up passed out on the gym floor. I haven’t figured it out quite yet. I always go with a buddy. haha.

Diabetes doesn’t hold me back MENTALLY. I make sure that I express myself that way.