I had an appointment with my Endo Dr today and left a little confused about my diagnosis. He says he is not sure yet if I’m type 1.5 or 2. He said time will tell. He is my story:
On May 19th this year I ended up in the hospital for 3 days. In mid March I got a flu like virus or something and got very sick. I normally don’t get sick and have always had a strong immune system. I was sick with flu like symptoms for about 2 weeks. Right after that I started getting very thirsty, drinking at least 6 liters of water a day or more, thus I had to pee a lot and didn’t get much sleep. Other symptoms were, blurry vision, dry eyes, very tired all the time, dried skin, leg and arm cramps, itchy groin area, unable to maintain an erection, and I lost 56 pounds in 6 weeks. These symptoms lasted about 6 weeks until I felt so terrible I ended up in the hospital,for 3 days. At the hospital my BG was 819 and my A1C was 15.3. The hospital started me on Lantus and Humalog. My c peptides test was 1.9 My urinalysis tests showed for Glucose 3+, and Keytones were 1+.
My Diabetes Dietician says I’m definitely LADA (1.5), but Endo says today that he isn’t sure what I am. In Sept I’m doing some blood work for another A1C and an iron test. Then at another date after those he will probably do three other test for autoimmune tests.
None the less, my Endo and DD have put me on a pump and I just got my CGM. I have been able to keep my BG between 70 and 120 most of the time. Sometimes higher and sometimes lower. I am loving the pump and CGM, it really has improved my quality of life and out look.
I just am wondering what the general consensus is out there on the forum from you all. I generally feel like I am LADA and not type 2, now after today I don’t know. I just want to make sure that I have the right diagnosis and am getting the correct treatment. I will be 49 yrs old in a few days and right now on the pump I use about 18 units a day of insulin for TDD. I try to keep my carbs at 60 per meal and 30 for snacks.
Any thoughts would be appreciated. Also, type 2 diabetes runs in my family on my mothers side, to include my mother who has now passed on.

That sounds like T1, rapid onset, weightloss, DKA, insulin sensitive. You need the full suite of antibody tests to prove autoimmune diabetes.
GADA,ICA,IA2A,ZnT8, since you are on insulin an IAA, May give a false positive. If any of the others are positive then you are confirmed as a T1.

You are on the right therapy and with a pump and cgm and are on track for good control. Don't be surprised if your TDD drops a bit more as your pancreas can recover a bit once your numbers are back under control. Called the honeymoon period - does not mean you are getting over it, just means your pancreas can help out a bit to keep your numbers in a better range.

Unfortunately a diagnosis of T2 really just means "diabetes of unknown cause." And T2 is not some uniform condition where everyone is totally overweight and a couch potato, it is a complex spectrum of issues and everybody is different. Until you get tested for antibodies you won't really know whether you definitively have T1. And it may be that you are just T2 or it could be that you are T1 and don't get a definitive diagnosis. And people get T2 even though they are normal weight and fit and it can even present just like T1. I consider myself T2 although I have lost most of my insulin production and my end pretty much considers me an "idiopathic" T1. At the threshold of diabetes diagnosis (blood sugar 200 mg/dl) you have already lost 80% of your beta cell function, so if your blood sugar get's out of control it can overwhelm you and you can end up in the ER just like you did.

Your doctor will need to do another c-peptide test, you original one was likely done in the hospital when you had a very high blood sugar and isn't useful. If your doctor does the tests and finds that you are T1/LADA that is great, but you shouldn't fret over things. In the end, all that really matters is that you get proper treatment and you seem to be getting that. Most T2s have real difficulty getting pumps and CGMs so actually your already being treated as a T1.

I would assume type 1 on that info alone, even with the family history of type 2. You don't use a whole lot of insulin (pretty close to what I use ...) and you have more of the obvious rapid type 1 onset symptoms like weight loss and ketones (besides the thirstiness and frequent urination, which are common for both types).

I was misdiagnosed as a type 2 despite being pretty small and slim and only being 22 years old with no family history of diabetes and also ketones in at least a trace amount any time I was awake if not much higher (because my blood sugar was often well above 200 mg/dL) , and lived with that for months until I got my endo (who I was fortunate to get an appointment 2 weeks or so after calling after months of suffering) and was properly diagnosed as a type 1. I feel like at least you're lucky you got insulin right away and didn't have to suffer without it , but I'd say my experience is somewhat similar despite being younger than you.

Hi John: Sounds like rapid-onset Type 1 diabetes, IMO. Here is a link to a discussion I started about rapid-onset Type 1. There are a lot of replies, but hopefully some of it is useful to you. Also, I wrote my top ten tips for the newly diagnosed adult with Type 1 diabetes that you might find helpful.

Sorry to welcome you to the club, but good that you have found TuDiabetes where you can get support and ask lots of questions! I am really glad that you already have a pump and CGM--that is awesome! You may not yet have a definitive diagnosis, but you are getting appropriate treatment.

Thanks for the replies. This site is great. I believe I am LADA and only time will tell. And after hearing your replies I feel better about my treatment and that I’m on the right course. I was afraid that if I had type 2, that I may be over treating. But I feel better now. Thanks again.

Your situation sounds very much like mine. I had a really bad case of the flu around Valentine’s Day. I was sick two solid weeks. After I got better from the flu, the thirst set in and getting up three times a night. I started losing wright and was tired all the time. By Memorial Day I was in the hospital with a diagnosis of insulin dependant diabetes. That was 30 years ago. I was in my mid 20s. I have been taking shots ever since. I would concur with the others here. It sounds like a classic case of type 1 diabetes.

I want to also add that in both our cases (yours and mine) it was the flu that triggered it. Our own immune systems attacked the insulin producing beta cells. Once they’re gone, they’re gone.

And of interest my onset was two months after getting the flumist live attenuated vaccine.
Had a few low grade bugs but not full on flu symptoms before onset of the usual symptoms of T1.

Your story is very familiar, I was 34 with a similar start. My TDD was around 25-30 units for my first 20+ years. I have tested positive for GAD and other T1 factors but over the years I have had some doctors that called me a type 2 and some that say I’m definitely not a type 2 but not a typical type 1…My diagnoses has always been as clear as mud…

It sounds like we have similar paths, but mine starting a 4 months ago. Sometimes I wonder if I could just stop taking the insulin and try diet and exercise. I feel like I have mostly good control right now and not using a lot of insulin, so,sometimes I want to stop the insulin and see how it goes without any. It doesn’t seem so bad right now. Maybe that is denial creeping in. I hear horror stories of people having huge BG swings and mine aren’t that bad. I know I need to stay on the insulin but sometimes I wonder.

If you have Type 1 diabetes, you can't do diet and exercise to control your BGs. My tip, stay on the insulin! Keep working with your medical team!

If a child had a BG of 819 mg/dl, an A1C of 15.3, the polys (polyuria, polydipsia, polyphagia), rapid weight loss without trying/known cause, had to be hospitalized for 3 days, the child would be given a diagnosis of Type 1 diabetes. None of this, "we aren't sure." A diagnosis of Type 1 is not based on age but on etiology.

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D-nial happens to all of us in the beginning, and even later in our journey. The fact that some of us do not need huge amounts of insulin to maintain control once we are out of the ICU, and back in normal range for a while does not mean that we are no longer T1 diabetics.

I truly wish mine would go away and I would not have to deal with retirement finance with D, long term care with D, nursing home with D. I see how my parents are feed etc in a place that it top notch. They have no idea what to do with a T1.

You mention you trial swings aren't that bad - how high are they and how low was your carb intake when you tried it? I know I did the same thing but I made sure I went back to a FULL carb meal like I used to eat, to give it a realistic test, cheese whopper, large fries, coke - - - hit 300 before my correction dose final started to work.

What I do know is that the more time I spend between 70 and 140 the easier it is to do, the better I feel and the more active I've been. My tslim and G4 have shown me the spikes I missed with with just a BG meter, as well as helped me get on top. If I go high I can fix it before things are too out of control and when I trend low I'm on top of it before it is dangerous.

Do I need much insulin? Not really, I had to go to U50 insulin in my pump, current TDD is 12 Units at U100 strength. I can't do it with MDI as I needed less than half unit dosing for my basal and bolus. On the pump I can have my life back- dose for meals rather than eat to insulin, adjust for hiking and backpacking or even for couch potato days.

It takes time but you will get there, just remember that there are many worse things to have than T1D.

How are you not a typical type 1? 25-30 units a day, gad positive? That's type 1. I don't know what idiot would think that's a type 2 ever.

Don't stop your insulin, that'd be incredibly stupid. Sounds like you have pretty decent control, similar-ish to mine even? I am mostly 70-130 mg/dL at all times possible. Sure I have lows and much higher readings but not as much since I figured out my mdi regimen. I don't have huge swings either , usually. If I swing it could be a low to a high but for me 67 would be the low or something along those lines and 170 being the high I've had that happen quite a few times. Most the time I don't swing though now that I'm on lantus and novolog and dose it the way I feel is right for me. Something makes me think having OCD isn't always bad it helps me stick to tight control.

I don’t plan on coming off my insulin, I know I can’t. I understand this isn’t like being sick for a few days, take some medicine and I’m all better. I’m still getting use to the idea that diabetes isn’t going to go away. What you said about the child with my symptoms makes a lot of sense and I never looked at it that way before. I feel I do have a good medical team.
I have read a lot of the info you put on the this site and want to say Thanks. I know it must take a lot of your time and it is appreciated. I’m so glad to have found this site.

I haven’t done any trial swings without insulin. I meant the swings while on insulin aren’t bad. If I have about 60 grams of carbs I will go from BG of 80’s to about 160’s to 170’s, in about 1 to 2 hrs. Then back down to 80’s and 90’s, while taking insulin, basal and bolus. I try to limit my carbs to 60 grams per meal and 30 grams per snack, total of 240 grams per day. I have an omnipod pump and a G4 CGM. I got my pump a month ago and got the CGM 3 days ago. My target BG is 90 and a my personal target range of 70 to 120, but my CGM is set up for a range of 70 to 180. Now that I have the correct tools I will continue to tweak my basal and bolus to try to achieve my target goals. I average about 18 units TDD, using U100 strength of Humalog. Thanks for the reply.

My family Dr said he thinks what may have lead to me getting diabetes may have been all the immunizations I have had over the years, and they took their toll on my pancreas. Up until a few yeas ago for work I used to do a lot of traveling overseas, mostly to remote jungle areas and other less desirable areas all over the world that required me to get many immunizations, most that even the local health nurses have never heard of and cost a lot of money to buy. I have probably had the hepititis series at least 6 times and never got the final 3rd shot in the series. I would have to get the tetnis shot every 3 yrs instead of the normal 10 yrs rotation due to the requirements of where I was working and there are many other immunizations I have had to have. So my family Dr thinks that was a contributing factor in my diabetes.

Well, time and antibody tests.

Good to hear. I went through the try it without bolus phase just to prove it was real after things where back to normal and boy was that a BIG fail. Glad to hear you are on a dexcom. The data is awesome, have changed how I eat for the most part and am much more on top of damage control when I go off the reservation. Not to say the pump can't help you deal with full fat /carb heavy foods with extended boluses etc. You will need to learn how to tweak for real life.

Have you read Pumping Insulin by John Walsh yet? It gives a good look at how to interpret your CGM readings, and how to use the G4 to help you set your basal rate, I:C ratios, DIA, and C.F. It has become my bible as things change and evolve. Understanding the why and how make the month to month, year to year, season to season changes a lot easier to deal with.

Glad you are getting the correct treatment options regardless of what your PCP calls you. Someone had a brain in their heads when they set you up for pump and cgm. Be sure to get a T1 dx on record as it makes a huge difference on insurance coverage of your absolutely essential treatment.

For me personally with my carb counting/guestimation skills I find that a BG target of 85 gets me to 100 post meals most of the time, both with my I:C and correction factors. If I went back to using a food scale for everything, dreary time consuming drudge factor, might be getting back to 80-90 without going low. On a good day I aim for about 40 gm carbs per real with no snacks. If your basal is set right you do not need a snack. As a male.vs a female carb total for the day will vary, for me a plan of around 120 works for me, not saying I don't go higher on nights out or family weekends..