Self Diagnosing LADA?

Type 1 and LADA
#1

I was diagnosed as a type 1 last year at 32 years old after having the swine flu with an AIC over 10 and test showing GAD antibodies with a very low c peptide. I am really very functioning and have found that if I take pretty much any basal I always go low. Typical that I rise over night and spike high with my first carb meal and then I function pretty good throughout the day.
I have basically taken myself off basal and take around 5 or less units of fast throughout the day and I think am function better.

My question, after all of that, is that my endo just says I am a type 1...Is type 1.5 sort of a self diagnosis? They said before "your just in the honeymoon" but I feel my honeymoon is going to last many many years.

#2

LADA is just a slow onset form of Type 1. The amount of time that it takes before the full attack on the beta cells varies from a few months to a few years. But research shows that starting on insulin early preserves beta cells longer.

#3

Thanks, I have looked up quite a bit. The struggle I have is eating to support shooting insulin. My endo just wants me to take insulin to preserve function, but it doesn't make sense to me if any seems to cause lows consistently.

#4

LADA is my diagnosis as well. I don’t dwell on the differences too much… Long story short it is just a term that evolved to differentiate adult onset type 1 (which is generally slower than juvenile onset) from type 2. Zoe is right though, continue with insulin from the start, and continue with basal even if it’s only a tiny amount. I’ve been “honeymooning” for 2+ years now but the trend over the long run is always more and more insulin

#5

Hi Matt,

Lada and 1.5 aren't an official diagnosis. They usually describe a slower onset of type 1 and they are the same as type 1. If I were you I would try taking the lowest possible dose of basal and whatever you need for meals at this point. I would also try to get into some research studies which may help slow down your onset to higher doses of insulin and insulin dependency. Hopefully your honeymoon will last for a long time. If you eat low carb and take both low dose basal insulin and fast acting for meals you have a good chance of making it last indefinitely. Once you go to dka it is much worse, but even then you can recover somewhat. The insulin is going to help preserve your beta cell function and stop dka. If you take a lower dose maybe 1 unit or .5 unit basal, you should be ok?

#6

I don't think DKA is as common in LADAs, perhaps because of the slow onset. Maybe Melitta knows for sure about this. It would make sense that we wouldn't commonly go into DKA at diagnosis as we have "warning" with our slower onset and still make sufficient insulin. But I have a sense there might be something else that "protects" us from it as well. Perhaps it's just the residual insulin. Before I started insulin, when I was grappling with correct diagnosis I was frequently in the 300s and even 400s with no sign of illness. Perhaps it happens above that, but I was also making .38 c-peptide then. Now you have me curious.

#7

Um, what exactly was the question? You described your diagnosis and now are correctly describing honeymoon.

I was diagnosed as a kid and my honeymoon was about 1 year after diagnosis, just like yours.

LADA or T1.5, is still really T1.

#8

Matt, if that avatar picture is you currently, you're a walking steak :-) That's a good thing! I'm not surprised your insulin requirements are so low, as you are very lean, lots of muscle mass, and of course by implication lots of physical activity (you've got to be working out every day, right?)

If you don't need basal insulin just to simply keep you BG in line while sedentary, then you're still producing insulin. Antibody tests are definitive in distinguishing between T1 LADA, and T2.

Regardless, and in spite of your exceptional physical status, you too need to keep your BG in line -- all the time, not just when you spot check it. If you can get approved for a CGM, or even get a loaner for a week or a month, that would help you a ton in understanding how your BG reacts to foods, exercise, sleep, etc., and develop a good treatment regimen.

In fact, in my informed but still non-expert opinion, diabetics like you are in danger of having what I call "hyperglycemia unawareness" -- i.e., high sugars without knowing it. Being in such awesome physical shape tends to make your body more forgiving of various assaults, and I'm guessing that the "I feel like crap" feeling that most of us not in as great shape as you feel when we get into the mid to high 100's you may not notice as easily.

Just a thought.

#9

I'd chalk up low insulin requirements to low/lean body mass as well, probably activity as well .Granted, I'm not that lean (though I'm slim I'm not really all that muscular lol) and I'm not very active (I wouldn't say sedentary though I am the secretary type, I often do walk a lot) and I don't use a high insulin dose either. I always hear things about honeymoons and got told I'm in that before but I think my insulin requirements actually changed from what they were early on (where I could correct and didn't go hypo as often) due to weight loss . I went from 133 lbs to 124-125 ish in less than a year (unintentionally :( ) and that can do it too, I think? I used to use a little bit more than I do now, I now use around 16-20 units a day total on lantus and novolog (during my short stint with a pump I used 10 units a day if that).

Apparently Matt here has a CGM so I'm pretty sure he does a good job at the whole keeping himself in line thing , so I'd assume he's just the standard type 1 with a very slim body that means he doesn't use much of any insulin. This is all based on my own observations though.

#10

That pic was taken the week before I competed in a professional natural bodybuilding contest. Since then I have lost a bit of muscle and haven't worked out in 7 months due to pretty chronic and unpredictable back pain (having nothing to do with diabetes).
I have a cgm, so I have a pretty good idea of where I am at and how my body responds to foods and the time of day.
Thanks for the response.

#11

You may be right Zoe, I'm not sure how many dka cases are in slow onset type 1 at diagnosis, but they can go into it just like fast onset do when insulin production gets low enough. When I went to dka I was at .2 c peptide. High bg is one of the symptoms of dka, because no insulin( the usual cause of dka) = no metabolizing food and starvation occurs, your liver keeps producing glycogen to try to remedy that, so even with no food intake, your bg will keep going higher and higher in dka with no way of going down. I was in early dka at 279 and had severe acidosis 2 days later at 3-400. I think the bg level will vary for everyone, but the ph level in the blood is what measures the acidosis.

#12

Hi Matt, I just got on forum looking for something along line of this thread. I just met a guy around your age, also dx a year ago with T1. He was put on insulin, and took for 2 months, then he stopped taking any insulin because he was experiencing lows. He totally altered his diet, started a ketogenic diet, and now has been "insulin free" for 9 months with A1C on the low side. His thought, that any T1 can reverse diabetes if having any beta cell function left by following ketogenic diet. I wondered if he was truly T1, or if LADA, or what his dx actually is, if it even matters? My question for the group, and maybe should start another thread, but seems fitting here, is it important to continue taking insulin to preserve beta cell function longer? Or if during 'honey-moon' phase, having lows, is it good idea to go off insulin? How long can it last, to go without insulin for T1/1.5? Is it truly reversal, or just honey-moon phase?

#13

matt, i was diagnosed three years ago almost and i only take basal most of the time. i eat about 75-100 carbs a day, so not low-carb, but low carbish, and i exercise every day. i dont seem to need bolus for day to day except when i eat a treat.

i was also diagnosed t1 with no mention of lada. i cant believe the honeymoon is this long and am hoping it will stay like this forever, though my insulin needs have also gone higher and higher. im still only taking about 10 units of basal.

i just got a new insulin pen that has half units. maybe that might help, if you could do half units? its helped me cut out some of the problems with exercise and insulin and food.

#14

I was 34 when I crashed, my BG was +800md/dl. Your on the right track, I ignored my symptoms until I could not function. Looking back I would say my decline started about 12 to 18 months before I crashed. After I started giving myself some insulin everyday my body recovered and I started telling my doctor, this diabetes stuff is easy, he would smile and say enjoy your honeymoon... you will get much worse...he was 100% correct. It took about 15 years before my C-pep become undetectable...now my tests come back saying [results less than <.05].

I'm completely dependent on insulin...just a few hours without IOB and my body starts the DK process.....

#15

John, how long did your honeymoon last? Like you, I was diagnosed at 34 after losing 30 pounds in a month and a half. It's been about 18 months and I am still only taking a basal shot, maybe a bolus occassionally. How long was it until your sugars became increasingly hard to control?

#16

I only used the old slower insulin for the first 5 years, I did not pay to much attention to my BG, when I first started using insulin I tested my BG maybe once or twice a day (with a pee strip) and when I got my first meter I was reluctant to use because it cost a lot and was coming out of my pocket. All of this aggressive insulin treatment started long after I was Dx, I probably lived 15 years as a diabetic before my first A1c and antibody testing. The old insulin regiments where simple, we just injected our insulin two or three times a day and ate every few hours or we went low, night time was the scary part of the old insulin regiments....not saying it was worse,that was just what we had...I now wear a CGMS/and pump insulin so I can worry and fuss over my BG 24/7...Hmm is it better, yes but some days I wish I could just do that injection of the old stuff and enjoy my day.

#17

If he's truly Type 1 (not mis-diagnosed), then he did not 'reverse it'. It's just a long honey-moon. If he's LADA, the 'honey-moon' can last for years.

I actually went off insulin about 18 months after diagnosis (I was on insulin Day 1.) Indecently, this happened the day before my 30th birthday which happened to coincide with an appendectomy! I was taking 140 units/day the day before and zero after the surgery...My Endo was scratching his head...I suppose that was before much was known about LADA.
I was off insulin completely for about two or three years!

#18

Pantuzzo, I was also 34 at diagnosis. It was 13 years before I even started insulin earlier this year (and am still on only a tiny basal dose, with no bolus). Before that, I was doing fine on oral meds and low carb (I was misdiagnosed as T2).

I'm clearly an outlier, but it can really vary greatly from person to person. Some people need a bolus immediately away and others go years.

#19

so I can worry and fuss over my BG 24/7...Hmm is it better, yes but some days I wish I could just do that injection of the old stuff and enjoy my day.

wrote JohnG

So do I John , LOL type one 46 years pre-glucometer: I did but one shot a day for over 25 years!! Then, SEVERAL YEARS of The "new-fangled" MDI is what drove me to a pump!!