Are my number too high already? When to start insulin?

I think I haven't opened my own thread here yet, although I find you people here most helpful (compared to other forums), by far.

I've been diagnosed with diabetes in June 2013, after going to my GP for reactive hypos (which I've had since I was 12, but became more frequent last year). She sent me to do OGTT which came back in "full blown" diabetes range (although my fasting level was just below prediabetic - 5.4 or 5.5 [98mg], my posprandial was around 12mmol (216mg) - TWICE). My a1c was 5.5% and 5.4% first two times.
Being 24 at the time, having normal lipids, blood pressure, weight (although I've gained about 16 pounds now and my BMI is just a bit above normal range, first time in my life) my GP was smart enough to send me to other doctors/endos.

After some time, they did test my autoantibodies, and one of them, IAA, came back positive (but NOT GAD as I usually hear.. ?).
My new(est) endo diagnosed me with "slow onset type 1", said to keep testing few times a month (said I must come back immidieately if my sugars get bad suddenly, although it wasn't established what that means), and told me to keep up with the "diet and exercise" regime. That was in april and my latest a1c was 5,9. She set my next appointment in October and sent me off.

Later on, I asked my GP what does it mean to "have my sugars really bad". She said that would be having sugars above 270mg (15mmol) and not coming down. That hasn't happened yet.

BUT - in these few months, my sugars are getting worse and worse. I still get occasional reactive hypo too, although they became much less frequent.
My readings are now regulary above 7 (126mg) even in the morning. Just this morning, I've figured out that my reading was 7,3 (131mg) although before I went to sleep it was 5,6 (101mg). That wasn't happening until now. My postprandials are now above 10 (180) about half of the time and I hit new "records" more often (my newest was 13,7 - 247mg a day before yesterday). The average reading for 90 days is supposedly about 7,5 which already accounts for a1c of about 6,5% I think?

Anyway, after all this writing, do you think I should contact my GP (it's hard to get a hold of my endo..)? That's a bit hard to do right now, because I'm away for work until mid-september. Also, do you think these numbers are insulin-worthy already? I mean, I often hear you people "recommend" it at even lower numbers. I'm just not sure my endo would be up for it.
How early did you people start with insulin (if you werent in ketoacidosis already at diagnosis, that is..)?


Yes, I think you should contact your GP. Are you monitoring and controlling carbs?

With fasting levels higher than 126, I do think you should be considering starting on insulin. Would be great to avoid those highs above 180 (and even better if post prandials can be kept below 140, which is generally the level that it is accepted that damage does start to add up.

However, if your GP doesn't consider anything higher than 270 is 'bad' she might not be prepared to treat yet. This does go against the advice that Adult onset type 1 should be treated with insulin.

If I were you I would be pushing to start treatment. Have you read 'Think like a pancreas'?

Yes it's time to start insulin. The longer you delay the more damage will be accumulate with your time above 140.

Call the endo if your GP will not start you. You might be able to manage with just mealtime insulin, or just basal.

One thing to remember is that all the studies point to early insulin use in LADAs preserving pancreatic function. The more functionality you can hold onto in the long run he better you will feel and the easier it will be to stay in control with fewer swings.

As for being GADA negative but other antibody positive- that is a very common pattern in LADA, I'm ICA positive but not GADA. Started basal bolus immediately after dx and am now pumping. My insulin requirements are low only about 10 units total for the day and even lower if I go low carb. It makes a huge difference in how I feel and function.

It WILL be worth the hassle of getting in with the endo.

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First, let me observe that if you have ever had external insulin therapy for more than two weeks that can induce IAA to be positive. Essentially our bodies react to the foreign insulin by generating these antibodies. If you have been on insulin therapy before, the IAA test is no longer useful. And most doctors reject impaired glucose tolerance as displayed by the OGTT as a diagnostic criteria for over diabetes. "Failing" an OGTT could either mean your blood sugar went over 200 mg/dl during the test or you were over 200 mg/dl at 2 hours. Being over 200 mg/dl at 2 hours is usually considered "diabetes." but not just going over 200 mg/dl.

And I would also recommend that you carefully consider your options for starting insulin. Most studies I've seen find that early insulin therapy makes a difference compared to waiting until you collapse in the ER (clearly very bad) against starting when your blood sugar meets an overt diabetes diagnosis. Starting insulin when your blood sugar is in the "pre-diabetic" range can be problematic. Your insulin production level will come and go and you will find it very hard to do proper dosing resulting in control that may be even worse than if you skip the insulin. Of particular concern is hypos which can be a serious adverse event.

And understand a typical introduction of insulin will start with a basal which will address your fasting blood sugars but won't help your meals. A bolus insulin will be introduced to address your meals. And if you eat the same meal and sometimes go to 140 mg/dl but other times go to 250 mg/dl you are going to have a real hard time bolusing properly. You should test 2 hours after the meal and see what your blood sugars are.

Personally I believe that all people with diabetes benefit by maintaining their blood sugars in normal range from the very beginning. I would hypothesize that early insulin use does exactly this, avoiding the high blood sugars which in themselves destroy your beta cells (so called glucotoxicity).

I am more of a fan of using all the tools (including medications typically identified as T2) available to attain safe control and then when it is clear you have reached the point of overt diabetes, then you should switch to insulin. I think this approach has merit for everyone with diabetes. Nobody benefits by waiting around until your blood sugar get's really, really, really bad before starting insulin. This goes for T1 or T2.

I think it would be prudent to press on your endo/GP to aggressive monitoring of your diabetes. You should have been given a c-peptide test and you should be seen quarterly. In my view, as soon as your blood sugars reach over diabetes you should see you endo and press for initiation of insulin use. Overt diabetes would be when your fasting blood sugars (after fasting 5-6 hours before a meal) are averaging over 126 mg/dl or when your after meal blood sugars are > 200 mg/dl 2 hours after a high carb meal.

ps. And your meter averages will not typically match your A1c. Your samples take readings at times that are generally higher than average. My A1c is typically 1% higher than the meter reading averages would suggest.

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Thank you for your observation about IAA, I already know that though, and I have NEVER been administered insulin. Like I said, my sugars never went that high. I'm the only LADA I've heard of that has only IAA positive though.
I know that official criteria for diagnosis of diabetes in my countrs is EITHER 11mmol at 2h of OGTT OR 6,5% a1c or 7mmol fasting.

I completely agree about insulin, that's why I ask about it (already did in the past) - I am kind of worried about my levels, I mean - would you REALLY consider my levels I stated still PREdiabetic?? BUT, I do have fear of hypos, especially since I already still get reactive hypos.

Thank you for other advice. I will definitely push my endo to watch over my diabetes more, I've been given c-peptide and insulin test in april, they were both in normal range still.

Again, what do you mean my levels reaching over diabetes? I mean, like I stated, my fasting levels already are over 7 and postprandial over 10 or even 12 most of the time - hm - but NOT always?? it gets back down eventually, but not in the 2h mark.

higher or lower?

Thank you for your answer. I've never heard about anybody being only IAA positive, though.
How low carb do you go?

Hey friend, you already know my story from tumblr...but I'd say yes you need to look into insulin. Your diabetes still is confusing to me where I'm not sure, but I don't think you've used insulin before at all where IAA being positive for you isn't a false positive, but since your cpeptide level's normal it's a tad confusing. I have a type weirdo thing going on lol I couldn't say pre-diabetes but I'm not sure what's actually going on. But since your post prandials are above 140 I'd say look into insulin.

Can someone summon Melitta? I feel like she'd be a lot more helpful on this one.

I use the term "overt diabetes" to mean diagnosable with diabetes. The diagnostic criteria is that you should be down to 200 mg/dl at two hours and I haven't been clear from your posts whether you are testing 2 hours. Are you over 200 mg/dl 2 hours after your meals?

yes, some of the time. sorry for using sometimes mmol instead of mg. my postprandial readings are often over 200mg but not always. my last 10 post meal readings: 187, 216, 126, 216, 247, 178, 124, 189, 196. As you can see 2/10 are actually over 200 and more than half are over 160 which suppose to be my goal (given by my doctors). Only a few months ago my readings rarely went over 180 and I had just two or three readings above 200 in more than half a year. That's why I'm worried.

If your readings are over 200 mg/dl 2 hours after eating then you have overt diabetes. You should get back to your doctor as having numbers that are too high and request appropriate treatment. Your GP's idea that a fasting blood sugar of 270 mg/dl is too high is really kinda crazy.

Your goal, which your doctors need to agree with, it to manage things so your blood sugar is normalized. Going over 200 mg/dl 2 hours after eating means that you are over 200 for like more than 6 hours a day. That isn't controlled. You can ask about insulin but I believe you could also consider medication. Should you be given medication work out a clear plan for escalating treatment, don't accept a "see you six months" plan. If it doesn't start working within a week or two it isn't working.

heeey! nope, haven't ever used insulin. well, I don't know. I've researched a bit and since IAA=Insulin Autoantibodies, that could be a reason for my post meal hypos? since autoantibodies bind to insulin and there can be to consequences to it: my pancreas overproducing insulin (while it still can?) or autoantibodies randomly droping that bound insulin (which is a condition on it's own, autoimmune hypoglycemis syndrome or something like that, but I don't think I have it, my hypos don't go that low)..
as for my c-peptide, my endo said that might change in time since they caught my diabetes early on..? no idea... ah..

Thank you. I will definitely get in touch with my GP, especially since I've just tested again and it was 207 again. I have about two months of hard work waiting for me now and I definitely don't want to be hospitalized for DKA or something.
I'm a bit sad/dissapointed because I expected this to progress more slowly (if at all...)

I would keep in touch with doctor but based on my own experience I would not start insulin therapy until my A1c was >6.5.

There's no doubt your headed for insulin therapy but it will be hard, maybe even imposable to manage until your fasting BG climbs

a little bit more. I bet just a small amount of activity lowers your BG a considerable amount and if you add insulin you will be grounded.

I suffered from reactive Hypos before I became insulin dependent and they are child's play when compared to a insulin Hypo.

You have a meter and can keep track of your progress, I did not have a meter and when I finally gave up my BG was over 800mg/dL .

Todays treatment options are different and your doctor may agree to give you a pin so you can make after meal corrections for a few months until your fasting BG brakes out and becomes uncontrolled, needing some basal insulin.

Hi Krisa: If I were in your shoes, I would talk to your doctor/endo about initiating insulin therapy at low doses. IMO, your numbers are too high. A fair number of studies, including the DCCT (Diabetes Control and Complications Trial), show that intensive insulin therapy preserves remnant beta cell mass, which leads to much better health outcomes (and quality of life). Some people here on TuD have even started insulin at just 3 units of long acting per day.

I have never heard anyone with slowly progressive Type 1 diabetes say that they wish they had waited longer to initiate insulin therapy, but I have sure heard a lot of people express regret that they didn't start sooner.

Hi Krisa,
How many carbs are you eating when you spike to 200 2 hrs after a meal? If you are eating more than 60 per meal that may be the problem. I'll easily spike over 200 if I go over 60 carbs myself.

Yay Melitta came along I was hoping you'd come along to help my friend from tumblr lol .

But yeah I'm kind of in agreement with the idea of low dose insulin therapy right off the bat (if post prandials are higher than 140 mg/dL at the least) because of my own experiences and how different it would of been, granted my numbers were still a lot higher than Krisa's are, where I should of been on the bolus/basal regimen I'm on right away. I wish I didn't have the circumstances that I did that prevented me from immediate insulin therapy as it was a life changer for me.

I haven't exactly counted until now, but just today for breakfast, I counted (approximation, but still) and it was just around 60. After that, I went for a walk (30min, fast paced), came back, waited about another half an hour, measured - 10,7mmol (193mg). Ugh...

I have no idea what my current a1c, but I will definitely try to find out and to get an appointment with my GP at least.
Insulin hypos are that bad?? That's what I'm afraid of. Because some of my reactive hypos are really horrible already.
Yes I'm lucky to have an option to measure my sugars regulary.

Thank you so much for this information. I will definitely try to find some of these studies and try to convince my endo, if not now, as soon as I can.

I could be wrong but it sounds like it was about 1 hr post meal. Did you take it at 2 hr? I've been trying to stay under 140 at all times and I am finding that I can barely eat 35 grams to stay under 140 at 1hr; although I may be 130 at 2hr afterward. I know you should be under 140 at 2 hr, but I'm not clear on how important it is not to spike at 1hr. Maybe someone with more experience could weigh in?