My experience is the total opposite of yours. I’ve never found a Dr. willing to prescribe insulin even though I’ve gone through a whole range of medications. The GAD is a measure of the ongoing severity of the autoimmune attack. It has no direct relationship to what remaining beta cell function you have. The c-peptide is what is called a “surrogate” measure of beta cell production. Unfortunately, the fasting c-peptide is mostly useless, and if your blood sugar at the time of the test was in the normal range (70-120 mg/dl), the fasting c-peptide is “totally” useless.
I know that you would prefer to give oral medications a try, but the best medical thinking is that early use of insulin helps preserve beta cell function. In the long-term, that is of great benefit to you.
To answer question #3 - for LADAs the rise is fairly gradual. I was fine on oral meds for 15 months and then the numbers began a slow steady rise. I went on insulin 5 months later but by then my numbers were too high; I probably should have done it around 3 months. But we all have a different rate of loss of beta cells, from a few months up to 6 years; mine was probably average, so no, I don’t think it is ever from one day to the next if you monitor your blood sugars regularly.
The fasting c-peptide only is useful in diagnosis when you have a high blood sugar. You don’t call on your beta cells to produce maximum insulin when you have a normal fasting, that happens when you eat a pizza. I’ve been suggesting that the stimulated c-peptide is a better measure of beta cell function, but there is no standard and almost nobody uses it. The fact that you have an autoimmune reaction does not mean that the reaction is out of control. Many people have an autoimmune conditions which are moderated and don’t ultimately lead to full destruction. The same thing happens here.
The prospect of takin insulin can be kinda scary. Let me suggest in response to your question 1, that you just believe you are the 1 in a million lucky one. The safe way to approach things would be to take insulin to “normalize” your blood sugar, that would just seem prudent. Then, assuming you are the lucky one, you should later be able to reduce you insulin dosing and still maintain “normal” blood sugars. In fact, some adult onset T1s find they go through a honeymoon and have their insulin production kick back in for a while. If you just abide by the guidance that you are going to use insulin as neeed to keep your blood sugars normalized, then as you discover that you are the lucky one, you should find your insulin requirements becoming smaller and smaller. Just don’t make the logical mistake of betting you are the lucky one, not taking insulin and not testing.
As to your question 2, that is actually a very important question, not often explained. It turns out that a recent study of diabetics who have lived more than 50 years with T1 (our own Richard157 took part) showed that most (if not all) still made some insulin, not much, but some. It turns out having some remaining insulin allows your body to fine tune blood sugar levels, buffering the need for exact dosing. A serious advantage. Preserve your beta cells if at all possible and the evidence seems to show that early insulin use preserves those beta cells.
If you decide to not take insulin until your diabetes gets “really bad,” will that work? Perhaps for a while, but you need to define what is really bad. In my view, defining really bad as in the ER, and maybe dead is not a good line to draw in the sand. The hard part is that with blood sugar control, you have a range of blood sugars where normal control actions can keep things “ok” and generally if your blood sugars are under 200 mg/dl round the clock, that is probably fine. But once your blood sugars start shooting up to 300s and beyond you are at risk. And when stuff turns south, it spirals out of control. And the worst thing is that if you don’t have insulin in your fridge and know how to use it, if you get a high blood sugar and you can’t see your doctor immediately, it is a trip to the ER.
I know this is all scary, getting your head around this. But approach the whole insulin things as a matter of defending your health. You need the insulin at the very least as a backup. If you can’t keep your blood sugar normal with your diet and exercise, you need to have the insulin on hand and know how to use it, or your health and possibly your life is at risk.
You bring up a good point, Lynne. Many people confuse slow onset with not so high numbers. When I was misdiagnosed type 2 my fasting was 325. I’d been feelng tired, losing weight, peeing too much for a few months by then. But even given that I attained and maintained good numbers for 15 months on oral meds.
I don’t think most LADA find that they have continuous ongoing dosing changes. Exogenous insulin can reduce the need for endogenous insulin, but it doesn’t shut down, for most it does act as a buffer.
Perhaps don’t view insulin injections as a penalty, but rather as tool to preserve your health & normalcy. Sorry to offer a harsh dose of reality that you’re not going to be the one in a million. From everything you’ve mentioned your insulin production is waning. If you took insulin that’s not needed (proof of the one in a million theory), you’d experience severe, dangeous lows, so there’s your test.
Yes, taking insulin will help preserve beta function.
With LADA, BG typically increases more slowly. But, if you get an infection, have an injury, or anything that causes BG to rise, there can be sudden higher numbers. BG will go back down when you’ve healed, but additional stress on your pancreas.
Regarding ketone strips, use them when BG is over 240. If the strip indicates ketones, drink a lot of water & test again.
You can wait until your BG is consistently high, but why would you want to? You’d most probably be started on basal insulin, which is one or two daily injections.
With a lot of hard work I do (very low carb and exercising before bed), the fasting blood sugar is usually the last to go from what I have read. I know I have no first phase insulin (no insulin left to cover meals) but I do have some second phase insulin left which helps with my fasting.
Dunno why it won’t let me post directly under but thanks for posting these questions as I am in the EXACT same position as you right now and that is EXACTLY what I want to know!!!
No I have not…no I do not like taking meds I’m already on 2 for my thyroid and I basically would just want to go on insulin when needed instead of having side effects from meds etc and then ending up on insulin anyways.
I did eat about 30g of carbs today for lunch at Ruby Tuesday: 2 salads from salad bar (guessing about 7 carbs each), dressing=4 carbs, salsa=2 carbs, 2 sides of broccoli=10 carbs, and a grilled chicken breast.
My blood sugar 2 hours later=227
I’m going to ask my doctor about meds if he thinks I am still not ready for insulin at my next appointment in March. I’m going to go in with my bg high and get another c-peptide.
Actually, I didn’t have continual dose changes. A tiny bit if tweaking at the very beginning. I think it only took about 3 minor tweaks to get me set. Are you working with a good CDE. He or she should be able to look at your logs of food, carbs and doses and give you some direction. I think it is easiest to figure out bolus first and after you have that solid, tweak the basal.
Saw my new endo today and she did not put me on insulin yet. She confirmed my 70.9 GAD guarantees I am type 1 and that I will need insulin one day in the near future. I brought her my daily fasting levels since I started recording them 2 months ago and she said based on these numbers I didn’t need insulin shots yet and I agree.
In some regards I feel fortunate to say my levels have been “good” since I started Metformin. With dedication to my exercise routine and modestly smart eating my fasting levels have remained in the prediabetic range. My post meals spikes aren’t that bad. I don’t ever have readings over 200 post meal and I almost never have readings over 126 fasting. She disagreed with the early insulin idea. I could have years of insulin left and there’s no way to tell.
As I’ve been doing she told me to keep monitoring my numbers closely. She agreed I’m likely to see a slow uptick in fasting to indicate my insulin is running out, if I’m fortunate enough to stay away from other illnesses and stresses that could cause it to go up immediately. I will keep a close eye on it. My previous prescription for test strips allowed me only 3 tests per day, she upped that to 6. When I start seeing continuous readings over 126 that will be my first warning. Of course, my A1C will also tell it’s own story.
I’m going to stay on top of this and be responsible with it because that’s how I am. I will beat it, it won’t beat me. Lately I’ve been able to eat almost anything I want and not have diabetic affects with either spikes nor fasting levels. I guess I might as well sensibly live it up while I still can.
Oh yeah… if anyone has evidence pointing to why Metformin is bad for type 1’s, please let me know. I’ve heard a little of this but can’t find anything backing it up. I’ve been on Metformin about a month now and it has done nothing but improve my situation thus far. Perhaps I am also insulin resistant and this is why I seem to benefit as I’ve read not all t-1s have.
Actually, if a person is antibody positive and meet the criteria for a diabetes diagnosis, the person has Type 1 autoimmune diabetes. Antibody testing (with diabetes diagnostic criteria) is a definitive test for Type 1.
Hi Mr. Coach: You are antibody positive and meet the diagnostic criteria, and you have Type 1 autoimmune diabetes. The correct treatment for Type 1 diabetes is exogenous insulin. The danger of not being on insulin is that you might get sick or get an infection and go into DKA very quickly, which would be tragic (and unnecessary and preventable). I know that using insulin is a scary thing, but in fact intensive insulin therapy as early as possible has been shown (definitively in reviewed scientific studies) to preserve remaining beta cells and prolong the “honeymoon” period. Even low doses of long-acting insulin constitute “intensive insulin therapy” in someone in the early stages of autoimmune beta cell destruction. What does using insulin mean, in terms of beta cell function? Easier to control blood sugars and reduced chance of complications. Check out my blog “Bill of Rights for People with Adult-Onset Type 1 Diabetes or “A Manifesto for the Misdiagnosed””. Best of luck to you.
Well, I rarely disagree with you Brian (bsc), but here I do, respectfully of course. According to the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus (as published in ADA journals), “Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta-cells does not occur.” Those antibody-positive “Type 2s” are misdiagnosed, and have Type 1 autoimmune diabetes according to the Expert Committee’s definition. And yes, some number (not really large) of people are antibody positive but not symptomatic and do not meet the diagnostic criteria: those people may go on to develop overt Type 1 diabetes at some point in their lives, but some do not (but again, they are not symptomatic and do not meet the diagnostic criteria). So if a person is antibody postive and meets the diagnostic criteria, it really is not subjective, quite simply the person has Type 1 autoimmune diabetes. [I won’t go into Type 2 or MODY, as these are incredibly complex, and not what Mr. Coach (the originator of the discussion) has.]
Lynne wrote:
I’m also a bit confused by someone saying they’re insulin resistant and LADA but have never tried insulin. Thus, how would you know or your endo? How would an endo know if you’re insulin resistant if you’re not on any meds.
I’m not talking about mrcoach, but insulin resistance in general. The usual signs of insulin resistance are high cholesterol, high triglycerides, high blood pressure and large waist circumference. You don’t need to be diabetic to be insulin resistant – look around you – there are lots of insulin-resistant people who just happen to have economy sized pancreases that keep churning out the stuff with no problem.They have no beta cell destruction, and happily live their lives until they die of something other than diabetes.
Then there is that percentage of people who present in DKA and are for all intents and purposes Type 1 but do not show antibodies. Type 1 may turn out to be more complex than we thought, too.
Lynne, an oral probably wouldn’t work. And some of them have ugly side effects. And some of them haven’t been in use for long enough to know whether they do awful things like increase strokes and heart attacks.
When the only orals available at the time (sulfonylureas) didn’t work for me, I ASKED for insulin, my doc concurred, and I have never looked back. Sure, I have wished the diabetes would go away, but I wouldn’t trade a safe treatment that has been used for almost a century for a flash in the pan, like the very new ones, nor for the GI upset that Metformin is known to cause.
Beware what you wish for – it might not be EXACTLY what you think it is.
First off, insulin is NOT a penalty!!! Don’t even THiNK that word! It’s a life-saver – it’s what keeps Type 1’s alive, and many a Type 2, too. And you’re already beyond the stage where the auto-immune reaction doesn’t cause diabetes, because you already have it.
In the beginning, when your own cells are still producing some insulin, control is easier, and you have time to learn the game. There is room for mistakes, because your own pancrease is helping, and I can’t emphasize what a luxury that is. Later on, even if you make a small mistake, you can go to the moon or to hell, because your own body is not helping.
There is some evidence that giving the beta cells a rest allows them to live longer, but I can’t quote you anything on that.
Last year, I was in a situation where my BGs were creeping up, and I wasn’t smart enough to know how much was too much – each of us is different, and I ended up in the hospital in a coma. If friends hadn’t found me when I didn’t show up for a picnic, I would have been dead by morning.
It sounds like insulin is scary to you, and I understand that, but better you should learn slowly at your own pace while you have the time, than end up in the hospital, which is decidedly unpleasant. If you’re a Type 1 diabetic, insulin is your BEST friend!!!
