My endo who is a LADA consultant on research studies and has written numerous articles.I went to him in 2014 after I was diagnosed pre-diabetic with GAD antibodies, an A1C of 5.9 and fasting of 102. I eat moderate low carb 100-135 a day and on 1.8 mg. Victoza. My recent A1C was 5.5 and fasting 83- c-peptide a year ago 1.7. Endo considers me stable and not having overt Diabetes. Here is a recent newsletter outlining his philosophy against early insulin use. I don’t completely understand it so if anyone could explain it further please do 
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Firstly, I feel impelled to comment on your endo’s labeling of you as not having “overt” diabetes. If by that he means your control is good and you’re not having complications, then he should say that instead of confusing the issue by implying that you are not diabetic. There’s no such thing as a little bit pregnant and there’s no such thing as provisionally diabetic. Either the body can control its blood sugar without outside help, or it cannot. You’re controlling your lifestyle and taking medication to achieve that goal. You have diabetes. That said, you are in fact doing a great job managing it. Well done!
Secondly, and this is just a personal view, his argument strikes me as . . . well, just nuts. Forget diabetes for a moment and just consider a general scenario that could relate to solving any problem.
One has several solutions available, some more effective, some less. So the policy is to use the less effective ones for as long as possible, until things get so bad that there is no choice but to resort to the best one—which, had it been employed in the first place, might have solved the problem faster, sooner, and without all the frustration that halfway measures entailed.
Insulin is the most powerful tool in our arsenal, hands down no contest. That’s why the Joslin Diabetes Center (who obviously disagrees with your endo) frequently puts even Type 2 diabetics on insulin, at least temporarily, to reassert firm control.
I’ll agree up front that there is no specific evidence, but I just can’t help wondering whether your endo is one of those who is either so paranoid about malpractice claims that he will go to any length whatever to avoid even the possibility of hypoglycemia, or one of those who has succumbed to the doctor/god complex, i.e., “no patient knows what I know and no patient can be trusted to make their own management decisions.”
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Well, I can’t speak for your Endo’s reasoning overall, but it isn’t terribly dissimilar to that of my medical team. I also am antibody positive, diagnosed extremely early in the process, and am controlling through diet, exercise, and Metformin ER. The reasoning for not treating me immediately with insulin is very simple: it has greater side-effects (obviously) than Metformin ER, D&E, and it is expensive; why go with the more expensive and more dangerous treatment when a “Type 2 treatment plan” is working?
So, the idea is pretty simple (for me): use the lower-intensity, “safer,” treatment plan for as long as it works. And be willing to start using insulin as soon as my beta cells crap out. Is it the best plan? No idea, but it’s the plan my team and I came up with.
Like @David_dns, I disagree with not calling what you have “diabetes.” IF you have GAD antibodies and above-normal blood sugar indicators (whether that be random, post-prandial, fasting BGs or A1c), then you’re by definition Type 1 diabetic. Like me. Doesn’t matter if what you’re doing is “atypical” and controlling it well. You’re still Type 1, and going to stay that way.
I don’t know about the treat with insulin now vs. treat with insulin when necessary arguments. Which is more effective in the long run probably hasn’t been tested very thoroughly. While there are certainly good logical reasons to choose one or the other (and think the opposite treatment plan is sub-optimal), the truth is pretty simple: there are so few of us Type 1s with truly slow onset, that there aren’t enough numbers to say what treatment is most effective.
So far, online, you’re only the third other person I’ve met (out of thousands of diabetics) that can successfully manage BG as a Type 1 with diet and exercise. That makes four of us, and I’ve only even met one other Type 1 in person (adult-onset, but rapid like many people and diagnosed in DKA). I suspect that many of us (like myself) are actually diagnosed Type 2 and treated with D&E for years before we are rediagnosed and treated with insulin anyway.
But I’m speculating.
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Beg to differ. Type 1 diabetes, if that’s what it really, truly is, means that “in the long run” the beta cells will stop producing insulin at all, or as near as makes no difference. When that time comes, insulin is the only thing that will keep one alive. I can’t conceptualize a more definitive test than that.
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Right, but slow-onset Type 1 means that in the short run, insulin isn’t always immediately necessary to control BGs at desired levels. If you read in the scientific literature, the term “LADA” originally was used not for all adult-onset Type 1 (which sometimes it is now), but rather for Type 1s who didn’t need insulin at diagnosis. Several papers mention that the average time of treatment without insulin was between 6 months and 6 years after diagnosis. And this was a distinct, separate group from those adult Type 1s diagnosed during DKA, who obviously need immediate insulin treatment.
My point is pretty simple: Type 1 (not unlike Type 2), doesn’t always present or develop the same way. While obviously all Type 1s will eventually need exogenous insulin therapy, the verdict is out on whether those of us with significant endogenous insulin production would benefit from early insulin therapy intervention. My own medical team (in addition to my wife, notably) think that in my case it’s not warranted. I’m sort of the opinion that bolus insulin would make sense for me and help to preserve beta-cell function for longer. But that’s my opinion, not a result of scientific research or medical experience. And I’ve chosen to defer to the experience of my medical team.
*edit: As far as I can tell, the OP’s endo isn’t suggesting that Insulin therapy is unnecessary for LADA patients. The endo appears to be against immediate insulin therapy _when it isn’t necessary for control of BG to appropriate levels. I think this is why so many LADA are initially diagnosed Type 2 (like me): because our A1cs were low, we weren’t in DKA, we were adults, and orals and diet changes worked. When those cease to work, antibody tests are ordered, and the patient is reclassified as Type 1 (apparently 20% of all Type 1s are initially diagnosed as Type 2).
So, of course every Type 1 will have to be on insulin therapy. But for a certain (small) number of Type 1s, this might not be necessary immediately after diagnosis. Of course there is disagreement: there are endos who now believe that insulin therapy should be the first treatment course for all diabetics, including Type 2s. That is considered somewhat radical and unproven, but the point being there is a lot of variety in how endos and other medical professionals think diabetes should be treated.
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Oh sure. All quite true. But your actual comment addressed “Which is more effective in the long run” (sic), not the short run, and that’s what I was commenting on.
This ^^^^^ is a 5-star post.
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His reasoning makes sense, that artificial insulin substitution is imperfect and can be problematic and therefore why do it until there are no other effective options…
Makes perfect sense to me. With your condition as you described I do not think you’d find an endocrinologist (or any other doctor) who would put you on insulin-- IMO it would be reckless and Unjustifiable given your current health as you’ve described it. I’m sure I’ll catch a bunch of flack for saying that-- but if you can find a doctor who practices medicine otherwise I’ll eat my words…
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I agree with the comments others have made, but also wanted to say it appears his argument can be summarized as “Exogenous insulin is not perfect, so you should avoid it as long as possible.” It makes me relieved I was diagnosed so late in the LADA process that bolus insulin was immediately necessary. Regarding the risks he lists for exogenous insulin, I have experienced exactly one – hypoglycemia. I can deal with it and it doesn’t happen often because I’m aware of how to properly use exogenous insulin. I taught myself through books and with help from the amazing folks here on TuD. No one at my original doc’s office was very interested in actually teaching me anything.
Insulin is nothing to be afraid of if one approaches it properly, That being said, I’ve no doubt your endo sees many patients (probably the majority) who are not interested in putting in the necessary work and would rather have their doctor prescribe something easily taken once or twice a day as prescribed. I can understand how he may have reached his conclusion.
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Maybe, but TrialNEt also showed that, in some rare cases, some people may take decades to move from antibody positive to overt manifestations of diabetes. So if I was in that group that had tested positive with very borderline A1C (a 5.8 isn’t great, but neither is it a sign of absolute beta cell failure), I would certainly prefer starting with the least invasive treatment. By the way, a few early studies suggests that metformin is actually pretty good for Type 1s and may help with complications by promoting the growth of cells to repair damaged vasculature, so I really see no downside to starting there.
It just seems to me that blood sugar should be the guide. If you can control your blood sugar in normal ranges without exogenous insulin, as long as you’re not causing beta cells to burn out with overuse, that automatically seems much better. How would you even dose the insulin if bgs were basically in range all the time?
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I agree that metformin is helpful for T1. IMHOP, every PWD who can tolerate it should be using it, and especially women since it lowers the risk of certain cancers.
As for this . . .
Exactly. “In rare cases.” Very rare, as it happens. Those are certainly real, but you’re talking about the outliers on the bell curve, not the great bulk of patients. My comment was simply aimed at playing the percentages.
No harm, no foul.
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I was a slow-onset T1D. At diagnosis as an adult, I was put on insulin immediately. In a hypothetical scenario, knowing what I know now, if I were given the choice to proceed directly to insulin with a possible benefit to prolong my production of native or endogenous insulin, I would jump at that chance.
Now I know that there are no guarantees in life, especially when it comes to medical outcomes, but I think gaining even six months of significant natural insulin production, I think the normal insulin risk is well worth it. The doc may not want to take that risk but I would definitely pull “skin in the game” rank on him/her. I would even go to the trouble of changing doctors.
The insulin boost from Mother Nature is way better than any therapy I’ve adopted since, even the hybrid artificial pancreas system I use now. Trading away this possible benefit to make the doc feel more comfortable legally is not a trade I would willingly make.
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How rare?
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My thinking about early insulin use or not stems from the fact that my A1C is slowly increasing up from 5.1 when I initially went on Victoza 2 years ago to 5.4 in July. My doctor doesn’t push low carb but suggests a healthy carb diet in moderation. If I were to eat his diet my A1c would be much higher. When I told him I was eating 100-150 carbs a day he increased the Victoza to the max dose to keep me stabilized. The increase helped in that my A1C was 5.5 in October (three months later) with no other changes. Since then my reading average is still slowly increasing. I haven’t reduced my carbs to below 100 a day because of weight loss- I’m down to 103 and do not want to go to teen sizes and buy new clothes (take a zero petite now). According to my endo the next option, if my A1C continues to increase, is a referral to a rheumatologist to add another drug with off-label use. I’m worried about going that route since it’s likely an immunosuppressant, so I am weighing my options. The options I can see are:
- Trust what he is saying and continue as I am, hoping that my A1C doesn’t increase that much and my weight loss stabilizes like he suggests.
- Adopt his diet and when my A1C increases ask to go on mealtime insulin; although he will likely suggest another drug.
- Reduce my carbs and add fat in hope that I can maintain a normal A1C for as long as possible without losing more weight. Also, how long do I do this and at what point is it time to say it’s not working?
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Yes, but the cases where people last 5 years without needing insulin are actually not that rare. There was one case in TrialNet of identical twins who both were antibody positive and one finally developed t1D in her 60s, but yes, the average time to progression is, I believe, a couple of years.
Still, a few years of not taking a drug that you don’t need seems like a win.
And I guess I still don’t understand how you would dose insulin for a person who is in range? My son gets insulin according to a formula: if he’s above his target he gets some insulin, if he’s below target we turn off his insulin. She’s already in range, so insulin could only bring her lower – with a high risk of hypoglycemia. I agree that once she starts showing any out of range numbers, insulin is warranted.
Also, I love the idea that “giving beta cells a rest” can somehow prolong their action, but personally, I’m not sure how that would work with a person who is already controlling their BG well. The beta cells jump in immediately, well before the exogenous insulin kicks in. And as far as I can tell with my son, the beta cell response is not well-coordinated with the circulating insulin from exogenous sources. So it seems to me that they start firing whether or not you have external sources of insulin.
Now, if a person is experiencing actual high BGs, then yes, it makes sense to start exogenous insulin and prevent those high BGS from directly stunning/killing beta cells. That’s a sign they can’t keep up. But otherwise, I’m just not even sure how you’d do that.
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I’m in range (under 140) if I eat the following:
Breakfast 15
Lunch 30
Dinner 40
Snacks 15
I splurged last night and had 75 for Dinner and hit 216 1 hr 40 min and down to 160 2 hrs pp. So I definitely need to stick to my limits and hope my weight stabilizes.
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Yeah, if you are NOT controlling your numbers you should probably on insulin. Being low-carb to a level that you find restrictive seems worse than just taking insulin as needed.
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RE seeing a rheumatologist and adding an immunosupressant med: now there’s something I’d avoid. Sounds like you’re aware of the relatively high incidence of nasty side effects.
Don’t get me wrong: immunosuppressants are godsends for people who require them. But my advice is to avoid them if you can.
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That’s a very weird suggestion as no studies have shown more than a very modest equivocal benefit from immunosuppressants for those newly diagnosed. A few delay the onset for a year or two, somewhat, in small, small trials. So he is essentially advocating for an experimental and not-very-effective treatment for T1D rather than something that’s established?
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Perfectly reasonable; just, results can only be determined with certainty after the fact. I’d rather go with the percentages. Just a choice.
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