Got questions about navigating life with diabetes? Ask D’Mine! Our weekly advice column, that is — hosted by veteran type 1, 
diabetes author and educator Wil Dubois.
This week, Wil offers some thoughts on that universal question: “How long can I really go without insulin?” Please take a read; his findings might surprise you and even bust a myth or two.
But as a precautionary reminder: this topic would fall into the category of “Don’t try this at home”!
{Got your own questions? Email us at AskDMine@diabetesmine.com}
Jake, type 1 from Minneapolis, writes: I’ve had diabetes for 18 years and I had someone ask me a question the other day that I didn’t really have an answer to. The question was how long I would be able to survive without any insulin. I told them 3-4 days, but I don’t know if this is true. Any info from a cinnamon whiskey swizzling T1?
Wil@Ask D’Mine answers: If Tom Hanks’ character in Castaway had been one of us, he would’ve never lived long enough to go half-crazy and end up talking to a volleyball named Wilson.
OK, so that’s a mixed blessing. But I guess the lesson there is: don’t get washed up on a deserted island if you can avoid it.
To be honest, like you, I had always pegged my zero-insulin survival time in the “couple of days” zone; but once I got to thinking about your question I realized that I didn’t know how I knew that, where I learned it, or if it was even correct at all.
So I set out to do some fact-checking.
Now, as background for you sugar-normals, type 2s, and type 3s—in type 1s like Jake and me, if we run out of insulin hyperglycemia sets in. That leads to diabetic ketoacidosis (known as DKA by its friends), which then (untreated) leads to death.
This is old news. But how fast is the process, really?
Well, there are a number of variables, the most critical being: Are you really out of insulin, or just low on insulin? Some type 1s use basal insulin, which has some effect for a full day or more after the last shot. Others of us PWDs use pumps, and the insulin from the pump only lasts for four hours. The bottom line here is that if two type 1s were captured by terrorists (hey, it could happen!), and if the terrorists took away their insulin, the guy on the pump dies before the guy on shots.
Generally, the first signs of DKA show up once one of us T1s has been north of 300 mg/dL and out of insulin for four hours; but how quickly things get out of hand at that point is highly variable. For some of us the shit hits the fan quite quickly. Others can wander around in a daze for days. I think the two largest driving factors are the carb and insulin loads. If you have even some insulin in your bod, it can hold DKA off even when you are high. Also, if you keep it Atkins-style when you are high, you’re not adding fuel to the fire; while if you gobble down pecan pie a la mode when high, it only makes matters worse.
But those variables aside, let’s cut to the chase. Let’s assume the insulin is gone: zero, zip, nada. Insulin has left the building. Regardless of the carbs that caused it, let’s assume the smoky fires of DKA have started. The clock is ticking. Without help, your doom is only a matter of time. So how much time, exactly?
There’s no end of info on the pathophysiology and pathogenesis of DKA. I found 1,590,000 links to articles on the condition on Google. All of them say that, left untreated, DKA is fatal. But none of them says how fast death comes. I know, because I read all 1,590,000 articles myself, and am now out of cinnamon whiskey. And there’s no end of speculation on the subject in the online community, but can we find any facts?
Looking at historical records from doctors Joslin and Allen before the advent of medical insulin, we see that they were generally able to keep patients alive for months, sometimes more than a year, by starving them to death. Literally. Joslin proudly wrote that,“Whereas formerly the prognosis for children less than ten years of age was measured in months, today it is rare for a child to live for less than one year.” But, of course we now know that the onset of type 1 is a messy affair. The autoimmune process that drives it isn’t an overnight process. Insulin production lingers for many months. Ultimately, all of Joslin’s pre-insulin patients died. 100% of them. I suspect that the ones who didn’t starve succumbed once their insulin production dropped to zero.
So, I don’t think we can really look to history to answer our question. History can only show us how long we can suffer starved in the honeymoon phase of the disease; not how long a full-fledged type 1 will last sans insulin.
Next, it occurred to me that most cases of DKA in our country, even the 2,400 fatal ones each year, receive some sort of medical intervention. And what we need is deserted-island DKA data. I thought to look to the Third World for some info, as type 1 outcomes are pretty grim there. Did you know that lack of insulin is the leading cause of death of children with type 1 in Africa? But, alas, while I was able to find cinnamon whiskey-inspiring life-span statistics, I was unable to get any hard data on how many hours/days/weeks/or months Third World type 1s last without insulin.
So in the end, I reached out to one of the smartest endo’s I know, Dr. Silvio Inzucchi, who runs the Yale Diabetes Center (and who, ironically, got his MD at arch-rival Harvard). Dr. Inzucchi admitted this is a tougher question than it appears on the surface. He pointed out that many type 1s can have some “residual beta-cell capacity” even “years” after diagnosis. He tells me that how fast DKA advances also depends on how well you keep yourself hydrated, and how many carbs are feeding the highs. But, quoting the good doctor: “I will see that in someone with 0% insulin production, they’ll begin to fall ill within 12-24 hours after last insulin injection, depending on its duration of effect. Within 24-48 hours they’ll be in DKA. Beyond that, mortal outcomes would likely occur within days to perhaps a week or two. But I could not see someone surviving much longer than that.”
Of course, he helpfully points out that “if they made some insulin, the course could be protracted to weeks or months,” giving me flashbacks of Joslin and Allen and starving children.
So, Jake, I see you just got your 18-year pin as a member of our club. I wouldn’t put much money on you having any insulin production left. No insulin buys you DKA within a day, two at the most. Then Dr. Inzucchi predicts “mortal outcomes,” possibly within days. Two weeks at the outside.
Huh. Sounds like a two-week notice we should both avoid giving.
Disclaimer: This is not a medical advice column. We are PWDs freely and openly sharing the wisdom of our collected experiences — our been-there-done-that knowledge from the trenches. But we are not MDs, RNs, NPs, PAs, CDEs, or partridges in pear trees. Bottom line: we are only a small part of your total prescription. You still need the professional advice, treatment, and care of a licensed medical professional.
Elizabeth Hughes was dx’ed in 1919 and survived until 1922, when she started taking insulin when it became available. 400 calories/ day is less than the diet recommended for inmates in Nazi concentration camps although obviously in those sort of horrible conditions, the availability of food may have been restricted for sinister purposes by those evil people..
I seem to always read about DKA (BS over 300) with the potential for quick death. Yet weren’t we type 1s walking around with blood sugars in the high hundreds or over 1,000 for days, weeks or months before diagnosis? Mine was 750 when I was diagnosed, yet it must have been high for months as I had symptoms for a few months before diagnosed.
But you were likely honeymooning and still had some insulin being produced by your own beta cells. This, as pointed out above, would offset the likelihood of going into DKA right away.
I’m not quite sure I agree that insulin production is certain to drop to absolute-zero by year 18. Some recent research by Dr. Faustman suggests that minute amounts of insulin production can last in some patients 30 years after diagnosis. A recent blog post by a Joslin 50-year-medalist (for what blog posts are worth, http://almo0157.blogspot.com/2013/03/the-joslin-medalist-study.html) also suggests that production can continue.
In my almost-32 years since diagnosis, I’ve never been in DKA and my BG seems to max-out in the 400s, no matter what (not that I’ve really tried to push the limits that far, but I’ve made some counting and bolusing mistakes in my time, none pushed me to the 500s). Unscientific, yes, but I think I’ve got a tiny bit of natural insulin production left. The beta-cell destroyers are half a step behind the beta-cell creators.
Is this a reason to think I’m immune to DKA? Absolutely not. And I’m scared at the thought of disconnecting my pump for over an hour for that very reason. But PWD’s bodies vary a lot, and this is just another example of YDMV.
Yes, thanks Kari, my best guess too but wasn’t sure how even if you still have some insulin production, if your blood sugar is that high how you wouldn’t DKA
When the blood sugar is very high it knocks out the ability of beta cells to produce insulin. There’s why T2DMs also come down with DKA. Also why there is thinking for T2DM to get BG down and keep them down to perserve the functioning of the beta cells.
So does that mean, given your type of insulin and what you’ve had to drink or eat, you’d be sick in less than a day, in a coma by 2 days at the most, and could linger for up to a couple of weeks? I mean does being in DKA mean you are in a coma? How long in DKA before you are unconcious or incapacitated?
Both informative and scary. At least I’ll have an answer when this question comes up again. I thought I’d have months, assuming I ate carefully and kept as active as possible.
I would not try to see how long you could last.
This is why I have given my spouse permission to eat me when I during in case of a zombie (or any other sort) apocalypse. He will survive with the skills, health and fortitude he has. Me – not so much; I’d be DKA DOA.
This is fascinating, Will! I have always wondered this and people often ask me, and my guess has been a few days….but boy, either way, those are going to be a very rough few days! Yuck!
Thanks for digging into this and sharing it with humor!
(Cinnamon whiskey, sounds good!)
Interesting…. With all the talk about apocalypse, (zombie, 2012, etc.) I told my son to just leave me as I wouldn’t last long anyway after my supply of insulin dried up. Of course he was horrified but understood. Of course I wasn’t 100% sure how long I would last, but why should food be wasted on me if I was going to die for sure anyway.
Just something of the strange things that go through my mind…
With the physiological change that occurs to the system when one contracts the Z-virus, how would that affect the timing of the onset of DKA and the expected lifespan of said Z-PWD.
This is a great article – not only because it goes out to answer the question none of us want to ask – but because it has introduced me to cinnamon whiskey! Thank you Wil!
Two weeks is the time quoted by those who work with developing countries where insulin is unaffordable for many, and where donations of insulin and diabetes supplies go. And they are horrible weeks, especially in remote parts where there is barely any medical care and little diabetes education. Of course, cheap carb loads are often higher in those places, but once in advanced DKA, you’re often too sick to be eating much anyway. There is data around to substantiate.
There’s a book called “One Second After” I read a couple years ago about what happens after an electromagnetic pulse attack. The main character’s daughter is a type 1 and survives but eventually her insulin goes bad – took months in the book. I was always told when I was dx’d that I was in DKA for 2 weeks. So I guess it was close…
The problem of maintaining good glucose control is most difficult for teens who want peer group acceptance and fear that overt control of their diabetes will lead to being labeled a nerd. This concept is currently being studied by the Yale School of Nursing and is why Outward Bound, the leader in experiential wilderness travel has just announced the Outward Bound Diabetes Challenge for insulin-dependent teenagers. it is a program that challenges participant’s stamina and resourcefulness and teaches glucose management strategies in a wilderness environment. It’s an eight day, seven night adventure at the Alabama Outward Bound School, led by Patrick Mertes, a certified Wilderness First Responder and a Type 1 diabetic. It is a modestly priced program intended to teach glucose control in a challenging, wilderness environment, and educate participants on how to bring this learning — about themselves and their disease — back to their everyday school and family environments. By completing this challenge with other diabetics, participants have an opportunity to share glucose management strategies and successes, and more openly discuss their condition and how it affects their lives. It’s learning that will be valuable for a lifetime. For more information http://www.alabamaoutwardbound.org/diabeteschallenge or call 251-990-0323 ext 2432