Unusual causes of severely increased insulin needs?

Type 1 and LADA
1

The immediate issue: in the last two months, my BG average has climbed from 160 to 204 (standard dev consistent around 50). Clearly, I need to add more insulin, BUT I ALREADY HAVE! My average total daily dose has gone from 62 to 75, so up nearly 25%, and thats not doing nearly enough to combat whatever mystery change I'm dealing with.
I pulled out my copy of John Walsh's "Pumping Insulin" last weekend to see if some of ratios were just sorely out-of-whack, and I think every one of them I looked at I am using more insulin that would be standard for someone of my size and activity level.

I've gotten so fed up with being stuck so high that I started injecting the larger meal boluses, but even that didn't change much, so it doesn't seem to be a pump error or lousy infusion site.

I'm not sick.
I can't find an infection anywhere.
I've used three different vials of insulin over the last 2 months so if its a case of bad insulin, it would have to be pretty widespread because that covered two different shipments.
Insulin still comes out of the end of infusion sets when I pull them out, presumably that means its not a pump malfunction or just one bad site.
My CGM and multiple brands of glucometers generally agree with each other, so I don't think its a malfunction on the data end.
That leaves something internal, right? If I've generally ruled out all the known external variants, and assume the data I'm seeing is accurate.....

What can cause such a jump in resistance all of a sudden? What gives here????

In case it helps frame a response: I was dx'd at age 9, I've been on a pump for 10 years, I use humalog, I take 500mg of metformin twice a day, I recently discovered an allergy to the teflon infusion sets so I use the steel ones only now, I make all of my own adjustments to my ratios, settings, etc. My A1Cs are generally in the mid-high 7s, but my eye appt last week confirmed that the tiny little hemorrhage spots that had been monitored for years are now gone, implying something is working better now than it had been. I am overweight, but have had no changes in weight or activity in the last few months.

UPDATE: After 2 weeks of this, and finally getting mad enough to post about it, its over. I hit 50 in three separate instances yesterday, and was again at 50 this morning upon waking up. Its like all the insulin I was dumping in last week finally decided to do its job! No idea what or why, or when/if it will happen again, but at least for now I'm back to "normal" where I get to alternate highs with lows. Annoying, but at least this is the just the regular annoying that I'm much better at dealing with!

2

Just a thought, any new medications, supplements, over the counter meds, vitamins etc? Caffeine also raises my sugars, any increase in that for you? Hope it gets settled soon!

3

I do drink a lot of tea, I guess its worth trying some decaf or a different brand at least to see if that helps any? And new eye drops, but I just can't imagine that 2 drops a day could be enough to make such a mess.... I'll go do some research on both of those though, thanks for the suggestion!

4

"I was dx'd at age 9, I've been on a pump for 10 years, I use humalog, I take 500mg of metformin twice a day, I recently discovered an allergy to the teflon infusion sets so I use the steel ones only now, I make all of my own adjustments to my ratios, settings, etc. My A1Cs are generally in the mid-high 7s ..."

This could be describing me, except that I don't take metformin, I use Apidra, and I've only been on the pump for 7 years. Everything else, I'm identical. I take way more insulin now than I used to, but I think most of it is due to weight gain. If I work out my insulin versus my weight, the ratio comes out to something like 0.7, and I think it's only considered insulin resistance if it's over 1.0 or so.

Have you tried changing insulin brands? A few years ago I was having tons of highs that weren't coming down and switched from Humalog to Apidra. It didn't really solve my problem (turns out my problem was mostly an allergy to the infusion set cannulas), but it's a thought. Also, has your activity level changed, any more stress than usual? Both of these have huge impacts on my insulin needs.

5

I cannot say whats causing your insulin resistance, but my TDD was 30u for more than 20 years and now it's 80u. I have gained weight over the years and my activity level is much lower than 20 years ago. (My doctors say I still look good) I'm also allergic to steel infusion sets and my body starts rejecting them in just a few hours...the pump company's started making plastic sets in the late 80's for for this very reason. I also take some drugs with nasty side effects that cause high BG but I cant live without them. "1 Fact"...if I returned to my 30 year old body weight and activity level I would probably return to a much lower TDD, close to my younger years, but that is simply not going to happen.

Word of advice...if your happy with your BG control and weight...stop worrying about how much insulin it takes to get the results. I used to worry about my TDD but my doctors have said many times...just use whatever amount it takes to do a good job,that's the right amount of insulin.

6

How long have you been taking metformin, and was it started due to insulin resistance ? Maybe a higher dose would help.

7

Do you know the math formula to figure insulin versus weight? Would it be pounds or Kilos? I would be interested to know where I'm at! Thanks!

8

This is not really helpful, but sometimes it just happens and there is no explanation, or it is something you would never think of. My usual example is when the outside temperature changes, my blood glucose readings go up--cold to hot and hot to cold. Took me years to figure that one out.

Sometimes when I am running high numbers and can't seem to get them down, I program an larger dosage temp basal--I have done it for as little as a couple of hours and also for 24 hour periods. Somehow the increase of insulin in regulated bits works better than a big whopping correction bolus.

And can I just say that I feel your pain. Highs are just no darn fun and they take a lot of time to correct.

9

KK - I found this "rule of thumb" from a 2007 publication of Today's Hospitalist:

For patients who aren’t transitioning from IV insulin or who aren’t on an insulin regimen at home, many experts offer these rules of thumb for estimating total daily dose:

0.3 units/kg/day for patients who are lean, on hemodialysis, frail and elderly, insulin-sensitive, or at risk for hypoglycemia;
0.4 units/kg/day for a patient at normal weight;
0.5 units/kg/day for overweight patients; and
0.6 units/kg/day or more for patients who are obese, on high-dose steroids or insulin-resistant.

The article goes on to say that this is just a starting point and tends to underestimate a person's needs. My total daily dose confirms the "underestimate" characterization as I use 0.55 units of insulin per kilogram of body weight. My BMI is 24 and I consider my weight "normal." One kilogram = 2.205 pounds.

10

You mention that your weight in the short term has not changed. Has your weight gone up longer term? I only ask this since my experience over the last five years may offer some insight to your problem.

As I slowly gained weight (about 2 pounds/year for 10 years) my insulin needs also went up but my control deteriorated. My frustration peaked when correction doses seemed to have no effect on my BGs. Also during this time my A1c drifted up from 6.5% to 8.5%.

When I adopted a lower carb eating style (about 50-70 grams per day) in an effort to restore some semblance of control over my BGs, I unexpectedly lost weight. I only lost 23 pounds but that was about 13% of my body weight.

The good effect on my BGs was immediate and my insulin sensitivity returned. My total daily dose of insulin went from about 80 units/day down to 40 unit/day. My A1c dropped to the 5.9%-6.1% range.

One thing that I noticed about my history was that the insulin sensitivity seemed to hit a "breaking point" where it went from some control to little control very quickly. It's as if I hit a point of insulin resistance where I just fell off a cliff.

My experience may shed no light on what you're going through now but I offer it as a possibility. One thing you could try, as an immediate experiment, is to compare one of your usual meal's post-prandial BG trace to a low carb meal like bacon and eggs. Some people find when they consume low-carb meals, they have to add some insulin to cover protein and fat.

Good luck with finding your answer. I know how frustrating it can be. You've ruled out all the obvious big reasons like infection, bad insulin, bad infusion sites, and pump malfunction. You've made serious progress; don't stop until you find your answer!

11

I found the video ... "Diagnosis and Treatment of Vitamin D Seminar Vitamin D and Diabetes - Can We Prevent It?" Presented by Frank C. Garland, Ph.D., December 2, 2008 ... very interesting. It's posted here:

http://www.tudiabetes.org/video/vitamin-d-and-t1-diabetes-can

At the 37:53 mark he states "One thing about Type 1 diabetes is it can get worse and can get better and it can get worse and it can get better, and that's been somewhat ... for unknown reasons. (insert: gremlins!) Well, it may be that some of these barriers are fluctuating in terms of how effective they are as a barrier depending upon Vitamin D. And that's why we see seasonality in this particular disease."

Perhaps you are experiencing something similar?

If you have the time ... watch it, the video is long, but very interesting.

T1 Question
12

This is more detailed than the one I came across, I think in Type 1 Diabetes in Children, Adolescents, and Young Adults, which just said that anyone taking below 0.5 is honeymooning (or eating very low carb) and anyone taking above 1.0 is insulin resistant. All you do is take your weight in kg and divide it by your usual TDD.

13

Awesome! Thanks!

14

I swithced back to Humalog in the last 4 months, I used Novolog for a year (courtesy of my insurance re-arranging drug tiers on me) but didn't like it so much. I didn't have any solid or irrefutable reason for not liking it, I didn't feel like it worked as well so I eventually moved back to Humalog. I've considered but haven't tried Apidra yet, I use the T-slim so I'm hesitant to bother with it since there's been so many reports of problems, but at the same time, what i'm doing isn't so great, so maybe I'll see if I can just get 1 vial at my next appt and try it.

When I work out my new insulin to weight ratio, I'm at 1.1u/kg, which is about double what it worked out to a few years ago. I was also looking through a notebook the other day of with lists of questions to bring up at my dr appts, and on every single list (this goes back 4 years or so) I have 'increased insulin resistance', and while I know weight gain is a part of that, the math at least shows insulin resistance beyond just adding a few (or a bunch) of pounds.

15

Presumably you didn't gain 4times more weight, so your IR also went up beyond what straight math said it should....?

It never occurred to me that someone could be allergic to the steel sets, I guess that makes sense but I wouldn't have thought of it. I always just figured the change to the plastic ones is because they're more comfortable and easier to use!

No, I'm not happy with my weight, but at this point it is what it is and I've got other things to deal with. My numbers have been absolutely atrocious lately, I had more than a couple 24 hour periods on my CGM where I never made it below 180 and so that I'm also not happy with. While I will continue to add more and more insulin until I get back to reasonable BG-levels, I'd ultimately like to figure out what caused such a mess and fix THAT, but that might just be a pipe-dream.

16

The metformin was to help with post-meal spikes, and it did for a while, but you're right, it might be time for a higher dose too!