Sometimes with diabetes you do everything right. Then you get to a bunch of days when you are convinced you completely suck at diabetes management.

So you try to figure out where you went wrong.

You think, you analyse and then you think some more.

Sometimes the answer has absolutely nothing to do with what you did and everything to do with something you have little control over.

That’s what it was for me this week.

Before I went changing basals and insulin ratios and before I beat myself up too much, I thought I’d try a site change.

Whew! Much better! That’s what it was! Simply a site that wasn’t absorbing the insulin as well as other sites usually do. And I refuse to beat myself up over skewing my HbA1c results from a few days of highs because I wasn’t paying strict attention.

To think I could have changed lots of things only to have to change them back when I changed my site, not to mention the lows I might have had!

Sometimes you do have to consider all the possibilities, not just the obvious ones. And sometimes that doesn’t happen as fast as you’d like it to. And sometimes you simply don’t know why things aren’t right.

I’ve been really busy getting my house ready for sale. Wow, minimalist and me just don’t go together, but I had to do it to stage the house for the photographer today. Man, how do people live like this all the time? I’ve been in houses that look like a magazine photo and I have no idea how they do it.

So, lots of unusual activity and I thought I’d be going low, and yet I was dealing with highs. It got to tonight before I had time to think about why.

Diabetes is complex. You have to be a mathematician, a psychologist, a time-watcher and sometimes an analytical thinker… yeah and other things too! And you have to have the time to do all that. The more you know, the easier that becomes. But diabetes is not unmanageable. There are times when your management is perfect and times when it goes to hell in a hand basket for a myriad of reasons – not always because of something obvious, not always something you can figure out on-the-spot.

LADA – Latent Autoimmune Diabetes of Adulthood or Diabetes Type 1.5 or Late Onset Diabetes of Adulthood

All these names for the same thing? So far, yes!

LADA is diagnosed with a positive GAD (glutamic acid decarboxylase) Antibody test, and progression of the disease can be seen with a c-peptide test, the results of which continue to fall over time. Not enough testing is being done, not only for people who don’t fit a typical Type 2 profile, but for people who do fit, but are really not Type 2.

The average time to needing full replacement insulin is 6 years – but that’s just a number. No publication that I have seen, states any definite numbers for the outer limits – the shortest progression to insulin and the longest what they call “honeymoon”.¹

While at the time of writing, there’s no official diabetes classification of LADA – it’s just classed as Type 1, LADA and Type 1 are not the same thing.²

I believe my progression was way longer than the average 6 years – maybe 15-20 years or maybe more. I’ve seen a reported case of one man who had a honeymoon of 20 years, so I’m not alone.

While it should have been, going to insulin really was no clue for my endo because it had been some 30 years since I was first diagnosed. A Type 2 can progress to insulin (with a background of overproduction of insulin because of resistance progressing to ‘beta-cell burnout’) way before that, so no real alarm flags were raised with him.

See history.³

I was in the overweight category (BMI between 25-29.9) and believe me, whereas once the weight would fall off me when I uttered the word ‘diet’, by by 50s almost nothing I do other than major calorie restriction and fasting will shift the weight. Of course, taking insulin is weight-promoting, so that doesn’t help!

Apparently you get more insulin resistant as you get older, so even a few pounds overweight and an initial diagnosis of diabetes would look like Type 2.

So everything looked like I was Type 2, having been diagnosed years before. That was their first mistake – assuming. I already had another autoimmune disease (Lupus), and that’s another reason to get tested for LADA – autoimmune diseases often go hand-in-hand or run in families.

There’s a lot of information out there about LADA – not all of it correct. Literature pushes for testing of normal weight Type 2s and although that’s right, limiting the testing to healthy-eating, exercising, normal BMI Type 2s, makes the rest of us miss out!

The LADA testing criteria should be broadened, and the medical community should stop assuming only normal weight Type 2s could have LADA.

There are plenty of overweight  and even obese people misdiagnosed with Type 2. In some trials with mass testing of Type 2s, they found that around 20% of Type 2s are misdiagnosed.⁴ And although for some, LADA takes on some features of Type 2 and some genetic markers of both Type 1 and Type 2, (which is why LADA is sometimes called Type 1.5 ), it may not for all.

The problem with LADA is the slow onset to when the body produces little to no insulin. In Type 1, can be weeks or days usually with obvious DKA. In LADA it can be years, often making the disease look like Type 2. Type 2s can also have a progressive failure of pancreatic beta-cell function against a background of insulin resistance.

Why is diagnosis important? Because it’s thought that early intervention with insulin may preserve precious beta-cells and therefore the body’s own insulin production. Taking drugs that promote insulin production in your beta-cells is surely counter-productive! There’s only one study I know of that came to this conclusion. Another study concluded it didn’t matter. Which one to believe? I’d rather err on the side of caution until they know for sure.

Beta-cell preservation is important on many levels, not the least of which is that when the body produces its own insulin, it produces other assisting chemicals including c-peptide – it’s so much better for so many reasons.⁵

There’s another, equally important, reason in my opinion – a psychological one.

At one time, I was accused of not following diet and medication advice. I was! They weren’t working for a reason! I’m pretty bold and figuratively stuck my middle finger up at the person who accused me, but how many others slink away, guilt ridden, and have no idea why a dutifully followed regime isn’t working for them? Must always be their fault, right? Wrong!

More importantly, the longer your body is exposed to higher blood glucose, the more possibility for long-term damage. I got to the point where I didn’t care because whatever I was doing, wasn’t working as well as it should have. That’s not a good place to be. It’s like diabetes burnout – something that happens to many for other reasons!

I have to tell you that an enormous weight was lifted from my shoulders once I had the right diagnosis!

At what appears to be an early stage of LADA being known (it was discovered in the 1970s⁶), I’m hearing that many medical people still don’t know what it is!

If you have been diagnosed as Type 2 and have progressed quickly to needing insulin or if the oral medication you take doesn’t work the way it is supposed to, then it’s a good enough reason to push for testing, WHATEVER weight you are.

But you need to be brutally honest with yourself. Is the medication not working because you’re not following a healthy lifestyle – eg lower carbs and exercise? Is it not working because you’re really not following the plan all the time? Have you not educated yourself enough to understand the relationship between what you eat and your blood glucose? Or do you have a genuine reason to suspect you may have LADA and increases in medication isn’t having expected effects?

You still may not have LADA, but if you suspect you do, I encourage you to push for GAD antibody and c-peptide testing (along with testing of other diabetes antibodies, often done at the same time). If your doctor won’t order the test, find one who will, and give them convincing arguments! Do the research and go armed!

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FOOTNOTES

I’m not one of those people who can jump out of bed and eat breakfast. In fact, I’m lucky if I’m feeling hungry even 2 or 3 hours later. I would gag if I had to eat before my brain was in gear.

Morning basal tests are never a problem. In reality most mornings are basal tests for me. And I know for sure that my basal is exactly right.

Note: Basal is the insulin I get 24 hours a day – the background insulin that is needed all the time, without food. If you do not have diabetes, specifically Type 1, your pancreas does this for you automagically. The most important reason is that your brain needs glucose to function. If your blood glucose is low this is one of the reasons you end up in a kind of brain-fog, unable to function.

Back to breakfast. Often, however, I don’t eat anything at all for many hours after I wake up. Yeah, that’s supposed to be bad for you. Breakfast is the most important meal of the day, they say.

If I end up having a reasonable breakfast within a few hours of waking, then I can forget about lunch. I’m just not hungry.

So why am I carrying around all this extra weight? No idea! Most of the time I do reasonably low-carb. All that falls over in the evening. Doesn’t matter what I do during the day – eat, not eat, snack, have big meals, the evening is the deal-breaker.

If I ever had to do lots of little meals a day (they say that’s better for metabolism), I know I couldn’t cope.

Unlike breakfast, in the evenings, I can eat when I’m not even remotely hungry. It’s a real struggle to tell myself I don’t need that snack and I’m not hungry. My brain tells me I am. Maybe it’s something to do with leptin not functioning at that time of night? I don’t know. Sometimes I’m successful at resistance and sometimes I’m not. (Yes, resistance is futile!) Even so, everything’s easier with an insulin pump. I can bolus in the middle of an extended bolus with anything I add to dinner, like desserts or snacks, or even more dinner. It’s so easy!

I think it’s the evening snacking that is playing havoc with my weight, but even if I don’t have them, I’m not losing a single ounce. It’s sooooo annoying! I think having a desk job doesn’t help either. And truly, I hate planned exercise, but I know I have to do it. I just keep putting it off. Lupus and arthritic pain doesn’t help. Any exercise I could actually do, probably wouldn’t make any difference. It never has before.

Exercise doesn’t really burn off calories… well I guess it does when you do enough of it. Figure out how much exercise you’d have to do to burn off a Big Mac! I don’t think anyone has THAT much time on their hands, let alone the effort-value. Exercise helps your cortisol levels, which in turn helps a whole bunch of things in your body. That should be the primary reason to do exercise, not the calorie-burning part of it but the cortisol part.

One time I always lose weight. When I have to move house! Something to do with skipping tons of meals, not snacking and moving bits of me a great deal (like 12 hours at a time) while packing boxes. If only I could do that every day! Moving house is coming up for me in the next few months. Something to look forward to in terms of weight loss!