CGMs for non-Type 1 diabetics

In another forum I frequent (https://www.reddit.com/r/diabetes/), a question was raised about Type 2s or other non-Type 1 diabetics using CGMs. Would they like to, could they afford it, does insurance help out, etc. I’ve seen on these forums some references to Type 2s on pumps using CGMs, but thought I’d bring it up here as well.

Any “non-standard” CGM users? Anyone (besides myself) who would use a CGM if their insurance would cover all or part of the cost? I’m not on insulin, but I’d personally very much like to have a finer detailed picture of the way my blood glucose responds to daily life, exercise, and diet.

1 Like

I am a type 2 and have a CGM. I got a CGM for two primary reasons. First, my endo kept pressuring me that I must be having bad hypos (overnight) and I could not find them simply testing with a meter. And second, I heard a lecture and got the book by Stephen Ponder on Sugar Surfing and wanted to try more advanced intensification of my insulin regime. My endo has for several years been “coding” me as a T1 even though I remind her that I didn’t test positive for antibodies (even though my C-peptide is low). Since she coded me as T1 my CGM was approved with no issue.

A couple of months ago I had a discussion with Dr. Steven Edelman who does the TCOYD conferences. He told me that his position is that the standard of care should be that any patient using insulin therapy should have a CGM. As always I think a key question with something like a CGM or testing 10 times a day is “what would you do with that information?” If you actually act on that information then I think there is a reasonable argument that it is worth it.

1 Like

I’m still looking for a proper diagnosis for my own “type,” and I was told to ask my doctor about “idiopathic diabetes,” or Type 1b. It is characterized by low insulin production without positive antibody tests. I am not insulin-dependent, although my doctor thinks I soon will be. I have very low insulin production, and just got antibody tests back (negative for GAD and ICA).

While my current low-carb, exercise, and metformin management plan is “working,” in the sense that I don’t have uncontrolled hyperglycemia, I am having some other issues (including lows while exercising). Seems MODY or 1b could be what is going on with me.

Hi @David49 I’m a Type 2 diabetic - I use insulin and began using a Dexcom G5 CGM in June. I find it most helpful for: identifying how my blood sugar is trending, how long it takes insulin to kick in before I eat and how fast my BG drops with exercise. With the help of the CGM, my A1c dropped from 7.0 in April to 6.4 in September. I can see how it might help someone who doesn’t use insulin by identifying trends, by showing you how your blood sugar acts during the night, and how long it takes for exercise to begin to lower your blood sugar. I think it’s a very good tool. JMHO

2 Likes

I would get one in a heartbeat were it not for the fact that it would have to be 100% out of pocket. And I may have lucked on to a partial solution to that. [fingers crossed]

I’m a T2 and just got my G5 the other week. I wanted one because I felt like I was flying blind taking multiple injections a day and the finger pricks weren’t give me enough information. I had a few uses in mind for it:

  • Get my nighttime basal right, as I am spiking to 200 by 7am and was reluctant to bump my basal up without low-alerts.
  • Use it to time my pre-bolus better and manage spikes.
  • Watch for lows while exercising, which I have a problem with.

Since I’m a T2, I had to fight like hell for it and actually none of the above reasons earned me the prescription. Instead it’s only because I travel regularly for work, spending 12 hour days with irregular access to food and privacy for testing, that my endo felt it was worthwhile.

I am paying for it out of pocket, which comes out to $4,800 the first year, and $3,600 aftewards (assuming that I only use a sensor for 7 days).

1 Like

Oooh… @David_dns care to share?

I’m type 1 but have such high insurance deductibles that I cannot afford a CGM (they wanted almost $1900 upfront for the starter kit and then $350 monthly for the Dexcom G4/G5).

At this point I’m considering ordering a FreeStyle Libre of Ebay.

It’s not a general answer, just a specific set of circumstances that I happened to luck into. I am constrained from giving details, unfortunately. :disappointed:

This is actually the argument my endo makes. Diagnosis is frankly just whacked. What is ideopathic T1? What is T1? Low insulin production? That happens in T2. T2 diabetes of unknown cause. So isn’t ideopathic T1 just T2. Diagnosis is just whacked.

3 Likes

It’s definitely complicated! I think the reason why they treat “idiopathic” or T1b as different from Type 2 is because of the differences in insulin sensitivity. I was initially diagnosed as Type 2 based on age (40 at diagnosis, moderate hyperglycemia), but I don’t respond to Metformin (although I’m still taking ungodly amounts of the stuff). I have responded to reduction in carbohydrate intake, and exercise also lowers my BG (sometimes too effectively).

So, to my understanding, they don’t think I’m Type 2 because I don’t appear to have much or any insulin resistance. Rather, I’m capped in terms of how much insulin I produce, and I have some sort of attenuated insulin response to consuming food. My C-peptide, fasting insulin, and tolerance tests would indicate Type 1 (in honeymoon), but I have no antibodies. Thus, because of my family history (85% of my mother’s kin are diabetic of some sort, mostly of the same sort of middle aged slow onset of insulin-dependent diabetes), the doctors think it is likely 1b, MODY, or MIDD (maternally inherited diabetes and deafness, a mitochondrial genetic disorder).

In all reality, it doesn’t actually matter that much right now! My treatment plan hasn’t changed, except I’m under very specific instructions to monitor my BG and be aware of signs of DKA (because of low insulin). If my fasting BG or postprandial response changes while maintaining my exercise and diet regime (I’m eating about 50g of carbs a day), then it’s off to get insulin. We haven’t done the genetic testing to confirm any of the three possibilities because, frankly, I can’t afford it and it doesn’t seem necessary. Everyone in my family already has diabetes, so it probably won’t help them :slight_smile: It might be useful in figuring out what my son’s risk is, but I figure we’ll have to watch him close regardless.

1 Like

A couple of comments.

First, while metformin has some beneficial effect on insulin sensitivity, that is not its primary benefit. The principal action of metformin is to suppress unwanted release of glucose by the liver. The improvement in sensitivity is more of a side effect and it varies greatly, from significant in some individuals to barely noticeable in others.

Second, and as mentioned, T2 is a diagnosis of exclusion. As such it covers a number of different behaviors under one general umbrella. While many T2s exhibit moderate to severe insulin resistance, many don’t. I’ve been T2 for more than 20 years and I have almost no IR at all.

But as you say, the fuzzy diagnosis doesn’t really change what you have to do. Sorry you’re having to deal with the diagnostic confusion on top of the physical issues.

Yeah, I’m with you on all of that! I think the biggest advantage of metformin for me, at the moment, is that it does seem to help with dampening DP to an extent, and it supposedly has some heart-protective effects. Since I can’t think of any serious side-effects, I’ll keep taking it until I’m told not to by a doctor.

I’m a biologist, myself, and when I think of diabetes from a scientific perspective, I think of the 60 or so known gene mutations and variants that are responsible individually or together for various diagnoses ranging from Type 1 to MIDD. When I think of it in personal terms, I think of myself as a “non-insulin dependent diabetic without a known etiology.” The important bit there, for me, is that I can control it sans insulin, for now, and that I’m able to successfully manage it in order to minimize complications. The only irritating thing to me about not being diagnosed to type is that I feel it might help with knowing what the future holds. Many Type 2s with good control don’t progress to insulin-dependence. Type 1s (of either sub-type or LADA) invariably progress to insulin-dependence. MODY is up in the air, and MIDD is so damn weird and rare that I have no idea (apparently it’s a Type 2 grab bag: some insulin dependent, some not, some intermittently).

So, as my wife says, my irritation at not knowing my “official diagnosis with certainty” is really a control issue :slight_smile: I hate not knowing things! That’s why I got a PhD, and it’s infuriating that it didn’t help; I still don’t know ■■■■. What I do know is that with low-carb eating, Metformin, and exercise, I can maintain a really flat BG in my preferred region of the “normal” BG spectrum. That means, until something changes, I’m in very low-risk for developing complications. That’s really important to me, with a beautiful wife and an 8 week old son!

1 Like

I hear all of that, all right. Both the frustration of not having answers and the gratification of being able to maintain good control.

As for the metformin, it makes perfect sense that it would help with the DP, given what it does. So that’s one puzzle piece that fits perfectly. Also, there is increasing evidence that it lowers the risk of certain cancers. Nice side effect, that.

1 Like

I’m in a somewhat similar situation as you, @David49, though different, as well. When I was diagnosed, I was trim and active with a reasonably healthy diet. I had maintained weight/diet/activity level for close to a decade prior to Dx. I was also asymptomatic at the time. My doctor “didn’t believe” I could be diabetic, but, due to age, diagnosed me as “Type 2.” Metformin had only minor affect on my BG (mostly reducing FBG by a little), so I was quickly put on one, then two additional medications. ALL of the orals had “some” affect, but also caused some unusual and intolerable side effects, so by the fourth month after Dx, I was taken off all T2 medication and put on insulin - and referred to an endocrinologist. C-peptide, insulin and anti-GAD65 were tested, though postprandial, rather than fasting. C-peptide and insulin were “normal” (for fasting), but the antibodies test was negative. With those results, the endo confirmed “Type 2” and proceeded to help me titrate insulin dosing. Only GAD antibodies were tested.

Problem is that over time, my c-peptide was re-tested several times (as was insulin) – these times, fasting. Each time, c-peptide tested lower than ever before, and always well below the “normal” reference range. Throughout all this time, I managed to achieve and maintain reasonably tight glucose control, with A1c’s in the 4.9-5.6 range (mostly on the low end of that range). Diet and exercise have helped me, but, in my case, not enough without taking insulin as well.

LAst month, after the most recent c-peptide came in at 0.2, (and perhaps, together with a low CRP, showing none of the anticipated inflammation of T2?), my endo declared me to be “Type 1”.

To be honest, I don’t know what to really think. Does it make a difference for me? I don’t know. I’m already taking full basal/bolus insulin. I have very little insulin resistance, taking a total daily dose of around 41U. Already use a pump and CGM. I take no other medications for any condition. I have made some additional diet and exercise changes over the course of the last several years – all of which are healthy habits for anyone, diabetic or not, so clearly beneficial. Insurance might be “happier” or easier to work with with a Type 1 diagnosis, but otherwise, what does it change for me?

There was a British study published last month that indicated that the incidence of Type 1 remains consistent at any age, and that 20% of people with Type 1 present without testing positive for any of the known “Type 1 antibodies.” They used some kind of genetic markers for identification, I believe. They concluded that neither age, nor anti-GAD65 testing is sufficient to identify Type 1 vs. Type 2, though, as they found no incidence of negative consequences of misdiagnosis as Type 2 (people who needed it, were 100% likely to be on insulin), I don’t believe there were any immediate action points from the study.

You, me, @David_dns, maybe @Brian_BSC and several others – we need our own special designation. I usually call myself “Type Weird” - fits my personality, at least, and maybe my condition as well! :smiley:

2 Likes

That certainly sounds familiar! Honestly, at this point, I’m not terribly worried about it. I am successfully managing my BG through diet and exercise, metformin helps a bit with controlling my mild DP, and my a1c is running really well. The only problem I see is not being able to maintain a low-carb diet for the long-run. I know some people love it and thrive on it, but frankly I feel run-down all the time and can’t stand missing out on all the “healthy carbs” I’m used to eating.

So, if I decide for whatever reason I have to eat “moderate carb,” or my BG starts rising while maintaining my current regimen, I’m off to see the wonderful Endo of oz. Otherwise, I’ll keep on truckin. You’re right about needing some more designations, though. It doesn’t make sense to just toss everyone into one of two categories (1 or 2) when it is clear that those categories don’t capture the diversity of conditions that come along with a diagnosis of diabetes mellitus. h

And Type Weird would fit me pretty well as well! My wife this morning commented: “You just have to be different, don’t you?” :slight_smile: