CGM for Severe Lows

Diabetes Technology Glucose Monitoring
1

I have a lot of really, really bad lows. I have seizures a few times a week, and the paramedics and I are on a first name basis (I’ve seen them 25 times in less than a year, and I live alone, so those are times when I’m out in public and get low). This happens because I give myself too much insulin. I just do; I know, I need to stop, but, until I do, I keep having severe lows.

I called my insurance company, and they said they might cover a CGM for me. First, they need me to tell them which one I want. So, I’m asking you guys, is there a CGM that’s really, really good with alerting for lows? I have a 5 year old MM pump, but don’t currently use it. My doctor won’t let me get a new one until I get my a1c above 5.5, so I don’t need to worry about pump/cgm communication.

But, please, if you have any experience with CGM and lows, let me know. Is there any that really helps or are they about the same? Thanks, guys!

2

Love the Dexcom 7+. Got it 6 weeks ago. My control is definitely way better. I don’t know about severe lows. I haven’t seen a paramedic in the last 20 years. Before I got the dex my a1c was the holy grail. I bought myself a low a1c by appreciating lows. Now I learned about the importance of variability. My new holy grail is the time spent inside the target glucose range. The dex measures the %time spent in the target glucose range and also the variability. My incentive of protecting my a1c by averaging out values that are too high with values that are too low is gone. Now outside the target glucose range is bad, whether the value is too high or too low. The new goal of trying to be in the target glucose range brought the variability down automatically. I bet that I am doing way better just by letting go of the fixation on the a1c.

3

Anna, you need to reduce the amount of insulin you are taking. I KNOW it is hard to see numbers that are higher but NO CGM is going to keep you safe if you are giving yourself too much insulin.

Every CGM on the market has between a 5 and 20 minute lag time. Yes, they will warn you of an impending low, but You should NOT be betting your life on one.

Our last 2 a1c’s were 5.5 and 6.0. We use the dexcom and havn’t ever called the paramedics, but I don’t want you to think that a CGM will help you if you are giving yourself insulin in amounts , that you know will cause a problem if you don’t remember to snack when your insulin is peaking.

I would strongly recommend the dexcom for a CGM,
BUT I want you to know that My aunt died in Feb. from a low. It was an accident, and tore our family apart. Your liver will not always save you. Finding a balance is going to be the most important thing you can do. You can go into a coma and it can kill you. Her BG was 5 when they tested at the hospital, they didn’t test until then because the paramedics didn’t know and they though it was a stroke.

Seek counseling if having a high BG is causing you stress, We all want to live complication free, and I get that how you view yourself is tied to how your control is, but there is not a CGM on the planet that can save you all the time.

I may get flamed for being so blunt, but I want you alive in a year, put your safety first, Use a CGM wisely and Don’t stack your insulin any more.

Multiple seizures every week, is never, ever safe. With the CGM we see numbers in the 60’s maybe 1 or 2 times a week for just a few minutes as we wait treatment, but we also know that it is better to have a 150 than a 30 or worse.
Please take care of yourself, CGM or not. I know you don’t want the lecture and I am sure you have heard it before, but I don’t want you to die. Insulin is never a matter to take lightly. period.

4

Thanks. That was incredibly helpful. Because, you know, now I feel even worse about myself, and you know what I do when I feel worse? I give myself more insulin. So, go ahead and feel good about yourself for telling me what I should do.

5

Anna,
I am using the Dexcom 7+ and it has woken up both myself and my wife at night in the midst of lows.

Have you talked to your doctor about this? Has he recommended you do something? If not, you should try talking to another doctor about it.

We want you posting, participating and bringing that A1c up (I never thought I’d tell someone that!) for a very long time, amiga. :slight_smile:

BIG HUG!

6

Dexcom in today’s earning conference call cited a study that showed that CGM usage drastically reduced hypoglycemic incidents.

7

Betty is right IMHO-fwiw reduce the insulin to start. A little high beats unconscious blessed every time ; )

You’ll want to discuss this seriously with your MD, the company rep(s) whomever is connecting you, training you with a potential CGM.

Last I heard was they are not ideal at detecting dangerous lows, extreme highs because they use interstecial fluid rather than veinous blood to get their readings. As such you get a potentially dangerous delay between actual BG number and what the machine detects as being your number and being potentially wrong (ie lower).

Can’t verify one way or another, but that is the gist of what I’ve heard. Ask questions, be very cautious!!! Let us all know…

Stuart

8

I actually started having a lot more and much more severe lows after starting CGM.

Seeing the highs caused me a HUGE amount of stress, still does really, we’re talking teeth gnashing unhappiness, after years of being lectured by doctors that high glucose readings were going to render me a blind amputee and that I should always be doing more, More, MORE to get my glucose and A1cs down.

9

So, Jim, does it not alert you when you have lows? (I already give myself too much insulin and I have huge levels of stress when I get high blood sugars, so this won’t matter.) Or do you just get low more often but you still don’t have bad lows?

10

Yes, I agree. The MM GCM detects the interstitial cell glucose values and is always about 15 minutes behind the actual blood glucose value. You have to not fixate on the actual numbers…but watch which way the graph is going…up or down…they recommend your “target” range. Don’t rely solely on the GCM…but if you see it rapidly going up or down, you know to treat. Yes, if you have severe lows it will bring down the value of the A1c so really its not an accurate test of how you are doing…I firmly believe as long as you are not getting the extremes…its OK. I have only ever had one seizure in 55 years and I was constantly being told that I would be a blind, amputee on dialysis. You have to let go of your fear…do not fix so much on the numbers…
Sheila

11

Oh, I still have 'em, though I’m trying to moderate with some success now, including by switching to a pump.

Sometimes the CGMS alerts, but not always - the accuracy of these things is not perfect, and sometimes it’ll show me 80 when I’m actually 40 (and I’ve experienced this with both DexCom System 7 and Minimed Paradigm). The CGMS is a LOT better than having nothing, but will not always catch you pre-symptoms.

Have you considered a diabetes dog? My dog (RIP) used to bark when I was getting low, and apparently there are dogs that have this ability to detect lows and can be trained to alert you (and others) when it’s happening. I’ve given a lot of thought to getting one.

12

I actually really want a diabetes dog – that’s how I found tudiabetes in the first place, I was trying to find information on them. Unfortuantely, I live in a small town in Alaska, and it costs way too much money for me to travel somewhere and to get one. I am thinking of getting a dog and hoping it will be able to alert, but I rent and my current place doesn’t allow animals.

What percent o fthe time would you say that it does alert you?

13

Hmmmm. I’d say 75%+ of the time, perhaps more, though for me, I have clear symptoms as well before I get low enough that it’s a real problem, so I can just eat something. The trick is that even if it’s 90%, you need to have food on you for the times it doesn’t catch it, and for me, I’ve only ever had seizures in my sleep, not when I’m awake, so the issue is not as severe - if you seize without prior symptoms, which is not something I’ve had to deal with, this is a whole different ball game. (Haven’t had a seizure since I think '96, although in fairness, for many years after that last one, I let myself run higher to avoid it because the DMV said they didn’t care if it only ever happened in my sleep, they’d permanently revoke my driver’s license if I had another one. So much for government workers being helpful or caring about public or personal safety, reality, or another human being - I had to tell my wife not to call 911 or an ambulance or to take me to a hospital if I ever seized again, because I’d shortly be unemployed. Fortunately, it hasn’t happened since so she hasn’t been faced with that uncomfortable choice.)

One additional thought about the diabetes dog - this is not legal advice, but a low glucose alert dog would be a service animal under the ADA I believe, and as such, they cannot be excluded from rentals. (Of course, your landlord could always try to decline to renew your lease for “other reasons,” which may not be a battle you want to fight.)

14

The big problem Betty, IMHO, is that many doctors go way, way too far in trying to put the fear of g-d in you about highs, until when you get high, you freak.

I’m still dealing with the effects of this to this day - I got diabetes as a kid and they just drilled us over and over about how I would end up blind and with my feet cut off if I was high, and it freaked my mom out to the point that it substantially contributed to real destruction in our family, and nowadays, whenever I get high, I’m stressed to the point of gritting my teeth and punching the walls. The doctors who blamed me for not having perfect control, and who told me over and over again that I’d be a blind amputee soon if I was over 150 did me no favors.

15

Exactly. I get panic attacks if I got much about 160; I have panic attacks if I’m at work and my insulin is nearing the end of the bottle, because I might get high and I might not have enough insulin. When I was diagnosed as a kid, my doctor emphasized how dangerous highs were, but they never really talked about the problems with lows. Even though, these days, I know there are problems with both, I still can’t get rid of that little kid’s reaction to highs.

Have you figured out a way to get over that fear?

16

Not really, other than just recognizing it for what it is - hyperbole - and that being that, you can’t get so worked up about it.

It’s not that people don’t have side effects of highs, but they’re generally from being out of whack long term, not momentarily, and many people have out of control diabetes their whole lives and never have ANY side effects!

The docs were trying to do you good by scaring you into maintaining control, but if they’re like some of the ones I had, they went much too far in trying to scare you, to a level that was both psychologically harmful rather than helpful, and verging on falsehood as a matter of what we know to date about diabetes and long term side effects. Just remember this - being high for a few hours won’t kill you, just like doing a little drugs or drinking a glass of wine won’t. Our bodies are remarkably resilient, and you should not be panicking at 160 - frankly, your blood sugar should, IMHO, NEVER inspire panic unless you’re WAAAY high for a whole day (in which case perhaps you’re sick and should check in with the doc).

Aim for 100, see if you can keep it between x and y [fill in comfy numbers for you with your doc], but recognize that no one stays between those numbers all the time, and a lot of the scare tactics and stories they told you came from long before we had modern treatment technology and from people who were waaaay out of control for many years by today’s standards.

And most importantly, avoid the seizures - they can kill you, seriously. One of them fractured my spine (ok, an idiot paramedic who strapped a seizing person to a gurney did, but I never would have been there if not seizing), and I’m half an inch shorter now, and lucky not to be paralyzed. You could seize, fall over and crack your skull, SERIOUSLY. Keep this in mind - ask your doctor, but I’d think it would be better to average 120 and have symptoms at 75 than to average 80 and not get symptoms 'til you’re on the floor.

Disclaimer: Not medical or legal advice, I don’t know jack, other than being a diabetic myself for 25 years so far. YMMV. And good luck. :slight_smile: