LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Tuesday, December 20, 2005

Thanks everyone!

Yippee! Today we just went over the 3,000 visitor threshold!


Anonymous Anonymous said...

I have finally gotten around to commenting on this great blog. Before I begin, let me make it absolutely clear that I’m in no way anti-Guardian RT. I’m a Guardian RT user myself, and I add these comments to add more information to other readers, to complement your excellent accounts. I’m also a healthcare professional, which has given me access to extra information.

I’m going to refer to the Guardian RT throughout as the Guardian, as I believe the original Guardian (that just had alarms to prompt bg testing if the level wa too high or low) has now been discontinued. I’m obviously referring to the RT, anyhow!

My first point is what you said about it not being cure-all technology. You’re right on. But that is exactly why I think the Guardian should be available based on pretty strict criteria. I’ve not yet recommended the Guardian to a single person, or even told many people I have one. Before anyone gets on a Guardian I think they need to be realistic about what it can achieve. If you are not past hating diabetes, past the frustration that there is not a cure NOW, or have not realised that your bgs can never, ever be perfect, or a flat line, or anything other than variable, that highs and lows happen, then a Guardian is going to do more harm than good. It isn’t a cure and it won’t actually make managing diabetes any easier (remember – I use one) All it will do is give you more data to work with. The sheer volume of data is only useful if you know enough about diabetes to be able to use it, and have the tools (really, a pump) to do that. If you are striving for perfection it will always make you feel like an utter failure.

You have to remember that type 1 diabetes is actually dependent on only one thing – insulin. Before home blood glucose monitoring people could and did live healthy lives. Ditto pre-pumps, ditto pre-A1c testing, ditto pre-modern knowledge such as DCCT. I’m not for a moment advocating we go back to that. (For information, I was diagnosed pre-human insulin and routine home bg testing and did not have an A1c until many years post diagnosis, that was not standardised as now, and so not really much use!) Sure, a healthy life before these things was more by luck than design and it is certainly easier now to stay healthy than ever before. It is natural in this day and age to be a bit dependent on technology, but it should not lead to an unhealthy and overwhelming obsession with the current blood glucose level. We are people first, people with diabetes second, and you have to remember to have time to live a normal life, or there is no point in having the ability to stay healthy!

It worries me that where I am in the world (not the US) the Guardian is on free-release, meaning effectively anyone can call Medtronic and buy one. (Medical devices are not Rx only here.) Medtronic prefer you to have the approval of your healthcare team, but they are also a business and naturally want to make money. In any case, the healthcare teams are not familiar enough with the Guardian to work out exactly who will best benefit, or, more especially, who might be harmed. A reason, I think, why a limited release in places with sensor specialists is a good idea.

I don’t use the Guardian in the same way that you do, Wil. For starters, I don’t wear it everyday. I wear it for 4 days a week, on the days that I work, because finger sticks are difficult when I work, and low numbers a no-no. I wear it for peace of mind – with a low alarm set at 110 mg/dl (yes, that is right – I’ll come back to it in a minute) I also do a once a month basal rate evaluation. I already said I’m not in the US, and here the sensors cost twice as much as they do for you so I can only wear it half as much for the same cost. (Not wearing it full time also extends the life of the transmitter) I use one sensor a week, for four days (you can override the three day alarm.) If the sensors were half as expensive, would I wear it all the time? Almost certainly not. The point you make about becoming complacent – right on again. I only use my Guardian for a specific purpose, I don’t want to rely on because the technology is no where near good enough yet.

And before you say it, I have hypoglycaemia unawareness – the unfortunate consequence of excellent A1c’s for many years. I still don’t use the Guadian everyday because I don’t think it is the answer to this problem. I think evaluating my basals, understanding the precise effects of different foods and exercise on my blood sugars, and frequent fingersticks are the answer to keep a predictable level of control. In addition to the standard treatment for hypo unawareness - periods of not obsessing, and letting my sugars run much higher i.e. treating 120mg/dl as a low – yes actually eating sugar at that level and not thinking of anything under 250 as a high. Basically aiming for 180. This brings symptoms back briefly for me, but the less time you’ve had diabetes, the more effective it is at totally restoring awareness, because your body stops being used to low levels, and begins reporting them again.

I don’t think the Guardian is the answer to hypoglycaemia unawareness, because the above method is much more tried and tested but also for the same reason that I set a 110 mg/dl low alarm. So what is the reason? I do it this way, because, as I said, I use it for peace of mind that I will avoid hypoglycaemia. Simple fact: the Guardian does not get to lows before a finger stick. I have seen the scientific data to confirm this, and heard a presentation on the topic. The Guardian lags behind a finger stick by 20mins, more if the bg is changing rapidly. Add to that that I may not be able to take immediate action on getting an alarm, and you understand why I set it at that level. I don’t count up my alarms, because that would make me feel rubbish. I still do 10 finger sticks a day, and enter 5 or 6 into the Guardian. I still use the same data-management program I used to, in addition to the Guardian software, which I use for trend analysis. The situation with highs is actually worse, because it under reads them in a non-time dependent manner, so I actually set my high alarm at 180 mg/dl outside of work. I set it higher in work, to avoid repeated alarms that would be inconvenient. But then, my bg control is much tighter out of work than in.

Blood glucose meters, in comparison with the Guardian technology, are tried and tested. I would always trust a finger stick over the Guardian. In addition finger sticks test the blood, giving us numbers in a scale that we understand. The Guardian tests interstitial fluid, and converts this to the scale we are familiar with, but as yet we don’t really know much about interstitial blood glucose measurement in comparison to actual capillary measurement. Yes, blood glucose meters occasionally make mistakes, or have duff strips, and I often test twice if I get an unexpected result. I have tested twice in response to disagreements between Guardian and my meter, but go with the meter.

I think this slight accuracy and lack of trust issue is an important point. I’m lucky enough to be in the situation that the cost wasn’t a big issue right now, but this is another reason for not recommending it to others. If someone is considering getting a Guardian but would need to make financial sacrifices to do so, I would say don’t. Please consider waiting. Medtronic have the accolade of being first to market, and no one else will get that now. So others will have to find another way of being noticed, being commended and remembered, and of competing. In all likelihood, the next gadgets to come along (Abbot’s Navigator, Dexcom) will be better and they will be cheaper. Medtronic will release a second generation, with improvements. Insurance coverage will come when the worth of the technology can be proved, but I personally don’t think that will be until the technology is good enough to enable therapy decisions to be based on the sensor information, until trend alarms are incorporated so it really is possible to prevent hypo and hyperglycaemia rather than just be alerted to its presence.

That is just my two cents, and as I said, not in any way intended to be confrontational. I really think you are doing an excellent job of bringing nuts and bolts info to the readers of this site. Keep it up!

4:15 AM  
Blogger Wil said...

First, let me thank you for taking the time to post such detailed comments. I did not regard it as confrontational in any way. I love feedback from anyone. Yours is especially valuable to both me and my readers as you are also a Guardian RT user (I don't think the original Guardian you mentioned was ever sold in the US).

We all know that everyone's mileage may vary, as we say here in the States, so it think it is great for readers to hear of other users experiences, rather than just my own.

I'm surprised that anyone can just go buy one were you are. I agree with you: I’m not sure that is a good idea. Wearing a Guardian is a lot of work, and it gives you a lot of data. I think, in general, the patient's health care team is (hopefully) in the best position to know if it is appropriate. That said, many areas of our country are woefully short on doctors. We have to take responsibility for our own care to a great deal. Also, if you've been with me from the start or read back through the archives you'll know that there are ways around the prescription issue. I traveled out of state and met with a "new" doctor to get my hands on this system.

I do disagree with you on one point, I think the Guardian does make managing diabetes easier. Well, maybe “easy” is the wrong concept. I feel between the data and the alarms that I have to tools to better control my diabetes. Although I think you are right that if you take your BG's too seriously being able to see their trace 24-7 will make you feel like a failure. Part of that is we are "new" to seeing how sugar acts in the body all day long. We are use to a few points connected by nice, neat little lines. I think future generations of diabetics (if there are future generations, but sadly, I think there will be) will be more comfortable with Guardian type traces.

As to alarm thresholds, that is one of the great things about this system. You can personalize them for your body, life style, work, or psychological security. Interesting that you wear your sensors four days. How do you find performance on the fourth day? I Also, about the three-day alarm, I have at least one good notion of how it might be done, but I'd like to know how you override it.

I'm not sure that the Guardian is best for pumpers. I wonder if people on shots might have a greater compelling need for one. Pumpers, in general, have better control to start with due to the fact that we test our BG a hell of a lot more-- nothing but fast-acting insulin on board. I wonder if the folks still on shots aren't the ones who could really benefit from Guardian technology.

Again, thank you for taking the time to share your thoughts and experiences with us.

9:15 AM  

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