Judgement Day: Disappointed

This is a sorry post to have to pen, folks.  I had such high hopes.  I wish the news were better.  But  after three full months of futzing around with my new DexCom continuous monitor, calibrating and charging and re-initiating at every turn, my A1c has not made significant improvement.

I’m at 7.1 — up, in fact, from the 6.9 result I got at the (potentially iffy) on-site testing at the ADA Conference back in early June, but still down a hair from my 7.2 result last spring.  Nevertheless: Aaaargh!

Why?  I just don’t understand it.  Perhaps it was me; I was not diligent enough…

Oh, but thinking about it, I was.  I was!  I changed my eating habits, opting for entirely different foods at breakfast, for one thing.  I monitored the CGM screen regularly. I checked with fingersticks almost as many times a day as I had before the CGM.  I corrected with additional insulin doses ad nauseam.  And I exercised regularly, of course, like I have been since long before the diabetes entered my life. 

So maybe this is as good as it gets for me.  Maybe I’m just one of those people who can’t get their A1c below 7.0 without experiencing frequent lows (which I haven’t lately).  ‘Cause the only time my A1c has been under 7.0 was early on in my diagnosis when I was having an average of, hmm let’s see, about two nasty lows a day (!)

Here’s a peek at a typical week.  (For symbolic reasons, I chose the Week of 9/11. Click for a larger view). 

Dexcom_modal_day_911_3

Notice how post-breakfast spikes are still a bit of a problem, but only really bad on two of the days.  Otherwise, what I see is a lot of time spent in the target range.  But Noooooooo.  If that were really the case, wouldn’t my A1c be a nice tidy 6.9 or less? 

So what the hell do I do next?  Without an iota of help from my insurance coverage, the DexCom’s so darn pricey.  I hate the idea of going back to fumbling around in the dark, never knowing which way my BG is headed.  But if it’s not making a real impact on my future health, how do I justify it? 

Oh how painful this is to have to disclose. In my heart I still believe that CGM will revolutionize diabetes care…  and it really is just these clunky first-gen products right now that make it so touch-and-go.  Once the vendors can tighten up the accuracy of these devices, it will be a whole new era of living with diabetes, I’m sure.

(Right now, however, I’m having an incredible urge to drown my A1c woes in an entire Family Size Sack of Ruffle’s potato chips).

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38 Responses

  1. Scott K. Johnson
    Scott K. Johnson October 4, 2006 at 7:21 am | | Reply

    Hey Amy,

    How very frustrating!

    It might be a case where a single three month period is just not enough time to really see what’s going on?

    And maybe it’s the peace of mind factor in not “flying blind”. I can imagine that it would be really hard to go back to being without the Dexcom.

    I can totally see your reservations on the high cost without seeing any impacts on your A1C. But, I’m just saying – maybe that’s not where you will see the impact – maybe more so on the day to day. Just a thought…

    ??

  2. Living With Diabetes
    Living With Diabetes October 4, 2006 at 8:14 am | | Reply

    Glad I waited

    Diabetes Mine: Judgement Day: Disappointed Although Amy is not quite as technology savvy as I am, I am still going to follow her lead on this. Seems that the Dexcom technology didn’t help her. I do feel though that she…

  3. Chrissie in Belgium
    Chrissie in Belgium October 4, 2006 at 8:22 am | | Reply

    In a dream world the insurance people would understand that you NEEDED the CGM for “peace of mind”. In the real world, yeah, you might have to show an improved HbA1c! For me, living in Europe, the situation is different. I cannot in any way get a CGM. On the other hand I test whenever I dam well please, sometimes even in 15 minutes intervals, if I have to see a trend. This is my way of getting “arrows”. I am also constantly yelled at by the medical staff for doing so many tests. After 45 years of D I hate this constant battle between me and the “docs”. Is it impossible for you to do more tests, if you cannot have a CGM? After 45 yrs of trying and so often failing, I do not have much self confidence left and this makes it even harder to keep up my side of the battle. I often think to myself, so maybe I am the wrong one. Maybe I should not do so many tests 8-15 per day)?! I wish someone would understand the emotional conflict involved in being a “good diabetic”. Trying your best is NOT appreciated. Sorry but that is my opinion after 45 years of experience!

  4. Johnboy
    Johnboy October 4, 2006 at 9:24 am | | Reply

    Well, that does seem dissapointing. Let me ask you this, Amy…did all the adjustments you made make things smoother?

    I understand the letdown of the A1c, but I am equally concerned about the impacts and dangers of spikes and hypos on my own health. There is something to be said for lower standard deviation…even if the average is the same.

    I recently took on pumping for this very purpose…to smooth the curve. In fact, a straight line would be the preferred, if not impossible, result.

    As the CGMS technology continues to improve, I would hope that better outcomes would result.

    Again, sorry you had that bummer A1c.

    All the best,
    Johnboy

  5. Kevin
    Kevin October 4, 2006 at 9:28 am | | Reply

    Hi Amy,

    I totally understand your frustration. While I have not had the luxury of test riding a CGM device, I have made significant changes in my diet, exercise, basal rates, etc., etc. and have not had the results I had hoped for. (I even rant about it on my blog (see my post titled “H(a)emoglobin Woes”, apparently, I can’t post a link in your comments).

    But when I looked at your graph in more detail, what struck me is that the “normal” range extends all the way up to 220 mg/dl. This seems a little high, and you seem to spend a decent amount of time between 180 and 220. Does the Dexcom produce a continuous average reading? If so, how does that compare to some of the estimated relationships between average glucose and A1c readings?

    I’m sorry you haven’t seen the benefit you were expecting, but don’t dispare. It’s all still very new, and I’m sure this tool will help you lower your A1c over time.

  6. ralph berry
    ralph berry October 4, 2006 at 9:44 am | | Reply

    I use to be the a1c king at about 6.1 and 6.3. I am now 7.9 and 8.1. The significant difference is terrible night time lows so I would rather be a bit on the high side while sleeping then the other extreme. I have been diabetic for 56 years and am trying to lower my numbers but it is very trying and a very slow process. Stress being a significant contributor to high b/s tells me to stress less and go with the flow.

  7. Kim
    Kim October 4, 2006 at 9:56 am | | Reply

    Oh Amy, I’m sorry, I know how disappointed you must be. What a bummer after all that work and effort and maybe worst of all – high hopes.

  8. Casabby
    Casabby October 4, 2006 at 10:21 am | | Reply

    One problem with CGMS is that it only gives information. It does not give solutions or fix problem areas that it is able to highlight.

    You’ve started some steps to address your problem areas by changing your breakfast foods, taking additional insulin doses, and continuing to exercise. But maybe it’s time for a new tool and you know what it is: the pump.

    The ability of the pump to allow multiple basal rates and precise boluses for food and corrections should help you to lower your highs without increasing your number of lows. On the pump you can target some of the reasons for lows by lowering basal while exercising, addressing dawn phenomenon while keeping basals lower at other times, and giving yourself a lunch basal of 3.3 units rather than eyeballing some magic syringe number between 3 and 4. It also helps to have just one kind of insulin in your body, rather than dealing with the inconsistent action of long-term insulin and its interplay with your short-term insulin. And so on. You know the arguments.

    So I think it’s time, Amy. Get another new tool for your diabetes toolbox. And just think about all of the great posts that you can write about pumping!

  9. Anne
    Anne October 4, 2006 at 11:04 am | | Reply

    Amy, I am really sorry. I just bought a DexCom myself and am hoping for some improvement, but I am starting a bit higher than you so have more room for improvement.

    Given that you were paying for the CGMS out of your own pocket, I know it must be even more frustrating. This thing is $#%$ expensive!

    One thing I am strongly considering is starting on Symlin (amylin) after my meals. Having done some research on it, I wonder why it hasn’t yet revolutionized type 1 diabetes the way lyspro insulin did. It is another hormone missing in type 1′s. If it’s there in non-diabetics, then shouldn’t it be there in me too?

    If you aren’t on a pump, I would second Casabby’s remarks that maybe you should consider it, especially if your insurance covers it.

  10. Diabetes Daily
    Diabetes Daily October 4, 2006 at 11:35 am | | Reply

    What’s Your Normal Range?

    Amy at Diabetes Mine has been unhappy with her continuous glucose monitoring (CGMS) experience: [A]fter three full months of futzing around with my new DexCom continuous monitor, calibrating and charging and re-initiating at every turn, my A1c has not …

  11. AmyT
    AmyT October 4, 2006 at 11:53 am | | Reply

    Thanks for all the input, guys.

    Just to be clear, the reason I haven’t tightened up the alarm range from 80-220 is that the thing is over-sensitive and often beeps erroneously all night anyway. I end up tossing it out of range for the whole night so that we can sleep. We were concerned about even more useless beeping, esp. at night.

  12. Kelsey
    Kelsey October 4, 2006 at 12:50 pm | | Reply

    Hi Amy,

    I’m also sorry that the CGMS didn’t live up to expectations. However, I agree with Scott that perhaps 3 months isn’t long enough to get an accurate picture of what your A1c “could be” with this tool.

    And, I have to ring in on the pump argument. I was totally with you on not wanting one. I pledged to “get my A1c perfect so no doctor could make me go on the pump.” I did it. My last A1c was 6.0. But, I was tired of all the work it took to maintain that kind of control with injections. I started the pump 2 weeks ago and I LOVE it. I won’t go so far as to say I’m kicking myself for not starting it sooner, because I had to go through the process I did to be ready to embrace the pump. There’s been some bumps the first couple weeks, but I can see what a great tool it is for “fine tuning” my control.

    So, as a fellow hold out :) I’d just encourage you to look into the pump again. The things that concerned me about the pump before, are not an issue at all. I find the infusion sites to be painless (so far) and having it with me all the time is fine.

    I went with the Deltec Cozmo and have been COMPLETELY satisfied with the product, the service, everything.

    Good luck Amy!

    ~Kelsey

  13. David Edelman
    David Edelman October 4, 2006 at 12:52 pm | | Reply

    Hi, Amy. I’m sad to here about all of your issues. I blogged back my response here:

    http://www.diabetesdaily.com/content/2006/10/04/whats-your-normal-range.php

  14. Felix Kasza
    Felix Kasza October 4, 2006 at 4:54 pm | | Reply

    Hi Amy!

    Come on, if the other weeks were like this one, you couldn’t seriously expect an HbA1c in the mid-sixes. As best I can figure, you’d have to shoot for a 70-80 fasting target and a 120-130 pp spike at most. (You will still overshoot those, which is why you would have to aim for lower targets.) That means getting rid of bread, gluten-free or not, in Germany and eating La Tortilla Factory low-carb tortillas. (They are very much like cardboard, except that cardboard has a better taste and a more pleasant mouthfeel.)

    It also means hovering at the edge of a low when exercising by starting with a BG near 100 instead of 180; it means pre-bolusing for meals as we did with Regular back when; and so on. Not fun at all, but in my case, I manage HbA1cs between 4.6% and 5.2%.

    Sorry,
    Felix.

  15. Megan
    Megan October 4, 2006 at 7:04 pm | | Reply

    So sorry to hear things are going the direction you hoped.

    I’m not overly optimistic with the first gen CGMSes, but I am optimistic about the direction I hope, and expect, for them to go.

    If post breakfast spikes are a problem, have you considered trying Symlin with breakfast?

  16. Barbara
    Barbara October 4, 2006 at 7:06 pm | | Reply

    Amy, I went to your blog today because I had just called DexCom for information. I wanted to get the training they require for starting on their CGM. I am a diabetes nurse educator and T1 for 43 yrs. I’ve recently had some “unaware” lows. Though I didn’t require assistance, these have scared me, especially since my husband is often out of town. That’s what’s pushing me into jumping in, though I would love to wait for the second gen. I am wondering if it’s worth it for that reason, even if my A1c doesn’t improve “because of the CGM”. I’m thinking that I agree with other comments that lowering the a1c might not be the bottom line. I’m very much about good control, but I also appreciate quality of life. If the CGM would help with the detection of lows (and upward trends) then is it worth it?? I wore the minimed CGM sensor for a 3 day test (the one for diagnostics, not real time). Although I got about 4 days out of it, it drove me nuts. The needle is large and irritating. Is the dexcom smaller?
    I second the opinions about pumping. I have had every pump available over the past 26 years of pumping. I now have a Cozmo and could not face the world without it. I also started on Symlin in May, and recently put it in an extra old pump (I’m wearing two pumps!) and it is working well for me…it’s all very interesting and frustrating and tiresome. I, too, get very bummed with too high a1c #s which don’t reflect, like you said, all the work, calculations and contemplations that suck our time and energy managing it all. Just some thoughts. Tell us more after you’ve had more time to think about it…

  17. JasonJayhawk
    JasonJayhawk October 4, 2006 at 7:25 pm | | Reply

    Amy,

    Could you share with us your meter’s (or meters’) average(s)?

    I wish there was a way you could export the specific (blood glucose level, date/time) points so that outside analysis could be used. It would be nice to compare.

    I had my best learning experience when I logged my insulin intake, glucose level, and food intake for several weeks… Could you do that while on CGMS, and log it to something we could see? (I’m doing a data mining thesis on these diabetes events, and wish more data sets like this were available).

  18. Marston
    Marston October 5, 2006 at 12:16 am | | Reply

    Hey Amy,

    Sorry to hear about this, I had (and still have) high hopes for the continuous monitoring devices. Hopefully it will work for you eventually or at the least you find a solution that gives you better results.

  19. Dorothy Baron
    Dorothy Baron October 5, 2006 at 6:12 am | | Reply

    Amy
    I’m sorry to hear that your Hba1c number. Please reconsider a pump. I start with a Animas Pump 3 months ago. It is the best thing since sliced bread.
    I stick myself once every three day with inset unit. I test blood sugar as needed. I have adjust the basal rate of the pump to account for activity etc, both day and night. As a result, all I need to do is count carbs and enter the amount in the pump. It calculates the insulin needed and
    injects it at the site. The pump keeps record of the inulin in my system so I can’t over dose and get a low.

  20. Becky
    Becky October 5, 2006 at 8:29 am | | Reply

    I’m not a big believer in the A1C because it is an average that can be misleading. Is it possible that pre-dexcom, you were having undetected hypoglycemic events? If so then the A1C you received pre-dexcom was skewed, right? I know they worry about kids with low A1C’s because they are concerned about multiple undetected hypoglycemia.

    If you feel better and more in control than pre-dexcom, then that is what is important. Best wishes!

  21. Annie
    Annie October 5, 2006 at 8:31 am | | Reply

    Hi Amy,

    Once again, I have to tell you how much I love your site. It has become a lifeline for me and I have shared it with my CDE and a friend of mine who is a CDE as well. I am so sorry to hear about your frustrating experience with the Dexcom. I just had my 3 month appointment–since diagnosis–and am very anxious/excited (HA!) to see what my A1C will come back as. I am hopeful to be below 6.5 as I have been in pretty good control (my first was 9.2!!) but seeing your story makes me nervous I will still be high. I will be so depressed if I am still high after trying so hard. I think we all relate to the emotional roller coaster of being a diabetic. I TOTALLY get what you were saying about the Starbucks lady!! I feel like that all the time. I get so angry at everyone who can just go and eat whatever, whenever and without equipment!! It’s so irrational and I am so happy to see I am not the only one feeling that way. I start to think about other diseases and then decide whether I would rather have them or diabetes. Sick! Along the lines of being grateful to have diabetes, I often would rather have diabetes than many other illnesses. There is always a silver lining and that keeps me going. I just finished a 10 mile run this morning–how lucky I am to be able to continue with my life, do something that is healthy and enjoyable and just have to poke my finger at the end? At least I can move under my own power. I am so confident that research will be successful in finding a cure for diabetes in the near future. Stem cells introduced into rats with ablated pancreas’ has been successful already and will hopefully be successful long term. Anyhow, I am rambling. Keep up the good work, hang in there and stay healthy!

  22. NS
    NS October 5, 2006 at 8:34 am | | Reply

    My heart tells me to tell you to eat the Ruffles, my head tells me to tell you to hang in there!

  23. CB
    CB October 5, 2006 at 11:24 am | | Reply

    Like all the previous commenters, I’m sorry you’re down about your A1c being up. The seemingly universal acceptance of the A1c test results as “the best” way to measure our control, is perhaps over-emphasized. Sure, it’s a test that we should all use and understand and it’s convenient get done, but it’s an average, and doesn’t explicitly account for the distribution of your and my BG results. The A1c number goes up (I expect disproportionately) when you or I have a relatively small number of big highs. In order for the A1c test results to be lower, I expect we need to have at least an equal number off-setting lows. These lows are, of course, problematic to say the least for you/me and for those close to us, who need to deal with their effect if we’re “unaware.”
    I became a pumper several years ago, and indeed, my A1c’s have fallen. My pre-pump average A1c was 7.1; my post-pump A1cs’ average has been 6.2. Sounds great doesn’t it? Maybe. It’s taken me too long to realize, but I expect the lower A1c average is likely due far more to still having a fair number of BG test results fairly low (in a recent month, about 20% of my BGs were lower than 75 – yikes!), not because the distribution of my BGs is any narrower or “smoother.” Despite considerable effort and discipline, I also still have a fair number of highs (in a recent month, about 30% of my BGs were above 130).
    “Smoothness” in our BGs is worth shooting for (no pun intended), but after 50 years of D-dom, it has always alluded me, and probably always will. Behaving as a “good” PWD and getting an A1c that’s below 7.0, is also a laudable goal. But whether you use a CGM, a pump, or some other means, I think it’s more important for PWDs to feel good about what we have attained (like the 7.1 you achieved), reduce the stress of setting our sights on that “magic” 7.0 and remember that reducing the inherent stress that comes from living with diabetes on a 24/7 basis is probably the healthiest goal of all. In other words, 7.1 sounds good to me.
    P.S. Thanks for having the courage to post your CGM BG test results visually. It’s is an incredible value for us.

  24. Scott
    Scott October 5, 2006 at 2:43 pm | | Reply

    Amy,

    Dare I ask if wearing the DexCom resulted in any reduction of hypoglycemic events? After all, the latest rage seems to be that A1C itself is a less valuable indication of how good actual control is than the number of “standard deviations” (both high and low) a patient experiences. If the slope of your blood glucose levels has been reduced, then the justification could very well be that the potential for severe hypoglycemia may also be reduced. A few visits from EMTs to treat lows could justify the added expense!!

  25. Reed
    Reed October 5, 2006 at 3:46 pm | | Reply

    Amy,

    First, thank you for the work you put into this site … it’s terrific!

    Re: your 3 month Dex A1C, I have a little different perspective. It appears that you and Dex have eliminated the lows, which we know are problematic. Thanks to Dex,I have also corrected blood sugars headed “below the line” and believe that it makes for a higher quality of life.

    So, without the lows to balance out the high blood sugars you’re still experiencing, your A1C has to be up. The fact that you held it flat while eliminating lows is encouraging. Also, don’t I remember you commenting on unusually high sugars during your travels overseas and back?

    I do think that the others are right in that your data points appear to be in line with a 7.0 A1C. You can make adjustments to pull your data points down and get to your objective.

    Even though you’re not at your goal yet, you have the data to make structural and real time adjustments. That’s encouraging! Good luck and keep up the great site.

  26. GaryK
    GaryK October 5, 2006 at 3:54 pm | | Reply

    Hi Amy,

    Sorry to hear about your HBA1C tests, too. I am also using any improvement in my HBA1C as a justification for CGMS. If I don’t reach the mid-sixes next month I will be totally frustrated, as are you!

    I’ve been using the DexCom since August, but the *BIG* difference between you and I is that I am a pump user; as others have said, I think you would benefit from the pump; you are so knowledgeable about *D* in the short time you’ve been a diabetic, I think you’d be a whiz with the pump!

    I haven’t had as many frustrating experiences with the DexCom, perhaps because I am on the pump. Making basal adjustments is also *MUCH* easier when you have CGMS in combination with an insulin pump.

    If you’d like to learn more about the pump, there is an excellent book, the insulin pumper’s bible, which I think would help you make a decision:

    “Pumping Insulin: Everything You Need For Success On A Smart Insulin Pump”

    You can pick it up on Amazon.com. Make sure you get the latest edition, the 4th edition: it’s about $16 on Amazon.

    The book also tells you how to use CGMS in conjunction with an insulin pump: Great stuff!

    Perhaps you might consider trying out the pump, and then returning to CGMS if you need to.

    I agree that these first generation products are buggy; for me though, it’s worth it to avoid *most* of the hypos I was getting and to fine tune my pump programs. I also don’t have as many *ups* and *downs*.

    Best wishes, I know you’ll write about many more succeses than failures. Fighting *D* is a long and weary battle sometimes …

    GaryK
    http://www.mycgms.com

  27. AmyT
    AmyT October 5, 2006 at 4:18 pm | | Reply

    Thank you all kindly for your input and encouragement!

    After having a little time to digest this all, I think Reed here hit the nail on the head. My current meter averages are 137 (14 days) and 140 (30 days). Not so fab, but on the other hand, I’ve only had about TWO memorable lows in the last three months. There’s some real value for you!

    So almost no lows + mediocre middle ground = 7.1 A1c. I guess I can live with that for now. I’ve already reset the DexCom high alarm to go off at 200. Next step is to see how much that helps…

    Ooh, and Gary: I’ve had that book on my shelf for a while. Last night I was lying in bed thinking that now is the time to crack it open!

  28. BS
    BS October 5, 2006 at 4:30 pm | | Reply

    Amy:
    Sorry to hear about your disappointment with your last A1c. I have been greatly helped by my endo, who I think is the very best in the business (My last a1c=5.3, and I’m working to get down to 4.6).

    This link offers some insights into his thinking, and some useful math conversions:

    http://www.rajeun.net/HbA1c_glucose.html

    The math suggests that your targeted blood sugar level is very likely too high, but your readings seem consistent (visually, anyway) with the math conversion of (A1c x 35.6) – 77.3 = average BG level.

    Good luck.

  29. Eric Jensen
    Eric Jensen October 5, 2006 at 9:03 pm | | Reply

    Amy,

    I’ll join in the chorus of sympathizers – I, too, am sorry to hear about your A1C, but am awed by your willingness to put this all out there for everyone to see. It’s really amazing, and a great example.

    And, I hate to say it, but I’ll add my voice to the others who are encouraging you to get a pump.
    I’m not in the “best thing since sliced bread” camp, but I do think it helps, esp. with overnight levels.

    Maybe a parallel experience of ours will help: for years, I couldn’t imagine getting a pump because I didn’t want something attached all the time. Then I got my Dexcom in June, and, after wearing it for a few months, adding the pump (which I did in mid-August) seemed like no big deal. You’re now accustomed to having something attached to you all the time (the Dexcom sensor) and wearing something geeky on your belt – the pump is no worse (and a little less bulky!)

    Finally, I’ll say that I share your frustration with nonsensical overnight alarms – my solution has been to set the alarms to a much broader range at night, and then tighten them back up during the day. You could try that, so that you could still catch some of the daytime highs earlier, but still not lose your mind at night.

    With all best wishes, and my admiration for your hard work and willingness to share,

    Eric

  30. AmyT
    AmyT October 6, 2006 at 8:29 am | | Reply

    Eric,
    Thanks for your empathy and your input. Unfortunately, the DexCom doesn’t allow flexible alarms. You can only set it for one level at a time — and with everything my kids need at bedtime, I’m not about to fiddle with changing it every night.

  31. Jenny
    Jenny October 6, 2006 at 5:15 pm | | Reply

    Hi amy,
    I was recently at a children with diabetes conference and one of the speakers,Gary Scheiner of Integrated Diabetes Services, said something about lowering A1c’s that I thought was significant. If the A1c is already in the higher range, then before meal BG readings are having a significant effect, but if the A1c is already somewhat lower (7-8 range) then lowering the post meal BGs are more significant in lowering the A1c. I thought it made a lot of sense, although I’m not sure if I have expressed it here accurately. So, anyway, in other words, look at ways to lower your post prandial numbers in order to lower your A1c.

  32. JasonJayhawk
    JasonJayhawk October 6, 2006 at 7:02 pm | | Reply

    Wow, Amy, my meter averages (10 to 12 tests per day) are about 120-130 mg/dl, and my A1c level has never been over 5.8% (knock on wood).

    Are you looking at the reference range for your A1c test? My 6.0% reference range might be the same as your lab’s 7.0% ref range.

    I know, that’s my shot in the dark, but wouldn’t it be nice if you were just looking at the wrong “answer key”?

    You pointed out a few months ago that glycemic variability plays as much (or maybe more?) a role in complications than A1c alone. Do you have any way to determine if your variability has decreased with the CGMS?

  33. kelly
    kelly October 8, 2006 at 12:58 pm | | Reply

    hi Amy – I’m so impressed with what you have done with your continuous monitor and your diabetes management – you have given us all so much to think about! Thank you. I wanted to lob in and say I think about “quality of A1c” a lot and it sounds like your quality of A1c has improved. That is to say, as many readers have noted, that even if it is around about the same A1c as before, but if you have fewer highs and fewer lows, that feels like it should be a positive.

    Worst case, you feel better; best case, there is less contribution to any long term complications because all the numbers are “smoother”. That last hasn’t been proven in a long-term clinical trial because that would require a very long clinical trial BUT … I like to think it’s an area that will see more testing so some evidence and conclusions can be made.

    That’s completely right about the post-prandial contributing more to A1c if you have a pretty in-control A1c to start …this was written about by a French doctor called Monnier in Diabetes Care in 2003. You can see his whole piece online below (just type in Monnier 2003 when you arrive at the site).

    http://care.diabetesjournals.org

    I agree about both the pump and Symlin and also know it completely depends on all the other factors which you might want to try if either. I resisted the pump for a v. long time and now can’t imagine, like many others, going without it. BUT I also can’t imagine going without Symlin – what I had really needed help with before getting pregnant was post-meal numbers and Symlin has really worked. Symlin helped me get from 7 to 6, which was excellent – not easy though. The lower after-meal numbers are so much better, and a big side benefit has been having less hypoglycemia, because I’m trying to correct (read: failing and overcorrecting) fewer highs.

    I suspect the ADA will continue to reduce the A1c target for people with diabetes. It makes sense to me that the goal should be normal, or as close as they can reasonably get to normal, safely. And the more tools we have that help us mimic good physiology (pumps, Symlin, good continuous monitors), the better, with a major caveat – we need help not only getting our insurance companies to cover these items, but getting coverage for everyone.

    One other thing on Symlin – Symlin is hard to start for some (was for me) because it took awhile to figure out the titration (you reduce your insulin intake as you may know) and there’s nausea (that eventually just disappeared for me).

    Symlin for some people also has other benefits – some lose weight, some swear they feel better, etc. Recently I was enthusing about Symlin and how much better I felt on it (I hadn’t thought I felt bad to start) and someone else also taking it asked if I got a post-sex buzz ~ I stopped short, laughed, and said, ‘oh! yes, that’s a pretty good description…’ that is to say, it makes me feel generally pretty great when I’m on it.

    I also know Symlin doesn’t work for everyone… everyone’s mileage varies, etc., and for sure it isn’t the easiest medicine to start, but I thought you might consider giving it a try, especially because it must be easier to start with a continuous monitor (I didn’t have that when I began but wish I had.) If you try it though, I think you have to commit to a few months – I say that because I probably would have quit, but I was in a clinical trial – and I’m sure glad I stayed on it because I wouldn’t have seen the benefits at the start. For sure, two or three more shots a day is a hassle, but seeing that 120 an hour after you start eating – that’s blissful.

    My insurance (BC/BS) was happy to cover it although I met someone recently at Kaiser, who can’t get Symlin because it is not covered yet. Hope that changes soon.

    As always, great luck, and enormous thanks, again…

  34. TR
    TR October 12, 2006 at 2:52 am | | Reply

    Dear Amy,

    You have no reasons to be discouraged! A1C is not = “a real impact on my future health”

    If you taking lows out of equation and your A1C did not go up significantly you are better of. Two patients with the same A1C will have very different prognosis if one has glucose fluctuating 30 units a day and other let say 300. Perhaps more can be done with analyzing your data to improve your A1C in the future.

    A1C is a grate test but it has its limitations. If we would have better marker reimbursement would not be questioned.

    My daughter got her monitor just few weeks ago and she is going through a lot of frustration because difference in glucometer data and Dexcom is huge. I wonder if something wrong with her Dexcom. It would be nice to know what your experience is. Yet trend is always right and she learning a lot.

    Thanks for you blog!

  35. whimsy2
    whimsy2 October 12, 2006 at 2:57 am | | Reply

    Amy, I just read your blog about your latest A1C of 7.1. No, DON’T settle for that! If you do, you’re sure to end up with diabetic-related complications. I have the Answer!

    There’s a retired diabetic engineer named Ron Sebol who’s devised a practically foolproof system for dosing insulin. You can eat the foods you want — he has a method for determining your own parameters for insulin dosing. It requires a LOT of testing over a several-month -period and a commitment – but if you can stick it out, it really works.

    I found him through an internet list nearly 7 years ago, one year into my diabetes (LADA) life after a high degree of frustration at my poor control despite my best efforts. After months of working together – zilliions of emails, lots of middle-of-the night testing and even a few phone calls (on his dollar) I got my own food chart which I’ve used with great success ever since. My A1C has never been above 6.2 since I finished working with him. I’ve been diabetic since 1997, used his system since about mid 1999. I have no diabetic-related complications and plan to never have any.

    I’m not a pumper — I use MDI — but he has worked with many pumpers with great success.

    If you’re interested, I can give you the join-up information for his diabetes list, where he will work with you individually. You can, of course, communicate with him offlist first, if you want.

    If you’re interested, let me know and I’ll put you in contact with him.

  36. AmyT
    AmyT October 12, 2006 at 2:58 am | | Reply

    Hi whimsy2,
    I’d be very interested in his contact info. I’ve tried to email you, but keep getting error messages (?)

    Can you send me an alternate email address?

  37. Rick Stockton
    Rick Stockton December 8, 2006 at 3:42 pm | | Reply

    Change your ‘high’ alarm level downwards!

    Gadzooks, you’re spending most of every afternoon ‘floating’ between 150 and 180… and your Dex isn’t set to even give you a buzz?

    I’ve got mine set to buzz at 160 (high) and 90 (low). Yeah, it buzzes a lot. But that’s because 180 isn’t acceptable.

    You’ll end up in the sixes if you handle your afternoons better. As for the morning peaks, which look REALLY bad– I think that you should stop eating a bowl full of Raisin Bran (or equivalent) for breakfast, start eating more protein. The carb load is just too much for your timing constraints to handle.

    Raisin Bran has been GaryK’s favorite, I don’t know if he’s given it up or merely cut back. But he had the same problem (and maybe still does).

  38. MikeG
    MikeG December 14, 2006 at 8:40 am | | Reply

    Amy,

    I see that you’ve got a new article that says your A1C went to 6.5 10 days after going off your Dex. Since A1c is a long term measure, is it possible that CGM monitoring was a factor? If so, are you going to do a go-back on this article, that indicates that the Dex didn’t help?

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