I’ve had D since I was 10 months old. I’m now in my early 40’s, surviving a few rounds with prolific retinopathy in my early 20’s, and i’ve had protein in my urine for years, I think the ace inhibitors have been keeping that in check for quite a while now. I have 2 great children, ages 19 & 11. Unfortunately, I also passed on the D gene to both of them, they were both also D’xed at < 12 months old. My older daughter is quite busy, school, work, friends, pretty much being a normal young adult with a busy non-stop life. So, her endo and I thought a CGMS might help her maintain better control. It was shipped to her a few weeks ago.
to me, this is the realization of a dream. She had been wearing it pretty much non4e stop for a few weeks, and wanted a break, so I borrowed it from her in preperation for my endo visit. I haven’t been so excited by a piece of D tech since my pump. It was amazing to see what I did after meals, overnight, with excercise, and when vegging out on the coach. I want to try and get one of thee devices, the info is incredible and it was just so great to be able to factor in IOB and tell if I needed a temp basal increase or decrease, and finally see how long it took for me to digest Pizza (5 hours, who knew?).
If for nothing else, my peace of mind. My endo, however, thinks I don’t need one. Huh? Did he not see the 2 nights I plummetted down to the 60’s, stayed there for hours, and then was at the 300’s by 6 am? How could he say this is an unnecessary device, that finger sticks work just as well? How can I convince him that even though my Ha1c’s are decent (6.5-7.7 for the past 3 years), I could do so much better, and want to work on things like lower standard deviation, contol the “swing” in my BG. Or, should I just give and and go endo shopping? I actually MISS the dex, and so does my husband, he loved coming up to bed and being able to SEE that I was OK, just maybe a little warm, not low. Opinions?
Dump the endo. I filled out the paperwork for a dex and asked my PCP to sign it. I got my dex in the mail a week later. My A1C was consistently in the high 5s. I wanted the dex because my bg variability was too high for my taste. My bg standard deviation was about 60. I saw bg in the 200s almost every day. Now my bg standard deviation is 30 and I no longer see bg in the 200s. Bg above 160 is rare. For me the dex is the best thing since sliced bread. For the first time ever I believe I have a chance to avoid complications. Fight for a dex.
If you’ve pushed your Endo and they won’t agree to sign the paperwork then it’s time to move onto a new Endo. Switching doctors is hard and takes a lot of work but if they doctor you have isn’t willing to work with you for your best health then you need to find a new one. With that said make sure your Endo realizes how passionate you are about this first. Technically the Endo shouldn’t say yes or no. If you can prove you’ve got undetected lows, an A1C over 7ish, or high glycemic variability then the Endo has no case and should be signing the paperwork as soon as you ask. If your doctor is preventing you from achieving the control (and the security) you desire then it’s time to get a new one.
I totally understand if an insurance company wants to avoid the cost of a CGM. But an endo blocking it? Run as fast as you can.
I fillled out the paperwork and sent it into the Dexcom, sales rep explaining in an e-mail the unexpected respose I got from my Endo. I think if he won’t sign the paperwork, I’ll just move on to another endo. Shame, because I liked him, but I think he may not a real good grasp on what it really feels like to have diabetes, to be in the middle of a perfectly wonderful day, then have a slight strange feeling in your leg muscle, do a quick BG check “just in case”, and discover a 50, with a unit or 2 of IOB-how that can really not ruin the day, but take away from a perfectly nice day. If I had the dex, I could have seen it coming, and maybe stopped it, before it messed with my day. Guess you just don’t understand that unless you live with it every day : (
Yep, exactly! I think a non-diabetic (doctor or otherwise) can’t comprehend the peace of mind of knowing where your bg is headed at any time. Finger-sticking won’t tell me whether I’m headed up or down and how fast, unless I stick my fingers every 15 minutes, and even that is primitive compared to an automatic reading every 5 minutes. It was a great security blanket knowing it would warn me if I was headed for a low or if my meal bolus was falling short. I liked it so much I was happy to lug the receiver around (this from a person who won’t wear a watch). My doc let me try out the Dex for 3 days. I was a skeptical at first but the peace of mind was so tremendous I’ve never forgotten it. Unfortunately, I doubt my insurance would cover it since I am not hypo-unaware, rarely go below 50 or above 180, and have never landed in the ER 
.
I got the signature from my PCP first. She is not really into D. She told me that she wants my A1C to be below 6% and that she would kick me out if my A1C ever came back above 6.5%. I can manage my D. I need her for everything else. When I showed her my dex during my last visit she was genuinely unimpressed. She is just not into D. All she had to say was: “Your A1C of 5.5% is that of a person without D. I wonder whether it is too low.”. I spent a couple of minutes explaining the importance of bg variability. Bottom line: I know what is good for me and my PCP helped me to get the insurance pay for it. That is all I ask for.
I never landed in the ER either. I thought that I was not hypo-unaware. I know now that I must have slept through thousands of lows. Lows just don’t wake me up. Since the JDRF study came out last fall the insurance companies are more likely to approve a CGM. I thought I never had a chance of approval. I never ever had to visit the ER and my A1C was good. You will only know when you send in the paperwork.
Find a different endo! I know you’ve heard it already, but if you aren’t happy, you need to find someone who will work WITH you, and not against you… that’s really important. Asking for a CGMS as a T1 should really be a non-issue, especially if you are hypo-unaware or you have any other issues that are difficult to manage otherwise - like overnight. If there is any struggle involved, it needs to be between you and your INSURANCE, not your Endo. I recently got a Dexcom and I got NO resistant from my D team at all. I was shocked, to be honest, because I didn’t even request it - my CDE asked if I’d like to wear one that the office had and sent me on my way all hooked up, and with the paperwork signed to get my own “if I wanted to”… no pressure, no hassle. Since I had met my deductible this year with my pump purchase, I figured I had nothing to lose… and it would be stupid NOT to go ahead and get one. I had no trouble getting approval from my insurance.
To be perfectly honest, being in “good” control doesn’t eliminate all of the benefits of wearing a CGM… just wearing it is reassuring most of the time. I don’t second guess myself nearly as much. I can often tell from the Dex whether to be more aggressive with treating a high, or if I’ll probably come down on my own. Or if I’m heading to a low and need to take steps to prevent it from it becoming a “bad” one. I can see how well (or not well) some combo boluses work with certain foods. I’ve also been able to catch bad infusion sites within hours (one tonight, actually, that pushed me up over 350, despite two large corrections in the 3 hours prior)… MUCH faster than if I was relying on fingersticks alone. I was able to take a correction shot, change my set, and now I have the reassurance of SEEING that my BG is coming down now, rather than just assuming or waiting another hour for the the next fingerstick.
I think the best analogy I came up with after wearing the dex for a few days was, It’s like driving a car on a road all by yourself, with no other cars around you to gauge your speed, and looking down at the speedometer every 2-4 hours to try to tell if you are “in range”. Now, I can usually tell if I’m really low, or really high, but seriously, even doing a BG check once an hour cannot compare to the CGMS. I think I better start interviewing Dr’s pretty soon, I’m not so sure my Dr, nice guy that he is, really “gets” it. Wish I could find a Doc who lived with D himself, preferably type 1, but someone who would understand the significance of a CGMS, not look at it like a nice luxary item : (
You don’t need a doc who is as passionate about CGMs as you are. He/She just has to sign at the dotted line. The rest takes care of itself. And since there is no downside for the doc to sign at the dotted line it should be easy to find one.
I’m starting to think my Dr is a bit out of date anyway, I wish I had the endo I had before moving out of NY, she was a great Dr, really worked with me, and was very good. I’m not so sure this Dr hears what I am saying, I find it bit hard to get a word in edgewise, and sometimes get the feeling he’s not really listening, that is a pretty yucky feeling to have for your endo. They have Dr recommendations on this site, right? I’ll have to try and find another one, even if he does sign the paperwork, I donm’t think he’s really working with me, yuck!
I tried to get my PCP to sign off on a pump. She said: “No way”. I am now waiting for my first endo appointment ever. But for a CGM you can get the signature of your PCP and be done with it.
I asked, he won’t, he leaves D stuff to the endo, since I pump, he won’t touch it. Too bad, all I really need from endo is scripts for the most part. It would be nice to find anoher endo like I had in NY though, she was really good. Wish John Walsh would come out with a book on CGMS, his insulin pumping book was excellent. I should probably skim through it again and apply the lessons with the added info CGMS can give me, if I can get one that is. If not, gonna go try and find another doc.
Thanks for the advice Helmut, you have truly incredible results on imjections, I wish I was that disaplined, but my life is typically only under my control for short periods of time, then bosses , husbands and kids undermine me : )
Discipline is one ingredient but maybe not the most important. I controlled my bg with urine strips for about 10 years. My good doctor only measured my fasting bg and I knew what to do to get a good number. Then I moved. My new doctor measures my A1C and it was in the 8s. He told me that I had to prick my fingers going forward. I vividly remember the conversation. I promised to be better and asked him to let me continue without finger pricks. He said: “You will not be able to achieve good enough control without pricking your fingers.”. I caved in. The insurance paid for 100 bg strips a month and my A1C went down into the low 6s. 15 years later I had a complication scare. I realized that A1C in the low 6s was not a get-out-of-jail-free card. I went to 12 finger pricks a day and my A1C came down into the high 5s. It took a lot of effort and planning to use the 12 bg strips at times of highest uncertainty. Now that I have the dex I typically prick my fingers only twice a day to calibrate. The dex is the first tool that gives me better control with LESS effort. Not to mention the piece of mind.
Bottom line: The better your tools the easier it is to have good bg control.
I feel the same way about having slept through lows, unaware. I had three episodes where I was in the 20’s and my mumbling woke up my spouse. I opened my eyes to see a team of medics at the foot of my bed, after my husband called 911. I am so thankful to have this amazing tool that gives me the ability to hang on to the brain cells I still have!!
Jacky – Like many of us here, I have had a front row seat watching insulin-dependent diabetes treatments for a long time, in my case since 1984. During that time only a handful of treatment changes occurred that qualify as “game changers.” These treatments have materially improved my blood glucose control and in doing so, my overall quality of life. I include in this list: home blood glucose meters, insulin pumps, insulin analogs (fast acting insulin designed by the new biotech industry starting in the late '90s), and finally the continuous glucose meter (CGM).
The Juevenile Diabetes Research Foundation studies have conclusively shown that wearing (and paying attention to) a CGM will drop your A1c, reduce or eliminate severe hypoglycemia, and reduce BG variability. For a doctor to ignore these undisputed clinical facts indicates a serious lack of judgement.
I would find a new endocrinologist immediately. I know locating a good endo is not easy but it looks like it will be well worth the effort. This serious lapse in judgment makes me wonder what else he is missing in your treatment regimen. I don’t require perfection from my doctors (they are only human!) but I do expect them to get the major decisions right. And I expect them to listen well and respond appropriately.
Good luck. CGM therapy is definitely a treatment worth fighting for.
The more I picture this, it is hard to fathom your endo’s opinion. Even if you don’t meet the usual criteria for coverage, what’s his downside and why not try? Do docs experience subtle and maybe not so subtle pressures from insurance companies?
I’m not sure what is your quickest route. It seems like if you were firm with him, he might fill out the necessary paperwork. You’re not asking him to agree that you need it, you are asking him to fill out the letter of medical necessity based on your clinical factors and it is up to the insurance company to decide. Don’t expect him to understand the peace of mind because his pancreas works and therefore he can’t get it. I agree with Terry’s sentiment that CGM is “game-changing” technology for the treatment of diabetes that increases quality of life by allowing you to catch lows and highs much, much sooner.
I don’t understand your endo either! You have had diabetes for so many years and are on ACE inhibitors and really need to keep glucose levels as tight as possible. I would not take no for an answer and would find an endo that will support you in taking care of your health. Don’t let him put you off. This is your body, your life, your decision. I would call up Dexcom and ask them if there are endocrinologists in your area that prescribe Dex frequently or just shop around on your own. If an endo did not prescribe the appropriate number of strips, type of insulin, pump and/or cgms I would find one who does.
Kiss your endo goodbye immediately, and find one that has thinking inline with the 21st century. Because the next thing you know, he’ll be trying to find you some pork insulin and convince you that urine testing is okey-dokey.
Any doc who refuses to write a script for CGM for a patient that is eager and wants it is committing malpractice. Although I had been running A1Cs in the low-to-mid 6s (i.e., supposedly almost perfect), I never appreciated my blood sugar spikes and dawn phenomenon until I got a CGM. I’m in even better control now that I have a CGM.
Shame on your endo.