I noticed at my last Endo visit that I had the little box for “Uncontrolled Type 1” on the paper my doctor completed with billing codes. My doctor mentioned that I have had too many lows and I agree. But, this is making me wonder what is normally considered to be “Controlled”. I know that I have had some higher A1C’s in the past but I have gotten them lower the past few years down to 7 and now 6. Please share anything that your doctors have told you in the past. Thanks.
I am wondering if your insurance provider allows more test strips/month with a diagnosis of "Uncontrolled Type 1?
I don't know if you can quantify this exactly, though I would think that billing codes being listed as "uncontrolled" would be based on A1C and I would hardly consider 6.0 "uncontrolled"! But if I had frequent serious lows (as in 50s or lower) balanced out by frequent serious highs I would not feel good about my own management. I think we all have different levels of "control" we are satisfied. When I read about someone bothered by "highs" of 130 I think I would be very happy if that were me. I just spoke with a Type 2 friend who was bothered by 70s which to me are good numbers. Many doctors think 180 or even 200 is fine, though, so I tend to think their definition of "uncontrolled" would be a lot more extreme, as in daily forays from 50 to 300, what used to be called "brittle". I also think of "uncontrolled" as someone who doesn't really manage their D, hardly tests, doesn't take appropriate medications, etc. I'd be interested in knowing what he means by the term. I did have a period where I had a 5.7 that was composed of too many highs and lows and I wasn't happy about that, but I still wouldn't consider it "uncontrolled". Maybe I'm making too much of the term.
To answer your question though, I think we are all very different in our goals. For me, good control consists of being in target range which I define as 60-140 say 80% of the time, with an average # somewhere 120ish. That's just me though.
I think it depends on the individual and the endo.
My old endo thought that an A1c of 7.3 was "perfect" for me and said he would be happy if I could get 50% of my readings in range.
My new endo (who has Type 1 himself!) said on our first appointment that he wanted to get my A1c of 7.3 down a bit.
For individuals, there are some here who have literally never had an A1c above 7.0, and there are others who have never had an A1c below that range. I can count on one hand the number of times I have had an A1c below 7.0, and I have had a grand total of one A1c below 6.5 (which was accompanied by too many lows). My definition of what was "controlled" would be very different from someone who has had an A1c of 5.5-6.5 for most of their life.
My current A1c is 7.2 which is significantly lower than it has been in recent history. I don't feel like I am killing myself trying to maintain this control (which I have felt in the past). My numbers generally make a LOT more sense and don't seem completely random. At this time, I'm totally happy with my control. I will work on it at some point, but probably won't be as strict about the goals I set. (Years ago I was set on getting an A1c below 6.5, and when I still hadn't achieved it after five years I got completely depressed and burned out. I do not want to repeat that!)
I agree with Zoe that the term "uncontrolled" would be best used only for individuals who don't take steps to control their diabetes. If you have an A1c of 6 and too many lows your control can use some work but nearly all of us can use some work on our control. It's the nature of the disease. I wouldn't put much weight on a billing code. You were uncontrolled at diagnosis and the billing code may never have changed..
Maurie
That checkbox is for ICD-9 billing code purposes. The reason I know this is because at my second visit, my Endo told me how well I was doing, but when they gave me the fee slip to drop off at the desk, I noticed code 250.3 was marked which was Uncontrolled Type 1 Diabetes, but the only other choice on the slip was Uncontrolled Type 2 and Type 2, so their office had no other option since they chose not to even list Controlled Type 1 as an option for anyone.
I have never had a billing sheet that said my BG was under control, they always say out of control. My A1c has been under 5.7 for the last 8 years. I don't believe my Doctors will ever use any other code. My pump and CGM are justified because I have very bad Dawn P. and zero Hypo sensitivity....My doctor must supply a letter of medical necessity along with a RX every year to cover my CGM and pump.
My A1c is almost never above 5.7 and I have had many 5.2's and 3 years ago I tried for a 4 but 5.0 was as low as I could get.
My BG average is around 110 and I have maybe 2 treatable lows every month, my Doctor would never recommend my treatment plan but quietly likes my results.
you have zero hypo sensitivity and you were pushing for an A1C of 4? whatever, at some point, this becomes ridiculous and I just am getting tired of some people posting this dangerous nonsense and maybe influencing a newly Dx'd Type 1 who might strive for that low of an A1C. An A1C of 5 is too low, for pete's sake.
How is it dangerous nonsense?
no hypo awareness and trying to push for an A1C of 4 for a type 1 diabetic...OK, that makes sense...pleeeeaaaassseee! Unless I misread this post...I'm hoping I have. Geez, hope I get behind the type 1 who has no clue his/her blood sugars are dangerously low behind the wheel yet still pushing for an insane 4% A1C.
I must admit, I'm with you here. If I had hypo unawareness (which I do, to a degree) I would be striving for a somewhat higher A1c, not a lower one.
This out of the mouth of a person with type 1 diabetes for 53 years and a well known diabetes specialist in my part of the woods, Interior of BC, Canada ..as heard today at his World Diabetes Day talk to professionals (and me ,lol ) ...he is not on a pump , has tried 3 x , has done marathons , travels to exotic places , loves photography ..an A1C of seven for the majority of type 1's is hard to get without many low's ...I respect this Doctor's point of view ...he also maintains diabetes treatment should be personalized ( sp ??) ..so going by the book is not the answer .I hope I expressed his views without getting side tracked ..
I take great offense to your "shame on you comment"....
Sarah... I have never had a car wreck in fact never a speeding ticket, I have spent 30 years getting my BG into almost normal range, this did not happen through irresponsibly or over night. I also attend many local insulin user group meetings and see many indaviduls that show up with a sack full of french fry's, a burger and stuff their face, cry and blubber about how they will never have normal BG and talk about their last visit to ER, they just drove their car into a ditch last week and their life sucks.
I run and own two small company's, have type 1 diabetes , I have raised two children, and have grand children. I'm also a Vietnam veteran, a Cancer survivor, and Yes I have Zero Hypo-awareness but I have adapted to it, I have learned how to live with more than one chronic illness, I had liver Cancer, Chemo, and a Liver transplant on July 23 of 2012, I was out of the hospital in 6 days, back to work in a month. I am now back riding Harleys and other high performance motor cycles, go to Church on Sundays, Life is "GOOD"
One thing you should have learned from the DOC buy now is that many of us have achieved stellar results, far better than our Doctors or apparently someone like you thinks is possible. We do not all have / or feel like we have one foot in the grave and the other on a banana peel. I wear a CGM and if my BG is in question I test and correct before driving, I also have the luxury if needed to have someone drive me when necessary. There are many indaviduls out there that would like to try for a low A1c. When I was raising my kids my BG took second place and suffered but after they where off to college and started their own lives I found time to push for perfection. When I made it to 5.0, I was cycling 20 miles evey morning before going to the office and riding in 100k and 100 mile rally's on weekends. It took me a year just to figure out how to ride a bicycle 20 miles and two more years to get to the 100K mark . I think there are many individuals that have no idea how hard we work to achieve a near normal A1c.
If you can do it it's not bragging...and there are many DOC members that deserve some credit instead of a shame on you for posting a low A1c...
i completely agree with you. i have been diabetic for two years now and have consistently been in the 5s, except for one 6.1. dont get me wrong, i dont think 6.1 is a bad a1c to have, but psychologically, i am comfier in the 5s.
the technology many diabetics have allows for lower a1cs without the rollercoaster highs and lows. i dont have a cgm to depend on so i must test loads and know what everything i eat will do to my blood sugar in all types of circumstances. i am completely willing to do that if it means i am almost like a normal person. it is a lot of work and responsibility but i am worth it.
I seem to run 100-140 most of the time
This is something I probably should check into.
I haven't been above 6.0 in at least 2 years, but I was given a prescription for a Dexcom and Insulin pump based on incidence of hypos. My endo is typical in that an A1c under 6 gets a Pavlovian concern over hypo incidence, but he never tells me to come in next time with a higher A1c.
Still, I wonder what box he had to check to get the prescriptions approved.
I raised the uncontrolled vs. controlled diabetes check-off box on a lab order sheet with my doctor. It was during a phone follow up call and he just said, “Let’s talk about it next time we meet.” We never did have that conversation. I moved on to another doctor for other reasons. I remember feeling judged when I had an A1c under 7% that I thought justified the controlled designation. When I thought about it more, this uncontrolled vs controlled seemed more of clerical importance than anything else. It’s just a code that the doctor billing office and the insurance payors need to have filled in.
What I really wanted was an external expert, like my doctor, to validate that I was doing a good job. As time went by, I decided that I didn’t need that external validation. What I most wanted was good real-world BG control and that I had to earn slowly with dispassionate statistics. I needed to measure a good BG average yet also keep a lid on time spent < 70. I now see A1c as simply a statisical tail that must follow a reasonable average, low time spent < 70, and a large fraction of time spent in range.
I don’t look to my doctor to grant me an OKness with my BG management performance. In fact I see most clinicians’ perspective muddied by the quantity of patients s/he must see. They’re not used to seeing someone like me. I think the “smile and nod” posture, get in, get the Rx’s, get out routine as the most rational. They can check whatever box that lets them stay in business. I don’t care.
I was under the impression only a high a1c with someone who wasn't treating their D enough would be uncontrolled. I have had a1c in the range of 4.7-5.7 for the past few tests-I went into that range from 13% at diagnosis and then 8% then to 5.1%: At 5.1% he wrote controlled type 1 in the diagnosis code I believe… not sure what was written in there before that. But he has never told me I'm uncontrolled so I really think this is your endo who is afraid of hypos and lawsuits etc.
Yeah, and I should definitely add that in every report I've seen my endo actually write out, he most definitely puts that my diabetes is "controlled" based on my A1c.
I haven't seen the specifics of what my insurance company requires for a CGM but it seems to come down to that catch-all designation of a medical necessity, but I haven't had that particular prescription refilled in couple of years.
I did get a notice from my insurance company to provide certain pieces of documentation before they would renew support for my Omnipod this last time I had to get that script refilled. It seemed like basic stuff to show that I was, indeed, an insulin dependent diabetic rather than anything that showed a particular level of control.
Yeah, I was really spoiled, and set in my current ways, by my first endo nearly 30 years ago This was even before I knew about any newfangled devices. As a newly diagnosed, honeymooning, athletic, 20 year old, I had A1cs routinely in the high 4s and low 5s for the 2 years I was in his research study. I received nothing but support, encouragement, and a lot of praise for my efforts from the endo and his entire staff. I was certainly warned about hypos, but I was never taught that they were a danger associated with normal A1cs.
When I relatively recently decided that it was time to go back on the wagon, I had to get a new endo since my previous one retired. Only then did I find out about how reticent Endos can be about low A1cs.