Controlled vs. Uncontrolled

So, looking at my on-line medical chart, my last endo appointment she put: Type I (juvenile type) diabetes mellitus with neurological manifestations, uncontrolled (250.63).

What determines controlled vs. uncontrolled. I've always been 'controlled' so this is a bit confusing. OK, yes...I had some 40's and 280's when she saw me...but hey, I have type 1 diabetes, it's part of it. Does it matter if it's diagnosed either way? THANKS!

I've never understood the line between controlled and uncontrolled. As a kid, I always aimed for a (doctor prescribed) 7 a1c, and usually achieved that, but I was always labelled as "uncontrolled" on my charts. I assumed that's the way it was until I moved to Seattle and my new endo asked why I had elected to get a pump just before moving as my last endo had in his notes that I was "well controlled on shots." Since he never told me that, I can only assume that it's because my a1c is now >6 but <7? It didn't occur to me at the time to ask, but I'd be willing to guess that different endos have different ideas of what well controlled is. I'd only worry about it if it starts to get in the way of the treatments/insurance payments you need (though, I have never noticed a difference...)

thanks, my last A1C was the highest it's been since diagnosis, 6.7%...but I thought they still considered that 'controlled' but she diagnosed it uncontrolled. IDK?

I've challenged my doctors over the years regarding these diagnostic codes. I had one endo that consistently coded me as type 2 diabetes uncontrolled. I'm a T1D and like to consider myself as controlled.

I know that insurance companies use these codes to pay claims. It didn't seem to matter to my insurance company whether I was considered controlled or uncontrolled.

It wounded my pride a little bit but the doctor didn't seem too concerned. I'm thinking that it's a subjective choice for the doctor and maybe s/he has more latitude with time spent with a patient coded uncontrolled vs. controlled. This is just speculation on my part.

I'll be curious to see what others have to say. I'm happy as long as I retain access to medical care, my Rx writers, and timely insurance payments are made to my providers.

yeah, i do have neuropathy but i was diagnosed with that a year or so ago and still not uncontrolled prior. oh well, guess I'll ask my endo. As Terry stated, it does kind of 'wound' the pride a bit...6.7% isn't THAT bad..ha!

In some of your posts here, it seems like you've moved from therapy to therapy in the time that I can recall. I would have a hard time saying what exactly you do as I have a hard time following some of the threads, plus they're mixed up with other people's threads. It might be that the doc perceives that as somehow a lack of control, or perhaps that the doc feels like he can't control it because it's too far outside of what he has learned to manage, simpler (ha ha) patients doing one thing and they just tell them to turn it up or down and see what happens 6 months later. If somebody with fairly advanced skills who is good at articulating all sorts of things that might be going on, a doc might throw up their hands.

Another possibility is that they just did a typo or checked the wrong box. I was recently "cured" of T2 when my doc said "hey, you're not type 2 are you? I always thought that you were type 1. I just changed it..." which I thought was rather bizarre.

ha, there's only two types of therapy, AR - pump or MDI, pump hasn't worked for me yet so I've been back on MDI for a while. Same endo, no changes. think it could just be the highs and lows she saw on my CGM - meter print out. Maybe if one has lows in the 40's they consider that uncontrolled, but she also said my CGM looks like just about every other type 1's, I'm a bit confused. The goal of the appointment was to help me get 'better' controlled again she wants me on the pump..ugh! thanks!

Perhaps it comes from your own reports, Sarah, which at least what I have read express frustration with both MDI and pump and the feeling that you haven't been able to establish satisfactory dosing regimens on either one.

It may be as simple as the fact that your insurance may not cover a pump unless you are listed as uncontrolled. Sometimes to justify to the insurance trolls, you need the buzz word/coding that floats their boat.

thanks, have 2 pumps already paid for, supplies too before 'uncontrolled' was listed. my insurance covers most of everything. zoe, i'm always frustrated, ha...but yeah, my numbers were both higher and lower then what they'd been before, higher highs, lower lows, guess I am 'uncontrolled'...i feel I AM struggling with 'control' on MDI and have been, but...we all know this already. She also stated a goal is for me to INCREASE carb intake. Most endos I've seen don't encourage low carbing for type 1's, at least not in my case anyway...but that's another thread. I, for whatever reason, really do not want to be on a pump, I hated it - all of it, but I never gave it enough time, probably. So i'm feeling like I have no choice if I'm ever going to get this nasty T1 under 'control' and wake up to a good number. ugh!

I just checked your A1C; unless it's outdated, I'm not sure I'd call 6.1 "uncontrolled." Sometimes it's more about how we feel and our degree of acceptance than the actual numbers. Then there's the old "luck of the draw" I always talk about how that helps formulate our expectations. Some people feel uncontrolled if they have a blood sugar of 130 or an A1C of 6.0. Others would kneel down and kiss the earth!

last one, checked when I saw her was 6.7% that's still not that bad. one minute she's saying my numbers look typical for a type 1 then the next i'm uncontrolled and I don't think it has to do with my Dx of neuropathy because I've had the Dx for at least a year and have had endo visits and A1Cs since then. IDK...I think it's the lows and highs and the fact that I'm having to wake every few hours do do novolog cause levemir doesn't really work for me, DP, etc..and I still wake to nearly 200 every morning. I'll ask her. Honestly, I don't think it would matter if I felt uncontrolled or controlled, she's the one making the call, not me...ya know.

Sarah - What does good control look like to you? Can you quantify it in terms of waking BGs, average BG, and time in your target range?

Or maybe it's a less numerical description like "having more energy for the things I like to do."

I find your doctor's suggestion regarding increasing carbs as unhelpful. Perhaps you could humor the doctor and show, by way of annotated CGM graphs what "more carbs" looks like.

Hi Terry, good control, I like an A1C around 6%, that's where I've been before. I'd like to be able to sleep through the night without dropping low at 12am, then spiking and waking up close to 200 every morning, seriously, every morning and unable to get my BG's down until afternoon...unless I inject novolog through out the night. Other then over nights, I do OK. The carb comment was because I probably don't look healthy and need to eat more. I actually do OK with carbs.

Why don't you ask your doctor? That is what I would do if I had a question about my medical chart. I am not a doctor but a long time diabetic and will suggest that waking with 200 every morning most certainly is "Uncontrolled". As for the question of does it matter, I think it may matter in regard to what services and coverage are available to you.

yeah, i will...i just saw it today on-line when filling an insulin Rx so I didn't realize she coded 'uncontrolled'. I agree, waking up to 200 is a frickin nightmare and I cannot get it better no matter what amount of levemir I take. thanks.

Well if your a1c was all I could judge off of, I'd say your endo is trippin' and you're controlled pretty well. But since you're waking up with 200's? No , but DO NOT BLAME YOURSELF , this sounds like dawn phenomenon? Possibly? Even though you're saying you don't go low at night, it sounds like dawn phenomenon to me? High fasting numbers tend to be that I think? That or maybe you're eating too much fat at night and it's hitting you in the morning? Regardless, I don't really love the uncontrolled vs controlled label as some considered uncontrolled diabetics avoid complications and some diabetics considered controlled still have complications.

While it's personally demoralizing to be referred to as "uncontrolled" with diagnostic codes, keep in mind that some of this is a bit of "tweaking the system" by doctors to make sure insurance will cover treatment.

In my case, for example, I was truly uncontrolled last June, a1c 11+. That, and some heavy advocacy by my endo, is what got me the Omnipod and a CGM even as a T2.

I'm now superbly controlled, because of these tools. My endo and I now fear insurance company denial to continue these devices. Ironically, it's likely I'd get out of control again.

Hi Sarah, I'd urge you to give a pump another try. I fought the pump idea for 25 years. My endo didn't push because I was doing well and he said any improvement from the pump for me at that time would have been marginal. But then I started having crazy drops at night of up to 100 points followed by DP in the morning hours. Your description of your nights and waking up to 200s sounds so familiar.

At that point, I agreed to try a pump because I was so desparate to be able to sleep at night. It made such a big difference for me. Of course, it's never going to be easy or perfect because we all know that as soon as you think you have it nailed down, everything changes. And nights and mornings are hardest when those changes hit. But overall, between a pump and a CGM, I feel more in control now than ever before.

It took me a good year on my pump though before I felt like I really had it licked, so if you do give a pump another try, give it time and be patient. I know that's easier said than done. :) Take care.

I think we need to be careful about getting all spun up on the diagnostics codes assigned by doctors to our cases. These codes are primarily used for insurance reimbursement. Your doctor may code you as an uncontrolled diabetic in order to ensure that the insurance company approves some escalated treatment. And you better believe that if you are not coded as having neuropathy then neuropathy treatments that are billed to the insurance company may well be denied.

If you really want to know what your doctor believes your diagnosis to be and how well he feels you are doing in controlling things it is better to just ask directly.