Definition of 'controlled' diabetes

Dave:

You make an interesting point. However, I would argue that what you describe is a hoped-for result of good glycemic control … but not necessarily a definition. As I understand it, there is a strong correlation between low A1C and fewer complications, for, example, but that is not a guaranteed result. I’m lucky enough to to be nearing 5 decades as a T1D with precious few complications, but I KNOW there there are people on this forum who consistently display SIGNIFICANTLY better glycemic control than I, but have not been so lucky.

Certainly bringing up previous eras in T1D history makes me realize the standard of good control of one’s diabetes must have changed dramatically. After all in the POS (pee on stick) era when there was no HbA1C or many other tools, what was the definition of “good control”? Probably something like not many visits to the ER and/or hospital. Even once we got to the finger stick world, I now realize that a few measurements pre-meal likely gave one a very rosy estimate of exactly how good they were doing. It was probably only when HbA1C became widely used that more quantitative definitions of good glycemic control began to evolve. I expect that a number of us lucky enough to now be using CGM were initially surprised by the variations seen with the benefit of 288 readings per day.

Even with all the tools I now have, I struggle to get to the edge of what is now considered good glycemic control … and I now know that for many years I was deluding myself to think that I was well-controlled even by the lesser standards of previous eras.

Thank you for your frequent, informative, and interesting contributions to this forum.

John

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A sentiment that I thought about expressing but I held back. I’ve learned that there is no definitive cause and effect relationship between glucose control and occurrence of secondary complications in me. I’ve long ago made peace with the idea that improving my glycemia will help reduce the risk of complications and accept that that is not an absolute reality.

Like you, I’ve gone through extended periods with poor control of my glucose levels. I do live with some diabetes complications but have avoided others. I don’t have chronic kidney disease, for example. How did I avoid that?

I can only conclude from this circumstance that genetics or just plain luck accounts for this good fortune.

I agree with you, John. Complication occurrence is not a reliable indicator of diabetes glucose control.

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Wonder, does this endocrinologist understand we “hate” diabetes too? I appreciated the comments around our supplies/techs as it relates to insurance/payment. As a proponent of Medicare for All, the insurance/payment problems can and need to be addressed. Finally, historically, most physicians are overloaded, irregardless of the patients they serve. My 2 cents.

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Lorraine:

Certainly it is clear from reading this forum that we all share in our dislike of dealing with insurance-related delays, refusals, inconsistencies, and foul ups, I actually feel SORRY for the physicians, clinics, equipment manufacturers, equipment suppliers, and pharmacies that have to deal likely with THOUSANDS of different insurance plans, coverage rules, formularies, etc. What a monumental waste! And we wonder why this stuff is so expensive?

The rest of the world must laugh at what the US spends on medical care relative to GDP as compared with our aggregate health care result, eh?

Have a good day.

John

p.s. It’s not only the endocrinologists. I was recently talking with my ophthalmologist who is a retinopathy specialist after we quickly finished my annual visit. I was surprised to learn that a significant fraction of his patients see him every 2-4 weeks! Wow!!! Kidney docs with folks on dialysis, the list goes on …

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Thanks for digging that up, @John_S2. I can never find it. I’ll admit that I haven’t read it, I just look for the TIR guidelines. But, when I’ve glanced through it, they makes some really helpful, thoughtful suggestions. I’m gonna read it. Thanks for suggesting that. Its interesting.

My diabetes is extremely well controlled. In the past almost 20 yrs my A1c has been 4.6 to 5.6. I had one 5.9 when I was getting a wholly unrelated disease SIAHD. I did all of this without any technology. Also for part of this time I was working part time and taking care of my parents 1/2 time until they both died.

I am retired now and have had type 1 for 61 yrs. My first 22 yrs of urine testing, and some uncontrolled eating etc left me with an A1c of 10 and the beginning of retinopathy. The A1c test was brand new back then and I was shocked with my reading. I was then 30 yrs old.

I quickly cleaned up my act and kept my readings around the 6.5 range for close to 20+yrs. except when pregnant when my A1c was much lower. By age 31 my retinopathy entirely cleared up and at 69 I still have no retinopathy.

After 50 yrs of diabetes I needed two heart stents. I figure my first 22 yrs of uncontrolled diabetes didn’t help nor did my 11 years of low carb (30 carbs daily) eating, or my genetic history.

I had no peripheral neuropathy until I tried the generic form of Crestor which says on their site that the drug might cause neuropathy. It certainly does. I have filed a complaint.

I use a GP, who looks at my A1c and has never asked to see my glucose readings. I make all my own treatment decisions. I had the help of an endo when I was pregnant only.

I can’t imagine putting up with anyone telling me how to take care of my diabetes while I am doing so very well. I know that my 11 yrs of eating low carb was not healthy for my body, but I do think that Dr. Bernstein has done a remarkable job turning his type 1 complications around with a non diabetic A1c. I have no idea what he is saying about time in range. He has been a type 1 for 70+ years, is in his mid 80’s and is still practicing as far as I know. I really admire him.

Oh, when in the hospital before my SIAHD was diagnosed, the hospitalist, an internist, was upset when I had a 70 glucose reading. He told me that my readings should never be under or over 100. Yeah, right.

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My point was that some people can get by with an average glucose level higher than others. There is no set level (A1c is but one measure) that will protect everyone with the disease. The problem is that us diabetics have cellular differences from non-diabetics that no amount of insulin or “great control” can overcome. Some are more prone to the effects of those diabetes differences than others. The best we all can do is simply to do our best and hope for the best. “Good control” doesn’t guarantee a thing–it just reduces the odds across the diabetic population, to have serious complications.

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A couple of followup comments:

@Dave44 , I agree completely that we are all different and there are no guarantees. But, I still believe that evolving standards of glycemic control are important to endocrinologists and to us T1D to try to increase our chances of avoiding long term complications, just as there are guidelines for blood pressure, cholesterol, and BMI that are designed to reduce the risk of, but not guarantee freedom from, other complications and problems.

@Marilyn6, that is an impressive tale you tell. Brava!!!

And I am struck by the line about the hospitalist who thought you should never be above or below 100 mg/dl.
@mohe0001 surely will sympathize with that pronouncement based on her experience on another thread. My guess is that most of us agree that ‘never’ and ‘always’ are simply not in the lexicon of a practicing T1D.

Thanks all,

John

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Interesting experience today when I went to pick up some prescriptions. One was for glucagon (you know, the little kit that has hard to understand instructions). Prior to this, I had received them free or nominal co-pay, today they wanted $76 for the thing. I said to the clerk, since the instructions are so hard to get through, I could be dead before anyone figured them out…hahaha. Turns out she is a T1 also, and she agreed. So I declined taking it, feeling like someone calling 911 would be more expedient than having the glucagon.

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This varies by state. I’ve had diabetes over 40 years, been driving the whole time. I’ve never had a doctor sign a form to get a driver’s license.

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Its an MN and CA thing. Couple other states, as well.

Huh? I live in CA and have never had any diabetes forms for my DL. Neither has my wife.

Been a T1 for over 20 years and switched doctors last year. My first A1C with him was 7.2 and he documented me as uncontrolled. I immediately switched doctors.

Once I was sick as a dog (stomach bug) and had a doc tell me I was uncontrolled based on a single random bg of 180.

My only thought was, wow, that’s great, my bg was 400+ just hours before.

Officially, in ICD-10:
"First, coders will need to have further documentation of hyperglycemia or hypoglycemia as there is no default code for uncontrolled diabetes. Uncontrolled diabetes is classified by type and whether it is hyperglycemia or hypoglycemia.

The term “uncontrolled” is not synonymous with hyperglycemia. The term “poorly controlled” is synonymous with hyperglycemia when referring to diabetes in ICD-10-CM.

In ICD-9-CM, uncontrolled diabetes had a specific 5th digit to show that the diabetes was controlled or uncontrolled. This is no longer the case in ICD-10-CM. If the patient has documented uncontrolled diabetes, without further clarification of hyperglycemia and/or hypoglycemia, a query is necessary to clarify which type the patient has. If the patient does have documented hyperglycemia or hypoglycemia in addition to the diagnosis of uncontrolled diabetes, ICD-10-CM codes would be used to show that the diabetes is with hyperglycemia and/or hypoglycemia.

Is uncontrolled and poorly controlled DM the same?
No, uncontrolled and poorly controlled are not interchangeable when describing diabetes in ICD-10-CM. Uncontrolled can mean either hyperglycemia or hypoglycemia and is indexed as such in ICD-10-CM. Poorly controlled means hyperglycemia per the ICD-10-CM index." https://www.hiacode.com/education/uncontrolled-diabetes-mellitus-in-icd-10/

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I have had many Glucagon kits over the past 40 years and never had it used. My parents were supposedly educated in how to use it 40 years ago, and I tried to teach my wife, but I think they’re all too scared of it.

I have had (twice in 40 years) an ambulance show up and they gave me IV Glucose or Glucagon. If you have a choice (and I know we probably will not!) go for IV Glucose. A full dose of Glucagon did a real doozy to me.

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A huge frustration for me! Many years ago when I was in my 20’s and battling so very hard day in and day out, trying to get a handle on my blood sugars, I saw on my chart “uncontrolled”. I almost started crying! I worked so hard every day and just never saw the numbers I wanted or my endo. The next visit we talked about it. And she said, the main reason it was labeled that way was it gave her more power to write prescriptions and get newer tach for me. It lead to a pump, which was great! And once a CGM came into my life, that “uncontrolled “ disappeared!
I feel insurance companies rule everything. What we can and can’t have. What insulin, meter, pump, CGM we can use or if we can. Or now being denied test strips or enough due to using a CGM.
My “controlled” versus the next persons “controlled” are two different things. And I am so thankful I have a doctor that I can talk to about what goals I need for my healthy good enough. Not an insurance company good enough!

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I thought it was ironic when I saw doctors notes that said “Not specified as uncontrolled”.

I don’t think we get credit for controlled, even with good/target A1Cs, since they “may” involve some hypos.

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Don’t tell them that. Your getting off like a fat rat…unless you don’t take insulin. They dont care about you if you don’t take insulin.

Wow, @Tim12. I think that’s a legal answer.

That sorta proves that there is no hard and fast rule regarding classification. Its pretty vague since diabetes is synonymous with having hyperglycemia and hypoglycemia. By the book, I suppose most of us are poorly controlled and uncontrolled (at least, the type 1’s). Type 2s might just be poorly controlled.

I know that that happens, @Sally7. One of my original Docs had a talk with me warning that she was gonna write stuff in the record that might cause implications down the road. But, that’s how you get medical supplies.

The risk is that we may have lost the ability for an honest 2nd opinion in our lifetime, because that stuff follows you in your medical record and Docs tend to parrot what Doc’s before them wrote down. Electronic medical redords follow you everywhere. Sometimes they write down crazy stuff that I say. I hear it parroted back to me and I cringe because I KNOW that I had no idea what I was talking about when I said that thing - I wanted a 2nd opinion from them about if my own, crazy thoughts were crazy.