Diet (carb) compliance and the diabetics you know IRL (in real life; a.k.a. not just online)

1

I am consistently impressed with the efforts made by the TuD community as a whole in terms of taking this beast seriously and working hard to maintain control of their health. There is no question that it is hard even for the most compliant of us.

However...!

When I look at the diabetics I know at work, family, school, and everywhere I go in the "real world" I find that I am an island of control in a sea of folks significantly out of control. I am amazed that many of those people know the details well. They know the underlying metabolic functions and what can be done to address them. They know the complications and the statistics. Yet they persist in having 5 slices of pizza, or saying "I'll have the diet soda, but I can't give up my evening ice cream or my pasta for lunch."

There is a broad spectrum of control of course. Not everyone is going to be in the "5" or even the "6" club (referring to groups on TuD based on A1c #s), but everyone here is here because they care and are trying. I seem to keep finding a lack of that effort and dedication in the people I know and meet and that freaks me out a bit. How do you not take this beast seriously.

So my question to you all (finally!) is: do you know/meet people in the real world that take their diabetes seriously and work hard at controlling it, or do you find those people few and far between?

I do not in any way mean to come off condescending on this issue. Getting my own diet and bg under control has been a monumental task (and remains a day to day challenge). I am simply astounded by the situations I keep finding people in and am sincerely concerned by it.

2

I think you are absolutely right, Chris, that people who are a part of the DOC (diabetic online community) have a higher overall rate of good management. As for people in real life: I started a Type 1 Women's Group and met a lot of women whose control, of course, varied, but who were all pretty involved and working at managing as best they could. I think anyone who reaches out to others, whether in the DOC or in a group, does better than people who manage in isolation with just their doctor to assist. I do say, and I hope nobody takes this the wrong way, that Type 1's overall have better care because we are kind of forced into doing so...we have no choice. There are, of course Type 2's (including some of my favorite people on TuD!) who take excellent care of their D, but in general, the Type 2's I know in real life are on outdated treatment regimens from their doctor, don't count carbs, and have less than optimal control. To prevent anyone from taking this personally: I've shared on here before that I was initially misdiagnosed as Type 2. I was in the process of retiring and moving to a third world country, so it was a hectic time. I was put on several oral meds, told I didn't need to change anything about my diet because "I ate pretty healthy" - my own statement as I was a vegetarian and ate no sugar. But I ate lots of carbs in pasta, rice, cereal, etc. Despite this, I tested a couple times a day and my numbers were mostly in range for 15 months until they started to rise and I was rediagnosed as Type 1. That was when my true learning began.

3

This is just my opinion (as a Type 1 with Type 2's in my family and in my workplace) but I think the medical community is partly to blame. I know that their patient loads are heavy in most cases...it takes 3 months lead time to get an appointment with my endo and he is no longer accepting new adult patients, only juveniles. But I think the docs *downplay* the diagnosis with many Type 2s. This has been the case with the Type 2s in my life. Just *cut back*, get a little exercise and take this pill and you'll be fine. To many people, that translates to ok I'll skip the dessert and eat what I want for dinner.

Many are initially told their blood glucose level is "elevated". No discussion of numbers or what it means or how serious it is. They're told to cut back on their eating and sent to a dietician who tells them that they should eat 60g carb per meal plus 15g carb snacks in between. They're told they only need to test once or twice a day but, unless they're on insulin, they can't do anything about high numbers when they do test so it's easy to see how one could become frustrated to the point of feeling why bother.

In some parts of the country there are few resources available to PWD of either type...no support groups, no training, and few endos. I live in the largest city in my state and we don't have a JDRF or ADA local chapter here.

It's a sad state of affairs to me. I know how important research is and want a cure one day as much as anyone but part of me thinks that it's ridiculous that so much money goes into research when the care for those already diagnosed is subpar in many places.

4

I absolutely agree with every word you said, smileandnod. I think doctors are overwhelmed by the increase in Type 2 cases, and they set very minimal standards for their patients. I don't know if this is changing with younger people, but the middle aged type 2's I know are still very much into "I'm doing what the doctor said" I was at a friend's house for Thanksgiving a year ago and her type 2 husband went low because he was waiting to eat. He was rude/borderline abusive to me (we didn't have a good relationship to begin with). He was on NPH (prescribed by Kaiser, who I think often gives you the cheapest treatment if you don't advocate) NPH is known for lows if you don't eat on a rigid schedule. He has made no diet changes so I'm sure after he ate the stuffing, the yams and the pie(s) he was through the roof high. I believe he was only told to check his fasting. (On insulin!). He and his wife think I "obsess" about my diabetes. Did I mention she is an RN? It's very sad and probably not atypical.

I agree that all the money should not go to research but some to services. I'm shocked you don't have a JDRF in a major city!

5

Before I was diagnosed with Type 1 diabetes in 1995, I knew several people with Type 1 who were nothing short of suicidal in terms of their care, and their lives were living hell imo. I was horrified. When I was diagnosed, I was determined that I would not be like them. Because I am part of the DOC and also a Type 1 group, I see lots of people who take amazing care of themselves. No, it sure is not easy. I also have seen some scary stuff. I have a close friend who now has Type 2, diagnosed probably 15 years after we became friends, and he takes amazingly good care of himself. It was a terrible emotional blow to him, but he is a role model. I just think that it takes enormous daily dedication to manage diabetes.

6

I am lucky to have an older relative who is better than I am about his dietary choices and exercise. He eats mostly salads and protein, and tries to walk as much as he can.

He's been a real inspiration to me.

7

T2 is unfortunately a disease that can be ignored especially in the beginning. The recommended course of treatment where oral meds rule sets a lot of people up for failure. I was one of those failures. You are given a handful of pills and told to swallow these. And Oh yeah you might want to exercise and watch what you eat. Almost every T2 I've met starts with good intentions but soon fall into the trap because maybe their will power was not strong enough or they just didn't have a clue. Then the frustrations set in and it's easy to fall into indifference.

That's the reason that the DOC does much better than the general public. Here we get support and encouragement and we get knowledge. Being on this site has helped me greatly. I think that the best thing I can do for a fellow T2 is to get them involved on line. Maybe they will learn to take control of their care and not be stagnant in their treatment.

Gary S

8

I agree with your solution, but I think the cause is far more sinister. I think doctors in the U.S. are UTTERLY INCOMPETENT when it comes to diagnosing, treating and educating diabetics -- with T2, particularly.

I can think of no valid excuse for it. It's a witches brew of greed and laziness. Greed on the part of HMO execs, insurance company execs and drug companies and sheer intellectual laziness and greed on the part of doctors, especially those doctors associated with HMO's who increase their personal profit by providing LESS care per patient.

I think it's bordering on criminal how ALL of these people lie to newly diagnosed T2 diabetics. Why do they do it? To save money on diagnostic tests and doctor's visits? To save money on test strips, CGM's and supplies? To sell more pills? To maintain a higher patient count than they can competently serve? It wouldn't be any more criminal than if they got together in a secret room, had a meeting, and said, "Here, how can we save money on treating T2's now, and hope that many of them will die or move on before the really bad complications show up?"

Every T2 should be getting taught to test at least six times per day, to reduce immediately to a moderate carb diet -- and if necessary, to a low carb diet. Every T2 should be getting labs and A1C tested at least quarterly and their meter downloaded and reviewed more frequently, especially at first -- no less often than once per month.

If they're not maintaining normal or near-normal numbers on metformin-diet-exercise then they should IMMEDIATELY be started on insulin therapy. They should work very closely with a knowledgable CDE to figure out their basal, bolus and correction factor just as soon as they go on insulin. The so-called sliding scale needs to be buried once and for all -- it leaves way too many diabetics spiking after meals with no way to treat their highs. Anyone who has a widely variable basal should be put on a pump right away. Anyone who needs to ride herd on spikes and lows that aren't responding well and need diagnosing should be put on a CGM right away.

This whole business of letting people drift around from 180 to 250+ FOR YEARS is criminal patient abuse.

If I try to talk to one of these friends, even just ask them simple questions like, "Do you know what your insulin:carb ratio is?" they start right in with the whole defensive, "I don't need to know about that" or "My doctor told me I just have to take this pill". Sure, they're waking up at 250, spiking to 350 and have a double-digit A1C every year (!!!) but no one in the so-called medical profession is telling them the truth. No one.

9

Excellent and painfully true post, Jean. I would add also there is the whole paradigm built into western culture of "being good" vs "cheating". Mature adults ping back and forth between these poles - I call it the "twinkie granola syndrome". Nutritionists tell them "you can eat whatever you want" and then doctors feed into this by chastizing them when they "cheat" as if they are naughty children, rather then helping them problem solve good alternatives.

10

I not sure it's criminal but it's damn close. I think a lot stems from the I'm always right attitude some doctors have. The spout their orders and expect us to comply like good little children. In a perfect world this might work. If all of us good children would just follow orders everything might be OK. But this is not a perfect world and we are not all perfect children. Doctors are willing to write off us imperfect children and say to themselves, I gave them good advice but they did not listen. If they would just say to themselves how can I help my imperfect children.

Gary S

11

I've been watching some animal rescue videos on YouTube today. I think amateur animal rescue people put more thought, more caring, more HEART into helping a stray dog than most doctors put into helping their Type 2 patients. That's been my experience, anyway.

I owe more to Gerri, Manny, AR23, Natalie, Zoe, bsc, Jen, you and the other folks at TuD and Jenny's website, etc. for helping me learn how to manage my diabetes than to all of the people I've paid thousands of dollars to over the years in the so-called "medical" field. God bless every diabetic on-line who ever took ten minutes to really listen to my problem or question, formulate a response, and patiently show me a little part of the way.

No one here is charging me $300 to $400 per hour for their advice, but the help I've received here is priceless. Other than just writing the prescriptions I've needed, my doctor has done worse than "nothing" to help me; every thing she's told me has been either useless or outright harmful.

If I could just go to the pharmacy and buy whatever supplies I need for cash without a prescription, I would have no use for her at all. She's that clueless and useless. I've tried to explain to her four or five times what I'm doing, but her eyes glaze over and she keeps trying to send me back to the HMO's so-called "diabetes expert" who put me on the stupid sliding scale that works out to an I:C ratio of 1:30, who told me to eat 45 to 60 gm of carbs per meal, who had no suggestion of what to do if my BG was over 250 (the top of her stupid sliding scale), who had no idea what post-exercise delayed-onset hypoglycemia was or how to prevent/treat it, who switched me to the pen without offering me any instruction on how to use it (because she had no idea), etc. Four minutes with her costs me a $50 co-pay and for what? I might as well just Google something as ask her. I'd have a better chance of getting a useful response.

Whatever these folks are suffering from, it looks a lot like laziness, greed (wanting more patients than they can actually treat) and willful ignorance to me.

12

This post really hit home for me. I just e-mailed another T1 friend who I met on another forum and told him how amazed I was that the diabetics I come across in my dental practice (and trust me there are so many) don't seem to have a clue about what they have, how this disease affects their bodies and how to manage it. They seem to be fine with what I consider high blood glucose (numbers above 180), foods that raise blood sugar (white everything) and just a basic lack of understanding. It makes me wonder why I feel the way I do about my diabetes care...and why I am in the minority here. Further, when I try to impart a little education ( I feel it's my duty as a health care giver) it seems to fall on deaf and uninterested ears. Anyhow, this has been my experience.

13

Chris, I have several relatives with T2 and worked in a large office with several. When I was first diagnosed, read Dr. Bernstein, and got my T2 under good control, I thought "These other people just don't know...I have to tell them!" Well sure. I even bought 4 more copies of the book to lend to people. Only 1 person listened, did her own research, and has good control now. The rest, especially my relatives, are just a mess. The really sad thing to me is that some of them follow their doctors' instructions to a tee, but since that includes a 140g of carb a day diet, they're still way out of control. Anymore I just keep quiet and try not to judge. Watching what carbs do to them, though, really helps me keep away from that kind of food. Like you, I was so glad to find TuD.

14

You've got it right about Kaiser.

15

LaGuitariste - I really hate to admit that what you say makes sense. I'd rather blame the insidiousness of carbs than the ignorance and laziness of doctors, but I think you've got something here.

16

Yes! And that makes it really hard for people like me, who absolutely do NOT "cheat." When I have a problem, I get told, "Well, you're diabetic, what do you expect?" They never believe what I tell them, when I have proof (my logs) they poo-poo that, too. It's so frustrating.

17

I AM a doctor, a psychistrist, and I deal with patients with type 2 all the time, since some of the meds we use precipitate metabolic syndrome. I will not comment on my opinions of sloppy antipsychotic prescribing here, it's a whole different,complex and frustrating issue, but I also have various problems with my endocrinologist.

My very first endocrinologist was at Northwestern. I think he devserves some kind of medal, since he managed to realize that my diabetes was not type 2 way back in 1994--which is evidently highly unusual. He did not know to put me on insulin, but did tell me to never, ever let anyone give me a drug that stimulates the pancreas. That was, of course, fantastic advice.

My current Endo, however, clearly finds me frustrating and bothersome. She still seems to believe that the slow progression of my diabetes means that it is type 2--in spite of positive antibody tests all those years ago and my lack of other type 2 characteristics. After a very slow 15 year progression, the last year things have progressed fast, so that now I am on a pump--but she does not see why I need to test more than a couple of times a day.

She seems to see my failure to be able to control my diabetes via Levemir alone as a failure to follow instructions to control carb intake. I have come to dread my visits to her, and afterwards I always feel terrible about myself. I have felt that I am endangering the future of my family by not keeping my glucose levels normal, but without any tools to do that. She also told me that I would gain a ton of weight on the pump, since I did after starting Lantus.

When I switched to Levemir from Lantus that stopped, but I didn't lose any either. I am now losing weight--5 lbs so far--since starting on prandial insulin and then the pump. And I feel so much better about myself.

Now I kind of feel like I am doing everything I can to be responsible, finish my residency program, and take care of my family, but I sure didn't feel that way a month ago. But I have the knowledge and education to have intellectually known that I was doing the best I could, yet that didn't stop me from feeling all the guilt of my failure and that horrible feeling of being generally out of control.

I think that Endos see a ton of patients. They find type 2, and to a lesser extent type 1, diabetes to be really monotonous and boring to treat. I think that the monony leads to a cookie cutter approach. I assume if you show up with a prolactin severeting adenoma or a pheochromocytoma you get personalized care and their full attention. They just want everyone to follow the instructions and fit into a neat box--because it's just not interesting to them anymore. That's one theory anyway.

But if doctors take a cookie cutter approach to patients, patients will never get the education or motivation to care for themselves properly, thus frustrating the doctors with their non-compliance, and causing the doctors to make them feel worse, which makes them more non-compliant.......

18

In my experience (and this is completely anecdotal), I've seen a difference between T1s and T2s who I meet in the "real world" and even those who I meet online. I've only known a few T1s personally over the years outside of forums like this, and they tend to take diabetes more seriously, regardless of whether the are involved in some sort of extended support community. Maybe this is because most of us T1s grew up with the condition or because we can get seriously ill very quickly if we fail to control things. A T2 can generally go months or years without insulin or meds. Their BGs may run high, but they aren't immediately going to drop dread. This is not the case with T1, and I think this changes the mindset of people with T1. I know that I have very little issue controling my desire to eat certain things --- probably because eating the wrong foods can make me feel so horrible from high BGs in just a matter of an hour or two!

I have encountered quite a few T2s who do very little to control their condition, and I do sometimes wonder if this stems from the "blame" so many experience from society and even the medical community. I think the "blame game" is wrong and generally unproductive because it puts people into a cycle of shame and guilt, which doesn't do much to help them change their behaviors.

19

The other differnce between “us” and doctors is that none of us have malpractice insurance. A PUP policy is probably not a bad idea, just in case…

There’s one other T1 guy @ work who looks pretty fit however we aren’t all that chatty about it. One of my closer buddies isn’t T anything but does low-carb pretty strictly and doesn’t seem too much worse for the wear. We were talking about her sense that she’d run out of gas on a bike ride w/ her daughter which she blamed on the diet and I was like “uh, she’s 18, I’d be alarmed if she didn’t bury you…”. I kind of blathered about my “Trail and Error” results and that I’ve done ok on some pretty longish runs on like 15G of carb meal w/ small sugar boosts along the way but that’s the most IRL engagement I’ve had w/ anyone for years.

20

I read through the thread again and while I sort of agree that there’s a “filter” making us more tightly controlled, there’s a lot of DOC “allstars” who seem to report results that are more towards the middle of the spectrum? I don’t want to start a posters vs. Blogger ruckus but well, ya know?