What should we expect from clinics after a diabetes diagnosis?

What kind of care should people expect after being diagnosed at a clinic, urgent care or emergency room?

During the diabetic screening, I heard several stories where people had gone to one a medical facility were told they could be Pre-diabetic or diabetic. They were "patched up" given a prescription and left without any long term care plans. Of course I think this is horrible and grossing under serving the community. I counseled the these people and told they need be under the care of an Endocrinologist to get a proper diagnosis.

This just made me think shouldn't the public expect more from our medical facilities? If they were given an HIV/AID dx'd would they have offered all kinds of counseling and resources? I can under stand their position but I also think they can deliver information about community resources for diabetics. I would have loved to have the information about the several diabetic clinics they have here in Los Angeles. I eventually dumped my internist for a Diabetic Clinic that gave me better care.

Am I wrong for thinking this way?

I agree completely. I think medical care for diabetics is broken, broken, broken.

For example, I was given Lantus by several different doctors (I moved twice) over a three-year period without ANY instruction on what might cause me to go hypo, how to prevent it, how to recognize one coming on, what to keep on-hand to treat a hypo, how to treat a hypo, the importance of wearing a medic ID when using insulin, etc. I distinctly remember asking one doctor if too much insulin or low blood sugar was a concern with Lantus and he told me no! Sheesh.

I had to find out the hard way: a BG of 36 and a visit from the EMT's! Then a few more in the 50's before I figured out what was going on.

I find this appalling, to say the least.

No doctor has ever really helped me with diabetes beyond writing a prescription. The three doctors I consulted after my scary hypos started happening had either never heard of delayed exercise-induced hypoglycemia or else they missed all the glaring signs.

I find the neglect, ignorance and lack of care pretty terrifying, actually. Now that I've taken control of my own care -- and stopped relying on doctors -- I feel better, but how many diabetics out there are illiterate, have no access to the internet, have been raised to deify their doctors and just do whatever the doctor says without question, etc.?

Every diabetic who can't get to a Dr. Bernstein should be seen in a comprehensive diabetes clinic that has CDE's, nutritionists who understand how carbs impact diabetes control, and doctors who are happy to be advocates and educators, giving new patients books to read, teaching them self-management, etc. People should get intensive help/training on basal, bolus and corrections, I:C ratios, the vital importance of normalizing insulin levels, etc.

I call what we get now "drive-by medicine". It's almost worse than no medical care at all in that it gives too many people a false sense of security. If you knew you had diabetes and no doctor, at least you might be motivated to go to the library and get some books. As it is now, too many people are floating around with double-digit A1C's and no clue of the danger they're in because their doctors are useless.

I could not agree with you more LaG. The unwillingness of the medical community to shoot straight when it comes to D info is more harmful than keeping their yap shut.I would love to see a mentor network of PWD who would be available to give support to the newly diagnosed. Not for actual medical info, but more like "this is what I have found" what to expect, where to go for more support and info kind of thing. Something like an AA sponsor. Some one to help fill in the gaps and help them get started on the right path. It seems like a doable thing, but I have no idea how one would go about something like this.

TuD has been that for me, but it took a bit for me to find this and it would make a huge difference to know that an actual PWD is there to help them personally. Especially in the very beginning.

Christalyn, Jean and Randy, I agree with you all. It boggles my mind to think of the great numbers of people who are being diagnosed with diabetes right now and who are not getting the kind of support and information they need to make a positive difference in their lives. A personal "sponsor" or guide in the learning process would be worth their weight in gold!

I also think that the medical community should be forced to come to terms with the truths and realities of diabetes. I love my endocrinologist. He's fantastic. I'm very, very fortunate to have found him right at the beginning. But the CDE and the dietician I was referred to seem not to know about the value of a low-carb way of eating. Both of them have told me that my diet isn't balanced; that I won't be able to achieve good results; that the good results I'd achieved in the first six weeks may have been accidental; that my then 30-lb. weight loss wasn't healthy because I'd done it by eating 20-30 grams of carb per day (neither of them expressed any approval of my weight loss even though I did need to lose those pounds!); that no one can sustain a low-carb diet indefinitely because people get bored, feel deprived and find they simply have to binge on huge amounts of high-sugar, processed foods in order to feel happy; and that no matter what I had done or was doing, I had to accept that I probably had serious cardio-vascular disease because all diabetics do.

If I had paid attention to the CDE and dietician, I may very well have simply regained the weight I lost and my average BG might have returned to around 18.1 mmol/L where it was when I was diagnosed. My endocrinologist, however, told me that he was thrilled with my progress and to keep on doing what I was doing. And so I've lost about 45 pounds and my average BG these days is about 5.6 mmol/L (101). I feel great. I look good. I'm not suffering. I do let myself indulge in a treat occasionally. My health is terrific. I'm quite certain that if I had accepted the 150-200g carbohydrate/day diet the dietician recommended, I would have gained a lot of weight and my BG would be in the upper stratosphere.

Food is about culture, history, family and memories. It relates to our mental and emotional well-being as well as to the relationships with have with friends and family members. Not everyone even has complete control over what is presented to them at meals. Eating a healthy low-carb diet is more expensive than eating more carbs, too. But there are ways to address all of these considerations, and many more, and be healthy.

Low-carbing doesn't work for everyone. That's just fine. We should each do what works best for us. If that means counting calories and limiting saturated fat, go for it! If it means eating six small meals throughout the day, do it! Everyone should be encouraged to take care of themselves in the best possible ways and no success should be denigrated.

I also think that pre-judging people with diabetes, making blanket assumptions about us and gearing health care options accordingly, is simply unethical. I met a dietician at a social gathering recently who told me that, while she understood that a very low carbohydrate diet could be healthy and effective, she never advised anyone to try it because she knew that, at mid-life, few people are capable of making major, lasting changes. This kind of grand generalization, however, denies vital information that diabetics need to have, such as that keeping blood glucose levels within a normal range will prevent complications like blindness, kidney disease, circulatory disorders and amputations.

Thanks Ann. You experience sounds a lot like mine. I have a great GP (no endo) who is very helpful and supportive. I made exactly one visit to the CDE and was disgusted by the direction she gave me. Frankly, it scared me. If this was the advice I could expect from a trained professional, how on earth was I supposed to learn what to do?

The assumption that people of ANY age are incapable of major life changes is maddening as well. Although I do understand that it can be generally true for a lot of people, age really has little to do with it. Most people are resistant to change under any circumstance. I saw this in the first couple visits with my GP, but in fairness he did not know me. My first visit with him was the physical that diagnosed my D.

I think that a peer support system would go a long way towards improving overall D care and success. We all know how scary, emotional and overwhelming this diagnoses can be. Having some one to act as a compass and cheerleader that will be there regardless of insurance, would have meant the world to me.

Soooo agree Alan!

thank you so much for responding!

I think there should be something given to diagnosed and to new diabetics about the services in the city or neighboring counties. I have met so many people that had no idea of what diabetes could do to them. At my screening, I met a young man that had the drive by medicine experience. I couldn't even counsel him on what to do because he wasn't even sure if he was diabetic or not. I told him first confirm the diagnosis with a real Endocrinologist.

This is what I am trying to do in the Los Angeles area. I would like to create a resource center for diabetics were we will disseminate good factual information. I want to be able to pick up where clinics drop off.

What have you been able to put together so far? How would you go about making contact with the newly diagnosed? It seems ideal to be available immediately after DX. This would mean that person would have to get that information from the doctor. It may be something that would need to be developed over time. Possibly PSA ads?

"Drive-by medicine" is an accurate description, particularly in those communities with inadequate numbers of endos and CDEs.

One thing I have observed with co-workers recently diagnosed is that they often aren't given a diagnosis of diabetes. They are only told that their "bg is elevated" and then given meds, whether it be oral or insulin, then told to test twice a day and sent to the dietician (who tells them to eat 60g carb per meal).

Another of my co-workers was recently told that her bg was elevated and her triglycerides were high. She was unsuccessful at lowering the levels with diet and exercise because she has a demanding high profile position within our organization. So her PCP put her on Lantus and told her to test 2 times per day - fasting and bedtime. She said that her main problem with the diet was that she gets "hungry and light-headed" between meals. The doctor had never had a discussion with her about insulin and hypos!!! And told to only test twice a day?!? Each time I encounter this it makes me angry.

Another co-worker was questioning me about my Diabetes. We were talking about the genetic factor with Diabetes. She went on to tell me that there is no history of Diabetes in her family but in the next breath told me that her father has elevated bg and takes oral meds so "he won't get Diabetes".

If the medical community really believes that their first charge is "do no harm" then I think they have a responsibility to at least make sure that their patients have enough basic information to know what the diagnosis is and to point them in the direction of the tools they need.

To put someone on a guesstimated starting dose of Lantus and then tell them to test only twice a day...but don't tell them what a hypo is, what it feels like and how to treat it? People deserve better.

I agree Alan. Lots of obsticles, but a little light shines a long way in the darkness. Besides, the focus could not be on medical advice. The goal would be to remove some of the "over" form this overwhelming experience. Letting them know they are not alone. Where they can get the information and suppoort to manage their condition in the best way for themselves. It would be the personal component of their D team and ptrsented as a tool that would actually make the doctor and the patient successful in the management of D.

Hey Christalyn. Have you heard of the Strong on Insulin Group (SOIG)? They have monthly meetings for Type I diabetics exclusively, They are held in Westwood at UCLA. I learned about it from my Endo Dr. Drexler and my DE who is also a type I. I'm going to my first one next Thursday, Let me know if you would like more information. I think you could get a lot of your questions answered. The "special topic" is artificial pancreas.

Well I'm sad and relieved to hear your stories, because that is EXACTLY what happened to me. Sometimes when I tell people, "My doctor denied that Lantus could cause hypos and told me not to worry about it." I'm afraid people think I'm just remembering wrong, or that I'm being dramatic. I swear to God and all the angels that THREE doctors handed me Lantus prescriptions without ever once warning me about Lantus and hypos, and when I read the packet insert and asked one doctor about it, he said quite flippantly, "Oh, no, don't worry about that." IDIOTS.

I'm very lucky that this didn't kill me. Truly.

I started a new diet and a new exercise program (this is supposed to be good for me, right?), started whittling away at my insulin resistance without adjusting my Lantus (who knew? not me!) and then BOOM I'm seeing lights, dialing 911 with my last shred of strength, turning into a human dishrag by they time they arrive -- completely unable to move my arms or legs -- and 36 and dropping when tested. I live alone. What would have happened if I hadn't dialed 911 right before my arms failed me? My blood glucose had been 136 just twenty minutes before the hypo hit -- a one hundred point drop in twenty minutes! I wasn't on fast-acting insulin then; this was all Lantus interacting with my post-exercise drop in insulin resistance.

Even after this experience my doctor couldn't be bothered with helping me figure out what happened. It took two more drops into the 50's and a lot of on-line reading to figure it out on my own.

These stupid, lazy, ignorant, arrogant doctors could have killed me or given me permanent brain damage. It makes me furious just thinking about it.

Exactly, Alan!!! These people sound like the chain-smoking doctors of the 1940's denying the connection between smoking and lung cancer. Hello?

Carbs elevate the blood glucose of diabetics. Maybe we shouldn't be indulging in mountains of them, especially if we're so insulin resistant that we have to inject gallons of insulin to cover them?!?

Oh, absolutely! What will most people do when given a choice between keeping their feet and eating 60-90 grams of carb per meal?

I do wonder, too, whether a lot of this disinformation is attributable to discrimination against middle-aged and elderly people and against people who are overweight or obese. In other words, people who simply may not be considered to be as useful, valuable or attractive as our society prefers?

I'm cynical and bitter... time to take the dog for a walk and feel better!

Do you think that one reason people aren't fully diagnosed--that their diabetes isn't named and written down on their charts--is that the diagnosis is a death-knell to getting health insurance and life insurance? I understand that in 2014 Americans will no longer be prevented from having health insurance because of pre-existing and/or chronic health problems, but that seems inadequate to this Canadian!


I had an interesting & disheartening exchange with a CDE member here some time ago. Like the woman you spoke with, she admitted that lowering carbs was essential & her justification for not recommending it was the same. She claimed people wouldn't/couldn't, it would simply frustrate them & she wanted patients to feel good about their efforts. Huh? Are people with hypertension told to eat as much salt as they want?

Appalling that this level of gate-keeping is a constant. Truly enrages me to encounter anything this disrespectful, condescending & patriarchal. Give people options & allow them to decide. Don't only present one way as The Way. Medical professionals aren't parents & we're not children. Agree it's unethical.

This issue goes deep, of course. I mentioned this on another thread, but worth repeating here. CDE's & RN's (registered dietitians) are kept adhering to the party line by their professional organizations who don't tolerate deviation. A
CDE RN friend told me of a colleague who was persecuted for writing an article that butter is healthier than margarine. Her article was researched & sources cited. She was vilified & threatened with having her license revoked! No license would have ended her career, or severely limited her job options.

Good point. I can't get health or life easily because I was diagnosed T2 at 34. I can get life through employer group. Health I can get for a large amount of money through Oregon's high risk pool. Sad thing is, I'm probably healthier than many people who are getting insurance.

My experience with Lantus has been the same. I had one of the 100 point drops this week while in a rural camp for a business retreat out in the middle of the woods with spotty cell service. Thanks to my cgm, being prepared, and running high on purpose because I was in the middle of nowhere, it was just another sleepless night in the life of my diabetes but could have been a life-threatening event. I hate Lantus.

Your story is exactly what made me warn my co-worker of hypos. She was talking about cutting back carbs more and starting to exercise so I wanted to make sure she knew that her insulin would probably need to be cut back as she made those changes. Her eyes got huge because her doctor had told her none of it.

You're so lucky to have groups like this in your area. We have nothing like this where I live in the deep South.