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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.
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?
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.
Thank you! I like tudiabetes as a forum to meet other diabetics but I don't see its futility in solving problems in the current manner. There are diabetics that don't use computers at all so how will this forum affect them? It won't. Most people were surprised that this type of forum exist.
Please with medical care the way it is I have a hard time trusting most doctors and their information. I want people to know they can recheck doctors information. and such.....
Well I am willing to do anything!! At my diabetic screening event, I met so many people that were thirsty for knowledge. I met people that told me they have more than 3 people that are T2 diabetic in their family.
Well, I am researching and writing grants to get money. I am trying to get a non profit status with my little company/website (that I can't mention here). I have contacted a few local city government people about doing this just like how it is done with HiV/Aids people. It can be done with some hard work and research.
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.
"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.
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.
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.
That's because doctors are IGNORANT about diabetes and insulin.
I regularly tell people, "I would rather get diabetes and insulin-managememt advice from a smart 12-year-old T1 with early diagnosis than from 98% of the doctors I have seen. I'd be safer, get better advice and have a lower chance of serious complications."
I'm not kidding.