My son was diagnosed with T1D at age 18 in November 2017. His dad and I are divorced, and my ex is engaged to a nurse. While my son was in the hospital learning how to understand and manage diabetes, more than one of the medical folks we were interacting with, in response to my mentioning that there is a nurse in the family, said they preferred it when patients and families are not in the medical profession because there are fewer preconceptions to overcome.
I think we all have been there with the ignorance of some medical people who treat diabetes. It amazes me how little some people know about diabetes. I also feel with you about the isolation. If it weren’t for on-line forums such as this, I would still be very much in the dark.
Even MDs often have wrong info and IMO should not treat Type 1s unless it is an urgent situation. Always rely on Endos for treatment. Today’s equipment is way up from older days when care was simpler because there were no pumps, no glucose measuring systems for the home. Only hospital or doctor-based glucose readings were available, by slow method of drawing blood into a vial, sent to a lab, and wait for results. It was a nearly useless approach to control. It was really difficult to avoid big highs and deep lows.
How low was your low?
Great post, Oldie. And I concur. What stands out to me in flashing neon bulbs as I am reading post after post on this site is how differently people respond to diabetes. The group on this forum seems to be white, with good resources. Many of the people I have worked with come from different countries like Latin America, Africa, some are white Americans, but more are African Americans. Their fear in general is going low, not high. And they don’t think doctors understand just how awful low blood sugars are. I’m not saying whites don’t feel/think this either, I’m just talking about my general impressions.
I often come up with questions and then spend a lot of time trying to find the answers to those questions. One of which was do caucasians suffer more complications at lower highs, and came up with one published study saying they do. I am not a scientist. And it was one study, but it led me to believe that it is possible, hence one possible reason for disparities in treatment enthusiasm and so on. Another huge difference is the amount of resources, including TIME, that people have to devote to self-care. When I read about CGM here, I marvel. I don’t think I have ever seen one person I’ve worked with with a monitor. Coming to this site is almost like a trip to fantasy island!
Going low is a more immediate threat. My grandmother had T2 diabetes, and she was also very afraid of going low. She wasn’t really concerned about going high, but I think that’s because the consequences of that were less immediate. Her husband had already passed on, and she wasn’t worried about things in the long term. However, the low feeling can be very frightening and cause anxiety, and the symptoms of a low can be more pronounced if you spend more time in the high range. For people with T2 diabetes, they may not realize how much those high blood sugars are impacting their body until things get really bad. The threat of no insulin is immediate for all people with T1 diabetes. Since all people with T1 diabetes treat with insulin, it’s expected that people with well-controlled diabetes will have some low blood sugars. It’s very, very difficult to avoid lows altogether as long as you’re using rapid-acting insulin. It’s easier with Afrezza though.
Cgms tend to be much less common among people with T2 diabetes. Since most people who have diabetes have T2, it’s logical that you may have met fewer people with diabetes that use a cgm. The coverage of cgms differs considerably from country to country as well.
I think it’s difficult to tell what the race might be of a visitor to this site because most people don’t post pictures. I would be incredibly surprised if race played a big part in complication development (meaning at different A1c levels for different races) [EDIT], and I would be even more surprised if people of a certain race knew that they had to control their diabetes better because they thought complications were more likely to develop at lower highs for their race. Perhaps you could share the study you mentioned.
Saying “I would be incredibly surprised if race played a big part in when complications develop” doesn’t feel like a correct inference of what I was trying to say, but it may be, so no biggie. The journal Diabetes Care Aug 2016 writes, “larger and more robust studies have demonstrated that the adjusted risk of diabetic complications, comorbidities, and death increase with HbA1c and are greater in whites than in African Americans within HbA1c categories…glycemic exposure is greater in whites…” The article is titled, “Are There Clinical Implications of Racial Differences in HbA1c? Yes, to Not Consider Can do Great Harm!” Right there on nearly every blood tests, we see the different ranges for eGFR so the possibility of disparities here would not surprise me.
I am making educated guesses on the race of people posting here, and I would be surprised if more than 60-80% were not Caucasian.
Thank you for sharing the study. I’ll read through it.
How is this guess an educated guess?
It could very well be true, but I’m not sure it proves what you’re saying if I understand. Assume it’s true and assume the majority of people on this forum are white. That doesn’t mean that white people are more concerned about high blood sugars because they have to be, or that other races shouldn’t be just as concerned about high blood sugars. It doesn’t mean people of other races shouldn’t seek out the tightest possible control for the good of their health. If there’s any bias on this forum, it’s probably that people who go on diabetes forums tend to be the most interested in their condition, seek out the latest in treatments and use them if they are able to afford them or get funding for them. I’m sure that’s true of any person of any race who goes on this forum. I also think you’ll find that many people on this forum complain about the medical profession caring too much about low blood sugars, and wanting their patients to run higher numbers at the expense of their long-term health.
Yes, that is what I said in my OP. But having met with many patients, I can’t help but start to see patterns, and the number of people scared of low BGs is incredible, I found. I’m not sure if I am determined to “prove” anything, but the article does imply that race may play a factor in many providers’ zeal for low blood sugars in the US.
What do you mean by providers’ zeal for low blood sugars? No providers are hoping that their patients will have low blood sugars.
I don’t mean hypoglycemia. I mean normal range.
So you’re saying that the article implies that providers’ want normal blood sugars for patients of all races? I don’t think I’m understanding.
Lots of people are scared of low blood sugars, often legitimately so. Unless there is data showing that people of different races have higher normal ranges (which I doubt, but I’m a lawyer not a medical researcher), then it’s only legitimate that doctors should be pushing patients towards normal blood sugars.
You can read the article if you’d like.
What I mean is that many of the people I used to see complained about not wanting to go too low, and polite to a fault, may not have wanted to say outright that their providers’ expectations might be too high (I mean low of course), and that basically they were not comfortable going that low. There’s muuuch more I could say on that score, but I just wanted to clarify because it seems like some of this misunderstanding is a bit needless, and possibly a result of my not communicating more clearly.
ETA: By “too low,” I mean, for example, that while a patient’s doctor set a goal of 160 or less 2 h postprandial, the pt would have prefered less than 200. To consistently try for less than 160 was too much for them.
Yes, it can be frightening to go too low. A cgm can really help with that because an alarm will alert you before it becomes a major problem. High blood sugar levels on a regular basis are generally a much bigger risk, but I’m not sure how that varies by race.
The article listed is not actually a study. It is an article that references multiple studies. The article references the studies linked below which may be the most relevant if others are interested in reading up on this topic. All of these studies appear (so far) to be specific to T2 diabetes only.
IMHO the portion which was a bit needless or possibly a result of not communicating clearly was trying to link race into the discussion.
I think if that is simply left at the doorstep then the rest of the conversation likely makes more sense.
Remember also that people who have been running high blood sugars for extended periods of time experience hypo symptoms at normal levels because their bodies think they are low. This might be more prevailent amongst type 2s who were diagnosed months or years after running high blood sugars and then feel sick as they return to normal, so like to stay higher. This would be true for anyone though, not sure what it has to do with race or treatment based on race.