Just in passing, I especially love Winston Churchill’s definition of a fanatic: “Someone who can’t change his mind and won’t change the subject.”
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Hey @David_dns, this is exactly what I was thinking. I found TuDiabetes in 2008 and I really feel SAFE here. Our volunteers and staff do a wonderful job of upholding Our Values (I encourage all to read this, if you haven’t already). We don’t allow snake oil salesmen here, and while we understand there are various points of view on diets and carbs, we want everyone to be respectful of others’ opinions and treatment choices. We’ve had a few threads over the years from parents who might be making dangerous choices, and very quickly the community rallies. T1Ds need insulin!
We do not support any discussions of “You are to blame for your diabetes”, “which type is worse” or “you’ve failed as a type2 because you’re on insulin”. You are encouraged to flag any comments you feel are disrespectful. We are all helping each other here.
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@MarieB and @David_dns I wholeheartedly believe that every diabetic is different, and so what may work for some, or works for me, isn’t always going to work for another. I will never force my opinion regarding treatment and management on someone.
I’ve only been a member here for a few months now but I truly cherish this community. Not only the knowledge and support, but the non-judgement and warmth I’ve received from everyone here.
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Welcome to the family! 
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How frustrating. I’ve begun to learn to just ignore people like this. A discussion on Facebook is likely to never change their mind, and it’s not worth the emotional drain to engage with them.
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MayaK,
Not al at all. It is simply a pet peeve. My email was not directed at any one. I consciously try to live a positive, fabulous lIfe without snarkiness.
I send you positivity!
Best,
Jo
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I came to this thread late but I want to congratulate everyone for their civil discourse, tolerant attitudes, and supportive words. When compared to the FB thread in question, TuD rocks!
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Well said, deserves more than one `like’ 
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I’d like to also point out that I have found Facebook (as well as places like reddit) to be places where people lose their sense of social decorum. I’ve been called all kinds of name, called stupid and been threatened on facebook. It is simply amazing what people say when they think they can say something anonymously. Facebook isn’t anonymous but that doesn’t stop people from being disrespectful. One thing that I really like about TuDiabetes is that we establish social rules of behavior. It isn’t right to be disrespectful even when you totally disagree.
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An update on that Facebook thread situation:
The person in question kept posting on there that he believed that while type 2s can stop taking insulin, then there’s a potential for type 1s as well. He kept saying we were trying to shut him up. He then made a separate post with a link to that one example of the cured boy he kept bringing up in all the other posts.
At this point I got an IM from the group’s admin apologizing and explaining his position, and how that person had made great contributions in the past, though he could be “extreme” at times. He asked me what I would do if I were in his position. I thanked him for managing the group and his great contribution to the community but explained that when a person is telling a newly diagnosed PWD or their parent that they can just stop taking insulin, he’s putting them in danger. He asked me if I think he should just kick him out then. I told him in most communities that person would be asked to leave. The admin then said he would talk to him personally and ask him to stop. After that all his posts were gone and it looks like he got kicked out of the group.
Thank you so much, everyone, for all your support in this matter. You guys were a tremendous help to me. 
I’m happy this matter was resolved without me having to leave that group, as there are many great people there and that person did not represent the rest of them.
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This sounds like a generally good outcome. It’s always a bummer to have to expel someone, but some kinds of snake oil are downright dangerous.
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I think we all need to be careful, even on this forum, to not confuse what we are reading, and writing with legitimate medical advice. We all have a wealth of experience that when shared and evaluated in the right context can be extraordinarily valuable— but our personal experiences, and things we find here and elsewhere on the internet don’t overrule the proper medical advice given be a competent physician who has evaluated a patients entire history… Sometimes we are able to offer helpful bits of information, tips, etc… I’ve also seen it cross the line to the point of members here advising against taking prescription meds rx’D by doctors, etc… And that’s too far, IMO
The OPs experience also highlights this by showing someone going too far…
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@Sam19 I agree with you, and I think this goes back to what I said about each one of us being different, and so we need to keep that in mind when giving advice. I usually remind people that I can only speak from personal experience and I have no professional training so it’s always good to speak with a doctor before making any changes to medication.
Having said that, I think that anyone participating in these groups/discussions needs to bare in mind that while our intentions are good, we are all strangers on the internet. So take any advice you’re given with a grain of salt and always do your own research, including seeking professional advice.
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Sorry to sound Draconian, but this must be absolutely clear:
Sharing one’s personal experience is one thing, giving specific medical advice in an individual case without being properly credentialed is quite another. The first is one of the reasons TuDiabetes exists. The second is a direct violation of our Terms of Service and is not permitted.
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@David_dns No need to apologize.
This is a good reminder and a clear indication of the line we shouldn’t cross (the one @Sam19 had mentioned in his post). Thank you.
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This is sound and sensible advice. While I generally agree with it, I will not overly discount my experience or the experience of my patient peers. Doctors are not gods and they do make mistakes, especially ones of judgment. I make changes to my insulin medication all the time. If I had to seek the proper medical credentialed stamp of approval each time I made a spur of the moment surfing decision about insulin, I would need an open line to my doctor 24/7/365!
I do get where you and @Sam19 and @David_dns are coming from. It is a delicate balance we must try to execute where we don’t cross an ethical line. Unfortunately that line is not bright and I no longer put doctors up on a pedestal like I did before. I have a better understanding now of the natural limitations on my doctor’s sphere of expertise as well. They know darn little about nutrition and blood glucose, an area the average medical consumer would assume a deep knowledge on the part of doctors, especially doctor specialists such as endocrinologists.
I don’t raise this point to be argumentative for the sake of the argument. The person the OP talked about was indeed stepping way over the line to the point of being dangerous. On the other hand I have been disappointed by many doctors over the years of my diabetes. Their ignorance of carbohydrates and blood glucose, in particular, could be argued to have put me in medical danger. Don’t get me started on the medical advice of most dietitians when it comes to carbs, blood glucose, insulin, safety, and quality of life.
I would suggest that the white coat and letters after their name deserve respect but limited respect only. Meanwhile, the knowledge of the patient community, living with diabetes all day, every day, year after year, deserves some modicum of respect as well. Sometimes I think we too quickly undermine our rightful place in the sphere of knowledge about diabetes and overly deprecate ourselves, especially when it comes to insulin dosing.
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I’ve consulted with three endocrinologists and a PCP regarding my diabetes. My PCP readily admitted that, while he has many patients with diabetes (mostly Type 2, as his practice is heavily involved with geriatric patients), he know that his knowledge has limitations. When I exceeded his expertise, he recommended an endocrinologist. This PCP also goes out and researches new things when he encounters them. I am quite happy with him as a PCP.
The first endo I saw was very “by the book” – and made many assumptions that my case would follow the textbook. While he was great at getting approvals from my insurance company, his textbook approach left me unhappy in many areas.
One endo was the Head of Endocrinology at a prestigious medical center – he was approached for a “second opinion” on some issues I have that have gone un-addressed – He went off on some wild goose chase that did nothing to help me. So much for the “top guy.”
My current endo is older - hopefully more experienced. His attitude is to take every case individually – He told me that he knows the fact that he has never seen a particular symptom or reaction before - even with a long active practice - is no proof that that symptom or reaction is not happening to THIS patient. He has tried to deal with my concerns one at a time - never discounting what I’m telling him that I’m experiencing. Does he have all the answers? Certainly not, but he tries to find solutions – and endorses those ideas, plans and other strategies that his patients report as successful.
End of story - you have to get information from a variety of sources - though not necessarily taking it all as fact. (And I agree that the case the OP reported was dangerous - and I’m glad the group manager intervened.)
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Sounds like you have a good endo now, @Thas. Treating you as an individual is a good thing in my book. I also had an endo from a prestigious teaching hospital that is one of the top in the country. She did not help me and looking back, I’m appalled at her lack of knowledge on insulin use and diet choices.
She was totally freaked out when I told her that I sail single-hand and was going out on a one week trip on the bay. I don’t need a nervous doctor, just a competent one. I fired her when she gave me grief about a well-detailed written description of my prescription renewal request. Her written order using vague generalized terms would’ve caused me nothing but headaches with my pharmacy benefit manager.
My current endo listens well and respects the knowledge I have. Unfortunately, my upcoming move will put back in the market for another endo. My current trial of MDI, if I decide to stick with it, would give me the ability to cut back on 4x/year endo appointments required my Medicare to the 1x/year that I prefer. We’ll see.
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When I last needed to change doctors (due to retirement), I made a project of it. I actually scheduled appointments with doctors purely so that we could interview one another and determine whether we had a good fit. (At least one promising doctor was eliminated from consideration because his office staff refused to arrange such an appointment! I’m not sure he ever even knew this happened. But that’s a separate rant for another time 
.)
My current doctor said during our first meeting, “I don’t know everything.” That was a very positive sign, and one of the reasons I chose him. I’ve never looked back. He treats me like a partner, not a wayward employee, and he realizes that I know more about my individual case of diabetes than he ever can. It’s a good marriage.
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