I figure that most of us here, and on other diabetes forums, have a good handle on things. Yes, sometimes we get thrown by something, but by and large we are doing a good job. We do what we are supposed to, we don't do what we're not supposed to and we are quite skilled at finding what things work for us. (The fact that type 1 - and all D is so individual makes it a challenge)
So to my rant. Why can't members of our diabetes "teams" believe us. I have a good A1C, and I can't seem to start a conversation without having to prove that it isn't an average of extreme highs and extreme lows. I brought in my devices, they have the printouts. And yet the starting block for so many in the diabetes medical profession seems to be the assumption that we are not adept at taking care of things - or at worst "non-compliant" I remember the relief when an endo I used to see (before moving away) saw an A1C that had creeped up and said "must be that we need to tweak the treatment" He assumed I was doing my best and working hard. I am tired of having to convince the "team" that my good control is from my hard work and discipline, not a vagary of math and/or statistics.
I'll step down now from my soapbox. Thanks for reading.
My doc has been pretty supportive and encouraging of my "sub 5.5" lifestyle. I had a couple of hypos that required tx (I think MrsAcidRock had handled them but other people were around who called 911, otherwise, who would have noticed). Both of these were related to me increasing my activity level suddenly so I was pretty dismissive of them, used them as reminders not to blow off eating when I bolus and obvious stuff like that and, otherwise, other aspects of my health (cholesterol, BP, 5K time) have improved too so I feel like I'm making "progress" and, while she always mentions "there's not a lot of lows there...," she doesn't really suggest I back off, which is pretty much what I'm looking for. I don't bother with the rest of "the team" most of the time, I think that the one who calls when I have questions, like my recent "help! My toes are turning black and blue!" incident may be a CDE but I am pretty precise with my questions and she invariably checks with the doctor and gets back to me.
Unfortunately for me, the doc is moving to Cape Cod.
My response is a very skeptical and hard approach--Docs are too busy and too restricted by rules and money to truly care about patients. I see it all the time--plus a lack of knowledge. I have asked questions about pump, CGM options, and it is all mini-med. There are a lot of other choices but Medtronic seems to bring the best lunches and perks for referrals.ee.
I find the docs irrelevant, except for scrips. I do all the tweaking and have for many years. If I am in a crisis, the last thing I consider is to call my endo. Maybe I will hear back in 3 days.... It actually says that on the website.
Like you, I've been doing my own tweaking. I just get angry (or upset) when I can't convince the "powers that be (powers becuz of the scrips) that my good labs are because of my work - not cuz I have a bunch real lows to balance out real highs. I have friends with other chronic diseases MS for one, and they don't get any sass-talk about their control of things like people with diabetes seem to. Oh well. At least I have TuDiabetes to vent to.
The reasons already stated in this thread are why I quit going to see the doc and switched to the DOC instead. It's always left me wondering what it is that seasoned PWD would miss from seeing a Dr. or CDE.
Thanks for defining DOC. I have to see the Endo folks every three months in order to keep the insurance covering my pump and supplies. So I guess I have to take the flak in order to have financial help with the costs of the pump and supplies. I suppose in all honesty - its a small price to pay
I’m sorry you’re having trouble with your docs. I actually don’t see an endo ever, just my CDE, who is the best doc I’ve ever had. She’s really knowledgeable, and after hearing other people’s struggles, I’m super thankful. She’s helpful without bossing me around - after all, after 17 years, I’ve kinda figured a lot out
I understand the suspicious doctor perspective on many issues when I think of it through the lens of lawsuits and malpractice. On the other hand, I would sign a waiver of, "I, nor my family, will ever sue you if you promise to treat us fairly." Come to think of it, there should be a formal organization of doctors where complaints and malpractice are handled through doctor-peer review boards rather than in courts where money is the sought after compensation. It certainly would lower the cost of care and doctors wouldn't have the need to operate out of a CYA mode, but rather a true patient-care mode.
Anyway, I got lost on a tangent. I know exactly what you mean about the lack of trust a team can have. Two years ago we moved to a new city. We had an average of 11 BG checks a day to show that our son's A1c shouldn't have gone up, but it went from 6.4 (pretty steady) to 7.4. The first time the doctor was kind and attributed to the move, but I held to the finger sticks showing his numbers weren't increasing. Three months later, another 7.4 or 7.5 A1c and the new doctor said to replace the BG meter because now 2 A1c's were elevated from the previous A1c's. Another 3 months later, and switching to the most accurate meter our insurance allows (Bayer Contour Next), we received a 7.5 A1c result, but our son's numbers had no statistical increase and the 11 checks showed an average BG that should have correlated to an A1c in the low 6's. The doctor was not firmly convinced that the A1c was accurate, but almost. She didn't mind the 7.5, but wanted it lower. Never mind that I had thousands of finger stick readings to show that his average BG was fine and his standard deviation was great (reasonably small).
For a week I poured over medical journals reading everything I could find on A1c's. I ended up getting a consult with an A1c expert who recommended a different lab. Two weeks after our son's third 7.4 or 7.5 reading, the new lab reported 6.3. Subsequently, all our son's labs have been 6.4 on the nose (3 additional A1cs)--still no difference in the readings from the BG meter, but the doctor never did admit that her "A1c Bias" trumped her faith in us and the empirical data we had in hand.
In my experience, doctors are just like mechanics, lawyers, IT people, or anything else: there are good ones, rotten ones, mediocre ones, and everything in between. For everyone I know who finds their doc useless -- like many in this thread -- I know someone who thinks their doc is great, treats them as an adult, etc.
The last time I had occasion to change doctors, I made it a point to go shopping. I interviewed docs until I found one who said, "I don't know everything" (that's a direct quote), listened to the course of treatment I wanted to follow, and agreed to work with me to make it happen. Consequently I now have a doc who treats me like a partner, not a wayward subordinate. It didn't happen by accident or luck of the draw; it was deliberate.
And that's the rub: finding a doctor who will work with you (nopt at you) My situation is that I am in a new city, don't know anyone with any type of diabetes to get suggestions/names, and the new doctor has to be in my insurance network. And my original rant was that I have to keep proving myself "worthy" of the MD's respect. Oh well, like I said before, at least its off my chest.
Most of the docs I have seen in the past don't believe me when I explain how much effort I put into my management, because surely, if I did, I "would have a much lower A1c". True words spoken to me by a physician. I don't have much faith left in my local docs and handle most of my own management. My CDE is my primary resource and the endo I only see once a year to get my pump prescription updated. Someone mentioned empirical data,you can't argue with that.
Even if your results are not what your doctor's goal is diabetes is an *enormous* amount of work. I think that the biggest misconception about diabetes is how consuming it is. You get "oh, you have to take shots" from "civilians" and the doctor goes "here's your plan, follow it and come see how you're doing in 6 months" but, if you have diabetes, whether you choose to work to control it or, as is often sadly the case, don't the disease is ***constantly*** there to be considered in terms of just about anything you are doing.
I had much more of this when I was less organized and more reactionary in my approach. My BG was either low, going to be low soon, recovering from a low, high or, on rare occasions, where it was supposed to be. I have gotten a bit better about things but the amount of work and thinking hasn't changed.
Just a thought... You do not need an endo for scrips. My PCP writes all my insulin, etc, scrips. He is not up to date on pumps, so the only reason I see the endo yearly is so he will continue to OK my pump supply prescription.
But AR was referring to a doctor. DOCs do not move to Cape Cod!
When I ran into this type of problem, I scheduled a meeting with my doctor in his office, not an exam room. I had a written "agenda" - things I wanted to discuss, AND I let him leave the office and come back when he had another patient to spend the classic 10 - 20 minutes with. Put another way, I decided that I wasn't leaving his office until we had a lengthy talk about how I expected to be treated by a professional.
He was a bit annoyed at first, but soon realized it was to our mutual benefit to discuss calmly and rationally.
I am with you Mike. I go to my appointment with a written list, I state all the basics up front, my prioritized list of issues and questions, all my current medications and basic statistics from my health monitoring. I figure that if I want top notch professional care, I need this to organize and orchestrate my health care team. My "former" endo would take the list and then ignore it. My current endo takes the written list as a godsend. My current endo may run late and as you found may dip out to take care of an emergency. But she listens and she acts as part of my team. I'll gladly be (her) patient.
Bull's eye. I think about my blood sugar when I go to bed at night. I think about it when I get up in the morning. I think about it when I decide what to have for breakfast. I think about it while I'm eating. I think about it afterward, wondering whether I calculated the bolus correctly. I think about it while working, checking to see whether two hours have gone by and it's time to test. I think about it in between meals, making sure the timing is right. I think about it before I exercise. During exercise. After exercise. Every time I feel funny and need to test. Etc. Etc. Etc.
Same here. I don't even have an endo. I tell my doc which scrips I need. He writes them. I tell him what tests I want (in addition to the ones he wants anyway), and he orders them. We discuss the results together. When I decide to change something, we discuss the whys and wherefores.
I gently suggest that many endos see patients that differ from the kinds of dedicated Ds on this site. When I was younger (much) I lied to my then endo. My current endo has become a friend over the last 25 years. His beef is with older T2s. It really stresses him when they self-delude, lie and are non-compliant. When I asked him why he doesn't just "fire" them and calm down? He said he never has and never will, because he always has hope but way too often, the bad things he predicted happen. There are good docs and bad - he is a good one.
Well, that is true. Many doctors have undoubtedly become cynical for just that reason. It's hard to filter out the truth from the smokescreens when every patient says the same thing -- how do you tell which is which? I do sympathize. That's one reason I started from a clean slate, with a new doctor, when I decided to begin insulin. We have no prior history with each other and we're always completely straight with one another. I think he senses that. Acts as though he does, anyway.
Having diabetes requires a supportive group of friends, family and medical team. There is no room in my life for negativity and condescending attitudes towards me. I do a great job of that all by myself. If possible, I would suggest finding a new doctor. You deserve a doctor and medical team that cares about you and is empathetic to you and the daily challenges you face.
