I haven’t been on TuD for awhile but I’m angry about an experience I had today and know that all of you will truly understand. I live in a very small town with a limited number of medical providers. Unfortunately I know negative things about most of them so chose to utilize the town clinic where there is an ever-changing staff. Recently there was a change and I was given an appointment with the new doctor. I guess I’ve been lucky with having providers who appreciated my knowledge and proactive approach to my Type 1. I’ve heard enough horror stories on here about know-it-all-doctors who don’t know anything. Now it’s my turn. The initial appointment started with the Doctor asking me how old I was when I was diagnosed. I replied “58” and then saw “the look”. Trying to not be condescending or “know it all” myself I explained that I had been initially misdiagnosed as Type 2 just solely due to age and managed ok on oral meds for 15 months until my BG began to rise and rise. I then started research (and come on here!) and realized I was, in fact Type 1. I told him I saw an endocrinologist when I lived in Guatemala who looked at my list of “5 reasons why I believe I’m Type 1” and checked off each one and said “you are type 1.” We talked a bit more about c-peptide and my D management in which he said things like “we are able to test something that shows how much insulin you produce” and I said, “yes, c-peptide” and he asked me if I sweat, feel confused, etc. and I said “oh yes, I experience hypoglycemia” Etc etc. I thought it was going well and he would come to respect my knowledge. Today was our second meeting and we did the talk about my A1C: “it’s under control”. The number? 6.8 and I was disappointed and he told me how at my age we like it to be higher and I disagreed. When we discussed my c-peptide (.10) he explained how “type 2 diabetics have a decrease in production of insulin” and I reminded him I was type 1. He said (politely). “Yes, you said that.” I didn’t think much about this besides a small irritation.
I left feeling frustrated but resigned. I would tell others posting this experience, “Find a provider who respects your knowledge and is willing to work as a team.” But there is no alternative in my town. The nearest town with more options is technically an hour drive over a winding mountain road. But for the next year at least there is construction that can make this trip as much as 2 hours each way. I can do it, but it’s a pain.So I figure, what the hell, he can think what he thinks and I can disagree but it doesn’t really matter as long as he writes my prescriptions. (Which he wasn’t debating.) Then I started thinking about the danger if he in fact documents me as being type 2. I am on a Medicare/Anthem combination and Medicare may not support the 10 a day strips I receive or even my pump if I was a Type 2. Not good! So I left a phone message telling him why I know I am a Type 1 and that there is evidence about Adult Onset Type 1 and suggested (nicely) he research it. I figured it would be easier for him to accept if it wasn’t face to face. Hopefully he will read articles from “his people” - AMA, ADA, etc. and believe them if he doesn’t believe me. And I’m ok with that…pretty much.
Hey Zoe, welcome back! I miss discussions with you!
I really can feel your frustration. The best advice I can give you is really pretty generic… But if you feel like you’re not getting what you need from your doctor it’s best just to move on to a different one. I certainly can appreciate how being in a small town makes that feel more difficult.
I recently made the difficult decision to part ways with my own diabetes specialist, for completely different (actually almost opposite) reasons (which was made even more difficult by the fact-that
a) he is by far the most knowledgable diabetes doctor in this state,
b) he works with my wife, and
c) he and I share MANY social connections to the point that we are semi-personal friend outside of work and will continue be to even after it becomes clear that I’ve cut him loose. I hope we can still be friends, but I wasn’t getting what I needed in terms of follow-through from his clinic------
the bottom line is just to remember that-- you’re not married to the random doctor who happened to appear into the room with you— you choose them, not the other way around… And the minute they stop giving you good reason to continue choosing them, it’s time to move on.
In terms of analogy, the relationship is like one with a prosititute, not one with a spouse… You’re just paying for their time and expertise, if either is lacking your money is better spent elsewhere–and likely aren’t going to teach them anything.
Thanks, Sam. It’s nice to know you all are here. Yes, you are right of course, and I’m sorry you too are having to make a touch choice doctor-wise. I guess I just don’t expect much. My old saying is I want a doctor who just writes my scripts and doesn’t bother me. If you get more, well, that’s great. But I guess I’m just wondering how much less is ok.
Sorry you had that experience Zoe. I would correct any errors about diagnosis immediately because that can have dire results in your treatment on many levels. Just ask to see the medical notes from his exams and you will see what he wrote and if he tried to change your diagnosis- then you can complain. That is one of my fears that someone will try to dispute my diagnosis when I need emergency treatment or other treatments- fortunately it hasn’t happened but you never know when you will run into a looney tunes.
I’ve had non endo doctors comment on how rare it is for adults to have type 1 after a certain age or that mostly children have type 1 etc. I set them straight immediately by telling them that half the type 1’s in the US are over 30 years old at diagnosis. It is frustrating to have to deal with this lack of knowledge/ignorance even in some younger doctors too.
Thanks, I agree. I was going to just shrug and let him think what he wanted until I thought of that issue of medical records. I will see how he responds to my phone message. I hope it didn’t sound too much like a rant…lol. I just told him to look up information about adult onset type 1 and gave him the diagnostic criteria that determines type 1. He’s young; maybe it’s my own age but I actually think the young ones are worse. They are fresh out of med school and think they know everything and haven’t yet learned to listen to (and learn from) their patients. I got spoiled when I lived in Guatemala for two years where you can function without doctors by getting all your meds without prescription and ordering your own labs.
You do realize your medical records are confidential right? As far as your Medicare approvals for pumps etc it’s not as if one errant billing code is going to derail your entire life and treatment plan;) you’ll be ok
A doctor can’t just cancel out a diagnosis made by another it doesn’t work that way
If a patient has diagnosed lung cancer and they go to a cvs minute clinic and the nurse practitioner says they think they have bronchitis it’s not as if Medicare stops paying for chemo
I’m sorry you have had to go through this. You have to realize, if you have already been diagnosed as T1 you just can’t “change” the diagnosis to T2. T2 means “diabetes of unknown cause.” You have to actually “disprove” the T1 diagnosis. That means you have to go through and prove that you are not currently and never have had antibodies. And that your c-peptide has not demonstrated severe insulin deficiency. A doctor cannot simply go back to your medical history and just “erase” test results and diagnostic conclusions from other medical professionals. It just doesn’t work that way.
And if your doctor seeks to harm you by messing up your Medicare and diabetes control you are not powerless.
My suggestion would be to enlist an advocate. Do you have a diabetes education center? Often they can interface with the doctor in a way that is more productive. Unfortunately some doctors believe they are “god” and believe that the patient is basically an uneducated peasant. But they will listen to another medical professional. Just a thought.
ps. And my doctor actually “codes” me as T1 even though I consider myself T2. I’m sure my insurance has absolutely no idea what type of diabetes I have.
Thanks guys, you’ve reassured me a bit. I realize I might have jumped the gun by making the assumption he had put down a type 2 diagnosis just from his comments. I feel somewhat reassured about the impact and realize I’m more bothered by the attitude then potential negative impact on Medicare coverage. He’s polite, and listens but I think he dismisses things that don’t fit into his preconceived (and often inaccurate) notions “Not being taken seriously” is a hot button for me and I need to remember to come across as a confident and knowledgeable adult not a foot-stomping child…lol. Hopefully I’ve planted a seed of doubt in his mind and he will do research from sources he believes. If he doesn’t contact me before I’ll just casually ask him if he put down a type 1 diagnosis when I see him in 3 months. The optimist ( and the teacher in me hopes this one is teachable! Thanks for the diabetes education center suggestion, Brian, I live in a town of 3,900 that brags about there being no stoplights in the whole county! But there are more resources in the bigger town over the mountain and I volunteered to visit the one endocrinologist and/or get antibody testing, though I hate doing things “for the doctor” when I know it should be the other way around.
I guess I should be grateful it wasn’t as bad as some stories I’ve heard on here. He was a lot more satisfied with my 6.8 A1C then I am, but at least he didn’t tell me to eat more carbs…or take me off insulin and put me on oral meds (over my dead body!) but then maybe I would go into DKA and could sue the clinic for millions…lol
Hi Zoe, welcome back. I get your concerns and rational skepticism when it comes to medical professionals. It’d be great to just absolutely trust them 100% but that is a risky practice. When it comes to diabetes, I think the well-informed patient easily knows more about diabetes and especially their personal insulin dosing than most doctors. I suspect this fact makes some doctors uneasy.
I think you can make this situation work if your doctor and his office respond well to all prescription requests. Your attempt to educate this doc shows a rational and legitimate effort to come to an understanding. I think getting a copy of all notes made by the doctor could allay your concerns.
I know that Medicare wants you to see a diabetes doctor every three months in order to qualify for Part B coverage of your pump supplies. I personally would accept once per year “routine” diabetes visits while my diabetes remains in good control.
You are self-aware as you deal with this doctor and this is a good trait. Responding/reacting in a measured way will serve your goals. I hope that this relationship just needs to season a bit and you both come to a comfortable mutually agreeable status.
Sometimes I think that the time-honored “smiling and nodding” tactic works well. You don’t need to go on record for every point that you may disagree with him, just the ones that have real world consequence.
I trust that you will navigate this relationship well enough. Good luck.
Thanks all, for the welcome back and the support. I’m not great at the “smile and nod” thing, though I can see its wisdom. Here in the clinic of this mountain town, everyone expects you to be ignorant, substance abusing and if diabetic, Type 2, overweight and “non-compliant”. (Apologies to the wonderfully well managed Type 2’s on this forum!). I felt the need to distinguish myself from that stereotype, but know I tend to go to far and thus intimidate people, especially those who see themselves as being the keeper of the expertise. I can even see some doctors having a genuine desire to help and being frustrated by my not so subtle implication that I don’t need or want their help. So, yes, hopefully he will begin to accept my competence and I will temper my responses, and we will have a working relationship that is at least mutually respectful if not particularly rewarding.
On a humorous note: I’m expecting a news story to break that this guy is, in fact, impersonating a doctor and never went to med school at all. Let’s see: Aside from not knowing it is possible to be diagnosed with Type 1 at age 58, he didn’t seem to realize it was autoimmune. He talked about “tests to show type” and I said oh, antibodies? And he said, no, c-peptide. When I mentioned having two autoimmune conditions he was surprised and asked what they were (he has my med list and diagnoses). I answered type 1 and Graves disease and he looked blank until I said “hyperactive thyroid.” He also was pushing NSAIDS for my arthritis and when I mentioned the heart risk he said it didn’t really exist, switched it to didn’t exist in OTC’s and then said it depended which ones you use. (Sounds like me as an Instructor when I’m dodging a question I don’t know the answer to but feel like I should!.). Hello? Anyone who reads or watches TV heard of those studies! I’ll have to check and see if they built a med school I didn’t know about down one of our mountain dirt roads
He is definitely a smile and nod doctor, you can take the prescriptions to keep the peace, but you don’t have to fill them! Even reading the newspapers will tell you that NSAIDS are not good.
Great to see you back Zoe.
Thanks you two! You make me miss being here though this “new” format still looks like a foreign country to me…more barren desert than rich culture, though you guys are definitely the latter!
Fortunately I think he was suggesting OTC’s. Fortunately too I don’t have to see him for 3 months so I have time to practice my “smile and nod” which is definitely not my forte!
I also like to remind “them” that the largest number of newly Dx’d T1’s are adults amd that those who were Dx’d as children get to grow up to be adults with T1!
You’re right, it doesn’t really matter much if he thinks you are Type 1 or a Type 2 on insulin…once you are taking both long and short acting insulins, it’s pretty much the same ball of wax in the end. You could always call Medicare and Anthem and see how they have you classified, and if it’s incorrect you could see a specialist in a larger city to get that settled and documented once and for all.
