I feel like I'm wasting money that my insurance company and I are paying them. I have had pretty decent luck with the doctors I've seen since the early 2000s. I had a pretty lengthy period where I didn't see a doc, but the pharmacy kept getting refills from nurses or whatever, because their process was so automated. Eventually, I got cut off and found a GP who turned out to be pretty sharp, either knew or read up on what to do. I sort of did my own thing anyway, which in retrospect was sort of dumb. When I asked for a pump, he said "you need to see the endo for that." I could pick two and chose the young, Indian doc, rather than the head of the department white guy, reasoning that in the rural community I resided in, the Indian would be underselected and easier to get appointments with. This proved correct. She was excellent at math and took my insane log and turned it into an almost perfect estimate for pump settings for which I am always thankful.
The biggest danger faced by people with diabetes is getting stuck with a doctor who refuses to prescribe enough supplies to meet our needs. We still hear about these docs online and, since the online community is the tip of the diabetes iceberg, I'm sure there are more of them out there.
That’s really awesome. It simply mean that need to be careful, not absolutely relying on “my doctor says”. We need to continually seek for knowledge. That’s great Herr…
I'd add that some of the "inexperience" that we can run into is because the medical industry sets lower standards for people with diabetes. The goals of A1C of 6.5 and 7.0 advocated by various medical organizationss in the US sort of set us up to "fail" in even attempting to have normal BG. These imply an "average" of 140-150ish BG that is well-above "normal." I'm not a doctor and have no years of clinical practice with anyone but myself but I think that aiming at 140 will lead you to more ups and downs than aiming at somewhere between 80 and 100. I have achieved my best control when I work at a target and balancing there, rather than aiming at the broad side of a barn and fly back and forth around it. I think a bad goal may lead many of us to "give up" and feel badly but I don't think that this is the fault of people with diabetes, when the medical industry is giving us bad information.
I agree with AR, Ayomideji. Unfortunately, doctors who don't know much about D are more common than ones who know a lot. And the ones who know a lot it's almost always about Type 1. One doctor I had admitted he hadn't had any Type 1 patients. I appreciated his honesty. If you are lucky enough to find a knowledgeable doctor you can work with (most likely an endo not a regular doctor) you are lucky. If not, you do what most of us do which is read, come on here and learn to manage our own D. My doctor just writes my prescriptions for me.
I notice that your page says "Type 1" but also says "orals, diet and exercise". Are you LADA? (a slow adult onset form of Type 1). I'm LADA as well and was on oral meds for 15 months until my numbers started to go up and up. Current thinking says that all Type 1's should start on insulin as soon as possible to preserve beta cells.
I think in the US, general medical education spends a day or two on diabetes. Jeez. No wonder we walk into the office a GP and find they don't know much about diabetes. I finally sought the advice of an endo when it became clear that my GP was not competent to treat me further. She absolutely refused to prescribe insulin and finally when I requested the antibody tests and a c-peptide to determine whether I was T1, she said she didn't know how to interpret them and that I couldn't be T1 since T1 was only diagnosed when you ended up in the ER with DKA. Jeez.
I have diabetes, I have T2, but like all of us I live with it everyday. Over time, I will have a pretty darn foundation of knowledge about diabetes. And I now clearly know when a doctor is competent. But there is another side to what I want out of a doctor. I want not only a doctor that is knowledgable, I want one who listens and lets me make decisions about my care. At one point I had to leave an endo who was quite knowledgeable, but he didn't listen or involve me in my own care. And I have had doctors who, even if they were not diabetes experts, they listened, gave me my prescriptions and really helped.
You can read more about my experience looking for a new endo here.
I think SuFu, a former member who was in med school, reported that it was a day for endocrinology. That was right around when he said he had to stop blogging before he got in trouble for airing his views which I think were not too dissimilar to ours.
My reaction to inexperienced doctors depends on my expectations. I was diagnosed by a GP who had little knowledge about T1D and was upfront about it. I appreciated her honesty and began to see a CDE. The CDE was sympathetic, but often couldn’t answer my questions, giving the excuse that she primarily worked with people with T2. I found that response unacceptable and switched to another CDE. This one was a bit more knowledgeable, but wasn’t interested in helping me fine-tune my BG control because she thought it was good enough. I didn’t care for that at all!
After that, I gave up on CDEs and now do my own research and only see an endo. My endo isn’t totally up-to-date in her approach to treating T1, but she’s willing to troubleshoot with me and slowly work toward helping me solve problems in D management. It’s not perfect, but it’s working for now. In a way, I think that unless a doctor also has firsthand experience D, we are always going to have better working knowledge of BG control, insulin & medication dosing, and all the other aspects of day-to-day D management. What matters most to me is their willingness to keep learning and collaborate with us respectfully.
I went through hell looking for doctors after being diagnosed. Each doctor I went to wanted to diagnose me as a Type 2 just because I was still producing insulin. Totally disregard the fact that I went into the hospital DKA (upon diagnosis).
Anyway, one of them, and I still can't believe it, wanted to keep treating me with metformin AFTER my GAD antibodies test came back positive. I begged her to put me on insulin therapy because it was becoming harder and harder for me to control my BG's.
I left her and actually asked around about doctors in my area who treated Type 1 Diabetes. MANY of these docs are ONLY versed in Type 2 Diabetes (since it is so prevalent and publicized). If you are type 1 you have to go the extra mile in some cases...
I finally found my new doctor (who practices in the same facility, the irony)and have had better treatment since then.
I've learned that some of these doctors care more about being right than the welfare of the patient. You really have to be your own advocate and learn as much as possible on your own. Diabetes is the only disease out there where it is totally up to the patient to handle the bulk of their treatment.
I agree with everything you said, Toddy! How absurd that they would want to call you Type 2 because you were producing insulin, despite being in DKA. Then to want to continue giving you inappropriate treatment just so they didn't have to admit they were wrong! I was living in a Third World country at the time my blood sugar started going up and up (after 15 months on orals). My doctor agreed with my assessment that I needed to be on insulin even though neither of us understood why. I'm ok with a doctor not knowing something but can't abide one who wants to insist he is right when he is obviously wrong!
Exactly! And it is terrible for someone newly diagnosed because, naturally, you think that the doctor knows best.
People like that should be sued for malpractice. The crazy thing is that I went into her office a year ago with a 555 BG, and she shot me up with Humalog on the spot...Yet she still wanted to treat me as a 2. Horrible.
ALSO, she did not want to treat me with insulin because, "It will make you start gaining weight."
And there I was, in her office, after an episode of DKA, weighing in at a whopping 123 pounds (down from 155...at 5'8 inches tall)...Yet, she did not want me to gain weight.
She was a horrible doctor. I would write her name so that other T1's can avoid her but I don't want to have a libel charge.
Difficult question. I prefer doctors that are honest and listen. My PCP, told me right away that he was not knowledgeable enough and referred me to an endo. I found this great, he didn't give me bad information or medical care and wanted the best for me. My endo will listen to me and the we work together for a treatment plan. In my opinion this is how any long term T1 should work with docs concerning diabetic treatments. I also like doctors that ask questions, they are showing that they want to learn and I can teach them. The doctors that I have problems with are the ones that tell me what to do without reason or knowledge to do so. I have been T1 long enough that I will tell them why that won't/can't happen and possibly leave their practice.
This all changes based on the profession/specialist. Such as my optometrist, he is great with eyes, but he has limited knowledge of diabetes. I give him much more slack, but still correct him. I once told him my A1C was 5.6 and he responded that that was great and if I got my A1C even lower I would be cured. I laughed at him with a full, hearty laugh, then he said well that not entirely true. Point being that he is very competent with eyes, so I will see him for eye exams and correct him when he steps out of line.
Pharmacists and Dieticians are the medical "experts" that often mean well, but say the darndest things.
I go to a clinic that specializes in Endocrinology but I have not actually seen one of the doctors in about 6 years. I see a RN/CDE/CPE they have several and it really makes no sense to see a Endocrinologist if your just getting what I refer to as a tune-up.The Doctors are generally not good educators and the 15 min of time with them is not enough time to take care of all of my needs, If I'm having some issue it will take more time and my clinic can schedule up to 1.5 hours of time if I'm having some issue that needs investigating or counseling.
All I can say is never stick with a doctor that your not happy with for what ever reason...trust is my #1 objective when selecting a doctor. I'm older than most of my doctors and most of them treat me with respect and listen to what I have to say. I can also say that when my doctors where much older than me I did not receive the same kind of treatment I receive now, as a older diabetic they value my experience and success's.
I feel very fortunate to have the medical team that I currently have - an endo and a primary care doc (internist) in the same clinic. Being in the same clinic, they work really well together and share information (which I've found is hard to make happen between doctors in different groups/clinics).
I was diagnosed initially (and incorrectly)by another doc as Type 2. I was 27 and not overweight, had all the classic symptoms of unquenchable thirst, constant urination, eating everything I could get my hands on and losing weight rapidly, and so tired I would lay my head on my desk at work unable to function. Yet my internist kept pushing the oral meds. I was literally begging for insulin.
Finally my gyno told me at my annual exam "you need to get to an endocrinologist fast, even if you have to mortgage your kids to do so" (really that's a quote, it's stuck with me all this time). I was young and I didn't even know endocrinology existed. But my gyno gave me the name of someone he knew from med school and off I went to the endo. About 25 years later, I'm still with the same doc, who correctly diagnosed me as Type 1.
What I like about my endo is that he listens, he doesn't rush me, he doesn't make me feel judged based on numbers or make me feel as though it's my fault when my efforts aren't successful. He's always available if I have an immediate problem. I feel lucky because he's really good at what he does - so much so that he now only accepts Type 1s as new patients. Most importantly, I feel like my medical team respects me - and I feel like as long term Type 1s, we've earned that - so I appreciate it.
One of the biggest problems that I see for Type 1s is the lack of endos or even primary care docs with experience in treating people on insulin, particularly in smaller communities. In my community, there is one clinic in town with a knowledgeable endo group - that's it. So if you "fire" your doctor, there aren't alot of other options anywhere in driving distance. I feel badly for those people who aren't in an area where they can find a doctor that they are comfortable with and don't have alot of choices.
Wow, that really makes a lot of sense for an endo to specialize in treating Type 1, that way he can be an expert in one thing that not many doctors specialize in because of the lower population.
I'm sure someone already mentioned this but general physicians usually don't know much about diabetes. They are there to diagnose and prescribe medications as they see fit. I wouldn't see a general physician about my type 1 diabetes because they don't specialize in diabetes. Endocrinologists are the only doctors who fully understand since they specialize in endocrine disorders such as Diabetes.
That is generally true, Desi. But many of us have learned to manage our own D. I have only seen an endo once.From what I've heard their are excellent ones and ones who don't know as much as you'd think or follow ADA guidelines. I use a PCP to write my prescriptions and manage other issues and manage my D myself asking questions on here when something befuddles me. Since we are using to dealing with our Type 1 24/7 we are usually more able to tweak doses, etc.
Zoe, I am learning that myself. I am finding it more beneficial to learn from other Diabetics online as opposed to going to the doctor. I just go to my endo for check ins and if I need changes to my prescriptions.
Primary care doctors are definitely not the ones to go to for advice. Again, they believe that everyone is type 2 and if you're a 1 you could be losing valuable time and Beta cell function.
The PCP's that I went to TOLD me that they wanted to wait until my pancreas stopped working to put me on insulin. I am not kidding.
Yeah, totally forgo the honeymoon and throw me right into the seven year itch why doncha.
Unbelievable, Toddy. (But delightfully put..lol)