I read a lot of stories on here about people not getting what they obviously need. There are people who are pretty obviously type 1 or LADA who are misdiagnosed as type 2 and STILL not getting the insulin they need, and driving themselves crazy to avoid it; there are people whose doctors refuse to do antibody tests, there are people whose doctors don’t spend enough time explaining things, or don’t refer them for the diabetic education they need . . .
In the end, each and every one of us is responsible for our own treatment. If your doctor isn’t helping you and you haven’t fired him or her, why not?
I am lucky enough to have a great doctor for my diabetes. However I have had medical issues in the past that was not handled properly by doctors, so I will try and explain what I went thru.
Believe it or not getting an antibody test from a regular doctor can be tricky. If the doctor is affiliated with a larger medical group, then that group might dictate the tests he/she can preform due to medical reimbursements. I had this happen when I first began having thyroid problems. My general practitioner showed me the letter he received warning him against ordering the thyroid antibody test. But that led to me being sent to an Endo, so it all worked out.
I have also been thru the doctor won’t listen saga. No matter how hard you try, they just will not beleive there is something more wrong. Or they think you are exaggerating the condition. This can lead to frustration, then mild depression. When this happened to me I would get depressed and think “well the doctors convinced, so I must be crazy”.
And finally, it could be that it is not too easy to switch doctors because of insurance reasons, especially in regards to a specialist.
Mmm, I don’t know. My mechanic knows more about my car than I do. But if I take my car to the mechanic twice for the same problem and he doesn’t know how to fix it, I would move on to a different mechanic or a different source of information. I don’t understand why people trust their doctors any more than they trust their mechanics. They are only other fallible human beings.
We may be responsible for our own treatment but, if I as a patient do not know any better what do I do? How am I supposed to get the correct treatment? What happens if you are in an area that does not have a doctor who knows anything about diabetes? (I have been to an endo that did not know how to turn on a glucose meter.) What happens if your insurance company does not cover the specialists, supplies or the testing required to treat you? What happens when have a doctor that does not stay up to date on the latest diabetic break through. What if a doctor gives you an explanation of why they will not prescribe certain treatment for you and the explanation sounds truthfull. (ie pump or cgm) What if a diabetic does not find the wonderful website like TuDiabetes so they do not find out about the latest information?
It took me getting diagnosed with a frozen shoulder and the doctor saying by the way lets do a glucose test for me to get diagnosed as a diabetic. I had been showing symptoms for quite a few years and the doctors blew me off. It took another 3 years and 5 doctors for them to do the tests to find out that I was not a type 2 diabetic but a type 1 diabetic. The endo I have now has a partner who is a type 1 diabetic. I had to wait over a year to get an appointment with her. She is not accepting any new patients and you have to wait 3 to 4 months for an opening if you miss your appointment.
The only part of my diabetes team that I trust unconditionally is my glucose meter.
Doctors and other medical professionals are fallible just like everyone else. I listen respectfully and without judgement to everything they tell me, then I go and do my own reading and research and make my own mind up. In general I’ve been quite lucky as I think the care I’ve had has been really good, and everything made sense after further reading and reflection. The only notable exception was the diabetes nurse telling me I had to eat 130g of carb a day - and she was the head nurse, with many years of experience in the field!
Most doctors don’t live with D 24/7. I’ve found that consistently the best advice has come from committed, enthusiastic, hard-working fellow PWDs who do live with it 24/7. There is so much good information out there, a lot of it generated by PWDs. Sure, like you, I didn’t know much about D about dx but when I got home from hospital I literally spent four weeks just reading everything I could find. You soon learn to sort out the rubbish and the noise, and equipping yourself with this knowledge is incredibly empowering and uplifting.
Purposefully falling out of the medical system is pretty tough going. As a T1 I’ve been there, done that, not gonna go there again of my own free will. I would be hard pressed to recommend to a person that may be T1 (even if not yet diagnosed) that they should drop out.
Most folks with insurance these days require referrals from their PCP to get anything done. You’re right, the patient in the end is responsible, but when their only leverage is a PCP that isn’t listening, there are very few avenues for most.
Yes, I sometimes get frustrated with the medical-industrial complex too.
I’ve had my share of doctors who displayed incompetence or who I lost faith in. But I’ve often held on for quite a while in the hopes that they will redeem themselves. I’ve had to intervene at least once when the actions of doctors threatened my health and life and I’m glad I did. But on the other hand, I also expect that doctors will do their job, be competent and always act in my best interest. But given that they are only human, I won’t place all my bets on them doing what I expect them to do. My last endo, I hung onto for too long. He never listened to me even when I listed only one or two questions on a piece of paper, he never addressed my concerns of blood sugar control, he had his own agenda, he never successfully treated my diabetes, and continually ordered expensive uncovered cholesterol tests despite specific directives not do so. When I found that he had accepted $250,000 from pharmaceutical companies for “speaking fees,” I lost any hope of trusting him again. Like I said, I hung on for too long.
It is a difficult balance between shopping for the diagnosis and treatment that you want and being willing to listen to medical advice that you may not like or believe in. In either case, I’ll not abandon the medical system, I need them, I just want and expect them to do their job.
Frances- The best thing to do with auto mechanics is to get 2 different free estimates from 2 different mechanics to make sure they are truthful and know what the problem is. But with medical insurance that tactic might be kinda tricky.
But that is the whole point isn’t it? Why will we “shop around” or check up on our mechanic to make sure they are not blowing smoke and when dealing with our health, which as you state is infinitely more complicated, we are content to go to the first person and “trust” they have kept up to date on appropriate treatment for people with DM. I certainly understand someone who does not understand what they need staying with that provider but once you do know what you need and realize they are not giving you what you need why stay? If you have insurance that will not allow it ,or if there are limited people you can see, you are kind of stuck but if you have options I certainly would and do shop to find someone who will treat me as my health requires being treated.
I think there are numerous complex reasons why people don’t switch doctors but I think there are some simple causes too: 1) There aren’t that many endos available, period 2) Endos are trained to read stats and I imagine people who become endos enjoy that activity more than being warm and fuzzy which leaves us feeling a little disappointed 3) Starting all over again with a new diabetes doctor is an upheaval and if you only go to them 2 or 4 times a year it’s easy to say I’ll find a new doctor for next time and then not dredge up the energy to do it. 4) Health insurance issues and 5) We’ve not been raised to go doctor-shopping the way we purchase other commodities. 5) It’s human nature to complain when something’s not going well and not raise a flag when it is.
Sometimes just moving onto a different doctor is easier said than done. Back in 2003 when I was first diagnosed with gastroparesis, my doctor knew I had something that caused BS problems yet I was treated like I was the one causing the problems. He was not the only doctor that treated me that. I just quit asking for help. At the time, I was working 12 hours days and did not have the time to get on the internet. When I found the DOC, I found the help that I needed.
In 2005, I had a bad foot infection & picked up MRSA while in the hospital. After being treated with 2 rounds of the antibiotics for that, I was told the infection was gone. The doctor did both a culture and an MRI and both showed the infection was still there but he told me it was gone & stopped treatment for it. I had a bad wound and I was not expecting things to get better overnight so I continued with that doctor until it got to the point that I knew something was not right. Until I got my records for my new doctor, I did know that I had an infection when he stopped treatment. Lesson learned there: always ask for copies of test results!
After I switched doctors, I went thru several surgeries to save my foot. I lost part of the bone in my foot and had a bone graft. After I started moving around, I was having a lot of pain in my foot. My doctor would not even acknowledge the fact that I was having a problem – he treated me like I was lying about it. I was seeing the doctor that saved my leg so I was very reluctant to change doctors. I finally changed to one of the other doctors I had met at the wound center I went to. His first response when he saw my foot was “that needs fixed” and he looked at the orthotics the other doctor told me were fine & said they would never work. I was convinced that I was stuck with the pain because I did not want to go thru surgery but my new doctor actually helped me with the pain by modifying my orthotics. I believed that the doctor that did my surgery was a good doctor and I was reluctant to change doctors.
I started having thyroid problems in April 2009. I have yet to find a doctor that understands optimal levels & will help me. I have been thru 4 endos and just as many PCPs. I have been told by a bunch of them my thyroid was fine when my tests results were not even within the lab range let alone optimal range. I am still looking for a doctor to help me with that. At this point, I am thinking I am going to have to move out of state because I have been thru so many doctors.
In November, I saw the doctor I see for my foot – he is actually a GP that specializes in wounds. I told him that I feel like because I have health problems, doctors think it is OK to just let me die. He said he actually hears that 3-4 times a week. He told me that he has seen a big change in attitudes within doctors and he dreads the day he ever gets sick. I know I am not the only person trying to find a decent doctor.
What we need on this website is an area for people to review their endos or GPs and post those reviews, so that other people looking for doctors will know who is responsive, who is well-educated, who has a CDE, etc. Instead of Angie’s List, we could have Manny’s List. People occasionally ask, “Who is a good D doctor in such-and-such-a place,” but having a good database would be even better.
That type of review wouldn’t work because…
A (dishonest) doctor could log onto tudiabetes with fake reviews and give bad reviews to all of his competition endo’s in the area in order to get more business himself.
A review list is a great idea in a world that’s 100% honest though.
Straight up? I can’t! I don’t even have an endo right now, and the waiting list has me waiting until next October to see one. I am one of the lucky ones, since I am a type 1 (LADA, I suppose) I was bumped up on the list.
Yep, for right now I have no real choice but to find out things for myself. The same goes for any Endo, pediatrition, family doctor up here in Quebec, Canada. There are so few of them to spare, you are in heaven by just getting one!
There are already sites that provide reviews of doctors. Check out Vitals.com. You need to take these sorts of things in context. There is a significant bias in evaluations. Almost nobody who has a good experience ever bothers to comment on their doctor, but anyone who has a bad experience will splatter criticism left and right. My “former endo” is evaluated quite poorly, but when I selected him in Mid 2009, there were only two negative ratings, one which said “HORRIBLE” and another which complained about a rushed feeling and a policy on prescriptions, hardly big negative vibes. Since then, a wave of negative reviews.
It is probably reasonable to look at these sorts of things. A large number of all positive reviews is a good sign. But a wave of negative reviews is not good. I can verify much of what the reviewers suggest about my former endo.
Great suggestion Frances!