I’ve been reading Tudiabetes posts for a couple of months now. I realized I had diabetes in Dec of 2011. It came on suddenly with maybe 3 warnings of low bg but I didn’t know what that feeling was. The day after my family’s Christmas meal I was so thirsty I felt like I had a hangover as I was so thirsty. By the 3rd day my vision blurred and I knew what it was. I had read enough articles to realize that much. However I didn’t really grasp that there were more than one type. I went to my regular doc and he comfirmed and put me on metformin. A1C was 11. Metformin did not help much but I did lose about 25 lbs. but was too skinny. Any time I ate any carbs my bg went way up. Doc changed my meds a time or two and finally would just shake his head at me. I asked for insulin and he put me on a 70/30 mix. He acted like I was his only patient who asked for insulin.That worked a little better for a little while. I finally asked him for a fast acting and basal insulin. He put me on a sliding scale when my bg reached 150! Meanwhile I needed to have surgery but couldn’t get my A1C below 9. I finally had to ask him to refer me to a specialist as I felt he wasn’t helping me. Well that made him aggravated and that is when I learned he thought I was non compliant. I went to the new Doc and he suggested I get a pump and insurance would help pay since Iam a T1. I said, “No, I am type 2.” He did the tests and he was right! I wish I could tell that 1st Doc but I fired him. Anyway, I didn’t have a clue about this disease until I found this site after I got my pump. You guys have been a lifesaver and I wanted to to let you know. So Thank You So Much!
I’m glad you found this site, too. We people with diabetes (PWD) can offer to each other something almost all doctors can’t. They have all their study and textbook learning but only a novice competency at insulin dosing. We live with diabetes all day, every day. With a good attitude, paying attention, focused trial and error testing, our competence in treating and living with diabetes far surpasses what even the specialist diabetes doctors and diabetes educators can offer.
The most significant tactics for dealing with diabetes I learned here (and in books) but never once learned in 32 years of 4x/year medical visits.
I congratulate you for your aggressive self-advocacy. Some doctors may think we don’t have the capacity to deal with diabetes well but your belief in yourself trumped that and you found a way. Life is short; we can’t waste time with ignorant doctors.
I’ve found that diabetes knowledge, especially gained from other PWD, combined with the willingness to test and analyze results is the answer the living well with diabetes.
Welcome to TuD. I look forward to reading more about you!
You can still tell the physician who mis-diagnosed you with Type 2 that you have been correctly diagnosed as Type 1 (or 1.5, LADA) even though you fired him. Just call his office and leave a message. Most of us learn through, in addition to other methods, making mistakes. I’m glad to hear you have a correct dx and are doing better!
I agree with Terry4: I’ve learned way more about D from TuD, Parents of Children with Diabetes forum, and 3 books (Think Like a Pancreas, Pumping Insulin, and Sugar Surfing) than I ever did from med school, internship, residency, and my daughter’s Pediatric Endo combined.
Thanks for welcoming me to Tudiabetes. It is nice to finally tell my story to people who understand the complexity of this disease. It really does make me feel I am not alone in what I have to deal with. My A1C went down to 7.7 and that was just three weeks on the pump. Next test is in Jan.
I have read Think Like a Pancreas and Using Insulin (recently) and look forward to Sugar Surfing.
Perhaps one day the the type of treatment I have learned on this site will be the norm rather than the exception from our health professionals. There are so many people who just don’t know there are more options than what their health professional may offer.
Maybe 2% of what I know about controlling diabetes was learned from medical folks. The other 98% came from reading, self-study, and this community.
There are reasons why doctors don’t know as much about management as we do, but the two biggies are:
- Doctors are primarily trained to attack and defeat acute illness
(“take your penicillin and your pneumonia will be cured and you can
forget it”). They are not taught how to manage chronic conditions
- No doctor knows as much about your body as you do; you’re the
only one who is there 24x7. You have to be your own expert for
the simple reason that no one else can.
Words of wisdom, David!
Such a terrible story @Chinara. Treatment wasn’t working so you were non compliant. A physician should be about healing not blaming. Diagnosis isn’t the answer that says they’re right and others are bad? So he has malpractice insurance but good you survived. Maybe you could ask for a malpractice settlement.
IMO, the world would be a better place if everyone was less litigious. And not correctly diagnosing Type 1, combined with the fact that the OP voluntarily sought care from another physician, along with the fact that the OP did not go into DKA or require emergency care does not constitute malpractice. Regardless, I’m sorry to hear that the OP had such a frustrating and difficult time of it. We physicians need to remember that, although only approximately 5%+ of people with diabetes have Type 1, the odds are that we will encounter at least one of that 5%+ at some point in our careers and we need to diagnose them correctly and treat them accordingly.
I think a sympathetic jury could be impaneled. And the pain and suffering with unknown long term complications could ilicit that sympathy. One could emphasise studies that prolong the honeymoon period and the possibilities lost. Doctors spend a lot on malpractice insurance. But my greater sympathy goes with the misdiagnosed. But I see your point that doctors face heavy expectations. And that 95% successful diagnosis is pretty good.
I am glad you pushed and found the right doctor for you. Welcome to the site and to the diabetes community.
I didn’t respond to the mention of “non-compliant”, because that term tends to send me ballistic and it wouldn’t have been constructive. It’s the cheapest, easiest cop-out I know of.
Just so hard to believe that doctors don’t know much about it. What the heck do they do at med schools.
Diabetes is such a common disease and has been around for so long. Most of the pcp’s knowledge is pathetic about it. I have a feeling they just pretend.
I was fooled for full 5 years by my pcp’s. What is wrong with the system?
Thanks again everyone . I guess my feelings are mixed about my misdiagnosis. At first I was angry because I needed to have surgery quickly. I kept thinking he would refer me to a specialist as it was clear his strategies weren’t working. But that didn’t happen. I felt we would have kept on until I ended up in the hospital if I hadn’t asked for a referral. But it was my need for surgery that had me really stressed. I later put it down to the fact that he is a GP and does not specialize and may not even have any T1 patients. In any case I did survive, I just wasted 3 years going to the wrong type of doctor. My endo is ok but its clear he doesn’t have T1 diabetes. So I take what I think I can use from him and try to continue to learn on my own. But, oh the things I didn’t know is mind boggling.
I agree that GPs are not specialists and wont know much about type1 diabetes.
If they are not sure then why do they rush to label it as Type 2? They are reluctant to do any tests which would reveal the type of disease.
I insisted on getting antibody tests done and that confirmed my lada. I asked for an endo referral at that point and didn’t listen to him any further.
We are thankful that we live in the age of internet.
I feel more qualified to able to guide somebody if they have any symptoms due to fluctuating bg.
amen to that!
I find it hard to believe that doctors are not more competent with diabetes. Think about it, there are some 209,000 primary care physicians in the US. With 29M people with Type 2 and 1.25M people with T1 that means every physician is serving 100 T2s and 5 T1s. And because those of us with diabetes have so many comorbid conditions we actually represent an even higher percentage of their practice. Medical school and intern/resident diabetes education may be woefully inadequate but any physician should promptly realize that they need to be well versed in diabetes if they are to serve their patients competently. Being able to at least screen if not diagnose T1 would seem to be a fundamental competency.
You’d think so, wouldn’t you? At least, any halfway thoughtful person should, and one would like to think that med schools would contain a few, somewhere. This very point did and does leave me thoroughly nonplussed. I really don’t get it.
For the first several years of diabetes I saw only primary care family medicine doctors— I encountered no incompetence in this regard. I was on insulin AND metformin on day 1, and metformin was dropped as soon as my labs came back— and my case involves a lot more gray area than most— I am truly surprised to hear people are encountering primary care doctors they don’t believe understand these issues-- that has not been my experience.
Sam, you’d be surprised. There are a lot of them out there. One would be too many, and there are a lot more than that. One of a number of reasons why I went shopping and sat down and interviewed doctors the last time I needed a new one.
I didn’t have any problem with my initial dx–my symptoms were acute and had come on rapidly over just a couple of weeks, and I was still in my 20s, so I think T1 was more the natural assumption than otherwise. But I DO have complaints with several of the PCPs I had over the next 20 years who resisted giving me a referral to a specialist and wouldn’t listen to my desire to change to a more current form of treatment. “You’re doing ok, why change it?” Well, I wasn’t doing ok. My numbers might have been decent, but my life was far more difficult and constricted than it needed to be. Not being specialists, they wanted to stick with the treatment they knew–that was safer. And in the HMO world, which is what I was in, referring people to an outside specialist was strongly discouraged. I really had to struggle to get better treatment.