Metformin? Good grief. That's like giving someone an aspirin to cure a broken leg. One more true story about a doctor with no brains today, and I think my head will implode.
Another thought. It seems as though some of these doctor's don't want to admit that they don't know all about everything. I remember my mother, in her late 80's complaining about her PCP. He often referred her to a specialist. She remembered the day when the PCP took care of everything. I think she even wanted those days back again. I suggested that nowadays, "we" know so much more about the human body, what can go wrong, and how to treat it. There is too much knowledge out there for one brain to contain. She thought about it and then appreciated the fact that her PCP recognized that he couldn't know everything. So, the only thing I can think is that the doc's egos get in the way - coupled with an major problem with how little time they can spend with each patient.
This is why I am confused with my diagnosis my GP noticed I was getting even thinner than I was and had me tested, my sugars were through the roof, but he put me on pills which I found out I am allergic to Sulfa, within the week I was on insulin. Then he sent me to an Endo, I asked about a pump, he said he will not sign for it, I said but I am type 1 am I not and he said well I would say your in-between, but I will not put it down as you are a type 1. The reason was he was the only one on call and did not want to take on another patient, he also added that pumps are not as good as people say they are? what. my sugars were in the high 20's but did not land me in the hospital, that was 13 years ago and still not been in hospital for DKA or anything. but everyone is sure I am a type 1. so why don't I feel like it is life threatening and everyone else does? should it not be the other way around? LOL
I went DKA in August 2012. The hospital told me I was a Type 1. A few days later when I went to a regular doctor to get a script for insulin. He told me "well, you might actually be Type 2". I had only done the most basic analysis of diabetes at that point and even I knew this guy had NO idea what he was talking about. I only used him to get scripts from then on and never asked about anything else.
Since I have moved around a lot, many of the doctors I have seen are totally unaware of type 1 diabetes and only vaguely aware of type 2 diabetes. I am usually the one to tell them everything they need to know. They only seem to know what medicine to prescribe. It is incredibly frustrating to think doctors could be harming so many patients because their patients trust them to know what they are talking about. People need to really do the research themselves so they can know if their condition is being managed.
agreed Blacktooth, I am starting to understand that. LOL I have a good Endo now and D team, that for the most part work with me.
When you get a doctor telling someone who is 5'6" and weighs less than 100 pounds to "lose weight" one wonders if he isn't reading from a script on his desk and doesn't even bother looking up at the person before him.
i weighted 110lbs i ended up with neuropathy all over my body so for the longest time hard to move still on bad days. I have gained 70lbs from lack of exercise, i told my doctor how depressing this was and that it was hard for me to get around to loose the pounds, he said well insulin makes you gain weight.?? i was 110lbs for more than 10 years before this happened, then I also quit smoking, I just keep gaining weight, don't know what to do, on a treadmill now so when i feel pain i can stop but not sure what else to do and it appears the doctor has not idea what to do either, the insulin makes me gain weight, humph, maybe all the pain meds they have me on. all I know is 70lbs is a lot to carry around and OMG I went from under weight to obese. how does one get back to shape? What's the magic solution. I am almost a vegetarian now trying to loose that is not happening either.
yup I'm depressed now. lol
yes. i totally agree. i don’t even know what type of i have. i know it’s related to Melas （Mitochondria encephalomyopathy with lactic acidosis and stroke like symptoms）and Mitochondria disease patients cannot take metformin as it causes myopathy. after my own researching not my endcrinologist’s. i think i have MIDD （maternally inherited deafness and diabetes）and i wish the masses would get it through their close minded skulls that diabetes is only an environmentally caused disease. in my case diabetes is merely complication of Mitochondria disease. if you don’t believe me google Melas and diabetes. please.
i’m on my own quest for Mitochondria disease awareness. Melas is a progressive, non treatable non curable disease. it oftentimes gets misdiagnosed for things like multiple sclerosis or psychologists think it’s all in our heads. and antidepressants cause autonomic nerves damage. google ‘Mitochondria toxins’ and click on the list from mitoaction. It’s frustrating when no one believes you .
Dfresh sorry you had DKA. That’s diabetic ketone acidosis, right? i was misdiagnosed with type 2. when i was given prescription for metformin my mother went through the roof. and she sent me a list of Mitochondria toxic meds. my problem was that i live in Japan, and had forgotten half my Japanese due to Melas（Mitochondria encephalomyopathy with lactic acidosis and stroke like symptoms） stroke. so i had hard time explaining what Mitochondria disease is. what happen when you become DKA?
To be honest, I've had T1D for 31 years and it was only rarely discussed until a few years ago. I have known several people over the years that called themselves "Type 1-1/2", and I never really understood what that meant until the LADA designation started up. Now with intensive insulin management and pumps, it's obvious that there were a lot of misdiagnosed LADA's over the years. And I don't think they even know yet all the subcategories that might exist. But you know humans, we like to put people into little boxes and label them. Over time there will continue to be better lab tests that can lock it down from the beginning, instead of having to wait months or years before we can declare which "type" a person is.
Well I started getting severe muscle cramps - so tight the muscles would lock and I would have to push my leg down with my hands to get the muscles to uncramp. Peeing all the time, chugging gallons of water. Eventually I started vomiting and could not stop vomiting, which is your bodies way to try to reject any sugar in your body. I could have lost a kidney but I was lucky it did not get that bad.
Just posted about my own condition, which I'm increasingly realizing fits the MODY profile well, insights welcome! https://forum.tudiabetes.org/topics/realizing-i-fit-the-mody-profile-well-any-modyers-or-others-have
In my comments to the FDA I included this issue...we just have to keep bringing it up at every opportunity. As Melitta has said, protocols are needed. This is insane and extremely poor medical practice.
Melitta as people have already commented...your work IS getting out there. Appreciate you so much!
With Type 1 autoimmune diabetes, which includes LADA, the tests exist to detect Type 1 even before it reaches the diagnostic level. For Type 1a, the tests are available and don't cost much money, the problem is that the doctors won't order the tests. Instead, most doctors assume that an person diagnosed with diabetes as an adult has Type 2, without performing appropriate tests to rule out Type 1a and monogenic diabetes.
Not to mention listening to the patient in front of them and taking their eyes off the first page of the chart and looking at the patient in front of them!
Couldn't agree more, artwoman, it's a no-brainer diagnosis! But the medical doctor has to look and listen.
Why do you think there's so much reticence to order the antibody tests? I had one of the leading diabetes researchers in the world as my physician for about a year and a half, started working with him within a year of being diagnosed, and even he just didn't seem very interested in doing the antibody tests (much less the gene tests related to MODY) because it ultimately wouldn't make much if any difference to how I was treated. I can see the argument, but it certainly would make a difference for my long-term prognosis, likelihood of passing the condition on to potential children, etc.
Niccolo, I wish I was better at attaching things, but maybe Melitta will chime in and post her white paper on this very issue. Of course it may be more critical for people with rapid onset type 1 being treated has having type 2 - but still a correct diagnosis is important and an incorrect one can have dire consequences.
Melitta - chime in here!
Melitta seems like a real resource on this forum, so I'll be curious to see her white paper. And I hear you on correct diagnosis, I was diagnosed as a lean Type 2 initially and put on a sulphonylurea, though fairly quickly switched to basal and then also bolus insulin.
Niccolo here is the link to Melitta's blog: http://www.adultt1diabetes.blogspot.com/p/blog-page.html