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I'm completely confused. In November, my brother left the hospital emergency room and he died shortly after in his bed. As they could find no other cause they are saying it must have been diabetes.
I saw my doctor before Christmas and I told him about this. He was clear that my brother "must have had a different type of diabetes". Really? Until June we were both prescribed the same meds which simply did not work. Of course, we were both pushed and pushed with the diet and exercise stuff as well. Even now... the doctor's advice to me is lose more weight and get more exercise.
I weigh 130 right now and get plenty of exercise. I have just recovered from neuropathy and diabetes-related infections in my legs. The way I was able to accomplish this was to stop taking the drugs that were causing my numbers to go sky high. I was pleased that he at least gave me B12. I can't change doctors because this is the guy who took the non-compliant off my record, supported me when I stopped the sulfs and was the first to prescribe test strips. Following the advice on here really helped but managing my numbers is a constant battle. How can he tell me that I have "just a little bit of diabetes"? He did promise me insulin if the numbers went up again but, now that he has built his new practice, he has forgotten that and is just like all the others...pills, diet, exercise.
So now that I'm clinically depressed... I know this because it is familiar and always triggered by grief... I'm afraid I will lash out or burst into tears at my appointment next week. I just want to scream that the only test for pancreatic function of T2s in this country is death!! I hope that posting this on here will prevent me from saying these things to the doctor on Thursday. I want to stay quiet get my prescriptions for Metformin and test strips and get the h out of there.

Thanks to anyone who listened to my vent.

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I'd be looking for a new Endo pronto. I don't know your history of managing this disease, but at least here in the US when you transfer care to a different doctor, you can request those medical notes be sent to the new Dr managing you. They can then review all the other Dr's treatment notes, etc. I mean I imagine several of us have had our histories of being "non-compliant" this is a hard disease to have to live with on a daily basis, what matters now is how compliant you are being. Don't settle for sub-par care. If you are confused with your treatment or feel you could benefit from additional treatment your Dr is not giving you then definately shop around. You always have to be your own advocate, and if something isnt making sense or you are unsatisfied move on. Find someone who clarifies things, will support you in your treatment. Good luck.

Thanks so much Christy. We have a doctor shortage here and it's tough to shop around. Sorry to hear that you had to live with this "non-compliant" issue too.

Whoa, IMO you need to get to a new endo. NOW. I don't know how tall you are, but at 130 pounds, I don't think you should be told to just lose more weight. I am 5 feet tall and just under 130 pounds and my endo says my weight is fine (I am pretty muscular).

What is your A1C?
What is your fasting BG?
Have you had your c-peptide/insulin levels checked?
Have you been tested for antibodies?

Type 1 diabetes (which is when your body isn't producing enough insulin) is usually the result of an autoimmune disease. There is no diet or exercise that can stop this process and it can start in adults (contrary to what many believe; about 50% of people with type 1 are diagnosed as adults). In some adults, the onset is slow, so at first they may seem to benefit from dietary changes, exercise, and oral medications. But the need for insulin is guaranteed.

Did your brother die from DKA?

Hi MyBustedPancreas. I've been told that they don't do the tests here.
We don't know what happened to my brother as we have been unable to find out the reason for his stay in emergency or the result. I've been told I will have to pay a lawyer. They did an autopsy and there was no indication of heart attack, stroke or cancer so... it is diabetes by default. As there have been 3 sudden deaths on the non-diabetic side of the family, I refuse to accept this reason without the facts. There are many with diabetes on the other side and all have lived well into their 80s and 90s. My brother has 2 daughters. We can't let this go.

What???? Wow. That just seems so crazy. Just curious, do you know why they don't do those tests? Is it cost?

The problem is that the only way to give you the correct treatment is to know what type you are. Some of the oral medications are actually quite dangerous for type 1s, as they hasten the death of beta cells and can cause kidney problems. At the very least, if you get on insulin, you'll be getting the treatment appropriate for a type 1. When do you go back to the doctor? If you can at least convince him/her to put you on insulin, that should be a step in the right direction.

How have your blood sugar levels been?

I am sorry you're going through this, but you're right to keep pursuing it. You need some answers.

Hi MyBusted Pancreas. I don't know why they don't do the tests here. I think they reason that, as long as one receives the correct treatment, the tests don't matter.
It is interesting that you brought up the kidneys as my kidney numbers were up while I was taking the drug. Apparently they are fine now.
I have had my appointment and, while my A1C is up, it looks like I'll be able to manage for the next 3 months.
Thanks so much for responding. Joanne

I think many of us have struggled with not getting the care we need and deserve from our doctors. In the end, we have to realize that we must "rage against the machine." Nobody is going to advocate for us, we have to be our own champions. If you are getting the care the you need and deserve, you need to take control. You need to be up front with your doctor and if you can't work with this doctor, then you can see other doctors.

Hi BSC and Nel. I have really thought about your responses and you are both so right. They say that the definition of insanity is doing the same thing over and over and expecting a different result. The doctors here are employed by the government and adhere to CDA protocols. They seem to regularly attend overseas conferences funded by the drug companies. It looks like everyone is on the same page. My brother and I reached out to CDA advocacy and other medical associations with the same result... nothing. I guess I am going to have to go to the member of provincial parliament. Now that the good news is that all t1s in this province can be approved for a pump, it is possible that we may find a member who might take on the plight of the rest of us. At least they might help us to cut through all this red tape and find out what happened to my brother. Thanks so much for your input. Joanne

I agree with the others in this thread. Time for a new doctor, since it is obvious this guy isn't the answer. If you're scared of this guy why bother to go see him? Any doctor can put you back on a so called "compliant" list, whatever that is. Why is he trying to label you anyway?

Hi Mike. It took me almost 4 years to get off that list. While I did take the diabetes drugs, I refused to take statins and blood pressure meds. I already had problems with low blood pressure and I was just too scared to take them. I still have low blood pressure and no cholesterol issues.

Wouldn't it be great if everyone could take a Tudiabetes buddy or two with them to the doctor? Write our names on a piece of paper and put it in your pocket, we'll be with you in mind, if not matter. Just know you're not alone, and you're not the only one who has been called noncompliant and probably a few other things. Someday you may be proud of that.

I agree, you need a new Doctor!! 130 lbs? and wants you to lose more weight? No.....I have had many doctors that I just wanted to slap. I changed until I found someone that I liked and made sense. YOU are not alone....we are here to help and support each other. Please try to find another doctor. I wish you the best and keep us posted. xo




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