Do you take the diabetes advice they give you with a grain of salt?
I always have anxiety before doc appointments. I have one coming, and I know my A1C is going to be around 7.7. Urgh. But with all the colds I’ve fought off, fever blister breakouts following (which always send my BG up), adjusting to Tresiba the past month and a half, and still adjusting…
I just feel like I won’t be heard completely.
We know all that goes into our management. Hell, the wind blows and our BG can go haywire. But they don’t always understand that. I feel this way esp. since I only see a PCP and most of these staff only deal with Type 2 patients.
I’m just wondering how you all get around any anxiety or stresses about seeing a doc, esp if your numbers haven’t been great. I’m trying my best to just remember that I know my body and my T1D the best. I won’t neglect any info I’m given, but ultimately I have to experiment and do what’s best for me, since after all, I feel like everyday is an experiment and we just hope we get a good outcome.
We are functioning as our own organ for cryin’ out loud. It’s almost like if we were our own hearts; pumping our chests non stop with no breaks because we would die if we didn’t. If we compressed too hard or too little, it would mess everything up. Why can’t doctors see it that way?
I wish there were an online video showing the instruction the average general practitioner will have had in medical school about diabetes, since patients would be horrified. The instruction is very brief and rudimentary, and half of it will be positively wrong. I have seen endocrinologists proudly displaying on the wall their certificate of two hundred hours of bedside supervision of patients with diabetes, which has really just filled their heads with misinformation, since patients’ experience in a hospital setting will teach them nothing about how the disease is to be managed in everyday life.
For a long time the doctor who advised me on diabetes care was a professor of endocrinology, and when later he married someone who was a type 1 diabetic, he actually apologized to me for how idiotically he had attempted to manage my disease when all he know about diabetes was enough to make him a professor of endocrinology, rather than someone who saw the experience of a type 1 diabetic directly and every single day. If endocrinologists would spend just a weekend with a real type 1 patient in everyday life, they would learn more about the disease in two days than they otherwise would in a lifetime.
My solution now is simply not to have a diabetes doctor, but just to manage it myself. No point in cultivating the stress of correcting an idiot would thinks he’s an expert.
I think this changes a bit depending on my current doctor. Some are much better informed than others. I personally don’t expect much helpful insight at doctor’s offices. However, if I’m struggling with something and I currently have a better-informed endocrinologist, then I’ll raise the issue and see what the response is. Such an endocrinologist may have good suggestions!
I don’t provide any blood glucose records for them to review, and my A1c is good so they don’t ask. I usually give them my Dexcom clarity report for the last two weeks.
Going in with a higher A1c is probably going to make the appointment more challenging😕 I remember you posting about possibly using a cgm. This appointment may be the opportune time to suggest that because you could propose that it’ll help lower your A1c in the future.
I’m on Medicare. Medicare requires that I see a health professional every 3 months in order to pay for my pump and my supplies. I consider it a trade of 30 minutes (plus 3 hrs. travel to and from the appointment) for a free insulin pump, supplies, plus strips and insulin (under Medicare Part B). My CDE downloads the info on my pump and gives advice. I can take it or leave it. I never argue. Sometimes I share information. Fair trade.
While I am fortunate to enjoy good blood glucose control, I share your discomfort dealing with a doctor who really doesn’t understand from the patient’s perspective. I am usually torn between trying to educate the doctor in hope s/he will gain important perspective from listening and really understand what it’s like to live all day, every day with diabetes.
I think for many of us the best way to deal with a practitioner who doesn’t get it is to just smile and nod. Get your prescriptions, get out, and get on with your life!
I really wish there were a way to bridge this perspective gap but we shouldn’t feel the need to take on another aspect of diabetes that can drain our resources.
Ugh I feel you. I don’t even have an endrochronoligist anymore because of this. As far as I’m concerned, most of us who have had this crap disease for long enough, know better than the doctors who think we fit a text book criteria. They think all we have to do is this or that and dont realize that sometimes theres no rhyme or reason. It is so hard to control through subcutaneous injections. Inconsistent as hell. We need something better.
While I like and truly respect my PCP and my Endo I try not to let them get under my skin. My aim is to please me and do the best I can for my diabetes, pleasing my doctors is of secondary concern. I try not to fret over things as long as I try my best, if the doc isn’t happy I can live with it.
I will not deal with an uninformed doctor (Endo or PCP).
I have a great PCP with a T1 husband, an internist from one of the best Russian diabetes research universities, and an awesome Endo who respects my opinion and questions.
None of them ever agree with each other.
But it has taken years to perfect a great care team.
I question everything they tell me, take the advice I find worthwhile based on my 54 years of experience, and simply discard the test.
Good ones will sometimes come up with some real nuggets of gold.
I take very little from doctors regarding my 40 years of T1D. I get extremely anxious and panicky about seeing endocrinologists, after many, many bad experiences over the years.
I now only see one every 4-5 years for a new pump, and I leave it as long as possible.
Even normal GP/primary care visits unnerve me a bit.
I have a rheumatologist and a hand surgeon I don’t mind seeing, because my issues are completely non D related (injuries, arthritis complications).
In theory, I shouldn’t have anything to worry about. I’m complication free, and maintain an HbA1c under 6, but endos always find something to be picky about. My last one told me I must be insulin resistant. Ummm, no, I barely take 24u total a day. I’m fairly insulin sensitive. I stopped listening at that point.
Doctors, especially GPs, aren’t trained or paid or continue to pay malpractice insurance to empathize and really understand a T1s life and struggles. They are there to advise, read your test results, write necessary prescriptions and required letters of necessity. Sometimes an endo or a CDE can better understand us but really can’t imagine what it’s like to have their own BG move from 350 to 40 in less than 6 hours.
I get as much info and stuff done at each and every doctors appointment but I’m the one responsible for my own health and well being. I can only do the best I can.
Doctors don’t see it that way Daisy cause they aren’t walking in your shoes! This disease is very frustrating! Self doubt, guilt and frustration assault us most of the time and according to Adam Brown’s book, Bright Spots and Landmines it’s due to perfectionism. Perfectionism sets up unrealistic expectations for living with diabetes. Perfection with this disease is nearly impossible. In a predictable world where 1+1=2 all the time! With unpreditable diabetes it can equal -2, 250 whatever!
Just tell your doctor you are doing the very best you can with this disease! Try not to get down on yourself. You have many on this site you can identify completely with what you are going through!
You know, my Endo actually HAS T1, only she does not suffer from the issues that I know a LOT of diabetics have with the disease. I once thought, oh, perfect! Someone who understands! But I was sorely mistaken. While she is a good doctor, I feel as though unless a person is really going through everything you are, they don’t have a proper understanding of it.
That said, I try to always keep in mind that the doctor is working for me, and not the other way around. This is my disease, and I’m going to take care of it the best way that I can using the information I have been given. My A1c has been horrible for years and years and years, and I just got it down to a 7.8. My doctor isn’t happy with it, but I am, and I know that I did the best that I could to get it to that number.
Doctors used to be regarded with contempt by the public, and when a doctor visited your home, he was required to come in by the servant’s entrance. Doctors in England were for the most part tradesmen, ‘apothecaries’ as they were called, and had learned ‘doctoring’ just by following a doctor around on the wards of a hospital for a few years. (There were a few respected doctors of medicine educated at Cambridge, Oxford, or Edinburgh, who had studied mainly Galen and Hippocrates, and who were members of a prestige profession, perhaps because they knew nothing, but knew it in Latin and Greek!) The ordinary doctors at hospitals were paid less than the people hired to go around and kill the many insects attracted by the unhygienic conditions.
Even today, medical doctors are basically refrigerator repair people who, while they are repairing a more complex kind of refrigerator, the human body, are also much less competent at it than genuine refrigerator repairmen who can usually fix anything. it shouldn’t be regarded as a profession, but as a trade.
If this were the general understanding, maybe doctors would learn again to respect the patient and remember that they are working for us, not the other way around.
With a grain of salt? No. We discuss everything together. I come in with I want to talk about, I send him an email ahead of time so he can do some research on my topics I wish to talk about. This way, I can get answers right than and there vs trying to remember the issue to discuss the next time.
I have also stopped getting worked up about my visits. It is just a check in, we review labs and current pump settings, current trials I maybe in and any questions I have. When I have one of those visits, I can honestly tell him exactly why my numbers are not the greatest.
I also think, I have been very blessed because outside of my very first endo when I was 9 (the worst doctor ever!) I have always had an endo who really understood me and where I was in my life. And I have been very fortunate to live in an area of the country that is a hotbed for diabetes research.
Please don’t let a doctors visit put all your hard work to shame. Everyday is a learning experience and each visit can be the same.
side note to this one, pull up the article from diatribe by Adam Brown. There are 42 things that may mess with ones blood sugar and those things are things we all have to think about each and every day to try and maintain blood sugar numbers. Good luck and try and have a good visit.
Years and years of high A1C. Just went from 8.4-8.1. I am proud! Congratulations on your drop to 7.8. How did you do that? Adjustments and restrictions in diet?
