I was fortunate that, in spite of being 50, my primary doc diagnosed me as T1. Based on little more than my crazy high A1C, he referred me to an endocrinologist. I underwent the usual tests and was started on MDI immediately. With the help of the wonderful folk on this site, I’ve worked hard to test often, manage my carb ratios and lower my A1C. I eat a moderate carb diet (about 120/day) and am on fairly low doses of insulin (about 15 TDD) split pretty evenly between Lantus and Humalog. (My C-pep test showed that I was still making a bit on my own). My last result was a 5.4 with only a few hypos and even fewer very high numbers. I strive to be between 70 and 120 and am usually pretty close. I don’t beat myself up for higher numbers but, do correct for anything over 160 or so.
The problem: My endo makes is very clear that he thinks I’m obsessing too much. At each appointment he wonders aloud if I’m suffering from anxiety or if I’m letting diabetes “control” me. He claims that most of his other patients worry about highs OR lows, not both. At my last appointment he downloaded my meter and declared that my numbers were “too good” and that my A1C is “too normal”. I assured him that I was living a full life. I work a full-time job, have two young kids and a rock-solid marriage, stay active, eat a wide variety of food and enjoy a glass or two of wine when I want to. At my last appointment my endo told me to relax my ratios. When I pointed out that I’m not having many hypos he said, “I’m not sure you need to manage so closely. Wouldn’t it be nice not to have to someday?” I indulged him and faxed in my log with the predictably higher numbers. No response.
My question to the wise people reading this is, should I simply find an endo who doesn’t make me feel like I’m crazy? Or might he have a point? Am I experiencing tight control because I’m lucky enough to still eke out some insulin? Might I not need as much insulin? Is it possible to inject too much without going low by overworking some other mechanism in my body (alpha cells)?
Thanks in advance for any guidance.
I think it's important to find an endo that you're comfortable with, but also need to give it time to see if it works.
When I first started seeing my current endo, I initiated a very open discussion about what our roles were. (But let me say first, I'd been T1 for 40 years at that time.) I said I wanted a coach/partner, not a manager/supervisor. That I would ask for help in setting my goals, and she would have input; I would respect her input, but they would be my goals, and I expected her help in reaching those goals.
If you express your opinions, and discuss what you want from them, you can then either leave or stay based on the results of that conversation. But at least you give them the opportunity to change their ways. I've had 2 really good endos, and at least 10 that I left to find another.
I am seeing a new endo next week and I think I will use your approach. I don't need a supervisor, I do need someone on my team who respects not only my intelligence but also my desire to improve my control. I have already set my goals for myself and I know I have managed to reach 3 of the 5 goals I set for myself, now I will need help setting more. I hope she can help me come up with some. I've only had 1 really good endo and after 37 years I would have hoped that number would be higher but it isn't.
I found this amazing Tu community early on my journey. With Tu's help, I developed a plan considering insulin as the vehicle, myself as the driver and counting on my endo to provide a map. He thinks I'm ignoring his directions and have become a stubborn a navigator. I thought I was too new to dump him (c'mon, he went to med school after all) but, am gaining confidence about plotting my own course. Good luck with the new endo. I hope that s/he turns out to be your second good one.
I tried to have that conversation with my (second) endo last year and he laughed. Said I was too stubborn for such a newbie. After only a year, I was hardly in a position to argue. I'm not interested in arguing anyway ..... just finding someone who will hear me out. As I gain confidence I hope to get better at your approach. Thanks for your input!
I found, after trying many different doctors, that some just only want to be a boss. They went to school for all those years, and feel entitled to be the boss. In other fields of medicine, that is ok, but for diabetes, endos should be cross-trained as a 'life coach' !
You're right that you need the confidence and knowledge yourself to be able to determine whether to stay or leave. Besides TuD, there are so many books and other sources available, that weren't around 20-30 years ago. So I went through many years of relying on the doctor to be the boss, and didn't know any better.
I would certainly not call you stubborn. Just educated and motivated !! Endo's don't see too many patients in that category, especially newly diagnosed, and have a hard time accepting it.
As many numbers are involved with diabetes, it seems very logical to try to improve them. Like fantasy baseball or running-- two other "numbers games" I've played, if your team gets 10HR one week, you want 11 (or 12, or 15!) the next! It seems very natural but the medical industry seems to have all of these concerns about "5.6 is dangerous, you need to run it higher" that don't seem to be founded on any actual research, just "cases" where people have problems. But, if you are looking at cases, you have to look at what happened. Both of my more severe hypos in recent memory involved me 1) being really busy 2) having increased my exercise significantly in a short period, "going for it" and 3) bolusing and not eating or eating pasta, not recognizing the pasta delay factor, together with the other factors. I'm comfortable being more careful but being more careful doesn't involve abandoning my general goal of winning every BG test, which seems very reasonable to me. If a number's off, I try to do a good job fixing it. If it's good, I want to roll it over into the next 1, 2, 3, etc.
as I mentioned, I am 50 years a type one, 63 years old. I am hugely brittle, have always been so. I have no inherent glucagon production, and have, over the decades, experienced harrowing lows. I have been measured, upright and functional, with a blood glucose of 14. I admit this is well outside the bounds of the tolerance of most folks, and I can attribute it only to a lifetime of experience with intermittent lows.
I have always been athletic, at 45 could pass Marine Corps boot camp. At 63, the combined effects of age and diabetes has me on a cane. But still upright and whole.
You mention 90 grams of carbs per day. My intake is perhaps 35. I am 6-1 (shrunk from 6-2 over time), and 210 pounds. I am not starving, I just focus on protein and good fats (butter, olive oil, lard, cocoanut oil-- yes, I know what the dietitians say, and purely don't care. Results speak louder than words.).
Aimee's inherent glucagon production may or may not fade. If it does fade, she may have to deal with more hypoglycemia. But that should develop fairly slowly, if it does.
I do take a beta blocker, and that limits my former ability to recognize hypo in its early stages. That is a prime reason why I limit my carbs, and thus limit my insulin dosages.
Since you are a type 2, I will simply state that you will find your diabetes immensely easier to manage, and could perhaps see it disappear, if you went on an Atkins Diet-style regimen. If you do so, you must be very, very careful at the outset, because Atkins induction is intended to 'shock' the body from a carb metabolism to a protein-fat metabolism, and your insulin or other medication demands will fall drastically, and will result in possibly severe hypoglycemic episodes if you do not equally limit your diabetic medications to match the new diet. Eternal vigilance, and making your blood sugar meter your new best friend will be required. And allowing hypoglycemia, requiring 'rescue' carbs will defeat the purpose of the Atkins induction.
If you are too long a type 2, and thus have damaged the beta cells by overwork, the Atkins approach could be futile. But if you still have good insulin production, you could well heal yourself. Type 2 is usually a self inflicted condition.
I would recommend a new doctor as well. I mean if you were having a LOT Of lows, then yes there may be some validity to your dr's concerns. BUT if your numbers are well managed and if you yourself do not feel that your good control is overwhelming other aspects of your life then don't fix management that isn't broken. Find a new endo. I think a LOT of endo's do worry about lower A1c levels because of Hypo's...but when they actually start encouraging you to have much lax control that worries me. I think too, we need to keep in mind, we sadly are NOT the norm's that Dr's see on a daily basis, and having worked in healthcare I can assure you this is accurate. Sadly there are a LOT of people who just want to take a shot, or take a pill and that be it. They don't want to test, they don't want to watch what they eat, they don't want to exercise and loose weight. Maybe for some, they've just been really blessed not to have experienced major problems or complications but that is just only a matter or time. For others its a denial problem and some honestly just don't care. So yes I think Dr's get very used to unfortunately dealing with a high non-compliant or just not caring population...they probably do think we obsess WAY to much because sadly we are NOT the norm.