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)?
I believe you're right and on some level I guess I know I need to switch. But, I also want to make sure that I'm not overtaxing my alpha cells by being "too good". Thanks for the sanity check!
I agree that if you are leading a full rich life and happy with your D management, then all is great! The only concern I would express to you is that you know that things may not stay quite that stable once your honeymoon passes. There are some people on here who stay "between 70 and 120 all the time", but they are few. Most of us Type 1's have more variability and just correct and tweak as needed. Your expectations might not be as reasonable down the road, so as long as you stay flexible, it's all good!
Thanks, Zoe! You're always so helpful and inspiring. I'm afraid he's trying to wean me off inuslin as an experiment. In the past 18 months or so, I've probably preserved my remaining beta cells, right? I do have variability (40-180) but, I usually know why. I hope my luck (honeymoon) continues.
Most doctors only dream of having a compliant patient with regard to keeping their numbers under control. I would suggest that if you are not happy with your current DR, then find one where the communication is more to your taste. Then maybe you could talk out your concerns about overtaxing your body. If there is no real concern with that, then I say HALLELUIA!!! Keep doing the good works for as long as you are able/comfortable doing them. I wish I could have had better control earlier on because, once you have complications, I am not sure they can be reversed.
Take care and good luck holding a very positive attitude!
Maybe your making it to easy for him and he feels treatened. Maybe he's a control freak that can't leave well enough alone. Or maybe he is concerned that you really are obsessing to much and he's really concerned that you will burn out. You seem to be well grounded but some just aren't wound that tight to start with.
With the rock solid life you appear to have I would just ignore him and if he gets on your nerves to much I would dump him.
I echo everyone's comments here, I think endos and actually most people in the medical profession are just trying to cover their butts from a legal perspective. But if your endo is not on board with you taking good care of yourself, then find another one. After 37 years of D, I have just recently gotten a CGM and it has cut way down on my need to test. I went from 12 times a day to about 3. I switched endos this summer because I discovered my endo had basically caused my hypo-unawareness by keeping me on a sliding scale of insulin instead of carb counting. I will see the new endo for the first time next week and I hope she will be an improvement. If not, I can always shop around.
Basically you have to look at medical care from a consumer's perspective and as a consumer you want to get the very best for your hard earned money. You hire or "employ" a doctor to give you the best advice possible, if they aren't or you feel they aren't then as a consumer it's incumbent upon you to find another one. JMHO
My vote is to switch if you want to but otherwise, just keep doing what you are doing and see him every 3 or 6 months for your prescriptions. It might be that he was taught that such a low a1c is caused by too many lows....not your case, or that it is just too hard to maintain those numbers, again not you. I find it sad that the medical community is not always supportive of the optimum care you provide yourself and the fabulous results...unless they know something we don't? I am thinking not! Good job!
I think I have decided that endo's see so many patients who don't take care of themselves that they don't know what to think about those of us who do, and those of us who may be a little bit on the obsessive side (me). When I am interviewing with a new doc, on the first appointment I lay it out about how I am, what I am ok with and what I am not ok with, like being lectured or having a finger shook at me like I am a child. And if they can't respect what I have to say and see me as part of the "team" with valuable thoughts and input, then... see ya later.
You have to be your own advocate!
Aimee, I commend you on the hard work and great results you are doing/getting. I agree with all the comments - find a provider who supports and encourages you and gives you the information you are seeking. After having read about a survey that showed 80% of respondents feel it's their physician's job to keep them healthy, you are a breath of fresh air!! You are taking responsibility for your health and doing an amazing job. Maybe you do get some help from a few functioning beta cells - but the fact that you take such good care of yourself means they could last that much longer (perhaps, and perhaps not, who knows). I think another way to approach potential burnout is to make you aware that it could happen and encourage you to have a plan if it does, but not throw in the towel in anticipation of burnout that hasn't even happened (and may never). Good luck with your decision.
I am 50 years a type 1. For the first 20 years I could not even test my blood sugar in real time. Insulin was animal source, and damaged the injection sites. Tell your endo to take a hike. I don't even have an endo, and would take him to school if I did. I take 15 Lantus at supper, use Humalog at the ratio of 1 unit per 10 gram carb at meals, or 1 unit per 30 points of blood sugar. My nighttime 'base load' demand for insulin is less than my daytime base load, so I take 4 NPH at 7AM and use the above formula for Humalog to adjust my fasting sugar. My A1c is typically about 6.2. I have 20/20 vision, 2 good kidneys, and 10 toes. If you want to keep those attributes, learn your disease, learn your body and its responses, and be ever vigilant.
I am a degreed chemist and a process control engineer, and have taught diabetic maintenance for 40 years, and it is my passion. I was trained by an old endo who was himself long-time type 1, back in the day. Feel free to email me directly if you would care to discuss any aspect of diabetes. minutemn@gmail.com Mike Kemp
I agree with and appreciate the advice from all who suggest that I switch endos. I just need to shake off the last bit of doubt that maybe he's right about a too stringent carb ratio. Am I not having hypos because my alpha cells are overcompensating or are my insulin doses accurate for the numbers I'm trying to achieve? For as long as possible I'd like to have near normal BG not merely "acceptable for a diabetic". I shouldn't need a log full of PP 160s to please him. Thanks everyone!
New doctor…I jokingly refere to myself as a type A, type 1 diabetic. Control is the key and my Endo congrats me constantly for having " non diabetic" numbers and says she wishes she could bottle me.
Has the doc said that you are burning out your Alpha cells? Was that his point? If he wants you to let your sugars run a bit higher but never lower, won't that require even more intense vigilance? I've not heard of the Alpha cell burn out problem, but given the Beta cell demise, it seems like it's only a matter of time till you become the main pilot of your bg levels regardless. Extending the honeymoon would be great of course. I don't get your doc's point though - relax your vigilance and you'll run higher AND lower in my experience. I think he's nuts.
He indirectly admits that he has not seen patients with a quality of glucose control comparable to healthy people. It is very revealing. You have 50 years of good living ahead (50 fantastic summers and so forth). With an A1c below 6.3 it is very likely that you will not develop complications. But if you can achieve better without risking too many lows or obsessive behaviour I do not see any problem with that. Actually a higher degree of control is typical for LADAs (late developing T1s). They typically preserve more beta-cells for longer periods of their life. Of course this is visible in the data of glucose monitors and A1c. It is the signature of LADA and an endo should be familiar with that. So better switch.
