I was diagnosed back in the days of one injection a day of NPH and no blood sugar tests. And although I went to the newer insulins and incorporated basal/bolus (NPH/Regular then Lantus/Humalog) and BG testing several times a day as those technologies came out, nevertheless I found myself ten years ago or so with wildly fluctuating blood sugars that I simply couldn’t control, going from 30’s to 300’s almost every single day. It scared me, and I realized that I needed to make a big change, but I wasn’t sure what.
For me, what was most instrumental in turning things around was buying and reading “Pumping Insulin” by Walsh. Even though I wasn’t pumping, it was invaluable in detailing how to adjust basal and bolus amounts using mathematics rather than the guesses that my doctors had always instructed me to rely on. In particular it showed to me the value and need to test BG frequently to see the effects of the insulin, exercise, illness, whatever, so that I could use that information to keep improving control. It took me far too long, but I realized that you simply need to know your blood sugar before you can know how to adjust it - DUH!
That is of course not to say that there aren’t additional things I can and should do to make further improvements, and I’m planning to do so. Which brings me to this question, since it might guide me or others to know what should be next. So for everyone else out there, if you had to restrict yourself to naming a single change that was most important to improving your own control, what would it be?
A pump and CGM helped incrementally, but low-carb is really the thing that keeps my BG stable. Otherwise I still spend all day skyrocketing and plummeting. Eating low-carb doesn’t prevent all highs and lows, but it definitely reduces their length and severity.
I recently (as in yesterday, hah) started eating low-carb again after months of not really sticking to it consistently. I know that if I could stick with it consistently long-term, I’d be able to hit an A1c in the 5s with relatively few highs and lows. There’s no other way I’d be able to do that.
It was a mindset I learned from my parents when I was 5.
The mindset is simply that you don’t listen to Endo’s or follow conventional thinking or play by the normal rules, you do it your own way.
When I was first diagnosed, the doctor would tell us “Take X units and then come back in 4 weeks and we (the doctors) will adjust it.” My parents didn’t accept that. They did their own adjusmtents. Wasn’t complicated. If 3 units was too much, take 2 units. If 3 units was too little, take 4 units.
Then they went one step further…
Way back then, there were no half-unit syringes. But sometimes the 1 unit increments were to big. So they would eye-ball 1/2 unit doses. It might not be perfect, but just thinking out of the box, an eye-ball of 3 1/2 units was better than having to choose between 3 or 4.
That mindset stuck with me. I diluted insulin and was doing 0.10 unit doses with pens and syringes long before I got a pump.
Same with treating lows. No need to measure out 4 ounces of orange juice (that was a standard back then), we figured out that you could treat a low in all kinds of ways.
So the single best thing for me was my parents teaching me to throw out the diabetic rulebook and make my own rules.
When I was diagnosed at age 5 it was total opposite. I did one injection of lente each morning, and saw a pediatrician every 6 months. We brought my urine test logs, filled with lots of plusses, and Dr said to increase by one unit, see you in 6 months.
Unfortunately I bought into the idea that doctors were the only decision makers, and I followed their rules (mostly). Wasn’t until I went to T1D support group and met folks with insulin pumps and strong opinions about challenging the doctors, that I got more involved in taking control.
So meeting others was the first important change, and getting pump then CGM was the next significant change which directly led to changes in my food choices and more effective dosage/timing of insulin and food.
For me, realizing I needed to modify my diet to obtain decent control was huge too, but in a lot of ways for me, that was secondary to getting a CGM and seeing much more clearly the impact of various foods. So I would say my CGM’s benefits were both direct and indirect, the latter including a lot of dietary changes and changes to how I treat lows/correct highs and many other helpful modifications.
This is the only way I ever really approached my diabetes, so it’s hard for me to estimate its impact on things, but I can’t imagine trying to manage my diabetes any other way. From the get go I think saw the instructions as a starting point and was willing to go off book if my observations suggested it and develop an intuition about the various decision-making processes. My parents weren’t the ones encouraging it per se, but they are reasonable enough and easily convinced by positive results of what I did. My mom definitely modeled a broader attitude of needing to be at the helm of your own medical care though—she had worked in hospitals enough to know how essential that is. (All of this was part of why I hated diabetes camp as a kid by the way, since suddenly I was surrounded by adults who were insisting my diabetes care occur in accordance with what I’d learned to be overly rigid and often somewhat inaccurate rules.)
I’ve said it elsewhere here. The turnaround for me was not a piece of technology or a regimen or a diet or a way of thinking. It was meeting someone I wanted to spend the rest of my life with. And that meant I needed to be healthy. Which led me, after 25 years, to finally learn how to properly manage my diabetes, not just eat what I wanted and respond to highs and lows, and go to my doctor once a year with test logs filled out the night before. Carb-counting, adjusting doses, altering diet, proactively (vs passively) using a pump, trying different insulins, using a CGM, learning not to overtreat, experimenting with things I learn on forums like this – all these changes have improved my control, but they all accrue because I want to be alive and healthy with my partner for many more years.
What turned me around was meeting an endocrinologist who really knew what he was talking about.
Dr. Roy Kaplan introduced me to novolog, Lantus, carb counting, MDI, and Dexcom. He also quickly identified my adrenal hyperplasia (which was wreaking havoc with my BP and causing me to take a dangerous amount of potassium supplement), put me on an ACE inhibitor and a statin drug. This was all within my first two visits with him!
He literally saved me and put me on a course for a long and healthy life after medically languishing for twenty years.
education, education, education…
my pump (and all the great things i could do with it)
new fast acting insulins
lower carbs
many finger sticks (CGM did not work out for me)
pre-bolusing
micro-managing corrections.
exercise
and still learning, especially from you guys at FUD, b/c my previous endo, as you all know by now, was a complete idiot.
getting a great new endo
tons of support
listening
It’s hard to pick just one thing! Since I approach most issues with a hefty dose of investigative analysis, I spent hours reading anything I could and am so glad I found a Diabetes Online Community (DOC) right away .
So I read a lot, asked questions, listened to the experiences of other Diabetics, experimented (thanks FUD) and…most importantly learned to trust my instincts. This led to the following choices: I changed doctors, from a General Internist to an Endocronologist; got a Dexcom CGM; tried out a number of new insulins; and then started pumping.
Like @daisymae said - Education. - and the best education has come from the diabetes online community (both this site and the other one if you know what I mean).
With that said - the CGM was definitely the best technology to improve my BG control. It helped me understanding how carbs and insulin and exercise actually impact my blood sugars. It also allows me to make corrections before things go out of line. BUT… I only heard about CGMs through the diabetes online community.
Here is a detailed and in depth study (N=1 of course ) showing how a CGM improves BG control - (DISCLAIMER: Images and data are meant to inspire people that improvement is possible and not intended to make people feel bad - everyone has different challenges.)
Also for you US Folks:
Red Line = 68.4 (3.8mmol/l) and yellow line = 144 (8.0 mmol/l).
5 = 90 mg/dl and 10 = 180 mg/dl
October 2016 - A two week period just after I got a CGM. A1C was 6.6% the next month (I always read about 0.5% higher than my meter averages )
December 2017 - The last two weeks (I have been eating poorly, making guesses on carbs in Christmas baking, and not exercising much). A1C 3 months ago was 5.9% - going for another A1C next week.
#1 factor for me was intensive self education after diagnosis. There were several forums that helped at the time (2014-15). First nugget I learned was what books to read, and the education continued from there. All the other factors that helped me grab control of diabetes followed from that education.
Hi all. I am similar to Eric and several others who have said they “learn a lot, get support and do it themselves”, though I know this approach is not for everyone.
I was misdiagnosed as Type 2 due simply to my age. (58). As it was slow onset I was fine for 15 months on oral meds until my blood sugar began to climb and climb. I knew something else was happening and started researching to figure it out. I found two good websites including TuDiabetes and rediagnosed myself as Type 1. (LADA). I was living in Guatemala at the time and did see an endo who merely confirmed my own diagnosis. That’s the only endo I’ve ever seen. I then read Pumping Insulin and started a Type 1 Women’s Group in Berkeley (which is going strong 7 years later!). I now had a wide circle to compare notes with. My approach to doctors now is I want my PCP to write my prescriptions and not bother me. I’m fine with the ones who admit they don’t know much about Type 1, quit the ones who think they do. It works for me.
(both this site and the other one if you know what I mean).
) showing how a CGM improves BG control - (DISCLAIMER: Images and data are meant to inspire people that improvement is possible and not intended to make people feel bad - everyone has different challenges.)
)
