I was diagnosed at 30 as T1D. 35 years later...

Type 1 and LADA
#1

I was diagnosed at 30 as T1D. 35 years later I have come to a fairly simplified conclusion. It doesn’t matter what type of diabetes you have, nor does it matter what therapy you are using, it comes down to discipline. The first discipline is find the right doctor. The second is to follow the rules. The third is education. I’ll throw in a forth and say, socialize. Don’t be afraid.

I know I’ve distilled my conclusion down to a few lines of text. In reality this disease is incredibly difficult to manage. The day to day operations of managing diabetes is one aspect of it, the other is the mental side. I don’t go more than 1 hour without thinking about it. I look at my CGM enabled pump all day long and of course into the night. This disease has consumed me physically and mentally.

I have practiced my own advice and have developed the necessary discipline to deal with it. I thank my wife and my family for their support and understanding.

Regards and good fortune to you all.
Jim

PS. I am thankful for my endlessly energetic dog Cooper, who taunts me every evening for his walk and throw tennis balls and…

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#2

52 years T1D you are correct on attitude.

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#3

JD112, Hello. We are very similar in age and onset of type 1. I too think about my BG and insulin dosing very frequently. MUCH MORE since getting a CGM and pump. Thought about it before too, but usually when I stuck my finger, 5-8x a day. Much more now that I don’t have to STICK.
I really don’t find living with DM all that hard tho. In fact I guess I could say that my disease woke me up and my life choices changed for the better. Well, maybe my opinion only???
I am fortunate that I like problem solving. I like to do things “on schedule”, not my fault tho, my mom was of the “better to be 5min early, than LATE!”
I do admit that my BG was rising in the past couple years, for fear of those crashes that had my wife calling 911. She really doesn’t like to do that, but also doesn’t like it when I have been "unrousable and combative due to VERY LOW BG. OH my, I am so thankful that my M.D. finally sent me back to the Endocrinologist and I now do not fear LOWS. I got an alarm and a software system that watches me like a hawk.
Sounds like you are doing the right things for yourself and your family. My only comment really would be, try to make the diabetes a learning experience and not so much a bummer!
Hey we got it, it ain’t goin’ away, and that’s just the way it is. Well IMHO anyway. Your milege may vary.
Thanks for posting!
Mark

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#4

In some ways I was lucky being DX’d at 10 mos old. Its all I know, and all Ive ever known. Didnt have to try and develop new habits. 52 years later, Im doing OK. Most of the routine stuff I dont even think about.

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#5

If anyone was tailor made to deal with T1, it is me. I was Dx’d at 30 years old and am now 66. I had recently retired as a ballet dancer so I grew up with either a view of food as fuel or outright fear of food (we got weighed on Monday’s). I am very self-disciplined - thanks again to the ballet lifestyle since I was about 5 years old, and numbers oriented. I personally think T1 is easier - at least for me - because it is more pure math and science than T2. I can’t imagine trying to handle insulin resistance.

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#6

Like Dan, I was diagnosed so long ago I don’t recall life before T1D (age 5, 55 yrs ago).

What I do remember was a topsy-turvy childhood, filled with extreme hypos that left me unable to speak for 36 hrs, laying in snowbanks walking home from grade school, and trying to quantify BG with urine “clini-test”.

You’re fortunate if you missed this part of the early 60’s and 70’s.

I’m not complaining now though - tech has finally caught up and I’m living carb free and happy. Through 1st hand experience I’ve learned to deal with anything that comes up. Tomorrow is always a new day

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#7

I have had TID for 52 years. Was tough in the early years when we tested urine and not blood and and used metal needles that we boiled and reused. Is it not surprising that we couldn’t get close to managing for good results. In the early years, when I went to the doctor to get BG and later A1C tested it was always high. Partly, as a result of high BG I have had many complications over the years: impotence in 30s, eye laser treatments in 40s, mini-strokes (I’m told) in 50s and kidney transplant this year. Nonetheless, I feel blessed. Married, children, good career. And thankful that technology has improved management of diabetes from new insulin, insulin pumps and CGMs.

Attitude and disciple are so important.

Armed with today’s tools I approach managing my diabetes as a positive challenge. Over the past several months I have steadily reduced my average BG and standard deviation from 160 and 35 to 110 and 23. I am lucky to have found what works for me. Never stop experimenting (safely) on yourself. Accurate basal rates are very important but they are not the end all.

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#8

I was also diagnosed at the age of 30 and it appears we’re the same age, too. You’ve absorbed some good lessons over the years. I agree that discipline is an important asset to deal with diabetes. I also think that curiosity and persistence are valuable, too.

Your story also reminds me that flexibility and adaptability are also key strategies for dealing with diabetes and many other of life’s problems.

The wider truth is that adversity can defeat us, but it can also chisel our character into an awesome force!

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#9

Bravo!

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#10

I was diagnosed at 22 in 1993 and somehow managed to survive winging it for many years. Many, many years!

I’m paying a lot more attention now though. My last HbA1c before switching to low carb was 9%. The one after that (1 month on my old high-carb diet, 2 months on low carb) was 6.7%. My endo was pretty happy.

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#11

Terry and Grahame, A1C 9% to 6.7% is outstanding. Perhaps a post detailing tips on how you manage diabetes is worthwhile. Although it may not be appropriate for everyone, I’m sure lots of people would appreciate things you have leaned over time to better manage BG. Is low carb meals the key? I still eat 90 carbs a day but feel that is low.

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#12

Meant that it would be nice for people to click in with tips they use to better manage diabetes. Occasionally ideas may be of interest to others. Want to clarify that I don’t think 90 carbs is low for a T1D. Low compared with food carbs you can buy. Looked at a medium ice cream sandwich and it had 60 carbs. I eat 6 oz yogurt, 5 carbs and low carb peanut butter fudge cookies 5 carbs, etc.

#13

Congrats!!!
Although a common response (endo was pretty happy), it’s still discouraging that the endos don’t suggest/offer lower carb in the first place. Is it a surprise to them? Did you tell them improved BGs were due to lower carb?.

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#14

I’ve written a lot on this forum about how I treat my diabetes. Here’s a list of things I find effective. I know diabetes varies from person to person but some things are typical across our population.

  • I limit carbohydrate consumption to < 30 grams/day.

  • I only eat two meals per day between 11 a.m. and 7 p.m.

  • I try to limit snacks, especially in the evening.

  • I use a pump and a CGM integrated with an automated insulin dosing, Loop. Loop performs better with my 30grams/day carb limit than it did with > 50g/day.

  • I value the CGM more highly than I do the pump. If I went with multiple daily injections, I would need a CGM to optimize effectiveness.

  • I walk every day, in particular for 30-40 minutes after eating to chop off BG mountain tops.

  • I pay attention to my diabetes data, every day. I’ve found a simple and consistent review provides significant motivation to sustain the long-game.

  • Continuously update your diabetes knowledge. The human software is the single most effective tool at your disposal. Read books and medical studies.

  • Participate with your tribe online and face-to-face. It will hone your knowledge and you will always get more than you contribute. I’ve learned far more from other people with diabetes than I ever have from an endocrinologist.

  • I monitor four diabetes goals: time in range, time hypo, glucose variability as measured by standard deviation, and average blood glucose. I don’t target A1c because I see it as a flawed statistic. I am interested in it, however.

  • At over 300,000 hours of direct diabetes experience, I see myself with greater expertise dosing my insulin than any endocrinologist. I still find doctors useful but I don’t bow to white lab coats.

I could go on, but I’ll give you a break!

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#15

Terry, excellent. I subscribe to many.

How about a topic “Managing Diabetes, Tell Us Uncommon Things That Work for You”

It would be great to hear from members the “unusual” or “uncommon” things that work for them. Some of the items may be unusual but worthy of thinking about by other members. I would put several of your items in this category.

#16

I’d echo what Terry said above. Low carb diet, pay attention, learn everything you can.

Low carb / Keto / LCHF has been the main key to my improved numbers. I went from roller coaster with a high average (11 mmol) to stable and really good BGs (avg. ~6 mmol). I also lost 30 lbs in 4.5 months and my cholesterol and triglycerides numbers improved.

This video made a lot of sense and kind of set me off on the low-carb path: https://www.youtube.com/watch?v=epsSVosmtUc

Dr. Bernstein’s Diabetes Solution is a good resource. I learned a lot.

I didn’t get the Keto Flu, but lots of people apparently struggle with it. I just ate chicken broth and had some sugar free sports drinks. Lots of water. Coffee didn’t hurt either. I find the high fat and protein keeps me sated between meals…so no snacking, no starving. It’s been pretty pain-free for me.

I use a few different Android apps: CarbManager to figure out carbs (and fat and protein and total calories). For a logbook type app, I’m kicking the tires on PredictBGL (Android). I think it’s helping dial things in a bit better (only been using it for a week or so). I was using MySugr before that which is quite good but doesn’t try to guess where things are going or try to calculate your insulin dose for you.

I use a Freestyle Libre and also fingersticks to monitor my blood sugars. The Libre is useful in seeing which way the wind is blowing and also what’s going on when I’m asleep. It’s always low but after the first day or so of a new sensor it’s pretty consistently low by about 1 mmol. It sounds like the Dexcoms are more accurate but my insurance doesn’t seem to want to cover one if I’m not using a pump.

My Endo was happy - the lowered HbA1c numbers were a surprise but he seemed familiar with the benefits of a low carb diet. I don’t know why he doesn’t encourage his patients to try it. I’ll ask him next time.

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#17

I will celebrate living with type 1 diabetes for 60 yrs next month. I was dx at age 8 after almost dying.

I test 8 to 10 times a day and I inject when needed. I followed Dr Bernstein’s way of eating for 11 yrs, but for the past 2 yrs I have been eating a low fat plant based diet. I must say that I enjoy this more, because I like beans, greens and fruit more than I like meat etc. I do miss cheese though!

I am eating almost 12 times the amount of carbs, but only taking 23 units of insulin. My A1c is 5.5 instead of 5, but i am happy with that. I have much more energy now and dropped 10 lbs.

I thought I would always eat very low carb, but I am enjoying my new lifestyle.

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#18

Hi, Marilyn. Welcome to TuDiabetes. I’m aware of people like you who eat hundreds of grams of carbs each day and yet still maintain good blood glucose control. To be honest, I am skeptical about this way of eating to manage diabetes but your report is not the only one I’ve read.

Do you also use a continuous glucose monitor (CGM)? How is your blood glucose variability eating low-carb, high fat versus high-carb, low fat? What is your experience with hypos? Can you offer some blood glucose info (CGM or fingersticks) to flesh out your glucose experience surrounding meals?

What system do you use? Is there a website link?

It looks like you use multiple daily injections to deliver your insulin. Is that right? How much time do you allow between taking your meal insulin dose and starting to eat?

#19

When I clicked through to see this video, I recognized it as one I watched a few years ago. I watched it again. The information holds up pretty well. One of the points that this person makes is that there exists a spectrum of insulin resistance in the population. Insulin resistance is directly related to carbohydrate intolerance. People who are insulin sensitive are not carbohydrate intolerant at all. On the other end of the spectrum are people who are highly insulin resistant and also highly carbohydrate intolerant.

I think this range of metabolic experience might explain how people like @Marilyn6 can eat hundreds of carbs per day and still maintain reasonable glucose control. She is apparently insulin sensitive and therefore carbohydrate tolerant.

Congrats on regaining control of your blood glucose through a carb limited way of eating. I went through much the same experience when I first started using carb limits to control my glucose levels. I lost 25 pounds of body weight without much willpower beyond my focus to limit carbs. It’s a system that works for most people.

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#20

Hi Guys,

I didn’t share about my 60 yrs of being a type 1 to start a debate between low carb and low fat diets, but of course I should have expected it.

I think Dr. Bernstein’s WOE is good and that is why I followed it for 11 yrs. I think the low fat diet which I now follow, and which is different than what is depicted in the posted video, is good too.

You may want to just look at the site called Mastering Diabetes if you would like to know as much about my diet as I know about yours before you speak. The site is run by two young men who both are Type 1 diabetics. One of them is Cyrus Khambatta who has an undergraduate degree in mechanical engineering from Stanford and a PhD from Berkeley in Nutritional Biochemistry. These guys teach folks how to lower insulin resistance. Lowering my resistance is how I could go from eating 30 carbs a day using Dr. Bernstein’s woe while injecting 17 units of insulin to eating 350 carbs daily injecting 23 units. The carbs are from greens, fruit, beans, lentils and some potatoes. I do not eat processed food. I have no working beta cells. All the insulin my body has is from what I inject.

Because of careful carb counting and exercise my bloodsugars do not bounce all over unless I fail to count carbs. I now ride 10 miles a day on my exercise bike and I weigh 108 lbs. I will be 68 next month. I have been insulin dependent since I was 8 yrs old.

Because people who eat this way improve their insulin resistance so much, many type 2’s no longer take any type of diabetic meds. They are thrilled.

I am very careful about any advice I follow about my health. I did not get to 60 yrs of living with this disease with no retinopathy or neuropathy by accident. I do not use a pump or a continues glucose monitoring device because I don’t want to be attached to anything. Heck, I just switched to pens from injections. As far as I know, Dr. Bernstein doesn’t use those items either. Testing many times a day does not bother me. I have never gone to the hospital for a hypoglycemia event in 60 yrs.

Again, I am not trying to lure you to choosing my lifestyle. I was quite happy eating low carb.

Cheers, Marilyn