Relatively New T1 Looking for Feedback and Expectations

I am a somewhat newly (2 years, 2 months) diagnosed diabetic that has not had a whole lot of first hand experience with other T1 diabetics and was hoping that some of you out there could give me some feedback on the disease. I was diagnosed by my brother (a T1 himself), with a BG of 526 after displaying some of the common symptoms, unquenchable thirst, loss of weight (40 lbs.) and general extreme grumpiness. When I was diagnosed, I was fortunate to be introduced to a counselor who was a godsend. She helped me take control of my situation, and I have had great success with my BG's. I was diagnosed with an a1c of 12.5, got it down immediately to 7.6 after three months, and my last three quarterly a1c's have been 5.9, 5.7 and just the other day, 5.4. I think I am fotrunate in that my diabetes seems to be a lot more "stable" than others I read about here on TuDiabetes. Typical meals consist of 40-90 carbs, and I allow myself treats at times to fend off the cravings that I still have for occasional donuts (just one) and starbursts and skittles as I tend to run low in the afternoons and use them to bring my BG's up from the 70's to the 90's. My BG comes down within 3 hours into the 85-100 range on a very consistent basis, and corrections are minimal - maybe once or twice a month (like after pizza or italian food). The question I have has to do with the long term effects of the disease on my health. I was wondering if I could get your feedback on what I might expect in the long term in regards to the progression of the disease - specifically if it tends to get more difficult to manage and what the effects on my health might be. Is the control that I have demonstrated, if I can continue, be expected to mitigate the damages to my eyes, feet and kidneys? What types of side effects should I encounter the longer this disease is around? Should I eat fewer carbs with my meals even though my control is pretty good? I actually have reduced my basal dose (Lantus) from 15 to 13 and am thinking to reducing it even more to fight the afternoon drops into the 70's and sometimes 60's that I am experiencing. Any feedback from you would be greatly appreciated.

My son is also at the two year mark, didn't know what his symptoms meant and waiting too long to get urgent care, thought it was the flu, DKA 774. My grandmother, was type 1, but she was diagnosed in 1924 and lived 40 more years. But I was never told much about her diabetes, probably because back then little was known. His diagnoses was a shock. I'm sure she probably had complications or I may have met her. I am sad the knowledge, support and modern technology was not available to her.
For you, my son and others here are benefiting for what has been learned, we can achieve (With lots more work than managing with one shot a day) tighter control, less deviation, and prevention of bad lows. We are doing what the Medical Community says is the best defense against long term complications. But its also not guaranteed. The disease sucks and my son, once the healthiest kid on the block, now has to think about his health 24/7 and be on top of it all the time just to function.
Sorry if I rant, 2 years today I was in ICU with him. You seem on top of it too, I did hear that the teen years (hormones) can be difficult, so I am hoping it gets easier. Menopause too, I hear has it challenges, but luck there. We make periodical changes to his pump, given patterns of his insulin needs or activity levels because we look out for them. Pump and Cgms are big part of tight control, I highly recommend them. Unfortunately, they're not easy to get. Check up every 3 months, Eye dr., annual tests are important to stay up on, other than that, day to day management, I quess, it's all we can do and hope for the best--like maybe the cure! How long had your brother lived with type 1 before you were diagnosed? Hope you are supportive of each other. Its great to have someone around that knows what your'e talking about. I'd like to thank the TuD community for being there for us. Take care, Emily

Great job getting things in line! Studies have shown that tight control (the studies vary in their definition of "tight control" but I believe you are "on it" w/ A1C in the 5s...) mitigates the risk of damage to those areas. I'm not 100% sure if you are entirely "bulletproof" but there are several members who have reported tightened control has improved things like neuropathy for them.

I have two main reasons for eating less carbs, at least two meals/ day (breakfast and lunch during the week...a lot of times on the weekend, not 100% of the time though...).

1) it's less work! I enjoy curing an "afternoon drop" with a donut as much as the next guy (heh heh heh...) but I find it easier to keep my BG flat rather than up and down when I don't have large carb doses and "chasing the dragon" from the nosediving BG 2-3 hours later.

2) I think that when I "overloaded", even a little bit on insulin, I gained weight. Slowly, very slowly but I was dx'ed in 1984 at 120 lbs (down from 150) @ 16 years old and was up to about 275 by 2006 when I decided to change things. I am back down to 185ish (ok, 183 yesterday but then I had Chinese food last's become a bit of an obsession...) but it has been *a lot* of work. Whether this was entirely due to insulin or because I am addicted to potato chips could certainly be looked into.

Let's just say if your out of your honeymoon your are extremely lucky. Most diabetics are rarely in normal range 80-110 despite their best efforts. I've been all over the place from the 30's to 500's and everywhere in between. These days the real high ones are far and few between. As far as long term complications genetics plays a big role. The lower you keep the sugars the better your chances but sadly some even tight controlled diabetics sucumb to many problems within a decade and other long term out of control like myself somehow avoided them. You can only do what is in your control.

Congratulations on your control job! Everyone is individual.
Something you haven't said is what spikes you have in BG at one hour and two hours after a meal.
It sounds as if you are in target when you awaken in the morning. Yes, after you have had good control awhile, your need for insulin reduces.
If you're spiking after meals and having one-two hours of above 140, then read about and think about reducing carbs or redistributing them. Reduce cravings by eating a protein, not more carbs. It sounds like your cravings aren't bad.
You haven't said anything about exercise. Some people can do it all without exercise but then see their weight go up, which you don't want. So watch your weight, write it down, keep a small book log, day a page.
Yes your basal dose is keeping you too low in the afternoons. Are you taking it all in the morning? You might want to split it, not 50-50 but some proportion where neither afternoon nor middle of the night lows occur.
I do not believe it becomes more difficult to manage over time. However, remember that as you age, you're given other drugs which sometimes have effects of BG, and then you have to deal with that. If you stay well in control, you minimize other things happening. But by control, I mean eliminate any spikes.
Now those are my fast reactions! Do respond!

Do you feel bad when you're in the 70s? If not, you can think about leaving your basal where it is, and just not correcting those "lows". Those are actually normal numbers for a fit non-diabetic. I'm pregnant now, and have been told by both my endo and my ob-gyn not to count anything above the *50s* as low. Because non-diabetic pregnant women run that low between meals. It was sort of an eye-opener for me -- giving me permission to be lower than what, at diagnosis, they told me was "safe".

Congrats on living well with type 1!!

One thing to consider with the Lantus is to split the dose and give it twice a day. I had horrible lows about 6 hours after I injected my Lantus. I corrected this by switching to the pump -- so I never tried the two doses, but I have heard that it worked well for others and allowed you to customize the amount of basal insulin you need at different times of the day (you could give a smaller dose in the morning and a bigger dose in the evening -- they don't need to be the same amount, but your daily total should remain the same).

I also have the most insulin sensitivity in the afternoon.

You *may* still be in the honeymoon phase, which means that your body is still producing some insulin. If this is the case, then it may become harder to avoid highs later. BUT... you will also become better and better about understanding your body and your blood sugar -- so it may not lead to higher A1cs!

I have had diabetes for 8 years and haven't noticed any major changes apart from the transition out of the honeymoon phase (which for me was about 3 months after diagnosis).

Many people advocate low carb and it does work very well for many people. I eat about the same amount of carbs that you do.

Emily; Thank you fro the feedback. My Grandfather was a Type 1 as well, diagnosed on the 40's and had a rough go of it. I am very thankful for all the tools that modern medicine has provided for us to manage this condition. Sorry to hear about your trip to the ICU - I am really glad that I was able to avoid DM while in my teens - I am sure that the hormones, activities, peer pressure etc... make it a lot more difficult to manage. My brother was diagnosed about 15 years ago in his early 30's. It is nice to have someone to talk to, but I actually find TuDiabetes far more useful when it comes to providing valuable info (he really hasn't embraced and managed his condition as effectively as those on here) and he is on the pump, whereas I use MDI. I love him, but he definately could use some help maintaining his BG. He actually ended up in an accident about a year ago due to low BG and actually had his license taken away from him until he could demonstrate better BG control.

Acidrock: Just curious what you identify as "less carbs" in a meal? Is it 20, 30, 40 per meal? Myself, I like a sausage omelette with a whopping 0 carbs. Just can't eat them all the time, at least that is what my arteries are telling me. I am on MDI, and my Lantus is now at 12 Units/night, and my ratios for my Novalog are 15:1 for breakfast, 20:1 for lunch (unless I didn't eat breakfast, then it is 15:1), dinner is 12:1. Total insulin is probably about 33 units between basal aned bolus. My weight pre diagnosis was 245, then D allowed me to drop to 196. I am currently about 205, which is a pretty good weight for me (at 6'2"). Do you think my Insulin would be considered "overloaded". I have read about your homage to potato chips in your previous posts, and I can relate. Long live the potato chip (or as Dan Quayle says, potatoe). Thanks for the feedback.

Leo2: I don't test 1 hour after my meals, as I know it is going to be high. Two hours after meals I am always aroung 120-160, depending on how many carbs, how much fat and how much protein. Weight control has not been too difficult. Exercise though has been the most difficult thing for me. I used to be big into running and weight lifting, but I have to say, it is difficult to maintain tight control and work out. The minute I step into the club and start physical activity I start burning through my BG. It drops like crazy. I have finally settled on a mixture of 2/3 grape juice concentrate and 1/3 water which I sip on through out my workouts. If I drink it slowly as I work out, my BG stays mice and level. If I don't - yikes!. I hired a trainer who himself is a type 1, and learned the hardway early on. Fortunately he had some gummi bears at his desk for just that type of situation. I have thought about splitting my Lantus to help avoid the afternoon spikes. Interstingly, I take my Lantus at 10:30pm each night. My lows start about 3:30 or 4:00pm the following day, even if I did not eat lunch or breakfast and thus did not take any Novolog. I think I will talk to my endo about splitting my Lantus and see what he has to say. I am fortunate that my endo is a Type 1 himself.

Kestrel: I can feel and sense it when I am dropping into the 70's. Dont' get shaky and sweaty yet (that happens in the low 60's). I have been thinking of changing my habits and shooting for an A1c in the 4's, but that would be a lot of work. Also, everyone has told me that keeping my BG in the 70's would be dangerous (possibility of hypo's). I have avoided the ambulance and emergency room so far and hope to keep avoiding them. And, I did not think that a BG of 70 was normal.

Kristin: Yes, I am going to look into splitting my Lantus with my endo. Interestingly, my lows are about 16 hours after my Lantus dose, but if splitting the dose would help, I am all for it. Although, I will miss the 5 or 6 skittles that I get in the afternoons to bring up my BG. Yesterday was interesting because I had to eat about 30 carbs between 4pm and 6pm in order to offset the low and keep my BG's up. And, the lows come along after my Bolus has worn off (ate lunch at 12pm). I am not complaining too loudly about having to eat a little to raise my BG's but when it happens during a presentation or meeting it makes me look real funny. Also, I am very careful not to eat too many carbs at a time. I kind of graze 5 or so carbs (starburst, 3-4 jelly bellies, 2 sweet tarts) to bring my BG's up betweek 90 and 100, then keep testing. I don't want to have to correct for a high later.

So you were wondering about the long term effects. Get rid of the spikes at 1 hour post prandial. Get rid of everything above 140. That's what you're seeing people working on when they work at low carb. It may or may not be reflected in your A1c. Normal people do not have spikes. Get as close to normal people's BG as you can. That's what history tells us about keeping from progression of the disease.
You're doing just right with exercise & the diluted grape juice.
I do not like to see lantus sitting in a body overnight when cellular activity is at its the lowest. The 15 hour lag in low seems too long. Maybe the low is due to a slow reaction to exercise? Or to hypothyroid?
Splitting Lantus is an option. Are you up to watching for two lows?
See what your Endo says.
Say you're sleeping 8 hours, 1/3 of a day. Start with 1/6 of your total lantus dose at 10 pm and 5/6 at 7 am. Then, test every hour around the clock, skipping a different meal each day and testing those hours. You can see if you can get your BG to be level within 15 points in each direction. Lantus should not cover meals, only cellular activity. As it gets winter, one needs more to cover the cells shivering. The lowest dose at night is 1/10 of total with 9/10 in the a.m. So you see there's lots of room for variation and greater need to watch for lows at different times of day. Don't expect progression if you get your spikes gone. It's a chronic disease we can live with if the BG is kept with minimal variation and not above 140.

Leo2: Thank you. That is some great feedback. I will be talking to my Endo and DC in more detail regarding the different ways you describe splitting my lantus and will set a new goal to keep my 1 hour post prandial BG below 140.

Sounds like you have things under control. I don't suggest trying to move your A1c into the 4% area. You would definitely have many more lows. 5.4% is really terrific. Many people on this site would "kill" for that #. LOL Just keep up what you are doing and I think you will avoid complications.

catlover: I think that I may be able to lower my a1c even more by following Leo's advice to lower my carb intake. I wouldn't be managing my diabetes any more aggressively than I am now, and my body seems to react to the insulin in a very, very predictable manner. By reducing my carb intake at my meals, I think that my a1c will follow. I guess we will see in 3 months. Thanks for the feedback.

When I first started, I was totally "seat of the pantsing" it, was heavy and sort of looked at what I was eating and cut out carbs without really planning or targeting a level. That was maybe 2006. As things progressed and I got a pump (2008), I learned about counting carbs and sort of kept at it.

I blow off bready carbs in the morning although I still get 10-20 from either spinach and broccoli, sometimes salsa, in my eggs and maybe a glass of V8, so I don't get scurvy. I have about 1/2 bag of veggies in the AM, along w/ cheese and 3/4 serving of nuts (1.5 in bag, 1/2 for lunch, 1/2 mid-PM) so maybe 10-12G more? 1/2 sandwich for lunch, 17-20 depending on how much peanut butter. Then I pig out at night but I'm usually a couch potato and it is not as dicey to take a larger bolus, maybe 55-65G, including a couple of beers to have for dessert, in the sunroom w/ xmas light and a book. ahhhh.... I sort of keep looking for stuff to cut out. MrsAcidRock has suggested beer. I stopped buying potato chips myself. We'll see?

Teen years (excuse me) SUCK!! You are youbg, emotional. changing AND have to deal with D. I am truly amazed I survived. Hormones were the basic reason it is so difficult. For women, wait until menopause.

Hormones, such as with stress, have a mjor impact.

Keep doing your life. Have fun. Check your BG often and get the tech. It so helps.