Calling all long-time Type1s

[MarkMunday]

I have found that controlling my blood sugar levels ahs become progressively more difficult during the 28 years since I was diagnosed with Type 1 diabetes. And I would like to know if this is the normal experience. Hence the poll.

I am particularly interested in the how T1s have found this. If your control has become increasingly problematic, what have you done to deal with the situation and how has it worked for you?

Cheers,

Mark

[JediSkipdogg]

For me it varies. It has become easier in a sense that I now have a pump and don't have to worry about extreme lows anymore. It's been about 6 years since I've had a severe one. However, I do find that with every change of my schedule it does throw a kink into the game. Like most recently I started dating an excellent girl, before her I was getting in pretty good control, now with her I have found I need to reanalize the game.

But overall if I just did the same thing every day, I think I'd be fine. But what man can do that?

[notme]

For me....it has become 100X's easier. When I was first diagnosed with type 1 in 1986, I was told to eat a low fat, high carb diet. I was put on NPH and Regular insulin. The peaks and valleys of these two insulins along with the totally wrong diet made diabetes impossible for me.

Later, carb counting was introduced. It was frustrating to know I had been doing it wrong all this time, but over time, I gained some control.

Then Lantus came on the market. That made life a little more easier for me. Then the pump.

Now I have a new pump that is so much better than my much loved 508.

For me..... It only gets better.

[camjen1]

For me it has become harder. I find I'm changing my basals quite often and we all know that if basals aren't 100% then everything else is thrown off. Believe it or not but I have set basals for different problems. Such as if I gain weight I switch to the weight gain basals. Same as if I lost a few pounds I have to go to the weight loss basals. The only times I really had consistent basals were at the end of a pregnancy and then once you deliver it feels as if you have to start from scratch and reastablish basals once again.

[am1977]

My answer is that things have basically remained the same over the last couple years, I don't think my Diabetes has worsened or progressed. What I think has gotten harder is staying motivated and doing all I can to manage it. At first, I was so determined to do everything right (well, I tried :rolleyes: ). As time has gone on, I think I have become more distracted with other things, so I have loosened my grip on control somewhat. I don't think I'm totally out of control, but I think things could stand improvement ;)

[Cinnabon]

It has become a lot easier for me. Too much time taking shots... lol.
Like Jedi, The severe lows are not there anymore.

[Simons]

I have found that as the years go by it is more and more difficult to maintain my control.
With having type 1 since 1943 I have been through most insulins and differewnt types of monitors. for this we shoud all be glad for the insulins we now have and the speedy meters. I remember boiling urine with two pills in it and that only showed the amount of sugar you were losing in your urine.
I use Novolog and Lantus. The Novolog on a sliding scale depending on my bs.
Simons

[BriOnH]

Simons,
I sent you a personal message, glad to see you are still here. Hope you get a chance to read the PM I sent you.

I am coming up on 32 years wi diabetes. It seems it is much more difficult to control. I have good days, and bad days, but the fluxuation in bg is greater then what it used to be. When I was younger it would maybe fluctuate over a 80 mg/dl span, these days it often spans 150 mg/dl. Lantus has helped a lot though. Rather contridicting, but true.
-Brian

[drewgolden]

So there are several reasons WHY it is harder.

This is an opinion, and I have only been sticking myself with needles for about the past 20 years, so your experience may vary.

Firstly, we can test more quickly and cheaply. So we move from a test or two a day to five or six. Oh! Now I can see the dips and raises! We become more aware!!!!

But at the same time, as we get older, I think we become less sensitive to the subtle changes in BG. The conflict I find is as my body communicates less about it, I gain greater visibility.

I am *convinced* the biggest problem is with the longer acting insulins.

I intend to force my way onto the pump and use only fast acting.

I am absolutly convinced that I can manage better on the pump and have better granularity than I do on Humalog + R + L.

Of course, in six months I could be proiven wrong. We shall see.

My last test was 6.1. I have always averaged between 6 and 6.5.

If I can maintain 6 as I decline in the years, then I will feel the pump as a success. One thing I am certain is that the complex juggling act of mixing three insulins is not a sustainable feat. I am nearing 40, and I have had this disease for nearing 20 years.

I can't imagine it getting better/easier unless I take action!

drew

[SueM]

I have to work at my diabetes control now due to Addison's disease so yes it is harder to control as the years have gone by. Jugling steroids and insulin is hard going lol but A1c's are where I want them to be and I have no complications from my diabetes.
I refuse point blank to use the synthetic insulins and have managed ok on bovine insulin.

[archimeech]

It's harder:

-More medications than I ever took
-I get sick much easier
-have worse fluctuations and a harder time bouncing back from a low or coming off high
-still just can't get the basal and bolus rates right, it's as if they change daily for me.
-I've resorted to checking my sugar about 12-14 times a day to make sure I'm on track
-losing my ability to sense highs and lows

[jen_slc]

hmm, I don't know. I want to say it's easier for me now because of the new insulins and testing meters available to me, compared to even just 10 years ago. I'll even go as far to say that it's gotten easier for me since coming off the pump and returning to MDI 3 years ago. I'm taking less meds now than I was. I also get sick much much less than I did, even before I was diagnosed, in fact I almost never get sick now (though that's probably attributable to my taking better general care of myself since diagnosis). Although I've always been on a rollercoaster, I think I fluctuate less now than I did before. I'm still on low doses of insulin, it's actually decreased and I'm usually very sensitive to it. There are a few funky little diabetic issues that have irked me over the years but they haven't made my control that much more difficult, it just required changes. The only thing I can say that's gotten more difficult to control/deal with is hypo unawareness, and I can definitely see that getting much worse as time goes on. Otherwise, maybe I just haven't reached the "long years" yet to really experience the difficulties...

[BriOnH]

Jugling steroids and insulin is hard going lol but A1c's are where I want them to be and I have no complications from my diabetes.
I refuse point blank to use the synthetic insulins and have managed ok on bovine insulin.

Sue, I feel your pain there!! I used to be on prednisone, and man it was hard juggling dosage while on it! I would take up to 60% more insulin at times while on it.

Sorry to get off topic, but may I ask why you don't use the synthetic insulins? Funny you should say that. I don't know if there is any direct correlation or not, but when I switched from pork to Huminlin is around the same time I developed my panic attacks. hmm.

[MarkMunday]

The responses are interesting. Obviously, better insulins and pumps have helped a lot. But there is a lot of support for the idea that the insulin injection/infusion control mechanism for T1 becomes less efficient ofer time.

I have believed for some time that this effect is because the liver becomes increasingly erratic in the release of ever larger amounts of glucose into the blood stream. This happens gradually over many years. It explains the problems many of you have commented on : why finding the right basal level gets confusing. And why correcting highs/lows becomes increasingly difficult.

None of the doctors, endocrinoligists and CDEs I have spoken to seem to understand this. Which I find very frustrating. They all seem to think that insulin is all we need to control our blood sugars. It is a bit like trying to tune a formula 1 racing car when the only tool you have is a pipe-wrench! We are not getting the kind advice we need because because this aspect of T1 is not well understood.

Why this effect should get worse over time, I can't imagine. Maybe the supply of glucagon doesn't switch off in the presence of insulin (after a bolus) the way it used to. Maybe it is a type of insulin resistance. Who knows? Someone needs to do a study on this.

Anyway, on a more positive note, there are two things you can try : Symlin apparently inhibits the production of glucogen, which reduces the release of glycogen. And I have heard good reports about it from long-time T1s, Duck being one of them. Metformin, which you take orally, has a similar effect. And I can't understand why it isn't used more with T1s. I started using it a few weeks ago and have had very good results. If you are having problems, discuss these options with your doctor.

Good luck with your quest for better control!

Cheers,

Mark

[Batty]

depends on the year, but its gotten somewhat easier. when i was little i didnt understand as much and i didnt have control over how much insulin i gave myself, but now i can give myself more insulin if i've had more sugar that day, etc.

[Mick]

Freakin' sh!t and flippin' #@%&!!! I JUST wrote a really intelligent and literate post about my ups and downs--and it just went POOF into cyberspace! ****! OK--long story MUCH shorter--YES, easier now, all in all. 40+ years into this and my life and my control is better, smoother, and I am healthier than anyone might have imagined 40 years ago. In fact, 40 years ago, all they imagined was that I'd be 20 years dead by now!! haha!~I sure showed them didn't I?!

Michael
T1 since 1965

[dws]

Believe me, it is much easier now than 60+ yrs ago, I wake up suprised every morning. :)
don
dx 1940 age 5

[dws]

From one old man to another, have you thought about a insulin pump??
I started on the MM pump in 2003, took about 6 months to get everything squared away basal rates/boluses, infusion sets etc , AND getting use to having the pump on me all the time. It was well worth it, A1Cs hanging around 7.0. Basal rates set so that i can go all day without eating if I want to. I can even 'feel' a hypo coming on now.
Test about 8 to 10 times a day, "remember the old blood test, took a week or 10 days to get the report back, by then we were either flopping around on the floor or in the hospital with DKA. :)
don
type 1 1940 age 5
71 today