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Possibility of no complications

Discussion in 'Type 1 Diabetes' started by SweetSophia, Oct 30, 2018.

  1. SweetSophia

    SweetSophia Type 1 · Member

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    I was diagnosed about a year-year and a half ago with t1d. I was very optimistic about having good control of my diabetes, I thought that when I get the analogues (I was on regular insulin in the beginning) my control is going to be better than those 7.something a1c-s. Instead, some bad things had happened and I wound up with this: 6 months of a1c 7-7.5, next 3 months a1c 8.0, next 3 months 7.2, and then 2 months of ok bg control and then last 2 months were terrible, I'll have a blood test soon and I expect my a1c to be over 8-8.5.

    I wonder is there anyone here who had this kind of diabetes control and lived with t1d for 20+ years and still managed not to go blind or to have a kidney failure or something? I understand that I can't change things that already happened, but I'd like to know what's coming. If I'm going to have retinopathy in 10 years then maybe I'd like to get pregnant in 5 years and if I'm going to be healthy then maybe I'd like to postpone that pregnancy.

    I was diagnosed in DKA, with a1c of 10-11 and I felt awful during that pre-diagnosis period. I also felt awful during that third trimester after diagnosis and during last 2 months and it's really hard for me to believe that my organs haven't been damaged in some way.
     
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  2. Engineer88

    Engineer88 Type 1 · Well-Known Member

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    30 yr old T1 for 28 years. Hba1c not under 8 until this year really only a few years as a child.

    I'm still in one piece remarkably!
     
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  3. SweetSophia

    SweetSophia Type 1 · Member

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    That sounds encouraging!
     
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  4. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    I am nearly 30 years type 1 and I even had my daughter at aged 42 1/2 years, my greatest diabetes moment ever and I am still here and still fighting.
     
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  5. Rokaab

    Rokaab Type 1 · Well-Known Member

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    Well, I think its only in the last 6-8 years that I've got my HbA1C down to less than 8, I can't verify that I was always above that before then (lost records and such), but I've had diabetes for 40+ years now (and I suspect my HbA1Cs before then were probably more than 8) and the only issues I have are a slight bit of retinopathy and maculopathy but the hospital say its stable and were happy to discharge me earlier in the year as nothing needs to be done to it.
    I may be lucky that I've escaped anything major, but my liver and kidneys still look perfectly fine, so it is possible, though as ever you do want to try and avoid being above those numbers cos the complications can happen, and some may get them with better control than I've had.
     
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  6. Alison54321

    Alison54321 Type 1 · Well-Known Member

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    Ummmmmm..............there was research done on people with diabetes who had had it for 50 years and were still healthy, called the golden years cohort, and it turned out their average HbA1c was about 7.6%, you are way overachieving, also, apparently they didn't go to see doctors that often. But they probably had good genes, with long living parents.

    https://www.ncbi.nlm.nih.gov/pubmed/14510860

    Obviously you want as good control as you can get, but there are other factors that create good health.
     
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  7. becca59

    becca59 Type 1 · Well-Known Member

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    I am sure technology just makes us more aware and hypersensitive these days. Not a bad thing, but it makes us more obsessive and worry more. Pre technology, diabetics just got on with things as best they could. I’m sure we moan much more when we don’t have perfect numbers. Who would have known when peeing on a stick that their numbers where not bang on perfect. We are lucky!
     
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  8. Knikki

    Knikki · Guest

    Yep 50+ years here as a T1D and so far survived the 70's,80's, 90's and most of the 21st Century as well only thing I have is back ground retinopathy that has not changed for a fair few years.

    Just checked in the mirror and everything is still attached ;)
     
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  9. Madmaureen

    Madmaureen Type 1 · Well-Known Member

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    48 years type 1
    2 beautiful sons
    2.beautiful grand daughters
    Years ago I was.told.I would not be able.to have children.
    Boy did I prove them wrong,,!
    Still here - struggling some.days but.still fighting the dreaded " D"
     
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  10. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @SweetSophia, Based on my experience of living with T1D for 52 years, not as professional advice or opinion.
    Honeymoon phase: Many of us T1Ds go through a honeymoon phase for the first year or more of being diagnosed. See Home page too for more information) It seems that with insulin provided by injection, the pancreas gland ,which had been unable to produce sufficient control BSLs, could produce some amount of insulin which spared the amount needed to be injected, until the pancreas beta cells is completely exhausted.
    So diabetes control after the honeymoon involves higher insulin doses and less leeway in terms of what food does to our BSLs ( no buffer from some of our own insulin).
    Growth spurts: I was 13 when diagnosed back in 1966. The honeymoon phase lasted about the 12 months or so. But then I was going through growth spurts over the next 6 years or so. My insulin requirements during such a growth spurt might double or triple for a week or so and then the hypos would start and my insulin doses needed to reduced quickly as the growth spurt petered out. A month or two later the full thing would start up again.
    Insulin regimes: Back in the not so good old days there were very few choices for short and long acting insulins and urine testing was the only measure in town unless you were in hospital having blood tests. Insulins like Soluble or Regular (short acting) and Isophane/NPH (long acting) were not very close to mimicking normal body insulin effect ,having delayed peaks in regard to rising BSLS from food, or peaks at inconvenient times like in the early am and were not absorbed reliably day to day.
    Nowadays short acting and long acting insulins are much closer to the ideal, not perfect but much much better. More reliable absorption with most but not all and the basal once to twice daily and short-acting before meals is more flexible than the in the past. And these days there are pens, pumps as better forms of insulin delivery.
    Monitoring: blood testing via meters began for me in 1980. That means that the first 14 years of my diabetes was monitored by urine testing alone.
    I mention the above partly to point out that situations like growth in teenagehood could challenge any diabetic regarding control. Similarly regular and appropriate quantity of exercise might improve control and stress wreck it !!
    There is also a trial called the Diabetes Control and Complications Trial, now just over 30 years old. The take-away message that I could discern were that intensive control of one's BSLs from diagnosis and for the first 7 to 10 years, significantly reduced the chances of developing diabetes complications later,( compared to a group who had less intense control in those first 7 to 10 years) even if in the intensive control group the intensive control relapsed after that first 7 to10 years.
    Of course for many of us this research came too late and in any case the ability to achieve good control was less possible, certainly before 1980.
    As with other 50 years + T1Ds I feel privileged to have survived with not too much amiss: cataracts replaced at 45 years on insulin, carpal tunnel syndromes L and R and trigger fingers released, some thickening of finger tendons, maybe tendency to lower BP when standing - but no other eye, or heart, kidney, nerve problems.
    So .... if you are battling on the seas of adolescent growth, maybe seek all the help your health team can offer to find ways to keep BSLs as controlled as possible, and see what those of us who have gone through it have done. ( including handling cyclic changes each month, sickness, vaccinations , stress)
    Ask you health team if there is a better regime of insulin than your current one,
    as there are some slightly quicker acting insulin recently released and one of the newer longer-acting insulins has proved less reliable than originally thought see thread 'Lantus...AGAIN UGH help please', particularly the posts and references by @tim2000s.
    Find a diet that helps to contain your BSLs - some TIDs on site favour low carb diets, others not but see the Home page under Type 2 diabetes- Diets and also Food and recipes, appreciating that dietitians /nurses/doctors may not be up to date or are constricted by health policy. Ensuring that all the appropriate minerals and vitamins are in the diet is paramount.
    If you cannot bring BSLs under control despite multiple injections of insulin or suffer lots of hypos an insulin pump might be appropriate for some and there are plenty of threads on Pumps and the challenges of being awarded one !!
    My Best Wishes go with you and please make the most of what research, experience and luck brings you.:):):)
     
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  11. Irene Banting

    Irene Banting Type 1 · Member

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    55 years T1. I vividly remember praying, when I was 11 or 12 to "please don't make me blind" I was terrified of blindness and gangrene. For various reasons I had horrendous control for most of my childhood and young adulthood. This was pre blood glucose testing but at a wild guess I reckon my HbA1c would have been in the teens. I have absolutely no retinopathy and my kidneys are fine. I have had cataracts but hey, I'm 66 and half my friends have had cataracts . I also have had problems with painful feet, but have been told this may not even be diabetes-related. Obviously I am not advocating horrendous control, but Just saying that even though you may not always get it right, complications are not inevitable.
    Just another aspect of the DCCT trial mentioned by kitedoc , there has been a 30 year follow up showing that the group who had better control for the 6.5 years of the trial, have had fewer heart attacks and strokes than the control group.
    I would consider pump, continuous monitoring if possible, and/ or maybe either a DAFNE course or a low-carb diet. Low carb has given me the best BG control I have ever achieved.
    If I was a betting person I would bet that your organs are completely undamaged .
     
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  12. SweetSophia

    SweetSophia Type 1 · Member

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    Thanks a lot!!
     
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  13. SweetSophia

    SweetSophia Type 1 · Member

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    Thanks a lot! It's good to hear something like that.
    I would like to get a pump, but getting it requires a lot more than a wish (regulations, laws etc ). I will try to focus on making the "tech" part of diabetes better in the following period.
    I'm not a fan of low carb. I understand motivation for it, but my bg control is not so good with it, I might even say it's worse. I used to eat very small amount of carbs and lots of fat, I had what my doctors said are "signs of malnutrition" in my blood tests. I don't know, maybe it works for some people, but I don't think it provides me enough nutrition or the nutrition I need, I feel healthier in general when I'm not trying to eat as little carbs as I can, although I'm still eating less carbs than, for example, an ordinary person.
     
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  14. bmtest

    bmtest · Well-Known Member

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    You can expect a long and healthy life these days free of complications especially with the high tech diabetic management tools available today. I was diagnosed T1 40 years ago at 6ft I tipped the scales at 8 stone dead, lost a lot of weight till finally went to doctors which was on Christams Eve and spent a couple of week in hospital.

    Like people have already said urine testing was the norm and you injected at start of day and tested when arrived home from work or school, it was strict diet and very little correction done with dose, hence would get home and get the 2% orange test tube result meaning high sugars especially if i had cold.

    I have no complications at all but have always tested each day rain or shine and a guy I know is 80 with no complications who has had it well over 50 years, sometimes you have bad spells in control that normal.
     
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  15. Jollymon

    Jollymon Type 1 · Well-Known Member

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    I’m going past 41 years as a t1 with no issues. I am a huge creature of habit. I try to do the same thing to get the same results- some days it works and other days I just need a bigger correction dose. I just don’t give up.
     
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