SweetSophia
Member
- Messages
- 22
- Type of diabetes
- Type 1
- Treatment type
- Insulin
That sounds encouraging!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!
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?
Thanks a lot!!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.
Thanks a lot! It's good to hear something like that.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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