Type 1 Complications

[Kaisa96]

Hello everyone! I am newly diagnosed T1D. Have already read so much about diabetes complications that I am now almost afraid to live. Is it possible to live long without problems with your eyes, heart or kidneys? Or is that inevitable?

I also wonder if my need for insulin will increase later (now I use approximately 4u of Actrapid and 14u of Protaphane)? I have read that lots of people start with low doses but eventually have to increase it, is that true?

Thanks for help!

 

[Diakat]

Yes it is possible to live long and well. Tagging @Fairygodmother and @kitedoc as examples.

Insulin doses vary frequently - things like carb consumption, sleep levels, exercise, weather and hormones all affect amount needed.

Don't be afraid to live.

 

[Knikki]

@Kaisa96 Hello and welcome to the forum from and old f*art

Yes it is possible to live to a ripe old age and you too can reach it to be a fine cantankerous grumpy old git like me, @kitedoc and @porl69.

I can't class @Fairygodmother in there she is too nice

I am not faimilar with your insulins but you will find over time that your dose will change, it is just part of how T1D works. It is learning process you will make mistakes, we all do, and learn from them.

Have a look in the following threads Type 1' stars R Us to see how many people of differnet ages and amounts of time being T1D fair plus jump in and ask questions

Partners/Family Members Of A Type 1 Diabetic? there are some interesting things in there and one from someone who lives with a long term Diabetic.

Don't be afraid to live, yes diabetese can be a royal PITA but it should not stop you from doing anything you put your mind too, however I'm not sure if you could be an astronaut but other than that anything is possible

 

[porl69]

Hi @Kaisa96 and a warm welcome to the forum from another old(ish) fart (thanks @Knikki )
T1D as has been said is a right royal PITA (most of the time). Don't let it beat you! You will control it and not it control you. Early stages for you at the moment and its a difficult beast to get your head around. Don't forget to come on here and ask questions. There are always people (very knowledgeable) on here who will help and give advice were necessary.
Even us "long termers" get things wrong and we come on here and ask for advice

 

[kitedoc]

Hi @Kaisa96, Welcome to this crazy, zany, most helpful, funniest site. we are all sane but may not understand our age.
@Knikki dobbed me in too!!! No worries. After 51 years on insulin I am matured enough to know he is casting bouquets, not brick batts. That does not mean I know everything about diabetes. I am still learning from my mistakes !!!
My endocrinologist says he greets all his new young TIDs at the first consult with advice to consider taking out a good normal age retirement plan once they start working, or if they are already working. The stats on longevity these days is that good.
For me, the only complications are: at the 40 year mark bilateral carpal tunnel syndrome - tissue builds up around a nerve where is passes through a tunnel in the wrist (hence carpal tunnel) causing nerve pressure. Simple operations fixed this each side (and got me out of washing up for a one week or so each time)! And trigger fingers, where the tendon going to bend the finger inwards, developed a swelling which would get stuck in the tissue loop through which the tendon passed through ( think of a spring (muscle) attached to a stick (bone) in the forearm with cord (tendon) attached to the other end of the spring. The cord runs down the arm into the hand, through pulleys (loops of tissue) to join to the wrist or fingers. Imagine the cord (tendon) gets a swelling (or knot) in it. That swelling may just be able to slip through the tissue pulley but halts first and with strain slips through suddenly (hence trigger) so the finger bends forward, then there may be trouble straightening the finger again as the swelling tries to slip back through (and it hurts ). So the tissue pulley where the jamming and triggering is happening is cut to avoid unimpeded movement again. Fortunately my job did not require use of firearms !!
Cataracts reached a point where I was having trouble reading by year 44 on insulin. The lens of the eye becomes cloudy and will get worse over further time. Not only did I have diabetes as a cause of cataracts, living all my life in sunny Australia probably did not help either. For each eye an eye specialist removed the cloudy lens during an operation and then slipped a perspex one into the capsule where the original lens was. 8 days off washing up but listening to music was another plus !!
Now I wear glasses for close vision. Easy peasy.
What an improvement in sight. And after the oiperation I agreed with my wife's interior paint choices where I had not before !!
I have had a bit of tendon shortening in one finger.
Kidneys, bone density, retina (back of the eyes), heart all fine. Fingers and toes crossed.
So please live in the present. look after your diabetes and let the future unfold. We all worry about complications during our learning phase after diagnosis and start of treatment. It scared the willies out of me at age 13 when there were no glucose meters, fancy insulins, pumps etc. But keeping busy, getting through life, meeting challenges without too much derring-do all helped.
I have canoed or kayaked on week long white water trips, hiked lots, cycled, played sports, survived Uni and now retired enjoy life very much. Nowadays I am eminently more sensible and walk everywhere with ankle and wrist weights for exercise. (ever the optimist - maybe they will announce a space trip to a heavy gravity planet like Jupiter)!
No guesses for what my current and favourite past time is !!??
Early on, say the first year or so after diagnosis, people like me may experience a 'honeymoon' time where only small amounts of insulin are required to treat the type 1 diabetes. Gradually doses increase. How much depends on all sorts of factors like size and weight; level of physical activity; age - adolescents go through growth spurts where their insulin requirements increase may be 50 % plus and then ease back; during cycles, episodes of stress, illness, vaccination we may find insulin amounts go up.
Imagine a 4 way see saw: can I rest arms and legs on the 4 part of the seesaw and be in balance ?: Exercise; stress; diet ; insulin. How do I know the see-saw is level? exercise --> bsl and weight; stress--> bsls and weight; diet: -->bsl, weight, general health; insulin --> bsl and weight. There are other measures but these are the basic ones.
Lots to learn and please share with us your journey. We are not experts or professionals but know what it is like to be diabetic, have found out about the health system and how to use it, know lots of other sites and places to gain information and try not to take ourselves too seriously. Some of us eat cake, others are on low carb diets, some vegan, some use pumps, we need perpetual contributors to the Joke forum and we are a mutual admiration society of sorts (although admiration has a very loose definition).
Best Wishes fellow warrior.

 

[Moggely]

@kitedoc Just a question, since you have had T1 for so many years have you always been in control of it or did at some point you decided you needed to take better care of it. You don't have to answer i was just curious as you seem to always have things under control. I suppose living with it for a lifetime you would have a lot of knowledge about it. But say, your teenage years for instance did you just get on with the being young and having fun sort of thing. Stuff like that...From a very curious person.

 

[kitedoc]

Hi @Moggley, I cannot claim to be perfect. I do have ups and downs. At age thirteen is was not possible to be able to take as much care, because of no glucose meters, anything beyond short- and long-acting insulins each with variable absorption rates. Use of urine testing for glucose was the best I had to monitor with at the time. Lots of guesswork. And that included going through adolescence/puberty.
At times I would eat something not on the approved list and burn it off with exercise, not always successfully.
There were times after glucose monitoring became available where I would run on automatic almost. I was busy and apart from times of strenuous exercise, I would just try to stick to eating the same things, same insulin, same general exercise and assume that one blood test a day was it. I learnt the art of rotating that finger-prick blood test to a different time each successive day so that over a week or so I had a range of readings. It was like a minimalist approach but seemed to work. (who am I kidding)?
When I started work as a doctor things got trickier because I was even more busy, could not rely on meals at regular times, had to cope with night duty and assisting at an operation over several hours including snack times. I more or less moved to a basal -bolus regime by default. That way I could delay or skip meals if need be. Stresses were greater and blood glucose monitors were bulkier than before but at least they were on most hospital wards. I also learned where all the food was kept in each ward. And have avoided those brands of biscuits kept on the wards ever since. But they got me out of some tight spots.
There is also the mystical or gremlin nature of diabetes where nothing has changed but the blood sugar says otherwise. It happens now less often on an insulin pump but still can. ? alter correction dose ? dietary intake? exercise. ? It is an art as much as a science in the end. Like people who have cooked for so many years that they intuitively know what is the right amount of ingredients etc for whatever needs to be baked.
I probably spend more time now watching out for hypos rather than hypers. And am more sensible about exercise and my limitations. Thousand times bitten, now a bit shy !!!
Overall I have found that the stability is less predictable with time. That is why I am now on an insulin pump. I could not safely continue on multiple insulin injections, from the 45 year mark on insulin. Others have managed to stay on insulin beyond that mark and I take my hat off to them.
Luck does have something to do with it also. I did try some crazy things like week long whitewater canoe trips through wilderness country, and partly through good preparation and more than a dollop of luck came through unscathed. (did I tell you about the time I went canyoning, pack on back with insulin in tins. The Ovaltine container with my hypo supplies in my front pocket was dented severely after sliding over the rocks in the canyon river. We climbed out when it began to rain , the canyon flooded as we did so)!
Life was not always fun and diabetes did not help. but I survived, can write weird taste poetry/sayings and am far from perfect.
To have meaning in life one cannot be perfect. (my excuse anyway)! There is no rest for the wicked (even less for the righteous)!!

 

[SamJB]

I also wonder if my need for insulin will increase later (now I use approximately 4u of Actrapid and 14u of Protaphane)? I have read that lots of people start with low doses but eventually have to increase it, is that true?

Yep, your insulin needs will yo-yo throughout your life. At first, you'll go through the honeymoon period where your Pancreas insulin-producing cells will kick in again, before being completely wiped out. You'll need less insulin, you'll have a few extra hypos and your HbA1c will improve.

After that, you'll need to learn how to adjust your insulin requirements based on physical activity, illness, stress, alcohol consumption etc. Loads of resources out there.

 

[HICHAM_T2]

Hi @Kaisa96, Welcome to this crazy, zany, most helpful, funniest site. we are all sane but may not understand our age.
@Knikki dobbed me in too!!! No worries. After 51 years on insulin I am matured enough to know he is casting bouquets, not brick batts. That does not mean I know everything about diabetes. I am still learning from my mistakes !!!
My endocrinologist says he greets all his new young TIDs at the first consult with advice to consider taking out a good normal age retirement plan once they start working, or if they are already working. The stats on longevity these days is that good.
For me, the only complications are: at the 40 year mark bilateral carpal tunnel syndrome - tissue builds up around a nerve where is passes through a tunnel in the wrist (hence carpal tunnel) causing nerve pressure. Simple operations fixed this each side (and got me out of washing up for a one week or so each time)! And trigger fingers, where the tendon going to bend the finger inwards, developed a swelling which would get stuck in the tissue loop through which the tendon passed through ( think of a spring (muscle) attached to a stick (bone) in the forearm with cord (tendon) attached to the other end of the spring. The cord runs down the arm into the hand, through pulleys (loops of tissue) to join to the wrist or fingers. Imagine the cord (tendon) gets a swelling (or knot) in it. That swelling may just be able to slip through the tissue pulley but halts first and with strain slips through suddenly (hence trigger) so the finger bends forward, then there may be trouble straightening the finger again as the swelling tries to slip back through (and it hurts ). So the tissue pulley where the jamming and triggering is happening is cut to avoid unimpeded movement again. Fortunately my job did not require use of firearms !!
Cataracts reached a point where I was having trouble reading by year 44 on insulin. The lens of the eye becomes cloudy and will get worse over further time. Not only did I have diabetes as a cause of cataracts, living all my life in sunny Australia probably did not help either. For each eye an eye specialist removed the cloudy lens during an operation and then slipped a perspex one into the capsule where the original lens was. 8 days off washing up but listening to music was another plus !!
Now I wear glasses for close vision. Easy peasy.
What an improvement in sight. And after the oiperation I agreed with my wife's interior paint choices where I had not before !!
I have had a bit of tendon shortening in one finger.
Kidneys, bone density, retina (back of the eyes), heart all fine. Fingers and toes crossed.
So please live in the present. look after your diabetes and let the future unfold. We all worry about complications during our learning phase after diagnosis and start of treatment. It scared the willies out of me at age 13 when there were no glucose meters, fancy insulins, pumps etc. But keeping busy, getting through life, meeting challenges without too much derring-do all helped.
I have canoed or kayaked on week long white water trips, hiked lots, cycled, played sports, survived Uni and now retired enjoy life very much. Nowadays I am eminently more sensible and walk everywhere with ankle and wrist weights for exercise. (ever the optimist - maybe they will announce a space trip to a heavy gravity planet like Jupiter)!
No guesses for what my current and favourite past time is !!??
Early on, say the first year or so after diagnosis, people like me may experience a 'honeymoon' time where only small amounts of insulin are required to treat the type 1 diabetes. Gradually doses increase. How much depends on all sorts of factors like size and weight; level of physical activity; age - adolescents go through growth spurts where their insulin requirements increase may be 50 % plus and then ease back; during cycles, episodes of stress, illness, vaccination we may find insulin amounts go up.
Imagine a 4 way see saw: can I rest arms and legs on the 4 part of the seesaw and be in balance ?: Exercise; stress; diet ; insulin. How do I know the see-saw is level? exercise --> bsl and weight; stress--> bsls and weight; diet: -->bsl, weight, general health; insulin --> bsl and weight. There are other measures but these are the basic ones.
Lots to learn and please share with us your journey. We are not experts or professionals but know what it is like to be diabetic, have found out about the health system and how to use it, know lots of other sites and places to gain information and try not to take ourselves too seriously. Some of us eat cake, others are on low carb diets, some vegan, some use pumps, we need perpetual contributors to the Joke forum and we are a mutual admiration society of sorts (although admiration has a very loose definition).
Best Wishes fellow warrior.

Allow me to take off my hat in respect for your wonderful efforts

I hope to find a solution to this disease soon

 

[librarising]

@Moggely
Just in case she's not watching the thread, and hasn't been alerted to your reply.

Hi @Moggley, I cannot claim to be perfect. I do have ups and downs. At age thirteen is was not possible to be able to take as much care, because of no glucose meters, anything beyond short- and long-acting insulins each with variable absorption rates. Use of urine testing for glucose was the best I had to monitor with at the time. Lots of guesswork. And that included going through adolescence/puberty.
At times I would eat something not on the approved list and burn it off with exercise, not always successfully.
There were times after glucose monitoring became available where I would run on automatic almost. I was busy and apart from times of strenuous exercise, I would just try to stick to eating the same things, same insulin, same general exercise and assume that one blood test a day was it. I learnt the art of rotating that finger-prick blood test to a different time each successive day so that over a week or so I had a range of readings. It was like a minimalist approach but seemed to work. (who am I kidding)?
When I started work as a doctor things got trickier because I was even more busy, could not rely on meals at regular times, had to cope with night duty and assisting at an operation over several hours including snack times. I more or less moved to a basal -bolus regime by default. That way I could delay or skip meals if need be. Stresses were greater and blood glucose monitors were bulkier than before but at least they were on most hospital wards. I also learned where all the food was kept in each ward. And have avoided those brands of biscuits kept on the wards ever since. But they got me out of some tight spots.
There is also the mystical or gremlin nature of diabetes where nothing has changed but the blood sugar says otherwise. It happens now less often on an insulin pump but still can. ? alter correction dose ? dietary intake? exercise. ? It is an art as much as a science in the end. Like people who have cooked for so many years that they intuitively know what is the right amount of ingredients etc for whatever needs to be baked.
I probably spend more time now watching out for hypos rather than hypers. And am more sensible about exercise and my limitations. Thousand times bitten, now a bit shy !!!
Overall I have found that the stability is less predictable with time. That is why I am now on an insulin pump. I could not safely continue on multiple insulin injections, from the 45 year mark on insulin. Others have managed to stay on insulin beyond that mark and I take my hat off to them.
Luck does have something to do with it also. I did try some crazy things like week long whitewater canoe trips through wilderness country, and partly through good preparation and more than a dollop of luck came through unscathed. (did I tell you about the time I went canyoning, pack on back with insulin in tins. The Ovaltine container with my hypo supplies in my front pocket was dented severely after sliding over the rocks in the canyon river. We climbed out when it began to rain , the canyon flooded as we did so)!
Life was not always fun and diabetes did not help. but I survived, can write weird taste poetry/sayings and am far from perfect.
To have meaning in life one cannot be perfect. (my excuse anyway)! There is no rest for the wicked (even less for the righteous)!!

 

[Moggely]

Hi @Moggley, I cannot claim to be perfect. I do have ups and downs. At age thirteen is was not possible to be able to take as much care, because of no glucose meters, anything beyond short- and long-acting insulins each with variable absorption rates. Use of urine testing for glucose was the best I had to monitor with at the time. Lots of guesswork. And that included going through adolescence/puberty.
At times I would eat something not on the approved list and burn it off with exercise, not always successfully.
There were times after glucose monitoring became available where I would run on automatic almost. I was busy and apart from times of strenuous exercise, I would just try to stick to eating the same things, same insulin, same general exercise and assume that one blood test a day was it. I learnt the art of rotating that finger-prick blood test to a different time each successive day so that over a week or so I had a range of readings. It was like a minimalist approach but seemed to work. (who am I kidding)?
When I started work as a doctor things got trickier because I was even more busy, could not rely on meals at regular times, had to cope with night duty and assisting at an operation over several hours including snack times. I more or less moved to a basal -bolus regime by default. That way I could delay or skip meals if need be. Stresses were greater and blood glucose monitors were bulkier than before but at least they were on most hospital wards. I also learned where all the food was kept in each ward. And have avoided those brands of biscuits kept on the wards ever since. But they got me out of some tight spots.
There is also the mystical or gremlin nature of diabetes where nothing has changed but the blood sugar says otherwise. It happens now less often on an insulin pump but still can. ? alter correction dose ? dietary intake? exercise. ? It is an art as much as a science in the end. Like people who have cooked for so many years that they intuitively know what is the right amount of ingredients etc for whatever needs to be baked.
I probably spend more time now watching out for hypos rather than hypers. And am more sensible about exercise and my limitations. Thousand times bitten, now a bit shy !!!
Overall I have found that the stability is less predictable with time. That is why I am now on an insulin pump. I could not safely continue on multiple insulin injections, from the 45 year mark on insulin. Others have managed to stay on insulin beyond that mark and I take my hat off to them.
Luck does have something to do with it also. I did try some crazy things like week long whitewater canoe trips through wilderness country, and partly through good preparation and more than a dollop of luck came through unscathed. (did I tell you about the time I went canyoning, pack on back with insulin in tins. The Ovaltine container with my hypo supplies in my front pocket was dented severely after sliding over the rocks in the canyon river. We climbed out when it began to rain , the canyon flooded as we did so)!
Life was not always fun and diabetes did not help. but I survived, can write weird taste poetry/sayings and am far from perfect.
To have meaning in life one cannot be perfect. (my excuse anyway)! There is no rest for the wicked (even less for the righteous)!!

@kitedoc . Well you have done really well than, i wasn't aware that you were a doctor. Your still alive and that's all that matters and have done so much even with diabetes. Yes your right "to have meaning in life one cannot be perfect" well said. Like your poetry as well and often have a good laugh over some of it.