How do you live with Type 1 diabetes?

This site offers some of my experience living with type 1 diabetes.

My history as I remember.

I was diagnosed with type 1 diabetes in 1963 at the age of 10.  My diabetic honeymoon phase lasted about a year.  In October 1964, my parents took me to Children’s Hospital in Buffalo, NY.  Here I learned how to “manage” type 1 diabetes by testing for glucose in my urine and taking injections of insulin.  Injecting insulin was done using a glass syringe with a hypodermic needle. The opening of the needle was about 2 times larger than the outside diameter of the needles used today for injecting insulin. Needless to say, the injections were often very painful.

Your blood glucose (BG) levels could only be measured at a lab using very expensive equipment. The only cost effective method for estimating blood glucose (BG) levels was to test for glucose amounts in a urine sample. With this process you could not determine your current BG level. You had to wait for the next day to change the amount of insulin injected and repeat the urine test. Also having no glucose in the urine sample did not indicate if your current BG was 70 mg/dl, 60, 50 or 40. A BG of 70 mg/dl is good but lower is not good.

Most endocrinologists at the time advised you to eliminate all processed sugar from your diet and count calories for everything you ate. They said you must eat a very bland diet to minimize the occurrence of BG spikes.

What endocrinologists say about managing type 1 diabetes.

Even in the 1960’s, most endocrinologists would tell you that tight control of your BG levels was the best way to avoid complications from diabetes.  And then came the famous DCCT study in 1993 that endocrinologists touted as absolute proof they were correct about tight control of BG levels.  However, most failed to advise you about the risks caused by the increase in hypoglycemic episodes with tight control.  For example, if you become hypoglycemic while driving a car, crash head-on into a tree and die then the cause of death isn’t complications from diabetes.  Obviously a win for tight control, right?  When I asked my endocrinologist about this his reply was “Don’t go hypoglycemic while driving a car”.  My reply to him “Easy for you to say but definitely NOT easy for me to do”.

If you think I’m NOT a big fan of endocrinologists that push tight control, you would be correct.  Been there, done that many times and it just doesn’t work for me.  But, I’m NOT saying that you can get away without doing anything to manage type 1 diabetes.  With type 1, either you find a way to live with it or else you will die from it.  You can use tight control to manage type 1 or in my case, you can use what I call effective control.

My way of managing type 1 diabetes.

What is effective control of type 1 diabetes?  First you must understand what is effective for me may not be effective for you.  You’ll find many type 1 diabetics that say tight control is the only effective way for them to manage type 1.  Their main concern is to reduce the risk of developing complications (i.e. retinopathy, neuropathy, nephropathy, amputations and cardiovascular disease) from type 1.  They reduce the risk by getting their A1C levels down to that of a non-diabetic (at or below 5.6).  If they can do this and not have any hypoglycemic problems ( i.e. losing consciousness) then this is effective control.

When tight control causes hypoglycemic problems then you need to find a better way to get effective control of type 1.  Most days my BGs range from 80 mg/dl to 350 mg/dl.  But sometimes I get a low in the 40s.  I can still function at 40 but going below that number will usually cause me to lose consciousness.  My A1C (3 month average BG level) is usually around 7.5 which most endocrinologists believe is too high.

In most cases, endocrinologists that see BGs levels at 350 mg/dl and A1Cs of 7.5 would always tell me that I needed to take more insulin to get the numbers lower.  While taking more insulin lowers my high BG numbers it also lowers my low BG numbers.  This increases the risk that I will not recognize when I’m becoming hypoglycemic and take steps needed to raise my BG level.

My solution to this problem is to focus less on getting the lowest BGs levels and A1C numbers and more on what I eat and getting regular exercise.  I have found certain foods cause my BGs to shoot up so I always avoid those foods.  I also do about 20 minutes of lifting weights and 30 minutes of cardio on an elliptical machine 2 to 3 times per week.  When I was younger, I would just run 3 to 5 miles on both Saturdays and Sundays.

For me, getting lots of exercise has been the most important part of getting effective control of type 1.  At this point in time, my only complication from diabetes is early stage retinopathy.  Both my retinas have some micro aneurysms but none are leaking or need any laser treatments.