Thursday, June 5, 2014

Type 1 Diabetes, Misinformation and the Danger of Both

Diabetes. The word strikes fear into the hearts of some, begs for a punchline from others. I can promise you one thing, once it invades your life, it stops being funny.

I have been mulling over this post for a while now, and it's finally time. What I am hoping to accomplish here is to describe Type 1, how it is different from the other types in some ways and similar in others. I'll be talking about the cause, the management and the complications.

I also intend to clear up some of the misinformation out there about Type 1 diabetes, because let's be honest...those of us who have to deal with it every single day are pretty goddamn tired of hearing whatever well intentioned, but misinformed people are trying to tell us.

The misinformation isn't just frustrating, it's dangerous. T1 is truly a condition that most people would never know very much about until they had to...and when you have to, you have to learn it all in a hurry.

He was four years old in this picture.
Type 1 Diabetes
Type 1 (T1) is an autoimmune condition that arises usually in children, though it can strike slightly later on in life. For one reason or another (and for reasons that vary from patient to patient, reasons that may never be known for sure), the body begins to turn on itself and attacks the pancreas. Over time, the beta cells in the pancreas stop functioning. The beta cells no longer produce insulin or if they do, it isn't enough. Once that happens, the person is dependent on insulin for the rest of their lifetime.

T1 is related to several other autoimmune conditions, including Celiac disease. The two are being found to present comorbidly more and more frequently. It can run in families and there is a genetic component to it. Families with a T1 diagnosis are more likely, on average, than non-T1 families to have another member diagnosed.

Depending on how and when T1 is diagnosed, the person may experience a honeymoon period. If symptoms cause detection before the insulin manufacture in the pancreas stops working completely, that person may only need insulin occasionally for a while, increasing in amounts as the pancreas ceases function. Often, though, particularly in children, T1 is not diagnosed until the child ends up in full blown diabetic ketoacidosis.

In T1, the person living with it has to check their blood sugar several times a day, adjusting insulin dosages in accordance with glucose readings, activity level and food intake.

Many children with T1 will eventually be managed with an insulin pump, which is a device that automatically delivers insulin to the body, eliminating the need for constant shots. There are other alternative methods of insulin delivery as well. Some users also have continuous glucose monitors (CGMs) that check their sugar throughout the day, alerting for highs and lows.

T1 is a condition usually diagnosed in childhood, but one that those diagnosed will live their entire lives with. Consequently, there are more adults out there living with T1 than children, even though we generally think of it as a disease that only affects kids.

What life with T1 is really like
T1 is the kind of condition that doesn't take days off. When you are sick or stressed or tired, it actually gets harder and harder to manage glucose levels. When children with T1 are growing, going through puberty, or dealing with other changes in adolescence, it can be harder to manage as well. It is a 24/7 deal...even at night. Most of the T1 parents I know wake at night to check sugars, even when their children hav a CGM.

People living with T1 have to always be prepared for any diabetes related situation. They must have insulin at all times, testing strips and a meter, and a source of rapid absorption carbs in case of lows. People living with T1 have to test their urine frequently as well to check for ketones.

T1 is draining. Emotionally, physically, financially. When people have tried to infer that it's not that big a deal, I have encouraged them to voluntarily poke themselves with needles to check their sugar ten times a day, then again 6 times or more for insulin. I tell them to set times to get up in the middle of the night to check their sugar. I ask them if they've ever forgotten to refill a prescription or if they could cover testing supplies that can easily run in the hundreds-thousands a month. I ask if they've ever had a health insurance policy lapse or ended up in the hospital with little warning for a few days. I ask them if they have ever had to keep track of every single thing they ate, running a mental tab. No? Okay, write it down. Then go out to eat. Figure out how many carbs are in literally anything in the world. Can't tell? Hmmm...that could be a problem.

It is a big deal. It isn't something like high blood pressure or high cholesterol that can be managed with a pill a day. It isn't even like T2, where constant blood sugar checks are usually unnecessary for years and years so long as a person's A1C stays in a good range. T2 can be managed in many cases by diet, by exercise, by oral meds...none of which will manage T1. T1 is different. It requires insulin. It is constant.

One thing that does seem to happen in many cases is that children with T1 may struggle with the emotional toll of the disease as they enter adolescence. A time which is filled with rebellion normally, kids with T1 often respond the same way that their peers do - a move which can endanger their health and even their lives. The constant nature of this condition is exhausting, certainly, and coming to terms with that is difficult for many teenagers.

Misconceptions about T1
T1 probably carries with it a great number of misconceptions, mostly because the vast majority of people living with diabetes have T2, a disease that is very different.

T1 is not the result of giving a child too much sugar. It has nothing to do with their diet. It is autoimmune in nature.

T1 is not related to being overweight or above a certain age.

T1 cannot be cured (yet). It is a life-long condition. There is no "treatment".

Oral medications do not help in any way. The only means to manage it is insulin. 

Diet and exercise can certainly help with symptoms and coping, but they will not alter the course of this disease. Cinnamon won't do a thing.

Children in particular with T1 need the adults around them to be responsible. You can't just sneak a kid with this condition a cookie and think it won't hurt them. Children with T1 depend on the adults around them to create that environment as much as possible. Part of that means that all people who are charged with the care of the child need to be aware and educated about testing, insulin dosing and what to watch for in terms of highs and lows.

Most T1 people, and parents of children with T1, are encouraged to live as normal a life as possible, and this includes having a relatively normal diet. If a child has a birthday party, the alternatives are to deny them a piece of cake or to let them have it and dose the insulin to cover the carbs. The vast majority of parents will let them eat cake and dose for it because this is the type of condition that steals enough from kids, so we will try to let them be as normal as possible when we can. Having said that, sugary beverages and treats are generally reserved to treat lows or avoided entirely.

Adults who are well versed in the management of their T1 can live very normal lives, albeit ones that pretty much require good health insurance at all times because of the cost of supplies and insulin.

There is a subtype of diabetes called LADA - latent autoimmune diabetes in adults. This type, sometimes referred to as Type 1.5, is a slow progressing form of T1 which is often misdiagnosed as T2. These people generally are able to avoid insulin for a while and manifest symptoms of both T1 and T2. It is possible that as many as 10% of diabetics have this form.

Complications of T1
The most common complication of T1 is probably hypoglycemia, or low blood sugar. This happens when more insulin is administered than carbs consumed, and fortunately it is quickly correctable. On the opposite side, DKA occurs when the body isn't using the insulin well enough (or isn't being given enough of it), so the body begins to break down fat to produce energy, leading to spilling ketones. It occurs far more frequently when a T1 person is sick, or shortly after they have been ill. Stress, fevers and other things can cause it as well. DKA can cause sudden death.

Over long periods of time, poorly controlled sugars can also lead to organ and blood vessel damage. Eyes can become damaged and neuropathy may start to occur.

Symptoms of T1
- Thirst
- Excessive urination
- Weight loss
- Increased appetite
- Lethargy
- Sleepiness
- Blurred vision
- Numbness or tingling in hands or feet
- Recurring urinary tract infections
- In females, recurring yeast infections can be a symptom

If these symptoms present, call your physician and get an appointment quickly to have blood glucose tests run. It is a quick and easy check to see where blood sugar is at.

More serious symptoms present when DKA begins to set in. Those are:
- Rapid, shallow breathing
- Flushing of skin
- Abdominal pain
- Nausea or vomiting
- Dry skin
- Dry mouth
- Fruity smelling breath

If the symptoms of DKA show up, go to an emergency room immediately.


  1. Very educational! Thank you!

  2. Thanks for this post!

    My mother was diagnosed as T2, but after reading this post, and some of the info on LADA, it's something to discuss with her doctor.

    It might not turn out to be applicable to her, but it's another avenue to explore.


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