Diabetes Self-Management Blog

Sometimes I envy people with Type 1 diabetes. They know very quickly that they have diabetes. They know they have the “real” kind of diabetes. They get to take insulin right away. They know what blood glucose levels to target.

Although I should say here that that’s what I imagine happens. I don’t know, never having been Type 1. Maybe the information out there is as bad for them as it is for us Type 2’s.

Let’s take my points in order, beginning with knowing that you have diabetes. You see, many Type 2’s find out they have diabetes after the heart attack. After the stroke. After an amputation. After they have diabetes-related vision problems.

Recently, I ran across some data that gave the percentage of people with Type 2 who get the complication before the diagnosis, but forgot to remember where it was and couldn’t find it when I looked. It was fairly high, as I recall.

One person I know had surgery for a trigger finger (more common in people with diabetes) and has had the skin condition necrobiosis lipoidica diabeticorum, or NLD (also more common in people with diabetes), for years. The warning signs were there, but nobody checked. Not until fasting blood glucose levels were well above diagnosis levels did the doctor allow that maybe they should “keep an eye on it.” What was he waiting for? The heart attack?

A post from a member of a mailing list I’m on mentioned that his Type 2 diabetes was diagnosed when one of his limbs was amputated.

So we have people who go undiagnosed for years and, by the time they learn they have diabetes, it’s too late to prevent or delay complications because they’re already there.

The reason I mentioned the “real” kind of diabetes up there is because I don’t think that some doctors believe Type 2 is the real thing. And if they do, they certainly don’t pass that information along to their patients.

An ophthalmologist I know once told me he’s seen people with diabetic retinopathy (eye disease) and, after checking them to find very high blood glucose levels, has asked whether they’ve ever been told they have diabetes. “Oh, yeah,” he reports hearing. “But I took some drugs and it went away.”

I even know of one person whose doctor told him “You don’t have diabetes anymore” when the diabetes drugs he was taking helped bring his blood glucose down. So he stopped taking the meds. Guess what? His numbers went back up. He still sees that doctor—but he’s also going to an endocrinologist for his diabetes care.

For a long time, I was berated for being “noncompliant” when what I needed was insulin. Insulin is so wonderfully adjustable; it’s what your body makes (or is supposed to) and, aside from knocking your on your tush once in awhile, doesn’t have a lot of the side effects that oral medicines have.

A woman who was in a mindfulness meditation class I once took complained one day that she was gaining weight and couldn’t figure out why. Turns out her doctor had prescribed a diabetes drug that can cause up to 20 pounds of weight gain (and then berated her because she was gaining weight). Not only did he fail to advise her about the side effect, but he denied it when she confronted him. So I gave her a copy of the insert to show him. (Gotta read those inserts.)

Are the medicines that stimulate insulin production speeding up beta-cell burnout? I don’t know. I’m not sure anybody does and have never run across a study that compares people who take that class of drugs with those who don’t or who take insulin. Given the chance of having my Type 2 diabetes progress even faster than it would otherwise, I’ll take insulin—which could possibly have the benefit of preserving beta-cell function.

Back in the day, before somebody finally sent me for diabetes education, my doctor told me to check my blood glucose, but didn’t tell me what to look for. So I checked…once in awhile. It usually hung in the 300’s, so I figured I was at least consistent. I had no idea that it was too high until a friend who is a lab technician told me what “normal” was. Oops!

Does that happen to Type 1’s as well? I tend to think not—or, at least, not as often.

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Comments
  1. Jan,
    I find this article to be somewhat unfortunate. The reason why is I usually enjoy your blogs. This was not one of your finer blogs. You make some very broad generalizations that I would like to go through point by point (in case your wondering what does this RD know about it, I am also a Type 1 diabetic).
    · You are correct many people do go a while before actually finding out they are type 2. However, if they don’t find out until there was an amputation they either have a really lousy doctor or they were not regularly seeing one. I work in a outpatient medical facility and the doctors here will do fasting labs if you even 10 pounds overweight (overweight is one risk factor but I am not saying it is the only)
    · Your ophthalmologist story may be the exact thing that happened. However, you are the type of person who researches the disease etc. Most people don’t. They do not know a thing about especially at first. They hear something and run with it. I see a lot of newly diagnosed diabetics and I hear some pretty crazy stuff that comes out of their mouths that they say the doctor told them. I know these doctors and I know they would never have said these things.
    · As far as the weight gain goes did you know that insulin also has the side effect of weight gain? The reason why is multi-faceted but I will stick with just two possible reasons. Insulin is required to deposit fat. Plain and simple. Your body will not deposit fat unless insulin is present (tells the body you are in a fed state). If your blood sugars are high you are usually spilling glucose into the urine. Water follows glucose. Weight goes down. Doctor puts you on medication. Blood sugars normalize. Body retains said water that was before passing through urine. Weight increases. There are many other reasons why this happens but the point is the real reason is often times you are in better control.
    · Finally does it happen to type 1’s? You better believe it. I was diagnosed at around 13 years old. They gave me a 300 page book and said basically good luck. That is part of the reason I decided to become a dietitian and work with people who have diabetes. I want to give them something I was not given until I searched for the answer myself. An understanding of how to manage the disease.

    Posted by Washington RD |
  2. Hello! I have had Type 1 diabetes for 49+ years! Diabetes is “real” for everyone no matter what type or age! There are many types and stages of development of diabetes; all are serious and personal incentive is needed for good education and control

    Lack of insurance and not enough doctors to care for us are very real problems. But we have a very good organ called a brain. Let’s use it!

    With Google, the information on health is boundless! There are health clinics in almost every community, or near-by, who provide help to learn about what could harm us!

    Dealing with diabetes of any kind has many factors to handle every day. So does every other person with any kind of life-threatening desease!

    Personaly, I feel that television is a wasteland! Why not have more educational programs to help those who want/need worthwhile subjects to learn? Not everyone has a computer; not everyone has insurance.

    IF IT’S GOING TO BE, IT’S UP TO ME!!

    Posted by Lee Holmes |
  3. I had a similar experiences, but I got Type 1 as an adult, and to boot I have LADA. I can feel anything over 120, so I noticed it before most people would have. I live with a diabetic, so I started testing. I went to my doctor, who diagnosed me with prediabetes (after I insisted). I tested 4-5 times a day. I saw an endo, who told me bloodsugars of 170-190 were “excellent” and I didn’t need to be on meds and that I should only test once or twice a week. I was down to 100g of carbs a day. I cut carbs back more and more until I was down to 30g/day to no effect, but this guy still told me I didn’t need meds. Finally, I realized what was going on, and got a different endo, who put me on insulin. When I moved and had to get a new GP a few months ago, he wouldn’t write insulin prescriptions to tide me over until I got my pump and instead told me I didn’t need to be on insulin. I can’t even imagine what would have happened to me if I hadn’t done my own research and been able to feel highs.

    Posted by Lili |
  4. I have to chime in on Jan’s side of the debate. I already had neuropathy when I was diagnosed. I had several symptoms nobody strung together to equal diabetes. My Dr was pleased with my 40 lb weight loss, even though I wasn’t trying to lose weight.

    My insurance changed, my Dr changed, the next one did the labwork, told me I had diabetes and left me to educate myself. It is Type 2, but he didn’t even tell me THAT. At least he put me on insulin. When I proved willing to change my diet to keep my blood sugars in control, he offered to switch me to oral meds. By that time, I’d been on-line and done my own research. I chose to stick with insulin.

    The third Dr? No blood tests for over a year. Not even an A1c. Plus she cut my testing from 4 to 2 times a day - without telling me. I ran out of strips.

    The Dr I have now? I’ve seen her once. She did a full lab workup, & put me back to 4 tests a day. I sure hope she’s going to work out. I’m tired of doing this on my own!

    Posted by Ephrenia |
  5. It’s funny that you should bring up the last paragraph in your article about not knowing what a normal glucos reading should be.. I spoke to one of my sisters recenly and she mentioned that she has been getting very tired lately, and during the conversation she said that her family Doctor mentioned that her Blood Glucos was over 300, and the she should keep an eye on it, but no advice about what to do about it, or that she might be dibetic.. I told her to Quickly make an appointment with a Endocrinologist, and that in all probability, she was diabetic, and needed to get that under control.. I have been a diabetic for some 17 years now, so hopefully she will do what I suggest.

    Posted by DiabeticBrother |
  6. Lili -Not to dispute you by any means, but to clarify something. You said you are Type 1 but your Dr thought you didn’t need insulin? This really sounds to me more like my situation… An insulin dependant Type 2.

    Type 1 is an auto-immune disease. Your pancreas shuts down and it is usually a very rapid, traumatic event that winds up with the patient in intensive care.

    Type 2 has a slower onset and we often don’t catch the symptoms when they begin. We might begin using insulin, but it doesn’t become Type 1 just because we use insulin. You might need to clarify this with your Dr. and make sure you are Type 1.

    Posted by Ephrenia |
  7. Ok, so here’s the deal. I liked your article because you actually told the negatives of what you’ve gone through. However, before you say you envy type 1 diabetics, take into consideration that type 2’s probably have it easier in the management department. I am an 18 year old Hispanic girl, who was diagnosed at the age of 15. Although I haven’t been diabetic for that long, I can tell you that it’s nowhere near as easy to control as you make it out to seem in your article. Besides having to watch what you eat, when you eat, sometimes even how fast you eat it, you also have to deal with exercise and school and trying to have a normal life. At this point in life, I think people have to realize that if you don’t call the doctor’s office to make an appointment; they’re not going to call you. If you don’t call the insurance to figure out what’s going on, they’re not going to call you. Diabetes is all about being responsible and taking matters into your own hands.No matter what type you have

    Posted by Rosie |
  8. Are you serious? Type 1 diabetics die without insulin. I’d trade all the tea in China to have Type 2.

    Posted by Steve |
  9. I have to take issue with this article on “Type I Envy,” by Jan Chait. Although her intent may have been harmless, it nevertheless struck an angry chord in me. I have Type I diabetes (aka the “real” diabetes according to Chait), and as I read this article I pictured the author as a self-absorbed, whiney individual who looks to blame everyone else but herself. Writing an article in which she “pits” Type I against Type II was probably not the smartest subject matter to blog about on this website. I will not even mention the fact there is NO cure for Type I diabetes, as opposed to some Type IIs who can control their blood sugar with diet & exercise - basically two things noone (diabetes or not) can afford to ignore in this day and age. Just as some pills cause weight gain, insulin also causes weight gain. Has Chait ever heard of “brittle diabetes?” Check out what that entails and let us know if you still have Type I envy.

    Posted by MindyG |
  10. Envy Type 1’s??? You are obviously misinformed. It’s even MORE difficult to get diagnosed type 1 if you’re not a child anymore! I have been ill for more than four years now and have been to three general practitioners, two so-called neurology specialists, and been through a host of really expensive testing. Then, two years ago, my GP, out of frustration, finally decided to measure my blood glucose—Bingo! After all that other crap I’d been trough, this doctor now decided I was a Type II diabetic. So, I embarked on a carb. and sugar-free diet and excercized like mad (Every day, for at least one hour–usually two “shorter” workouts of forty-five minutes each) and–surprise!–my glucose actually went UP and I had built virtually no muscle mass…. All this time, I was ASSUMING that a diagnosis of type II meant that type I had been eliminated by some test or other as a possibility. Ha! more testing last month revealed Type I and im still waiting to be seen by and Endocrinologist!

    Posted by MadGal |
  11. I had a slow onset, t1 that no one caught on to the pattern until afterwards. My pancreas went in to over drive. At 13 I went from 80 pounds to 170 by the time I was 14. Everytime they checked my blood sugar it was on the lower end, maybe 70 or 80, at one point even 60. Only once did I have an elevated reading, which was over a year prior to dx. Since they kept telling my mom I was fine, we both got frustrated and I didn’t go to the doctor for about six months. By the time I was diagnosed at 15, my A1C was at 15.6.My kidneys were shutting down, veins collapsing, heart rate 30ish, BMI 16.9.Had I not gone, I’d been dead before the weekend(dx tuesday) I have a mixed betes family. type 2s are typically less informed, but there are more options.True, they also seem to be less healthy, but that is likely because the t2 in my family are also obese. In either condition, I believe management is an art, not a science. Insulin in t1 doesn’t make bs in control. It is simply the only option

    Posted by Lola |
  12. I have a comment to make on Jan Chait’s letter.I have been a type 1 for 25 years and let me tell you,it is not fun and nothing to be envious about.I get severe hypoglycemic spells where I have been caught several times unconscious.These lows keep me from working and worry everyone in my family.Especially my mom.It is a constant struggle everyday.So don’t be jelous.

    Posted by 25 years as a Type 1 |
  13. You sound as if you don’t know much about type 1 diabetes and all of it’s complications.I get severe hypoglycemic reactions and it causes allot of problems for me and my family.I have been found unconscious several times by family members.My mom caught me once.I was sitting on the couch with my head back and my eyes open.Her knees almost buckled.She thought I was gone.This is only the beginning.Not to mention the constant testing, injections,that cause bruising,the complications from the highs.The worrying about getting medical coverage to afford the high cost of blood test strips,the insulin,the urine strips,the pen needles.I could go on and on.So don’t be jealous.You need to walk in the other person’s shoes before you can make that judgement.

    Posted by 25 Year Type 1 Diabetic |
  14. All I can say is that you DON’T envy a Type 1. A Type 1 will go on to develop the exact same complications, and probably at a much younger age.

    He has lived with the disease the majority of his life. Despite daily injections and fingersticks, he can never gain control. He risks comas and death daily. He will likley die early, with teriible complications.

    He is always wrongly told that he brought this disease on himself, and that he is a bad diabetic for needing insulin.

    Conversely, his Type 2 neighbor only had to put down the burgers and go to the gym to get perfect numbers and be healthy again. They were also healthy for the majority of their life, until they stopped exercising.

    Who should be envious here?

    Posted by Sarah |

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