For the last five or six years, I've had "high fasting blood glucose" levels. When it was first brought to my attention, my husband and I were still living in Grand Blanc (in fact, it may have been before he was "my husband" at all). I went in for a regular annual ("annual-ish") check-up, my doctor ordered some standard labs, and I went in for a fasting blood test - a blood draw first thing, before eating breakfast. The numbers were slightly high, my doctor advised me to keep an eye on my diet and maybe increase my exercise a little from the sedentary lifestyle I was leading, and nothing more was done about it. When I next went in for an "annual-ish" check-up, I got blood work done again, and my glucose was still slightly elevated. It took several more years of this and moving to a new city (and therefore getting a new doctor) before my doctor started to get a little concerned. Clearly this was not a one-time thing; this was a pattern.
About a year/year and a half ago, I went to my doctor because I wasn't feeling well - for something totally unrelated to my glucose levels. But maybe that's what the difference was - that this time I went in with an actual complaint, instead of just going in to meet the doctor and have a healthy check-in. Even though my complaint was unrelated, my doctor again suggested some blood work, and this time when it came back with elevated fasting levels, she referred me to an endocrinologist.
I do not fit the "stereotype" of a diabetic - type 2 or type 1. My dad has type 2 diabetes and for a couple decades now has worked at changing and maintaining his diet, weight, and exercise to keep his glucose in check. One of the biggest changes he did soon after his diagnosis was swapping out daily soft drinks for daily diet soft drinks. We've both always had a sweet tooth, but I feel pretty confident saying he was consuming a lot more sugar/carbs daily than I ever was. He was overweight and had a lifetime of bad eating habits to overcome; I'm a 27-year-old female with a BMI in the low-normal range who is actively trying to eat healthier. Even before I knew I had this fasting blood sugar to watch out for, I was already trying to diversify the types of foods (especially vegetables) that I ate, and I am certainly not the picky eater my dad is when it comes to healthful foods.
I've also known people with type 1 diabetes, and I don't resemble them, either. They were children or teenagers when they were diagnosed. (It wasn't known as "juvenile" diabetes for so many years for no reason!) They are insulin-dependent, because their pancreas no longer functions appropriately - or never did - to maintain normal glucose levels. One of my friends in first grade was a type 1 diabetic. She carried around a kit with her with all her insulin and blood test strips and lancets - and knew how to use it to give herself an insulin shot every day during lunch. We were six years old. In the years since, I've heard of others my age with diabetes, who have dealt with it (and in some cases, struggled with it) for years. Just recently I saw one of my Facebook friends post a link to a GoFundMe account, where she was trying to raise money to pay for her diabetes-related health care. At twenty-six, she was unable to keep a full-time job because of the time her diabetes care required her to take off work. She'd developed a brittle case (or perhaps had always had difficulty controlling her diabetes - I'm not sure), and was particularly struggling due to a lack of quality health insurance.
So needless to say, I was a little confused at how I could have such a pattern of high glucose when I didn't outwardly resemble any of the diabetics I'd ever known, or any of the textbook symptoms (excessive thirst and urination, dizziness, fainting, etc). Was I diabetic or not?
The answer is... Not yet.
Per my general practitioner's recommendation, I started seeing an endocrinologist, a doctor specializing in hormones (insulin is a hormone; the pancreas is the gland that produces insulin). I don't know if this is the case in all areas, but in Rochester Hills, Michigan, the endocrinologist is super busy. To make that initial appointment, there was a several month wait. Since then, I've been back several times for three-month A1C check-ups; because they're so busy, it's more like four months instead of three. (Note to all med students and new doctors trying to figure out what to specialize in - apparently a lot of people need an endocrinologist, and the supply can't keep up with the demand.)
At my initial visit, the endocrinologist looked at my blood work, ordered some more tests, and hooked me up with a special monitor that would attach the skin just above my navel and take consistent glucose readings every five minutes for five days. After the five days, I removed the monitor and returned it so they could download the data; I then got the other blood tests done, including a test to check for pancreatic antibodies. This test came back positive.
The presence of antibodies indicates that I am at risk for developing type 1 diabetes. Not everyone who has type 1 diabetes has these antibodies, but nearly everyone who shows the antibodies will eventually develop type 1 diabetes. The question is just a matter of when. The way my endocrinologist explained it, it may be a few months, it may be a few years, or it may be a few decades away - but probably, eventually, some day, I will be a type 1 diabetic. The antibodies will kick in and start preventing my pancreas from producing the insulin it needs to do its job, and I won't be able to self-regulate my glucose without medication or insulin injections.
I think this is fascinating. If in 2016 they can already predict, possibly decades out, the likelihood of someone developing diabetes, then what will they be able to do in a few more years? Delay it indefinitely? Cure it? It's amazing.
Right now there is little known about how to prevent or delay the onset of type 1. There are some medicines my endocrinologist said we could try, but the most they might do is delay onset by a couple months - and if we don't know how long it's going to be anyway, neither of us were really sure how helpful that would be. Especially since so many of the medications are still in experimental stages, and come with a whole host of side effect possibilities, including pancreatitis and other potentially dangerous diseases. It seemed like very little payoff for a pretty big (unnecessary) risk.
So for the moment, I am not on any medications. The continual monitor and my home finger pricks in the months since that five-day monitor test all indicate that my glucose levels work as they should during the day, when I'm eating. Two hours after a meal or snack, my sugar is right where it should be. It is only the fasting number that is high; when it's overnight and I haven't eaten for several hours, that's when my glucose starts to creep up. When I check in the morning, it is almost always above 100 and it is often in the 120s or 130s; even occasionally the 140s.
My endocrinologist says that the cut off for a diabetes diagnosis used to be a fasting glucose of 140; now they've made the cut-off 125. Not because diabetes has changed, but because there has been such a push for prevention in recent years, and because a lot more is understood about the relationship between diabetes and eye diseases such as diabetic retinopathy and glaucoma. People with diabetes are much more likely to have glaucoma, and glaucoma is better the earlier you catch it - so they lowered the bar for diabetes so that it would trigger a diabetic diagnosis, get the patient to visit their eye doctor sooner, and help diagnose and treat glaucoma earlier.
Either way, whether the cut-off is a fasting glucose level of 140 or 125, I suppose I could fall under the diabetes diagnosis already. But my A1C numbers are good (the ones that show the average level over three months), because my during-the-day numbers are good. More to the point, my endocrinologist has not given me an official diagnosis, or written me any prescriptions for medications or for testing strips - which means any finger-pricks I do I have to pay for out of my own pocket. Insurance doesn't cover test strips without a prescription.
Furthermore, I don't really feel like I deserve to call myself a diabetic - especially a type 1 diabetic - because this is not something that is much of a struggle for me. I am "keeping it at bay" for the moment, and I have no outward symptoms of diabetes. Everything I've done in the past year or so (changing my diet so that I eat fewer carbs, keeping track of how many carbs, calories and grams of fiber I eat, and doing blood sugar checks a few times a week) were things I elected to do, just to make sure that I was aware of my body and would notice if anything did start to happen. They are not things that I have to do to survive, or even things that my insurance will pay for.
These small maintenance procedures I've adopted are not going to prevent type 1 diabetes, but they may delay the onset a bit. (As I said, they don't really know what works. Diabetes prevention is still a very new topic of study.) In any case, I figure it can't hurt to be aware of what I'm eating and try to start developing healthy eating habits now. Then, if/when I do become diabetic, it'll maybe be a little bit easier to control, or to transition into whatever new health plan I will need to adopt at that time.
My endocrinologist gave me an emergency insulin pen to use if I start to notice my glucose levels snowballing out of control. He said I could just call his office and he would figure out the dosage and I could give myself my first insulin injection. I am supposed to be particularly watching my glucose if I get sick. When my immune system is fighting off something else is precisely when those pancreatic antibodies will decide to kick it into overdrive and prevent my pancreas/insulin from doing its job. I've started taking vitamin C to stave off colds or other random illnesses. I will also apparently be getting a flu shot every year for the foreseeable forever.
Just recently I got a bad cold that lasted about a week and a half. It started off with a tickle in my throat, then a stuffy nose, then just general congestion/a cough for awhile. I did notice my glucose get a little higher (in the 130-140 range fasting) for a few days at the onset, but it mostly stayed in the 120s range, which is pretty typical for me. I avoided the dreaded Diabetes Snowball this time. But there's only so much you can do to prevent getting sick, and I'm sure someday it'll catch up to me.
In fact, my great-aunt Dorothy (my father's mother's sister) was a type 1 diabetic - and became type 1 when she was 40 years old. (I had always assumed she'd been diabetic since her childhood, but my grandma recently cleared up this misconception for me.) Dorothy got sick with something (not sure what), went through a surgical procedure, and after the surgery she was diabetic. She lived at least four more decades after that, but her diabetes was always a struggle for her. She had wide swings, with glucose levels that shot up to the 400s and then down to the 60s. This will probably be me - one day I'll get sick, and overnight I'll become a diabetic. Hopefully it won't be quite as hard to manage for me; maybe by the time I finally get to the point where I need a lot of care (medications, insulin, etc.) they'll even have developed a cure for type 1 diabetes. It's just a waiting game, I guess - to see how long it is before my "elevated glucose levels" turns into real diabetes.
I will also, I've been told, have to go on an insulin regimen when I get pregnant. It probably won't be a "permanent" issue - I will be on insulin while I'm pregnant, for the safety of the fetus, but then I won't have to continue it after pregnancy, and the "waiting game" will be back in session for when the type 1 will really kick in. I'm not much looking forward to that complication, so it's definitely something to keep in mind, given that I'm 27 and my husband and I will probably want to have children sometime soon.
After seeing my endocrinologist for a year, he told me at a recent appointment that he had never seen someone last in the "honeymoon" phase of diabetes for as long as I have so far (5-6 years, I guess, if we're counting those early fasting tests as evidence that I had already entered this honeymoon phase). I find that hard to believe if someone like my great-aunt could be forty years old before she got type 1. I suspect it's just that a lot of people don't know they have high fasting glucose. They won't know they've spent their whole lives in the honeymoon phase until they're no longer in the honeymoon phase anymore.
I guess my point is - knowledge is power. If I hadn't had my blood checked and had those other tests done and learned that I had these pancreatic antibodies, I'd have no idea. And now that I know about it and know what to look out for and what to expect, diabetes won't be able to take me completely by surprise. Maybe it'll be years or decades down the road before any of this turns out to matter, and maybe that means extra years of effort trying to take care of my body that I wouldn't have done otherwise - but it's not like the only benefit from eating well and exercising and being mindful of your habits is preventing or delaying a life-changing diagnosis. They're good things to do regardless, and if I end up being "more" prepared and healthy than I need to be, I think I can deal with that.
About a year/year and a half ago, I went to my doctor because I wasn't feeling well - for something totally unrelated to my glucose levels. But maybe that's what the difference was - that this time I went in with an actual complaint, instead of just going in to meet the doctor and have a healthy check-in. Even though my complaint was unrelated, my doctor again suggested some blood work, and this time when it came back with elevated fasting levels, she referred me to an endocrinologist.
I do not fit the "stereotype" of a diabetic - type 2 or type 1. My dad has type 2 diabetes and for a couple decades now has worked at changing and maintaining his diet, weight, and exercise to keep his glucose in check. One of the biggest changes he did soon after his diagnosis was swapping out daily soft drinks for daily diet soft drinks. We've both always had a sweet tooth, but I feel pretty confident saying he was consuming a lot more sugar/carbs daily than I ever was. He was overweight and had a lifetime of bad eating habits to overcome; I'm a 27-year-old female with a BMI in the low-normal range who is actively trying to eat healthier. Even before I knew I had this fasting blood sugar to watch out for, I was already trying to diversify the types of foods (especially vegetables) that I ate, and I am certainly not the picky eater my dad is when it comes to healthful foods.
I've also known people with type 1 diabetes, and I don't resemble them, either. They were children or teenagers when they were diagnosed. (It wasn't known as "juvenile" diabetes for so many years for no reason!) They are insulin-dependent, because their pancreas no longer functions appropriately - or never did - to maintain normal glucose levels. One of my friends in first grade was a type 1 diabetic. She carried around a kit with her with all her insulin and blood test strips and lancets - and knew how to use it to give herself an insulin shot every day during lunch. We were six years old. In the years since, I've heard of others my age with diabetes, who have dealt with it (and in some cases, struggled with it) for years. Just recently I saw one of my Facebook friends post a link to a GoFundMe account, where she was trying to raise money to pay for her diabetes-related health care. At twenty-six, she was unable to keep a full-time job because of the time her diabetes care required her to take off work. She'd developed a brittle case (or perhaps had always had difficulty controlling her diabetes - I'm not sure), and was particularly struggling due to a lack of quality health insurance.
So needless to say, I was a little confused at how I could have such a pattern of high glucose when I didn't outwardly resemble any of the diabetics I'd ever known, or any of the textbook symptoms (excessive thirst and urination, dizziness, fainting, etc). Was I diabetic or not?
The answer is... Not yet.
Per my general practitioner's recommendation, I started seeing an endocrinologist, a doctor specializing in hormones (insulin is a hormone; the pancreas is the gland that produces insulin). I don't know if this is the case in all areas, but in Rochester Hills, Michigan, the endocrinologist is super busy. To make that initial appointment, there was a several month wait. Since then, I've been back several times for three-month A1C check-ups; because they're so busy, it's more like four months instead of three. (Note to all med students and new doctors trying to figure out what to specialize in - apparently a lot of people need an endocrinologist, and the supply can't keep up with the demand.)
At my initial visit, the endocrinologist looked at my blood work, ordered some more tests, and hooked me up with a special monitor that would attach the skin just above my navel and take consistent glucose readings every five minutes for five days. After the five days, I removed the monitor and returned it so they could download the data; I then got the other blood tests done, including a test to check for pancreatic antibodies. This test came back positive.
The presence of antibodies indicates that I am at risk for developing type 1 diabetes. Not everyone who has type 1 diabetes has these antibodies, but nearly everyone who shows the antibodies will eventually develop type 1 diabetes. The question is just a matter of when. The way my endocrinologist explained it, it may be a few months, it may be a few years, or it may be a few decades away - but probably, eventually, some day, I will be a type 1 diabetic. The antibodies will kick in and start preventing my pancreas from producing the insulin it needs to do its job, and I won't be able to self-regulate my glucose without medication or insulin injections.
I think this is fascinating. If in 2016 they can already predict, possibly decades out, the likelihood of someone developing diabetes, then what will they be able to do in a few more years? Delay it indefinitely? Cure it? It's amazing.
Right now there is little known about how to prevent or delay the onset of type 1. There are some medicines my endocrinologist said we could try, but the most they might do is delay onset by a couple months - and if we don't know how long it's going to be anyway, neither of us were really sure how helpful that would be. Especially since so many of the medications are still in experimental stages, and come with a whole host of side effect possibilities, including pancreatitis and other potentially dangerous diseases. It seemed like very little payoff for a pretty big (unnecessary) risk.
So for the moment, I am not on any medications. The continual monitor and my home finger pricks in the months since that five-day monitor test all indicate that my glucose levels work as they should during the day, when I'm eating. Two hours after a meal or snack, my sugar is right where it should be. It is only the fasting number that is high; when it's overnight and I haven't eaten for several hours, that's when my glucose starts to creep up. When I check in the morning, it is almost always above 100 and it is often in the 120s or 130s; even occasionally the 140s.
My endocrinologist says that the cut off for a diabetes diagnosis used to be a fasting glucose of 140; now they've made the cut-off 125. Not because diabetes has changed, but because there has been such a push for prevention in recent years, and because a lot more is understood about the relationship between diabetes and eye diseases such as diabetic retinopathy and glaucoma. People with diabetes are much more likely to have glaucoma, and glaucoma is better the earlier you catch it - so they lowered the bar for diabetes so that it would trigger a diabetic diagnosis, get the patient to visit their eye doctor sooner, and help diagnose and treat glaucoma earlier.
Either way, whether the cut-off is a fasting glucose level of 140 or 125, I suppose I could fall under the diabetes diagnosis already. But my A1C numbers are good (the ones that show the average level over three months), because my during-the-day numbers are good. More to the point, my endocrinologist has not given me an official diagnosis, or written me any prescriptions for medications or for testing strips - which means any finger-pricks I do I have to pay for out of my own pocket. Insurance doesn't cover test strips without a prescription.
Furthermore, I don't really feel like I deserve to call myself a diabetic - especially a type 1 diabetic - because this is not something that is much of a struggle for me. I am "keeping it at bay" for the moment, and I have no outward symptoms of diabetes. Everything I've done in the past year or so (changing my diet so that I eat fewer carbs, keeping track of how many carbs, calories and grams of fiber I eat, and doing blood sugar checks a few times a week) were things I elected to do, just to make sure that I was aware of my body and would notice if anything did start to happen. They are not things that I have to do to survive, or even things that my insurance will pay for.
These small maintenance procedures I've adopted are not going to prevent type 1 diabetes, but they may delay the onset a bit. (As I said, they don't really know what works. Diabetes prevention is still a very new topic of study.) In any case, I figure it can't hurt to be aware of what I'm eating and try to start developing healthy eating habits now. Then, if/when I do become diabetic, it'll maybe be a little bit easier to control, or to transition into whatever new health plan I will need to adopt at that time.
My endocrinologist gave me an emergency insulin pen to use if I start to notice my glucose levels snowballing out of control. He said I could just call his office and he would figure out the dosage and I could give myself my first insulin injection. I am supposed to be particularly watching my glucose if I get sick. When my immune system is fighting off something else is precisely when those pancreatic antibodies will decide to kick it into overdrive and prevent my pancreas/insulin from doing its job. I've started taking vitamin C to stave off colds or other random illnesses. I will also apparently be getting a flu shot every year for the foreseeable forever.
Just recently I got a bad cold that lasted about a week and a half. It started off with a tickle in my throat, then a stuffy nose, then just general congestion/a cough for awhile. I did notice my glucose get a little higher (in the 130-140 range fasting) for a few days at the onset, but it mostly stayed in the 120s range, which is pretty typical for me. I avoided the dreaded Diabetes Snowball this time. But there's only so much you can do to prevent getting sick, and I'm sure someday it'll catch up to me.
In fact, my great-aunt Dorothy (my father's mother's sister) was a type 1 diabetic - and became type 1 when she was 40 years old. (I had always assumed she'd been diabetic since her childhood, but my grandma recently cleared up this misconception for me.) Dorothy got sick with something (not sure what), went through a surgical procedure, and after the surgery she was diabetic. She lived at least four more decades after that, but her diabetes was always a struggle for her. She had wide swings, with glucose levels that shot up to the 400s and then down to the 60s. This will probably be me - one day I'll get sick, and overnight I'll become a diabetic. Hopefully it won't be quite as hard to manage for me; maybe by the time I finally get to the point where I need a lot of care (medications, insulin, etc.) they'll even have developed a cure for type 1 diabetes. It's just a waiting game, I guess - to see how long it is before my "elevated glucose levels" turns into real diabetes.
I will also, I've been told, have to go on an insulin regimen when I get pregnant. It probably won't be a "permanent" issue - I will be on insulin while I'm pregnant, for the safety of the fetus, but then I won't have to continue it after pregnancy, and the "waiting game" will be back in session for when the type 1 will really kick in. I'm not much looking forward to that complication, so it's definitely something to keep in mind, given that I'm 27 and my husband and I will probably want to have children sometime soon.
After seeing my endocrinologist for a year, he told me at a recent appointment that he had never seen someone last in the "honeymoon" phase of diabetes for as long as I have so far (5-6 years, I guess, if we're counting those early fasting tests as evidence that I had already entered this honeymoon phase). I find that hard to believe if someone like my great-aunt could be forty years old before she got type 1. I suspect it's just that a lot of people don't know they have high fasting glucose. They won't know they've spent their whole lives in the honeymoon phase until they're no longer in the honeymoon phase anymore.
I guess my point is - knowledge is power. If I hadn't had my blood checked and had those other tests done and learned that I had these pancreatic antibodies, I'd have no idea. And now that I know about it and know what to look out for and what to expect, diabetes won't be able to take me completely by surprise. Maybe it'll be years or decades down the road before any of this turns out to matter, and maybe that means extra years of effort trying to take care of my body that I wouldn't have done otherwise - but it's not like the only benefit from eating well and exercising and being mindful of your habits is preventing or delaying a life-changing diagnosis. They're good things to do regardless, and if I end up being "more" prepared and healthy than I need to be, I think I can deal with that.
