Nope, it's not dumb comments from strangers who don't have diabetes. Not dumb comments from family that doesn't have diabetes. Not dumb comments from people with type 2 diabetes. It's people with type 1 diabetes.
And it's not when people assume that their diabetes management scheme is the best or the one I'm using (how often do I have to hear about pumps?!) And it's not when people assume that I want to give money to their cause (no thank you) or that I support it, whatever it is. Or when they make some unsupported blanket statement such as "type 1 diabetes is on the rise" or "the A1c measures average glucose".
Nope, the people who get to me are ones who think diabetes is easy to manage, and that complications happen to the unworthy, to those who just didn't put in the effort.
My diabetes management has been hard. I mean it. My Dexcom data currently shows that the time of day for which I have the greatest glucose variability, and the highest average sensor glucose is..... 4 AM. Yeah- the time of day when I haven't eaten in many hours, I'm not exercising (I'm pretty much always asleep in bed at 4 AM), and you would think there are no variables. But no. At 4 AM, the standard deviation on my blood sugar is twice what it will be at noon. Wanna know why? It's because, at 4 AM (right before I typically wake up and eat or inject before going back to sleep) is when I am least likely to have checked my blood sugar in the previous three hours.
When I went on the Guardian, my first CGM, in 2008, I thought the overnight data was gonna be really useful in adjusting my Lantus dose. I'd know, in the mornings, whether my highs had been rebounds from low or what. Unfortunately, what I found was that almost every single night, my blood sugar was both low and high. It could go low and then high, or it could just as easily go high and then low. The variability was much greater than I had suspected. So I relaxed on my target for morning blood sugar numbers- no point in aiming for a blood sugar below 120 at wake up if most nights my blood sugar has been both 60 above and below what I wake up with.
These days my night time blood sugar shifts directions less frequently and often moves more slowly, but it is still difficult to figure out.
My blood sugar average is lower than the average for a type 1 adult, and so is my daily range. I have more hypoglycemia, and less hyperglycemia than the average. I have a lot of volatility to my numbers. The absolute value of the first derivative of my blood sugar in terms of mg/dl per minute is usually about 3.
Putting my own blood sugar difficulties aside for a moment, I find it instructive to look at why 7% was chosen as the target A1c. It's because that was the average A1c in the intervention group in the DCCT, the group that had lowered risk of complication and death, and the goal A1c they used was 6%. That means roughly half of them didn't make it down to 7% despite intensive work at diabetes control. Furthermore, after the study ended, despite what they knew, the average A1c in the intervention group rose to 8.7%. If it had been easy to keep it at 7.0%, it would've stayed there.
That's my first point.
My second point is on the usefulness of diabetes control. I am not going to argue with anybody who says that somebody who has repeat episodes of DKA is doing a bad job of diabetes management (unless maybe it's euglycemic DKA). I am also not going to argue with anybody who says that on average, people with pretty much any measure of diabetes control take longer to develop complications and develop fewer complications overall. I have a big argument ready for anybody who claims that a level of diabetes control sufficient to prevent all serious complications is easily doable for everybody.
In study after study that I have read on various complications, A1c has been one of the more minor risk factors for developing the complication. Some of this isn't all that convincing because the average A1c in the diabetes group has been above 8% or even 9%, and the A1c is not really a great measure of average blood sugar or blood sugar control (see this recent article). But what to make of studies like this, where the average A1c is 7% but the rate of complications is more than half? Or that when I went to look at A1cs in diabetics getting vitrectomies, all of the studies I found included patients with A1cs below 6%? Depending on the complication and duration of diabetes, it's not hard to find prevalence studies on type 1 diabetics showing complication rates in excess of 80 or even 90 percent.
Joslin medalists aren't in that group, with overall fairly low complication rates after 50 years of diabetes. Their average A1c is above 7% now. The correlation among the Joslin medalists between their current A1c and retinopathy is nonexistant (same average A1c between those with and without retinopathy). Same for neuropathy. The correlation among Joslin medalists between A1c and nephropathy didn't reach the level of statistical significance, but I'm willing to say it exists (average A1c in those with nephropathy was 0.3% higher). Heart disease also showed a correlation that didn't reach the level of statistical significance but that also probably exists.
That means that the average A1c in a group of diabetics that made it more than 50 years on insulin was over 7% now, when their A1cs are probably lower than they have been for most of the last 50 years, if advances in diabetes care have made any differences in their lives. At an average of 7.2%, it is lower than the average for most diabetes cohorts I've seen. The two complications that really didn't correlate with A1c were the most common ones (eye and nerve disease). The two complications that almost correlated with A1c were the more dangerous two (heart and kidney disease). See Data Here
It is very possible for any type 1 diabetic to ignore their diabetes or otherwise mismanage their diabetes such that they will be able to cause their own premature deaths, possibly with diabetes complications on the way. It is not currently possible for all type 1 diabetics to prevent their own deaths from diabetes complications nor their development of diabetes complications.
Sunday, April 29, 2012
Wednesday, April 25, 2012
There Should Be a Word
For the injection that's a little smaller or larger than you would have usually done, because it's the last of the insulin pen or vial, and you didn't feel like combining insulins in a syringe or doing two shots.
For the injection that is the last of one vial's insulin mixed with the first insulin of the next vial.
For the meal that you eat that's smaller or larger because your dose changed with the amount of insulin left in the vial.
For the injection that is the last of one vial's insulin mixed with the first insulin of the next vial.
For the meal that you eat that's smaller or larger because your dose changed with the amount of insulin left in the vial.
Sunday, April 22, 2012
Some Thoughts On Celiac Disease
I recently decided to do some research on the history of celiac disease.
I had thought I'd read that celiac was discovered when grain shortages in Europe during world war two, and unexpected reduced mortality, had made it clear that some kids do better without gluten.
So I thought those would be some really neat primary sources if I could find them. Guess what? It didn't happen like that. First of all, celiac is apparently a word that used to just refer to the abdomen. Celiac sprue or celiac disease was first described in 1888 by Samuel Gee as a. disorder causing malabsorption of fat in small children.
A search for early articles on celiac disease turns up a lot of ignorance about the causes and treatment. A lot of diets were experimented with. Some of the reading is really sad. One major early strain of thought about celiac was that since a major symptom of celiac is fat malabsorption, a low fat diet should be used. Guess what? A low fat diet will decrease fat in stools, but it didn't tend to improve the condition of people with celiac. Other treatments included vitamins (malabsorption of various vitamins is typical in advanced celiac).
Somehow, I had gotten into the habit of thinking of celiac as an unpleasant and maybe long term life threatening, but not really serious disease. However, before a correct diet was known this wasn't the case. A 1939 article about 74 kids admitted to the hospital with a diagnosis of celiac said that 22 had died in that hospitalization. I can't imagine a similar mortality figure happening today.
From the late 1940s, I begin to find articles trying "low starch" or even no starch diets in the treatment of celiac disease, with great results. There's no hint that it's gluten they want to get rid of, but the sample diets make it clear that that's what they do. However, these do not catch on as quickly as they're published.
When in 1951, the Sick Kids Hospital in Toronto puts out an article on "The Coeliac Syndrome" they include a list of foods that patients can tolerate from best tolerated to worst: protein milk, curds, low fat beef, egg whites, cereals- rice, barley and wheat, chicken, fish, lamb, liver, bacon, banana, toast, jellies, pablum, applesauce, other fruits and vegetables. .
Source However, the Lancet that same year publishes an article saying that substituting soy and corn flour for wheat and rye improves the condition of youth with celiac.
By the mid-1950s, a gluten free diet for children with celiac disease seems to have been accepted even though celiac was still almost certainly underdiagnosed.
Before there was treatment available for celiac disease, there was enough studying on the topic to link it with type 1 diabetes as definitively as it is currently linked. The affects on the small intestine had been pictured. There was a lot of knowledge about things that didn't really work. And there were sixty years of watching kids die.
Side note: This recent study on autoimmune disease prevalence in Sardinia says that in their study population only 17 men had diagnoses of celiac disease, as compared to 212 women. Since elsewhere the ratio of women:men with celiac is closer to 4:1 than 12:1, this probably represents a very significant lack of awareness that celiac disease occurs in men, among doctors in Sardinia. Source. See table three.
Now, I don't think there's anything so simple that will treat diabetes. No dietary fix. But I just keep thinking- it took sixty years from the publication of the first article on celiac to the first article showing something that made any real difference on the prognosis of children with celiac. In 1945 there was no reason to think that a real treatment for celiac was in the eves. In 1955 a review of the literature would show the way to health for a person with celiac.
P.S. Sorry for the formatting in the post as originally posted. This new blogger editor, I don't like.
So I thought those would be some really neat primary sources if I could find them. Guess what? It didn't happen like that. First of all, celiac is apparently a word that used to just refer to the abdomen. Celiac sprue or celiac disease was first described in 1888 by Samuel Gee as a. disorder causing malabsorption of fat in small children.
A search for early articles on celiac disease turns up a lot of ignorance about the causes and treatment. A lot of diets were experimented with. Some of the reading is really sad. One major early strain of thought about celiac was that since a major symptom of celiac is fat malabsorption, a low fat diet should be used. Guess what? A low fat diet will decrease fat in stools, but it didn't tend to improve the condition of people with celiac. Other treatments included vitamins (malabsorption of various vitamins is typical in advanced celiac).
Somehow, I had gotten into the habit of thinking of celiac as an unpleasant and maybe long term life threatening, but not really serious disease. However, before a correct diet was known this wasn't the case. A 1939 article about 74 kids admitted to the hospital with a diagnosis of celiac said that 22 had died in that hospitalization. I can't imagine a similar mortality figure happening today.
From the late 1940s, I begin to find articles trying "low starch" or even no starch diets in the treatment of celiac disease, with great results. There's no hint that it's gluten they want to get rid of, but the sample diets make it clear that that's what they do. However, these do not catch on as quickly as they're published.
When in 1951, the Sick Kids Hospital in Toronto puts out an article on "The Coeliac Syndrome" they include a list of foods that patients can tolerate from best tolerated to worst: protein milk, curds, low fat beef, egg whites, cereals- rice, barley and wheat, chicken, fish, lamb, liver, bacon, banana, toast, jellies, pablum, applesauce, other fruits and vegetables. .
Source However, the Lancet that same year publishes an article saying that substituting soy and corn flour for wheat and rye improves the condition of youth with celiac.
By the mid-1950s, a gluten free diet for children with celiac disease seems to have been accepted even though celiac was still almost certainly underdiagnosed.
Before there was treatment available for celiac disease, there was enough studying on the topic to link it with type 1 diabetes as definitively as it is currently linked. The affects on the small intestine had been pictured. There was a lot of knowledge about things that didn't really work. And there were sixty years of watching kids die.
Side note: This recent study on autoimmune disease prevalence in Sardinia says that in their study population only 17 men had diagnoses of celiac disease, as compared to 212 women. Since elsewhere the ratio of women:men with celiac is closer to 4:1 than 12:1, this probably represents a very significant lack of awareness that celiac disease occurs in men, among doctors in Sardinia. Source. See table three.
Now, I don't think there's anything so simple that will treat diabetes. No dietary fix. But I just keep thinking- it took sixty years from the publication of the first article on celiac to the first article showing something that made any real difference on the prognosis of children with celiac. In 1945 there was no reason to think that a real treatment for celiac was in the eves. In 1955 a review of the literature would show the way to health for a person with celiac.
P.S. Sorry for the formatting in the post as originally posted. This new blogger editor, I don't like.
Wednesday, April 18, 2012
Bureaucracy
My father's employer provides an option for him to set aside pre-tax money at the beginning of the year to use for medical expenses for himself and dependents (which includes me even though this year I am not his dependent for tax purposes). This year they are doing that through a service called PayFlex. We use the PayFlex card like a credit card to pay for medical expenses. In February, I used the card to purchase Dexcom sensors. I authorized a payment of $232.30 on the card, and then I believe I reimbursed my parents.
My father handed me a letter yesterday. It was addressed to him, from PayFlex. It said that they were questioning a particular transaction and that they wanted to see an EOB or itemized receipt or else reimburse the fund or have the rest of the funds in the account restricted. My father told me to handle it.
First I looked for the receipt, but I'd probably thrown in away in my passover cleaning. Then I got Dexcom to email me another receipt. It was for $52.30. I was about to write them and say that was the wrong receipt when I reread the PayFlex letter and saw that I needed the EOB and not the Dexcom receipt if insurance had paid part of the cost.
So, I sorted through the EOBs that my mother had in her room (insurance sends EOBs with my stuff on one side of a piece of paper and another family member's stuff on the other side of the page- very annoying). I sorted and sorted and sorted and found only one applicable EOB about a Dexcom purchase in February- and it said we'd owed $52.30, which we'd paid.
So I got on the phone with BCBS-IL. The extremely wonderful customer service person was very thorough looking through my records and she found only the $52.30. She said if we'd paid $232.30, then Dexcom owed us $180.
So I got on the phone and called Dexcom. They said that we had indeed paid $232.50, but that they'd refunded $180. How did you refund it? I asked. To the credit card! Which means that they'd refunded the $180 to PayFlex!
So I got on the phone and called PayFlex. And they said they couldn't talk to me because I wasn't the account holder.
I handed that off to my father when he got home from work, and he called PayFlex, and they acknowledged that they'd got the refund and said they still wanted the EOB for $52.30.
I spent, in total, roughly three hours working on this. Three hours! I took up the time of three people at Dexcom and two at the insurance company- my phone call to insurance took 1 hour and 12 minutes- for a bureaucratic mistake! How I would have handled this if I hadn't had the day off of work (my next weekday off of work will be May 30th) I don't know.
While I was on the phone with insurance, I figured I might well ask for a replacement medical insurance card, which I'm getting, and I asked about if I could get the Jet Injector covered, which we didn't find the answer to.
My father handed me a letter yesterday. It was addressed to him, from PayFlex. It said that they were questioning a particular transaction and that they wanted to see an EOB or itemized receipt or else reimburse the fund or have the rest of the funds in the account restricted. My father told me to handle it.
First I looked for the receipt, but I'd probably thrown in away in my passover cleaning. Then I got Dexcom to email me another receipt. It was for $52.30. I was about to write them and say that was the wrong receipt when I reread the PayFlex letter and saw that I needed the EOB and not the Dexcom receipt if insurance had paid part of the cost.
So, I sorted through the EOBs that my mother had in her room (insurance sends EOBs with my stuff on one side of a piece of paper and another family member's stuff on the other side of the page- very annoying). I sorted and sorted and sorted and found only one applicable EOB about a Dexcom purchase in February- and it said we'd owed $52.30, which we'd paid.
So I got on the phone with BCBS-IL. The extremely wonderful customer service person was very thorough looking through my records and she found only the $52.30. She said if we'd paid $232.30, then Dexcom owed us $180.
So I got on the phone and called Dexcom. They said that we had indeed paid $232.50, but that they'd refunded $180. How did you refund it? I asked. To the credit card! Which means that they'd refunded the $180 to PayFlex!
So I got on the phone and called PayFlex. And they said they couldn't talk to me because I wasn't the account holder.
I handed that off to my father when he got home from work, and he called PayFlex, and they acknowledged that they'd got the refund and said they still wanted the EOB for $52.30.
I spent, in total, roughly three hours working on this. Three hours! I took up the time of three people at Dexcom and two at the insurance company- my phone call to insurance took 1 hour and 12 minutes- for a bureaucratic mistake! How I would have handled this if I hadn't had the day off of work (my next weekday off of work will be May 30th) I don't know.
While I was on the phone with insurance, I figured I might well ask for a replacement medical insurance card, which I'm getting, and I asked about if I could get the Jet Injector covered, which we didn't find the answer to.
Sunday, April 15, 2012
Normal People's Blood Sugar
I was doing a search for something else when I came accross an interesting study. 74 people without diabetes wore Dexcom sensors for a week. Lots of data was collected.
To me the most strange and interesting tidbit is that the youngest group had average sensor glucose values a full standard deviation above that of the oldest group, even though they had lower HbA1cs. The full data on this study would be interesting for all of us trying to figure out what blood sugars are healthy. Unfortunately, for many of the data points only the medians and interquartile ranges are given rather than the full ranges. That means the highest and lowest fourth of the people are ignored for many of these data points. Please remember that when looking at this data! Here is the study (click on results in the tabs at the top if that's not how it opens): http://clinicaltrials.gov/ct2/show/results/NCT00717977?term=dexcom&rank=15§=X6015#outcome1
To me the most strange and interesting tidbit is that the youngest group had average sensor glucose values a full standard deviation above that of the oldest group, even though they had lower HbA1cs. The full data on this study would be interesting for all of us trying to figure out what blood sugars are healthy. Unfortunately, for many of the data points only the medians and interquartile ranges are given rather than the full ranges. That means the highest and lowest fourth of the people are ignored for many of these data points. Please remember that when looking at this data! Here is the study (click on results in the tabs at the top if that's not how it opens): http://clinicaltrials.gov/ct2/show/results/NCT00717977?term=dexcom&rank=15§=X6015#outcome1
Saturday, April 14, 2012
A Whine
I woke up this morning to find that...
1. My sensor had fallen out in the night. My fault because I didn't shave the area before inserting the sensor. I should know better. The sensor had been sort of sticking on to my hairs but not really to my skin. I had tried to stick it on more with bandaids but that didn't buy me as much time as I'd hoped. It being the sabbath, I didn't replace the sensor.
2. My blood sugar was 272. The sensor data shows me rising slowly and steadily until about 3 AM when my sensor stopped working and my sensor reading was 182. So I guess last night's Lantus didn't absorb well. Frankly, I don't think the 4mm needles are really great for injections in my butt, where I put the Lantus. They're really nice for when I was using a Novopen and injecting everywere with them but they cause more leak in my butt. I took six units and stayed home from synagogue because I didn't really want to do much with that kind of blood sugar.
3. My glasses had snapped in half (the nosepiece was where it broke). I had left them on the couch when I'd gone to bed and somebody (maybe even me) must've sat on them. Or maybe bounced on them, since the halves weren't all that close to each other. My optometrist works Sundays, happily, but I can't really see with them as they are because they don't stay the right distance from my eyes and I can't see much without them. I have the screen at 125% and I still can't see what I'm typing very clearly unless I put my head too close to the screen.
My blood sugar's been rough over passover, which I happily is over. The wine on the first night of passover woke up my pancreatitis, so I had a real struggle to eat much and my hypos were hard to treat and I kept bouncing high and low, except for a few days in which I was nothing but low.
My last three sensors have been subpar. The most recent one didn't stick on well. The one before that wasn't very accurate and I pulled it after a week. The one before that bled profusely, then went to ??? after less than a day, and left a really big lumpy painful bruise.
I didn't get new prescriptions at my last endo visit and have been using syringes at a rapid rate (5-6 per day in the last few weeks although the scrip says 3 per day). I'm about to be out and don't have any refill left on that prescription, so I'm going to need to either get the pharmacy get a refill, in which case I'll get another 3 boxes, or call and talk to the endo to ask for a new scrip for 5 per day. Which is such a small issue I don't know why I'm complaining.
I read a good book today, Locust, which was fittingly enough about Rocky Mountain Locust. It had nothing to do with diabetes.
I promise a less whiny post tomorrow, about normal people and blood sugar.
1. My sensor had fallen out in the night. My fault because I didn't shave the area before inserting the sensor. I should know better. The sensor had been sort of sticking on to my hairs but not really to my skin. I had tried to stick it on more with bandaids but that didn't buy me as much time as I'd hoped. It being the sabbath, I didn't replace the sensor.
2. My blood sugar was 272. The sensor data shows me rising slowly and steadily until about 3 AM when my sensor stopped working and my sensor reading was 182. So I guess last night's Lantus didn't absorb well. Frankly, I don't think the 4mm needles are really great for injections in my butt, where I put the Lantus. They're really nice for when I was using a Novopen and injecting everywere with them but they cause more leak in my butt. I took six units and stayed home from synagogue because I didn't really want to do much with that kind of blood sugar.
3. My glasses had snapped in half (the nosepiece was where it broke). I had left them on the couch when I'd gone to bed and somebody (maybe even me) must've sat on them. Or maybe bounced on them, since the halves weren't all that close to each other. My optometrist works Sundays, happily, but I can't really see with them as they are because they don't stay the right distance from my eyes and I can't see much without them. I have the screen at 125% and I still can't see what I'm typing very clearly unless I put my head too close to the screen.
My blood sugar's been rough over passover, which I happily is over. The wine on the first night of passover woke up my pancreatitis, so I had a real struggle to eat much and my hypos were hard to treat and I kept bouncing high and low, except for a few days in which I was nothing but low.
My last three sensors have been subpar. The most recent one didn't stick on well. The one before that wasn't very accurate and I pulled it after a week. The one before that bled profusely, then went to ??? after less than a day, and left a really big lumpy painful bruise.
I didn't get new prescriptions at my last endo visit and have been using syringes at a rapid rate (5-6 per day in the last few weeks although the scrip says 3 per day). I'm about to be out and don't have any refill left on that prescription, so I'm going to need to either get the pharmacy get a refill, in which case I'll get another 3 boxes, or call and talk to the endo to ask for a new scrip for 5 per day. Which is such a small issue I don't know why I'm complaining.
I read a good book today, Locust, which was fittingly enough about Rocky Mountain Locust. It had nothing to do with diabetes.
I promise a less whiny post tomorrow, about normal people and blood sugar.
Tuesday, April 03, 2012
Nathan's Blog
My A1c was 6.6%. Not quite coincidentally, 6.6% is also my median A1c from the last 20 A1cs I've had, and it's the average (actually the average is 6.615%). That makes the winner of the Guess My A1c Contest (such as it was)... Nathan.
I've had a little difficulty in trying to figure out what to write about this blog because it is so many things. Here's a try. Check it out.
Nathan's blog is about his ideas and progressions around managing his diabetes (type 1 for twenty some years). He uses a low carb diet and a minimed pump with the minimed CGM system, and is continually trying new supplements and treatments (so far the mentioned ones include intermittant fasting, alpha lipoic acid, vitamins A and D, yerba mate, and more) to see if they make his blood sugar lower and flatter.
Nathan's blog (like most of ours) is also about his life and health generally. He is a high school art teacher and has three kids. In 2011 he developed atrial fibrillation.
Nathan's blog has links and summaries for ideas about diabetes that further his knowledge or are futuristic. Also two book reviews.
His blog is Edibles... The Diabetic Edition.
My favorite post that he has put up so far is an interview with his children.
I've had a little difficulty in trying to figure out what to write about this blog because it is so many things. Here's a try. Check it out.
Nathan's blog is about his ideas and progressions around managing his diabetes (type 1 for twenty some years). He uses a low carb diet and a minimed pump with the minimed CGM system, and is continually trying new supplements and treatments (so far the mentioned ones include intermittant fasting, alpha lipoic acid, vitamins A and D, yerba mate, and more) to see if they make his blood sugar lower and flatter.
Nathan's blog (like most of ours) is also about his life and health generally. He is a high school art teacher and has three kids. In 2011 he developed atrial fibrillation.
Nathan's blog has links and summaries for ideas about diabetes that further his knowledge or are futuristic. Also two book reviews.
His blog is Edibles... The Diabetic Edition.
My favorite post that he has put up so far is an interview with his children.
Subscribe to:
Posts (Atom)