On Wednesday morning, I'll be seeing my endocrinologist. There's bloodwork I need. I may go over some of the blood sugar patterns that are driving me batty- unfortunately I suspect his recommendation will be switching from Lantus to Levemir and I don't really want to. I'll probably get a battery of bloodwork since I haven't been in since November- a CBC, A1c, TSH, a lipid panel. My A1c is probably going to be up a bit, so I'm not looking forward to seeing it. I'm thinking it'll be in the upper 6s. I'm probably due for a microalbumin test too. I was planning on having my nurse practitioner test my testosterone levels next month, but maybe I'll ask the endo to run those tests.
I'm planning to talk to my endo about getting a jet injector. I just got off the phone with a technician at Activa, a Canadian company that makes jet injectors. I forgot to ask if she thought insurance would help with the cost. In any case, there's a start up price of $695, to paid after they build the injector, and an ongoing price for vial adaptors. For each vial used with the jet injector, you use a new vial adaptor (meaning one disposable item per vial instead of per injection) and a pack of four of those is $38. Since I'm figuring on using this just for Regular, that would mean I'd need to buy two packs per year, since I'd use about eight vials of Regular per year. That would make the ongoing cost $78 per year for me if insurance paid nothing, vs $200 per year in copays for syringes. At a savings of $122 per year, it would take five years for the injector to pay for itself, and that's assuming that I stayed insured and my copays didn't increase (it's also assuming I won't need to buy syringes during that time, which may be a false assumption given that I inject testosterone as well). The jet injector comes with a two year warranty but existing customers can buy replacement jet injectors for under $200.
At this point, the only thing making me hesitate is the question in my mind about how long I'll be doing shots for. I see no advantage to me in the current insulin pumps available in the United States, because their pump+CGM combo doesn't change insulin administration based on CGM readings on its own. If and when the US gets a pump+CGM combo that features an automatic basal turn off based on low blood sugars, then I would be interested, although I'd first want to see how well I tolerated the sensors and infusion sets. The sof-sensors are not good enough for my skin. I was very disappointed to see that in Europe, where the Animas Vibe has been released, the Animas does nothing based on Dexcom readings. It just lets you use one receiver/monitor for the Dexcom CGM and Animas pump.
I think the soonest something I'd be willing to use would be available in two years. Realistically, I think it may be even longer, since Dexcom doesn't seem to going in that direction and minimed hasn't gotten FDA approval for the low glucose suspend or for the enlite sensors. And I'd need to try out the enlite sensors before switching to the pump because I'd want to be reasonably certain that the sensors were wearable for me as well as reasonably accurate; otherwise there'd be no point to having a pump that relied on them.
Anyways, if I figure I'd need to be needing injections for five more years before the jet injector paid for itself, then it might or might not end up paying for itself but I'm interested in trying something new anyways. Maybe it will really give me a better injection experience, anyways. That would be nice! And hopefully it will be nicer for the environment. And maybe with there being no needles, it would be sort of more discrete.
Thursday, March 15, 2012
Wednesday, March 14, 2012
My Doctors
For most of my life, I didn't have a doctor who knew me. There was no doctor who knew my life story, and I had no sense of needing a doctor to know me. Aside from which, I figured I could let my parents deal with esoteric things like doctor visits.
I was seventeen years and ten months old when I was diagnosed with diabetes, and my hospitalization and diabetes education happened at a children's hospital. I was assigned a pediatric endocrinologist- in fact, a whole diabetes team- there, and I was given the option of staying with them through the end of college (which would have been three more years- I was a sophomore in college at the time) or of switching to an adult endocrinologist immediately. Although I liked my CDE a lot, I had not enjoyed my hospitalization and I had particularly not liked that I was very clearly not in charge of my own treatment at the children's hospital. I had wanted to leave the hospital AMA as soon as I was out of ketosis, but I was given to understand that I would be kept in the hospital by force if I tried to leave, so I stayed. This, in addition to the fact that the endocrinologist had, on four occasions, touched me against my will and for no good reason, made me want to look for a doctor who would see me as an adult (I don't think it had yet occurred to me that adults are not always given much say in their treatments either).
Fortunately, I didn't have to say any of this; it was assumed that a college student like myself might want to switch to an adult endocrinologist and I was offered a list of endocrinologists in the area. I got a three page list with about fifteen names, which I guess was probably actually far fewer endocrinologists specializing in diabetes than are actually in the area. This gave me the sense that I had choices. I came up with three things I wanted from my future doctor (in retrospect, not an especially useful three things). I then picked a name off of the list almost at random, and called. I got his secretary, asked her my questions about the doctor, was reasonably satisified with the answers, and made an appointment. The endocrinologist made a reasonably good impression the first time, and a better impression the next time, so I kept him. He remains My Endocrinologist. He has really great availability, so I've made a number of appointments with him when I've been sick, and he's the one who diagnosed my thyroiditis and gallstones and referred me to a surgeon. He's served as a sounding board for diabetes ideas, and he writes me prescriptions, gives me samples every now and then, tells me medical stories, draws my blood, runs some tests on it himself, and sends some for other tests. He also tests my feet.
What he doesn't do is anything he feels is too far out of his expertise, and that includes anything to do with my sex/gender. This is somewhat ironic, as he is an endocrinologist, and it is an endocrine issue. But after I had received my official letter from a therapist recommending hormone therapy (that is, testosterone), My Endocrinologist took a month to decide that he was not comfortable with putting me on testosterone, given that he had no experience with putting a transman on testosterone, and that the therapy letter I had detailed some of the therapist's concerns on the con side of giving me testosterone (to wit, my family was hostile and I had no real support system).
So, I went and got myelf a second doctor. I went through a clinic that especially serves the transgender, gay, lesbian and bisexual population of Chicago, and picked a doctor who came with a recommendation from a friend. That doctor put me on testosterone, but he was sort of lackadaisical about it, and ignored a number of warning signs that my dose was too high, and so I got sick from it, and sick of him, and decided I wanted to try a different provider within the clinic.
My new provider I already knew because she worked at the youth center that is associated with the clinic, where I hung out for a number of years. She proved to be helpful with my medical issues all around, and helped to figure out some of the unusual quirks of my body, both around testosterone and otherwise. She is a nurse practitioner with a lot of experience with trans people, as well as other stuff.
For three and a half years then, I've had two medical providers that I saw on a regular basis, who were both keeping up with my medical saga, helping me with overlapping but different areas of my medical needs, and who've been around while most of my most major medical issues have been unfolding. Unfortunately, the nurse practitioner is now moving to New York, which is too far for me to go to see her.
Now I have two options:
1. Try to convince My Endocrinologist that he should become my sole primary care provider and prescribe and supervise the testosterone to boot; or
2. Establish a relationship with a new medical practitioner.
I don't have to pick immediately, since I currently have a supply of testosterone that, if I stay on this dose, will last me until roughly August 2013. I take 5 mg/day and my store is currently about 2200 mg- or 440 days' worth.
I made an appointment to see my endocrinologist next week. I haven't decided whether or not I should run option 1 by him. One of the major drawbacks of that plan is that my endocrinologist is in his 70s or 80s (see this post), and he's probably going to retire at some point. It would be nice to have somebody else who knows what's going with me at that point. Of course, the endocrinologist might say no anyways.
So I've been thinking a lot about option 2. Another nurse practioner within the clinic is apparently prepared to be my provider. I don't know him, and I don't know much about him. I've been thinking a lot about what I want to tell him if I see him.
Eh, this post is too long already. What I really wanted to write about is what I'm thinking as I organize what to say to somebody who might be my new doctor, but it will wait for another post.
I was seventeen years and ten months old when I was diagnosed with diabetes, and my hospitalization and diabetes education happened at a children's hospital. I was assigned a pediatric endocrinologist- in fact, a whole diabetes team- there, and I was given the option of staying with them through the end of college (which would have been three more years- I was a sophomore in college at the time) or of switching to an adult endocrinologist immediately. Although I liked my CDE a lot, I had not enjoyed my hospitalization and I had particularly not liked that I was very clearly not in charge of my own treatment at the children's hospital. I had wanted to leave the hospital AMA as soon as I was out of ketosis, but I was given to understand that I would be kept in the hospital by force if I tried to leave, so I stayed. This, in addition to the fact that the endocrinologist had, on four occasions, touched me against my will and for no good reason, made me want to look for a doctor who would see me as an adult (I don't think it had yet occurred to me that adults are not always given much say in their treatments either).
Fortunately, I didn't have to say any of this; it was assumed that a college student like myself might want to switch to an adult endocrinologist and I was offered a list of endocrinologists in the area. I got a three page list with about fifteen names, which I guess was probably actually far fewer endocrinologists specializing in diabetes than are actually in the area. This gave me the sense that I had choices. I came up with three things I wanted from my future doctor (in retrospect, not an especially useful three things). I then picked a name off of the list almost at random, and called. I got his secretary, asked her my questions about the doctor, was reasonably satisified with the answers, and made an appointment. The endocrinologist made a reasonably good impression the first time, and a better impression the next time, so I kept him. He remains My Endocrinologist. He has really great availability, so I've made a number of appointments with him when I've been sick, and he's the one who diagnosed my thyroiditis and gallstones and referred me to a surgeon. He's served as a sounding board for diabetes ideas, and he writes me prescriptions, gives me samples every now and then, tells me medical stories, draws my blood, runs some tests on it himself, and sends some for other tests. He also tests my feet.
What he doesn't do is anything he feels is too far out of his expertise, and that includes anything to do with my sex/gender. This is somewhat ironic, as he is an endocrinologist, and it is an endocrine issue. But after I had received my official letter from a therapist recommending hormone therapy (that is, testosterone), My Endocrinologist took a month to decide that he was not comfortable with putting me on testosterone, given that he had no experience with putting a transman on testosterone, and that the therapy letter I had detailed some of the therapist's concerns on the con side of giving me testosterone (to wit, my family was hostile and I had no real support system).
So, I went and got myelf a second doctor. I went through a clinic that especially serves the transgender, gay, lesbian and bisexual population of Chicago, and picked a doctor who came with a recommendation from a friend. That doctor put me on testosterone, but he was sort of lackadaisical about it, and ignored a number of warning signs that my dose was too high, and so I got sick from it, and sick of him, and decided I wanted to try a different provider within the clinic.
My new provider I already knew because she worked at the youth center that is associated with the clinic, where I hung out for a number of years. She proved to be helpful with my medical issues all around, and helped to figure out some of the unusual quirks of my body, both around testosterone and otherwise. She is a nurse practitioner with a lot of experience with trans people, as well as other stuff.
For three and a half years then, I've had two medical providers that I saw on a regular basis, who were both keeping up with my medical saga, helping me with overlapping but different areas of my medical needs, and who've been around while most of my most major medical issues have been unfolding. Unfortunately, the nurse practitioner is now moving to New York, which is too far for me to go to see her.
Now I have two options:
1. Try to convince My Endocrinologist that he should become my sole primary care provider and prescribe and supervise the testosterone to boot; or
2. Establish a relationship with a new medical practitioner.
I don't have to pick immediately, since I currently have a supply of testosterone that, if I stay on this dose, will last me until roughly August 2013. I take 5 mg/day and my store is currently about 2200 mg- or 440 days' worth.
I made an appointment to see my endocrinologist next week. I haven't decided whether or not I should run option 1 by him. One of the major drawbacks of that plan is that my endocrinologist is in his 70s or 80s (see this post), and he's probably going to retire at some point. It would be nice to have somebody else who knows what's going with me at that point. Of course, the endocrinologist might say no anyways.
So I've been thinking a lot about option 2. Another nurse practioner within the clinic is apparently prepared to be my provider. I don't know him, and I don't know much about him. I've been thinking a lot about what I want to tell him if I see him.
Eh, this post is too long already. What I really wanted to write about is what I'm thinking as I organize what to say to somebody who might be my new doctor, but it will wait for another post.
Saturday, March 10, 2012
Update
The week before last was the sort of exhausting week where my exhaustion makes me make mistakes that make me even more exhausted. About ten days ago, I left my Dexcom receiver on the bus. Realized my mistake immediately, crossed the street to wait for the bus to come back. Waited half an hour only to find that my bus had been the first of the evening to go to the garage instead of turning and continuing the route in the other direction. Oy! It was just barely too late to go to the garage.
The next morning after prayers I went over to the garage, where they have a lost and found, and asked (through a window) if they'd found my Dexcom. The guy sorted through a file cabinet, picked out something that looked exactly like my Dexcom, at least through the window, and said sorry, no. So I filled out a form describing the bus, the Dexcom, my name and number and they said they'd call me if it came in. I was really hoping for a message on my machine Tuesday evening (I don't have a cell, just a home phone). No message. I hoped on Wednesday. No message. On Thursday morning I called the garage. They had my Dexcom!
On Thursday afternoon I went in and picked it up. They made me fill out paperwork and photocopied my ID before giving me the Dexcom. The lady at the window wanted to know what it was. It's a medical device, I said. It gives me an approximation of my blood sugar every five minutes.
Oh, you're diabetic too? Says the woman. I've never heard of that. I'm gonna have to look it up. Does it replace the finger (mimes jabbing a finger)?
So maybe that was hashgacha pratis (divine intervention) for that woman? I dunno.
My Dexcom battery had gone to zero and needed a while to recharge, which was the first time I'd run down the battery like that, but it was okay. It's working great at the moment.
Last week, Wednesday night-Thursday, was the Jewish holiday of Purim. Wednesday day was the fast of Esther. I tried fasting. I got up in the morning with a reasonable blood sugar (around 150) but it hit 200 just after prayers and I took 2 units of Regular. Around 3 hours later, my blood sugar went below 70, and stayed there for about an hour, while I ate a candy (admittedly not my best choice of candy- it was 15 grams of carbs but also had about 5 grams of fat and another 3 of protein). Very slowly through the afternoon my blood sugar went up up up until I injected for it around 4 PM.
The nondenominational prayer group I often pray with had teamed up with a Reform congregation for the holiday, and the Reform group didn't include people fasting, so they had food before the the megillah reading (when I couldn't eat) so started the reading late. Then it turned out they weren't planning a kosher megillah reading, but they had a scroll. So I got the scroll and started reading, out loud. By the time I finished, I was shaking from exhaustion. Breaking fasts is kind of hard, bg wise; my body seems to utilize all of the sugar immediately instead of storing some in the liver, so I need a lot more insulin per carb and have much more of a tendency to shoot high. So I took a lot of insulin and didn't eat all that much. Then I went to a friend's house and spent a couple of hours practicing reading the book of Esther for the following morning. He took me home around midnight, and just then my blood sugar plumetted. I ate a bit more and went to bed.
On Purim day, I got up at 4:30 AM (after about four hours of sleep) to practice my megillah reading. I was a little high then but by the time I went to prayers I was in range and dropping. Unfortunately, I was so nervous during the reading that the tune didn't come out of my mouth- my voice was flat from anxiety. But at least I said all the words loudly and pronounced them correctly. I put together some great food stuffs, but then spent three hours really hypo and couldn't deliver them, and then I had to go to teach. I gave my students the food, which made them happy.
Anyways, Purim is over. Now to plan for passover!
The next morning after prayers I went over to the garage, where they have a lost and found, and asked (through a window) if they'd found my Dexcom. The guy sorted through a file cabinet, picked out something that looked exactly like my Dexcom, at least through the window, and said sorry, no. So I filled out a form describing the bus, the Dexcom, my name and number and they said they'd call me if it came in. I was really hoping for a message on my machine Tuesday evening (I don't have a cell, just a home phone). No message. I hoped on Wednesday. No message. On Thursday morning I called the garage. They had my Dexcom!
On Thursday afternoon I went in and picked it up. They made me fill out paperwork and photocopied my ID before giving me the Dexcom. The lady at the window wanted to know what it was. It's a medical device, I said. It gives me an approximation of my blood sugar every five minutes.
Oh, you're diabetic too? Says the woman. I've never heard of that. I'm gonna have to look it up. Does it replace the finger (mimes jabbing a finger)?
So maybe that was hashgacha pratis (divine intervention) for that woman? I dunno.
My Dexcom battery had gone to zero and needed a while to recharge, which was the first time I'd run down the battery like that, but it was okay. It's working great at the moment.
Last week, Wednesday night-Thursday, was the Jewish holiday of Purim. Wednesday day was the fast of Esther. I tried fasting. I got up in the morning with a reasonable blood sugar (around 150) but it hit 200 just after prayers and I took 2 units of Regular. Around 3 hours later, my blood sugar went below 70, and stayed there for about an hour, while I ate a candy (admittedly not my best choice of candy- it was 15 grams of carbs but also had about 5 grams of fat and another 3 of protein). Very slowly through the afternoon my blood sugar went up up up until I injected for it around 4 PM.
The nondenominational prayer group I often pray with had teamed up with a Reform congregation for the holiday, and the Reform group didn't include people fasting, so they had food before the the megillah reading (when I couldn't eat) so started the reading late. Then it turned out they weren't planning a kosher megillah reading, but they had a scroll. So I got the scroll and started reading, out loud. By the time I finished, I was shaking from exhaustion. Breaking fasts is kind of hard, bg wise; my body seems to utilize all of the sugar immediately instead of storing some in the liver, so I need a lot more insulin per carb and have much more of a tendency to shoot high. So I took a lot of insulin and didn't eat all that much. Then I went to a friend's house and spent a couple of hours practicing reading the book of Esther for the following morning. He took me home around midnight, and just then my blood sugar plumetted. I ate a bit more and went to bed.
On Purim day, I got up at 4:30 AM (after about four hours of sleep) to practice my megillah reading. I was a little high then but by the time I went to prayers I was in range and dropping. Unfortunately, I was so nervous during the reading that the tune didn't come out of my mouth- my voice was flat from anxiety. But at least I said all the words loudly and pronounced them correctly. I put together some great food stuffs, but then spent three hours really hypo and couldn't deliver them, and then I had to go to teach. I gave my students the food, which made them happy.
Anyways, Purim is over. Now to plan for passover!
Monday, February 20, 2012
Lows in the night
I went to bed last night shortly after midnight. I'd been eating for a couple of hours trying to get my blood sugar up, and I thought I'd finally done it.
I woke up briefly around 7 am, noted that my blood sugar was slightly low, didn't do anything about it, and woke up again at 9 am when my mother checked on me. At that point I needed to go to work, so I skipped breakfast. Lunch made me high, probably because it was my first meal of the day, and I didn't correct it because I had taken insulin and because I knew I was going for a walk after work (a friend is training for a 5K and I walked with him and then by myself). I took 12 units when I was about half a mile from home and still around 190. Came down a bit before I ate, ate too much at one sitting, and am now going down again. I had raised my Lantus dose back to 7 units Friday night and kept it there Saturday and Sunday nights, but I just took 6 tonight.
Anyways, I wanted to show this Dexcom graph mostly because it shows me going LOW and coming up without treating it, and I do not have much of any insulin resistance today; the high from lunch did not keep climbing. This is pretty typical for what happens after I am low in the night.
Thursday, February 16, 2012
Hodgepodge post
I keep thinking about the methotrexate shortage and drug shortages in general and cost control of drugs. And how Iran has the cheapest insulin. And about scandals regarding drug manufacture. I think the US government should get in the drug manufacturing business in order to cut prices, improve purity, and create access for Americans. Or if not the US govt, then a nonprofit.
When I didn't have a CGM, and I decreased my Lantus dose and had more overnight drop, I assumed that on the first night I'd had lows. Well, I didn't have lows the last few nights on 7 units of Lantus, although I didn't trust the down trend. So I dropped the dose to 6 units last nght and thought I'd be stable or rise overnight. Nah... dropped and woke up hypo, with an overnight drop of roughly 70 mg/dl. 6 is a pretty low Lantus dose for me- before last night, the previous time I'd taken 6 units was the night of Yom Kippur, and the time before that was on my retreat in August- I tend to run low when traveling.
The first ten copies of the zine were all distributed with five requests pending, so I made another ten copies. I made a different cover because I didn't do the margins well the first time. Next issue, when I'm writing the pages, I'm going to use a yellow marker to create (small) margins. I went to buy 2 cent stamps so that I wouldn't have to put eight 1 cent stamps on a zine going overseas, and while I was at it I bought a sheet of the Go Green! stamps 'cause I like them. But then I gave them to my mother as a gift.
I made some scatter plots by hand on paper, comparing my daily standard deviation and averages, and time spent in the 75-165 range and daily average. The latter graph had a much more visually apparent trend; I sometimes have low standard deviations with high averages. But lower days are more likely to have been controlled, and also a large standard deviation is less likely when going down from the average much makes me hypo.
Dexcom is giving an extra free sensor to anybody who places their first online order in the next month or so. I gave it a try, and so far it is frustrating me. It took about a day to link my account to the information I provided online, and then after I put in a request for sensors, I got a statement that it'd get back to me regarding coverage and now it says something like cost $920 (two boxes), and that my part of that $920 would be $233. $233 sounds high to me, although I guess I'd pay it. But I'd really like to know where that comes from, since the online statement doesn't say anything about what my insurance is paying or anything like that. Do I have a deductible and then I pay 10%, like last year? Or am I going to be asked for $233 for each shipment this year?
When I didn't have a CGM, and I decreased my Lantus dose and had more overnight drop, I assumed that on the first night I'd had lows. Well, I didn't have lows the last few nights on 7 units of Lantus, although I didn't trust the down trend. So I dropped the dose to 6 units last nght and thought I'd be stable or rise overnight. Nah... dropped and woke up hypo, with an overnight drop of roughly 70 mg/dl. 6 is a pretty low Lantus dose for me- before last night, the previous time I'd taken 6 units was the night of Yom Kippur, and the time before that was on my retreat in August- I tend to run low when traveling.
The first ten copies of the zine were all distributed with five requests pending, so I made another ten copies. I made a different cover because I didn't do the margins well the first time. Next issue, when I'm writing the pages, I'm going to use a yellow marker to create (small) margins. I went to buy 2 cent stamps so that I wouldn't have to put eight 1 cent stamps on a zine going overseas, and while I was at it I bought a sheet of the Go Green! stamps 'cause I like them. But then I gave them to my mother as a gift.
I made some scatter plots by hand on paper, comparing my daily standard deviation and averages, and time spent in the 75-165 range and daily average. The latter graph had a much more visually apparent trend; I sometimes have low standard deviations with high averages. But lower days are more likely to have been controlled, and also a large standard deviation is less likely when going down from the average much makes me hypo.
Dexcom is giving an extra free sensor to anybody who places their first online order in the next month or so. I gave it a try, and so far it is frustrating me. It took about a day to link my account to the information I provided online, and then after I put in a request for sensors, I got a statement that it'd get back to me regarding coverage and now it says something like cost $920 (two boxes), and that my part of that $920 would be $233. $233 sounds high to me, although I guess I'd pay it. But I'd really like to know where that comes from, since the online statement doesn't say anything about what my insurance is paying or anything like that. Do I have a deductible and then I pay 10%, like last year? Or am I going to be asked for $233 for each shipment this year?
Thursday, February 02, 2012
Sonia Sotomayor: The True American Dream
I checked this book out last Thursday and finished it today. It is a biography of Sonia Sotomayor written by a contemporary of Sonia Sotomayor who has never spoken to Sotomayor. The book is based off of interviews with Sonia Sotomayors family and friends and people who used to go to the same school she did even if they weren't family or friends. It also draws from speeches, artilces briefs, and opinions by Sotomayor and articles about Sotomayor by other people. Oddly enough, Felix seems to have taken at face value everything said about Sotomayor as long as it wasn't negative, which makes for a somewhat conflicting story.
The story roughly told is: what Puerto Rico was like in the time of her mother's childhood, her mother's general life story, where Sonia Sotomayor went to school, what she did there, her more prominent escapades, her career, what people have to say about it, particularly if they praise her.
This book has nothing bad to say about Sonia Sotomayor at all. She's perfect! That gets a little bit annoying. But it's a sort of interesting story anyways. Because Sonia Sotomayor has had an interesting life. She was born to Puerto Rican parents in New York city in 1954, and she has one younger brother (he grew up to be a doctor). Her mother was a former WAC and nurse, her father a dye maker. She lived in the projects when people were proud to live in the projects. She was diagnosed with diabetes at the age of eight, after a long period of being withdrawn and quiet, and insulin made her seem to come magically back to life. Her father died the following year, leaving her mother to raise two kids alone. Sonia went to a prestigous Catholic high school while working to help support her family while her mother went to school to get an RN degree. She went to an Ivy League college; her test scores were not as high as those of her classmates but they had instituted affirmative action policies. She struggled but scored well in her classes. She then went to an Ivy League law school, where she "worked hard and partied hard." She also picked up a chain smoking habit. She went from law school to being a prosecutor (assistant Distrist Attorney in New York) then went into practice defending copyrighted bags and stuff like that, then became a judge, then another kind of judge, then supreme court justice. While she was judge, she got to end the baseball strike.
As to her diabetes: while the book suggests that her lack of diabetes complications was because she did everything right, and while it gives evidence that she did take her shots regularly and had very low A1cs consistantly, I think the evidence is stronger to suggest that she doesn't have type 1a diabetes. Why? Well, she didn't, in fact, take spectacular measures to control her diabetes- she took conscientious but ordinary measures to control her diabetes, such as always taking her shots, but still did things like drinking in the way that college students often do, eating no particularly controlled diet, and going long periods without exercise. She was diagnosed in a time period where she couldn't have been testing her blood sugar. Despite this, she never had an episode of severe hypoglycemia or even any episode of hypoglycemia that her coworkers could remember in which she had symptoms. She never had a hospitalization for diabetes, except possibly at diagnosis. She was diagnosed after a lengthy period that was so long that people saw her being quiet and withdrawn as just being normal for her, and she was not very sick when she was diagnosed. She'll be hitting fifty years with diabetes this year, and she has no complications at all. It's not proof that she doesn't have the regular type 1a diabetes, but it's suggestive.
Diabetes is mentioned in the book as one of the reasons she gave for wanting to get a lot of experience in different areas of law quickly- to get as much as possible done in case she died young.
Anyways. I think Sandra Sotomayor is an interesting character and if she ever publishes an autobiography, I'll be interested in reading that, but I think this book is a little too hard to trust.
Wednesday, February 01, 2012
My insurance company sent me an email today asking me to "show [my] red on facebook". That was in the title; I was curious enough to open the email. Turns out February is Heart Awareness Month. The email does not say exactly what it is I am supposed to be aware of when it comes to hearts. I think we are all aware that we have hearts- right? It's that thing that sort of burns when I do a sustained fast walk. Our awareness of hearts shows in the way we talk. Nobody talks about having kidney; they have heart. You don't take it to your liver, you take it to heart. And it's only second to the brain in terms of organs we feel that we need: you might be declared dead if your heart doesn't work, and whereas your kidneys and liver are said to "fail", if your heart doesn't work, you've been betrayed by a "heart attack"*. While it's not uncommon for people to be unable to locate any other internal organ (save the brain and maybe the larynx and stomach), most people know where their hearts are, and when their hearts hurt, they don't think maybe it's their lungs.
So frankly, I think we're all pretty aware of hearts. And I think turning your facebook red (or whatever it is my insurance is suggesting) is pretty pointless if all it's supposed to do is "support heart awareness".
So, so... what should you be aware of?
I dunno, honestly. I could give you statistics about who heart disease, but frankly I don't think it's useful to know how many people die of heart disease. I'll give you one statistic, but only 'cause it surprises people- more women than men die of heart disease (in 2009's CDC report, 397,874 American females vs 382,750 American males, out of a total of just under two and a half million deaths) . They just tend to die of it at older ages, is why it's more associated with men. But yeah, I have no idea how that statistic would help anybody.
So here's my challenge to you, my opinionated readers. Find me any data about hearts that is definitive, some data that actually means something. Raise my awareness. Leave me a comment and I'll make a post about it.
*I was five years old the first time I remember hearing the term "heart attack". As in, "Yitz just survived his third heart attack." I got a very confusing picture of what happened and I imagined that a heart attack was something along the lines of being attacked by a motorcycle gang- I was pretty sure about the motorcycles. It took years for me to stop associating heart attacks and motorcycles.
So frankly, I think we're all pretty aware of hearts. And I think turning your facebook red (or whatever it is my insurance is suggesting) is pretty pointless if all it's supposed to do is "support heart awareness".
So, so... what should you be aware of?
I dunno, honestly. I could give you statistics about who heart disease, but frankly I don't think it's useful to know how many people die of heart disease. I'll give you one statistic, but only 'cause it surprises people- more women than men die of heart disease (in 2009's CDC report, 397,874 American females vs 382,750 American males, out of a total of just under two and a half million deaths) . They just tend to die of it at older ages, is why it's more associated with men. But yeah, I have no idea how that statistic would help anybody.
So here's my challenge to you, my opinionated readers. Find me any data about hearts that is definitive, some data that actually means something. Raise my awareness. Leave me a comment and I'll make a post about it.
*I was five years old the first time I remember hearing the term "heart attack". As in, "Yitz just survived his third heart attack." I got a very confusing picture of what happened and I imagined that a heart attack was something along the lines of being attacked by a motorcycle gang- I was pretty sure about the motorcycles. It took years for me to stop associating heart attacks and motorcycles.
Sunday, January 29, 2012
Sensor Data For 100 Days with more than 12 hours' of readings
I finally have a hundred days with more than 12 hours' of reading on the same receiver, and I recently noticed that on the dexcom daily statistics chart, I can click on the category and it sorts my days. I started doing all the computations below when I'd had a day under 200 and started wondering- how often do I have days where my high is 200 or less? 18% of the time, as it turns out- between once and twice per week.
Including all days since October 15 with more than 144 readings; excludes November 10 (no readings), October 15 (10 readings), today (77 readings as of the upload) November 27 (96 readings), December 3 (99 readings), November 11, 131 readings, and December 12 (139 readings).
Of the remaining days,
one has more than 288 readings (daylight savings day),
three have at least 288 (missing no data),
fifty four have at least 276 (missing less than one hour of data),
sixty seven have at least 264 readings (missing up to two hours of data),
eighty have at least 252 readings (missing up to three hours of data)
eighty five have more than 240 readings (missing less than four hours of data)
eighty nine have more than 228 readings (missing less than five hours of data)
ninety have more than 216 readings (missing less than six hours of data)
ninety two have at least 204 readings (missing up to seven hours of data)
ninety four have more than 192 readings (missing up to eight hours of data)
ninety five have more than 180 readings (missing up to nine hours of data)
ninety eight have more than 168 readings (missing up to nine hours of data)
ninety nine have more than 156 readings (missing up to ten hours of data)
one hundred have at least 152 readings (missing up to 10.20 hours of data)
seven days have less than 144 readings (missing at least 12 hours of data).
OF THE ONE HUNDRED
The lowest max value was 159; the highest was HIGH. The median daily high was 237.5.
1 day was entirely below 160.
16 days were at or below 200; 15 days had highs between 160 and 200.
53 days were at or below 240; 37 days had highs between 201 and 240.
79 days were at or below 280; 26 days had highs between 241 and 280.
93 days were at or below 320; 14 days had highs between 281 and 320.
96 days were at or below 360; 3 days had highs between 321 and 360.
99 days were below 400; 3 days had highs between 360 and 400.
1 day had a reading of HIGH.
Both the lowest high and the highest high were checked against my meter. My accu chek reading for the "159" was 164; the accu chek on the "HIGH" was 302. 159 is reasonably close to 164 and I wouldn't be surprised either way if I had or hadn't been above 160 for that day. I checked the blood sugar after a reading of HIGH had been on my Dexcom for an hour, so it's possible that it was coming down by then and that I was really above 400 for some part of that hour, but my guess is that I wasn't really.
The runner up day with the highest sensor reading had a 389 about half an hour before I woke up, and then went to ???. Half an hour later, my bg on my meter was 250. I strongly suspect that the 389 was wrong and that I was not above 300, let alone 360. Could be wrong. The other two days with sensor readings above 360 may have been accurate; one I checked and my meter said 356, the other I took a correction for without checking my blood sugar, and I didn't go hypo.
OF THE HUNDRED
Min daily value ranged from LOW to 110, median daily low was 72.
84 days did not have a LOW; 16 days had low values of LOW.
68 days stayed at 50 or higher; 16 days had low values of 40-49
56 days stayed at 60 or higher; 12 days had low values of 50-59
29 days stayed at 70 or higher; 27 days had low values of 60-69
13 days stayed at 80 or higher; 16 days had low values of 70-79
7 days stayed at 90 or higher; 6 days had low values of 80-89
2 days stayed at 100 or higher; 5 days had low values of 90-99
1 day had a low value of 105, and 1 day had a low value of 110.
OF THE HUNDRED
Daily average ranged from 99 to 201, median 140.
Inter quartile range varied from 28 to 144, median 60.5. The interquartile range of the interquartile range was 48 to 75.
The standard deviation ranged from 20 to 110, median 49.5.
Including all days since October 15 with more than 144 readings; excludes November 10 (no readings), October 15 (10 readings), today (77 readings as of the upload) November 27 (96 readings), December 3 (99 readings), November 11, 131 readings, and December 12 (139 readings).
Of the remaining days,
one has more than 288 readings (daylight savings day),
three have at least 288 (missing no data),
fifty four have at least 276 (missing less than one hour of data),
sixty seven have at least 264 readings (missing up to two hours of data),
eighty have at least 252 readings (missing up to three hours of data)
eighty five have more than 240 readings (missing less than four hours of data)
eighty nine have more than 228 readings (missing less than five hours of data)
ninety have more than 216 readings (missing less than six hours of data)
ninety two have at least 204 readings (missing up to seven hours of data)
ninety four have more than 192 readings (missing up to eight hours of data)
ninety five have more than 180 readings (missing up to nine hours of data)
ninety eight have more than 168 readings (missing up to nine hours of data)
ninety nine have more than 156 readings (missing up to ten hours of data)
one hundred have at least 152 readings (missing up to 10.20 hours of data)
seven days have less than 144 readings (missing at least 12 hours of data).
OF THE ONE HUNDRED
The lowest max value was 159; the highest was HIGH. The median daily high was 237.5.
1 day was entirely below 160.
16 days were at or below 200; 15 days had highs between 160 and 200.
53 days were at or below 240; 37 days had highs between 201 and 240.
79 days were at or below 280; 26 days had highs between 241 and 280.
93 days were at or below 320; 14 days had highs between 281 and 320.
96 days were at or below 360; 3 days had highs between 321 and 360.
99 days were below 400; 3 days had highs between 360 and 400.
1 day had a reading of HIGH.
Both the lowest high and the highest high were checked against my meter. My accu chek reading for the "159" was 164; the accu chek on the "HIGH" was 302. 159 is reasonably close to 164 and I wouldn't be surprised either way if I had or hadn't been above 160 for that day. I checked the blood sugar after a reading of HIGH had been on my Dexcom for an hour, so it's possible that it was coming down by then and that I was really above 400 for some part of that hour, but my guess is that I wasn't really.
The runner up day with the highest sensor reading had a 389 about half an hour before I woke up, and then went to ???. Half an hour later, my bg on my meter was 250. I strongly suspect that the 389 was wrong and that I was not above 300, let alone 360. Could be wrong. The other two days with sensor readings above 360 may have been accurate; one I checked and my meter said 356, the other I took a correction for without checking my blood sugar, and I didn't go hypo.
OF THE HUNDRED
Min daily value ranged from LOW to 110, median daily low was 72.
84 days did not have a LOW; 16 days had low values of LOW.
68 days stayed at 50 or higher; 16 days had low values of 40-49
56 days stayed at 60 or higher; 12 days had low values of 50-59
29 days stayed at 70 or higher; 27 days had low values of 60-69
13 days stayed at 80 or higher; 16 days had low values of 70-79
7 days stayed at 90 or higher; 6 days had low values of 80-89
2 days stayed at 100 or higher; 5 days had low values of 90-99
1 day had a low value of 105, and 1 day had a low value of 110.
OF THE HUNDRED
Daily average ranged from 99 to 201, median 140.
Inter quartile range varied from 28 to 144, median 60.5. The interquartile range of the interquartile range was 48 to 75.
The standard deviation ranged from 20 to 110, median 49.5.
Saturday, January 28, 2012
New Supplies
I ordered new supplies last week. I received 3 boxes of 90 syringes, 2 boxes each with 1 vial of Novolin R, 1 box with 5 Lantus Solostar pens, and 8 boxes containing one vial of fifty Accu Chek Aviva Plus Test Strips.
The Accu Chek Aviva Plus test strips are new to me, although I heard about them a few weeks ago- the person I heard about them from is in the UK where apparently they've been out for a while. They use a different blood sugar measuring technique, one that doesn't cause falsely elevated readings in people who have high blood levels of non-glucose sugars. I'm a bit concerned about whether this means that the strips will have a different level of accuracy overall as compared to the old strips. I may do a comparison run between strips at some point but not now. Here's a picture of the boxes:
It's always interesting to me to see what insurance asks me to pay, and what they pay, given that it's a new year and they're always changing these things. This year I seem to be paying a flat fifty dollars per prescription. So for the syringes, I paid $50 and insurance paid $10.41; for the Novolin R I paid $50 and insurance paid $75.41; for the Lantus I paid $50 and insurance paid $146.39; for the test strips I paid $50 and insurance paid $342.02.
I'll probably be getting four shipments of syringes this year (maybe five, actually- my prescription isn't for enough syringes), four shipments of Novolin R, three shipments of Lantus (I am supposedly getting three month supplies, but they send me a box of five pens and each pen lasts a month), four of test strips. I have a stockpile of pen needles that will last me a year at the current rate of one per day, and I have enough lancets to last at least another year at my current rate of about one per day. I will probably be getting another glucagon this year. I pay for my testosterone without insurance. So that means that if I use the same meds this year as last year, my total cost, not including Dexcom or testosterone, should come to $800. That's affordable.
Without insurance, the costs for these things would be somewhat different anyhow, but at these rates:
the syringes cost $20.17/box and I'd use at least a box per month ~ $245 for the year
the Novolin R cost $62.70/vial and I'd use roughly eight per year ~ $501 for the year
the Lantus Solostars cost $39.27/pen, and I'd use one per month ~ $472 for the year
the test strips cost $49 per vial, and I'd use at least 24 per year ~ $1176 for the year
one glucagon kit is about 90
So without insurance, this lot would cost me ~ $2484, still doable, but not easily. Although of course if I really had no prescription insurance, I would be able to get everything except the test strips for free, so my costs would actually be just the $1176.
By the way, I've finally written up the November facts for this year and put them with last year's on a page you can view above the posts.
The Accu Chek Aviva Plus test strips are new to me, although I heard about them a few weeks ago- the person I heard about them from is in the UK where apparently they've been out for a while. They use a different blood sugar measuring technique, one that doesn't cause falsely elevated readings in people who have high blood levels of non-glucose sugars. I'm a bit concerned about whether this means that the strips will have a different level of accuracy overall as compared to the old strips. I may do a comparison run between strips at some point but not now. Here's a picture of the boxes:
It's always interesting to me to see what insurance asks me to pay, and what they pay, given that it's a new year and they're always changing these things. This year I seem to be paying a flat fifty dollars per prescription. So for the syringes, I paid $50 and insurance paid $10.41; for the Novolin R I paid $50 and insurance paid $75.41; for the Lantus I paid $50 and insurance paid $146.39; for the test strips I paid $50 and insurance paid $342.02.
I'll probably be getting four shipments of syringes this year (maybe five, actually- my prescription isn't for enough syringes), four shipments of Novolin R, three shipments of Lantus (I am supposedly getting three month supplies, but they send me a box of five pens and each pen lasts a month), four of test strips. I have a stockpile of pen needles that will last me a year at the current rate of one per day, and I have enough lancets to last at least another year at my current rate of about one per day. I will probably be getting another glucagon this year. I pay for my testosterone without insurance. So that means that if I use the same meds this year as last year, my total cost, not including Dexcom or testosterone, should come to $800. That's affordable.
Without insurance, the costs for these things would be somewhat different anyhow, but at these rates:
the syringes cost $20.17/box and I'd use at least a box per month ~ $245 for the year
the Novolin R cost $62.70/vial and I'd use roughly eight per year ~ $501 for the year
the Lantus Solostars cost $39.27/pen, and I'd use one per month ~ $472 for the year
the test strips cost $49 per vial, and I'd use at least 24 per year ~ $1176 for the year
one glucagon kit is about 90
So without insurance, this lot would cost me ~ $2484, still doable, but not easily. Although of course if I really had no prescription insurance, I would be able to get everything except the test strips for free, so my costs would actually be just the $1176.
By the way, I've finally written up the November facts for this year and put them with last year's on a page you can view above the posts.
Thursday, January 26, 2012
The False Premise Underlying Glycomark
The GlycoMark company is a joint venture which, according to its website, is "dedicated to the discovery and commercialization of novel biomarkers for diabetes."
So far it has marketed exactly one such biomarker, often called the GlycoMark test. It has been on the market for roughly twenty years but I've only known a couple of people who tell me their endos order the test regularly; mine never has. The test sort of interested me when I first heard about; you can test just the time spent high? Well, sort of. The wikipedia article on the GlycoMark test* (and the wikipedia article on the A1c test*) read like an ad for GlycoMark. I will summarize what they say.
According to these articles, there is a substance in the body that is excreted when the body excretes sugar, which is at 180 mg/dl. Therefore, people who spend much time with blood sugar have lower levels of this substance (1,5 AG). Therefore, the Glycomark test can tell you if a person's A1c of, say, 6% is because the person had near constant blood sugars between 110 and 170, or if the person's 6% represents blood sugars bouncing between 60 and 320. A Glycomark score in the normal range means the person has blood sugars below 180 almost all of the time, and progressively lower glycomark scores mean more and more time above below 180.
The Glycomark website hints at the problem with this interpretation of the GlycoMark. First of all, if the glycomark score declines with time spent over the renal threshhold, great. But to say that the renal threshhold is "usually >180 mg/dL" is disingenous. Yes, the renal threshhold is often above 180 (although a renal threshhold of 160, say, would not be unusual). But the renal threshhold can also be above 280. And there's TREMENDOUS variation in renal threshhold, between individuals, and even in the same individual at different times.
A secondary and less problematic issue is that the glycomark depends on something which has a wide normal range to begin with. Two nondiabetics could have significantly different glycomark scores.
And while knowing whether or not your blood sugar has been above your renal threshhold MIGHT be important (there's some evidence that kidney damage happens at that threshhold), you can find that out by testing your urine for sugar. I bought 100 urine sugar test strips last year for $15. One glycomark blood test costs, online, $53. Rough choice? I don't think so.
*As accessed today, Jan 26, 2012.
So far it has marketed exactly one such biomarker, often called the GlycoMark test. It has been on the market for roughly twenty years but I've only known a couple of people who tell me their endos order the test regularly; mine never has. The test sort of interested me when I first heard about; you can test just the time spent high? Well, sort of. The wikipedia article on the GlycoMark test* (and the wikipedia article on the A1c test*) read like an ad for GlycoMark. I will summarize what they say.
According to these articles, there is a substance in the body that is excreted when the body excretes sugar, which is at 180 mg/dl. Therefore, people who spend much time with blood sugar have lower levels of this substance (1,5 AG). Therefore, the Glycomark test can tell you if a person's A1c of, say, 6% is because the person had near constant blood sugars between 110 and 170, or if the person's 6% represents blood sugars bouncing between 60 and 320. A Glycomark score in the normal range means the person has blood sugars below 180 almost all of the time, and progressively lower glycomark scores mean more and more time above below 180.
The Glycomark website hints at the problem with this interpretation of the GlycoMark. First of all, if the glycomark score declines with time spent over the renal threshhold, great. But to say that the renal threshhold is "usually >180 mg/dL" is disingenous. Yes, the renal threshhold is often above 180 (although a renal threshhold of 160, say, would not be unusual). But the renal threshhold can also be above 280. And there's TREMENDOUS variation in renal threshhold, between individuals, and even in the same individual at different times.
A secondary and less problematic issue is that the glycomark depends on something which has a wide normal range to begin with. Two nondiabetics could have significantly different glycomark scores.
And while knowing whether or not your blood sugar has been above your renal threshhold MIGHT be important (there's some evidence that kidney damage happens at that threshhold), you can find that out by testing your urine for sugar. I bought 100 urine sugar test strips last year for $15. One glycomark blood test costs, online, $53. Rough choice? I don't think so.
*As accessed today, Jan 26, 2012.
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