SleepGuide
Diabetes and Sleep Apnea
Sleep Apneacs living with diabetes or pre-diabetes. The journey with Sleep Apnea and Diabetes can be very similar. And the links between the disorders are proven. Join us and share your experiences.
My Story: the Beginning of my Journey with Diabetes
It's funny, but I find that the way I'm coming around to a diagnosis of Diabetes is almost the same as the way I came to a diagnosis of OSA -- fighting an uphill battle against doctors, physicians assistants and other so-called professionals to get the care and attention I so desperately need, but which is not in their interest to provide. Let me explain.
I asked my Primary Care doc to run up blood work because I've been gaining weight lately and knew from previous tests that my fasting blood glucose level was creeping upward (it had once been 105 and the normal was <100). When the results came back, a physician's assistant called and said only that my Vitamin D level was too low. No mention of the fasting blood glucose level, which was the purpose of the test. When I questioned her about it specifically, she said that it was 117, which was a "little high, but nothing to be concerned about." I asked for the normal range, and she got defensive and asked why i wanted to know: did i have a family history of diabetes? When she relented and gave me the normal range (<100), I asked to take the Glucose Tolerance Test, which i understand to be the gold standard of diabetes tests. She said that she "didn't think the doctor would go for it," because I didn't have a fasting glucose level that reached the threshold for diabetes --- only "pre-diabetes." But she said she would check with the doctor and get back to me. She didn't call me for a couple days, and when she did, she got my voicemail and instead of leaving a substantive message, told me just to call back. I called back immediately, but she had left for the day, and I left her voicemail. I then spent the next 3 days trying to get her on the phone, without her returning any of my calls.
So without any professional assistance, I turned to the internet and found out that a FGL of 117 was cause for concern and that diabetes is on a continuum of severity and that the determination of when to declare someone "diabetic" is a political decision motivated by powerful special interests, and has very little to do with good medicine. So it would be wise to test my blood sugar levels with a blood glucose monitor to determine how different types of food and different times of the day effect my blood sugar levels. I went to the pharmacy without any clue what to get other than i needed a blood glucose monitor. Without any real education on this stuff, I chose a colorful one that looked pretty cool -- the One Touch ultra mini -- then learned from looking on the shelves of the pharmacy that i would also need to buy lancets and testing strips. When i got to the counter to pay, the pharmacist discouraged me from buying it without checking first whether my insurance covered it. Foolishly, I allowed him to persuade me to walk away and go another day without doing what I needed to do. The next day, when i still couldn't get in touch with my doctor to even discuss the test results let alone whether I could get a prescription for the supplies, I came to my senses and went in and just paid out of pocket. For about $100, I was able to start taking control of my life and not get caught up in the health "care" system's way of doing things: to dawdle and delay while things aren't catastrophically bad so that you wait until the sh*t really hits the fan with your health and of course then it's easy to get a prescription for whatever you need... only problem is you lose a leg/ some nerve endings by that time. No matter. It's not the doctor's leg. And this time he gets to chop off a leg instead of answer a ton of questions about prevention! Higher billing code. And more fun for the doctor to boot! (no pun intended)
So . . . I got home with the blood glucose monitoring supplies and read the instruction packets that came with the supplies word-for-word as I tried to figure out how to prick my finger properly and collect this sample in the right way for testing. I supplemented my read of the instruction packet with some internet searches and voila: after sticking myself about half a dozen times in the wrong way, I got a decent sample and started collecting data on what was going on in my body. I've been doing that for the past week. I even found an app on the iphone/ internet site -- Glucose Buddy -- that helps me log my blood test results and graph them out in a way that helps me make sense of it all.
Still, I am very much in the dark and don't know what I'm doing. I understand there are Diabetes "Educators" out there who would probably walk me through all of this along with the rest of a good diabetes team: which i believe consists of an endo and a nutritionist as well. I set up an appointment with my PCP tomorrow to walk through the results of my bloodwork and to "fire" him and tell him why: because of his and his staff's lack of interest in giving me the most important information about my health, and worse still, trying to lull me into a false sense of security by telling me I have nothing to worry about.
My next step is to find a primary care doctor who specializes in diabetes/ who is an endo too. Then maybe i'll feel a little more secure about what I'm doing on my own.
In the meantime, I'm cutting out carbs and hitting the gym at least 4 times a week. I'm determined to get control of this before it gets any worse. I plan to post about my experiences in the new SleepGuide group I created for those here who also are living with Diabetes (or pre-diabetes): http://www.sleepguide.com/group/DiabetesSleepApnea -- please join me there if you are interested in this subject.
With Sleep Apnea, i let the system have its way a little bit with me -- I had a cheap, stripped down CPAP drop shipped to me which I put aside after a day and never used and waited for the "professionals" to come to my rescue before I found out about the choices of all sorts of machines that were available and took control myself. This time, with Diabetes, I'm on to the health care game. I know the rules and how the game is played. Should be interesting to see what happens . . .
Mark
Friedman Diabetes Institute on the 8th Floor of Beth Israel Medical Center has a good team of nurse educators, dieticians, etc and are flexible/accommodating of lack of insurance coverage. http://www.friedmandiabetesinstitute.com/
As for PCPs who are endos, in my 21 years of being type-1 diabetic, it's a rare thing to encounter. My experience has been that most of the endos are specialists and are not interested in the additional duties of a PCP. Also, non-endo PCPs who claim to be able to manage diabetes is often a bad choice for the patient from my experience and what friends have experienced. There is just too much to specialize in diabetes for a PCP to keep up with or more importantly, have the experience with. I can recommend an endocrinologist if you still need one.
As for 'diet' books, I don't believe in fad diets. However I do enjoy reading up on different perspectives from various diets and programs to help make lifestyle changes and better choices. The Paleo Diet is one book I'm reading now and seems to explain bad carbs well. I don't like the writing style of the author though, a lot of dramatic filler to get a point across and maybe some manipulative fact presentation to achieve some. I can pass it on to you at the next cpap meeting if you're interested.
You're on great start by keeping physically active at the gym and being mindful of carbs.
I work in the health insurance industry and am personally fascinated with health care delivery. It's sad you experienced what you did with your fasting glucose results and cpap drop shipment. I'm happy to help with any questions/insights/experience/conspiracy theories if I can :-p The OneTouch is a good meter, I use that one also. It is among the ones that are most accurate. You could seek reimbursement from your insurance carrier by mailing a paper claim with receipts for the meter and supplies without bothering with getting a doctor's prescription.
Thanks for the great website and organizing the cpap group meetings! It's been great to hear from other cpap users experiences online at the meetings.
Take care,
Mark
Dec 8, 2010
Mike
Hey there Mark -- this is all great information -- thank you for taking the time to provide me with so much help. I can't place your face with your name, if we've met at the AWAKE meetings. You should come up and introduce yourself at the next meeting. I'd love to chat with you about this stuff. By the way, I will take you up on your offer of a recommendation to a good endo.
Mike
Mark said:
Dec 16, 2010
RL
Hi Mike,
I was just wondering how the GL testing was going. I have more I want to add, but will have to do it later on, as it has gotten late, and I'm working on keeping a reasonable sleep time. I like what Rooster and Mark added here, and there is much more that can be discussed in this group. I believe as time goes on, that will be apparent to many more SG visitors and members. For now, though, I'll have to leave all my thoughts spinning around in my head. I'll be back soon to share more thoughts.
Feb 10, 2011