Does your doctor have a clue?
Gonna rant now, your choice to read or ignore me :-)
In July, I was dx'd T2. My A1c was 6.8 and I failed the fasting glucose test pretty badly. My fasting numbers were 100-120, but my life being a total wreck, had me eating nothing but junk food, which was really comfort food for a depressed man. Still, I felt lucky that 6.8 was not so bad, and maybe it was caught early.
So, I buckled up, and dropped all the junk food instantly, and haven't looked back. Only thing I have had to drink since that day in early July is water. No candy, cookies, ice cream, pasta, bread, etc as I was determined to see how far I could move my A1c. After three months, and my very best effort, along with a whole lot of reading, and testing, testing testing, lost 21 pounds, and A1c is 5.5. Morning numbers are low 80's, sometimes high 70's. No meds, just diet and exercise.
Now, this made me feel good, but I also don't think I can maintain it because of circumstances in my life, not that I am going to go back up into the 6's. I was depressed before the diabetes came to light, and all the changes haven't really done much for that problem, but one thing at a time.
Here is the rub. My doctor was very pleased, and as we talked, he acted like I was cured, which is silly
I asked him if there was a way to tell if a person was insulin resistant, or simply not making enough, and he said no, but that based on my 5.5, I am making plenty of insulin.
I thought that a kind of stupid observation, since I have been so low carb for three+ months, my body isn't necessarily making a lot of insulin.....
Originally, I had to fight him to get enough strips to test four times a day, and with careful planning, I tested just about everything I ate in order to find foods that wouldn't spike me. I found food I could eat safely, and that was all I ate for the three months, over, and over, and over. No restaurants, no untested foods, just the same boring rabbit food for the most part. The testing was incessant. When I was hungry, I would test my BG and see if I had "room" for any carbs, and often noted I should not eat or I would go above 140, which is my ceiling, in my mind.
So anyway, my doctor said he was going to cut my strips down to one a day. He said someone with an A1c like mine, should only have to test a few times a week, so it was like he was doing me a favor to give me one a day. I fought him about as hard as I thought I should, since at my age, I am due for some uncomfortable, embarrassing tests, and I really don't want my doctor mad at me :-) I have a psuedo insurance that doesn't give me any choice of physician beyond him, so it was a mild fight. He said he would leave me with four a day, but if January showed an A1c like this 5.5, he would basically cut me off of the strips.
What does it take to convince someone that the reason I am 5.5 is from testing and testing and testing? He thinks its a waste of money, and this healthcare crap in DC seems to have trickled down into the clinic and all the doctors. I told him I think all the testing now, would help me avoid meds and even insulin down the road, and without the testing, I would end up with higher numbers, and then a real need for test strips, and major health issues.
I guess after January, I will have to go and buy my own strips. Ouch! but by the same token, if my A1c is still down, or even better, I may just buy my strips, and do the home A1c tests, and forget about my doctor. Its wrong to have all this research and technology at our fingertips (pun intended ) and not be able to use it to keep ourselves healthy unless we are willing to spend $100 a month on strips. I don't want free medical care, but I do wish doctors, especially GP's would realize that they cannot know everything, and that many of us use the information available to us to treat and control our diseases, and all we need from them, is the allowance to use the tools our insurance is willing to pay for. He kept saying the insurance company would eventually come after him because of my 5.5, but when I called them, they said they routinely allow up to 200 per month, for anyone diagnosed as diabetic.
So, I am kind of upset, and frustrated, and backsliding a bit because of it. On the other hand, I have lost over 20 pounds, and feel better from having kicked up my exercise routines. Still, not all the problems with healthcare are listed in the 2000 pages of "solution" we are being threatened with.
That's my story, and I am sticking to it :-) If you read this far, wow, you must really be bored lol!
John
In July, I was dx'd T2. My A1c was 6.8 and I failed the fasting glucose test pretty badly. My fasting numbers were 100-120, but my life being a total wreck, had me eating nothing but junk food, which was really comfort food for a depressed man. Still, I felt lucky that 6.8 was not so bad, and maybe it was caught early.
So, I buckled up, and dropped all the junk food instantly, and haven't looked back. Only thing I have had to drink since that day in early July is water. No candy, cookies, ice cream, pasta, bread, etc as I was determined to see how far I could move my A1c. After three months, and my very best effort, along with a whole lot of reading, and testing, testing testing, lost 21 pounds, and A1c is 5.5. Morning numbers are low 80's, sometimes high 70's. No meds, just diet and exercise.
Now, this made me feel good, but I also don't think I can maintain it because of circumstances in my life, not that I am going to go back up into the 6's. I was depressed before the diabetes came to light, and all the changes haven't really done much for that problem, but one thing at a time.
Here is the rub. My doctor was very pleased, and as we talked, he acted like I was cured, which is silly
I asked him if there was a way to tell if a person was insulin resistant, or simply not making enough, and he said no, but that based on my 5.5, I am making plenty of insulin.
I thought that a kind of stupid observation, since I have been so low carb for three+ months, my body isn't necessarily making a lot of insulin.....
Originally, I had to fight him to get enough strips to test four times a day, and with careful planning, I tested just about everything I ate in order to find foods that wouldn't spike me. I found food I could eat safely, and that was all I ate for the three months, over, and over, and over. No restaurants, no untested foods, just the same boring rabbit food for the most part. The testing was incessant. When I was hungry, I would test my BG and see if I had "room" for any carbs, and often noted I should not eat or I would go above 140, which is my ceiling, in my mind.
So anyway, my doctor said he was going to cut my strips down to one a day. He said someone with an A1c like mine, should only have to test a few times a week, so it was like he was doing me a favor to give me one a day. I fought him about as hard as I thought I should, since at my age, I am due for some uncomfortable, embarrassing tests, and I really don't want my doctor mad at me :-) I have a psuedo insurance that doesn't give me any choice of physician beyond him, so it was a mild fight. He said he would leave me with four a day, but if January showed an A1c like this 5.5, he would basically cut me off of the strips.
What does it take to convince someone that the reason I am 5.5 is from testing and testing and testing? He thinks its a waste of money, and this healthcare crap in DC seems to have trickled down into the clinic and all the doctors. I told him I think all the testing now, would help me avoid meds and even insulin down the road, and without the testing, I would end up with higher numbers, and then a real need for test strips, and major health issues.
I guess after January, I will have to go and buy my own strips. Ouch! but by the same token, if my A1c is still down, or even better, I may just buy my strips, and do the home A1c tests, and forget about my doctor. Its wrong to have all this research and technology at our fingertips (pun intended ) and not be able to use it to keep ourselves healthy unless we are willing to spend $100 a month on strips. I don't want free medical care, but I do wish doctors, especially GP's would realize that they cannot know everything, and that many of us use the information available to us to treat and control our diseases, and all we need from them, is the allowance to use the tools our insurance is willing to pay for. He kept saying the insurance company would eventually come after him because of my 5.5, but when I called them, they said they routinely allow up to 200 per month, for anyone diagnosed as diabetic.
So, I am kind of upset, and frustrated, and backsliding a bit because of it. On the other hand, I have lost over 20 pounds, and feel better from having kicked up my exercise routines. Still, not all the problems with healthcare are listed in the 2000 pages of "solution" we are being threatened with.
That's my story, and I am sticking to it :-) If you read this far, wow, you must really be bored lol!
John
Replies to This Discussion
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Permalink Reply by Kathy on
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My doc has no freakin' flippin' clue whatsoever. I just go to him to renew my prescriptions and get labs. I could cite endless examples but I need to go to bed and don't want to do so all riled up.
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Permalink Reply by Gerri on -
Hi John,
Not bored at all. Whenever I hear stories like yours, I see red. Utterly infuriating! You don't need more strips because you're doing well because of testing. Staggering logic there. Hey, get sick so you're eligible for more strips. We need D advocates to cut through this kind of crap.
Google free meters & get as many as you can. Or, contact the companies & ask for freebies. They all give away meters. Not great to use different brands, but they come with strips. Helps some. Home A1c tests aren't as accurate as lab tests, but I hear ya.
Any possibilty you can see an endo, or another doctor?
Oh please, the insurance company is going to come after him. What a weenie. Tell him that you're saving the insurance co money by staying off meds & can you trade this for strips:)
There's a test to see how much insulin you're producing. It's a C-peptide test, but clearly this wonderful doctor wouldn't order one since he believes strips are a luxury.
On a more positive note, awesome work taking control & achieving what you have! You have every right to be angry & frustrated, but revel in your wonderful success. You're strong, you're healthy, you're motivated.
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Permalink Reply by bsc on -
It is really frustrating. You hear about all the complaints of diabetic who are non-compliant and won't take care of themselves and then you come along and do wonderfully. What does the doctor do? Deny you access to the tools you need to do a good job of managing his diabetes. I feel for John. I've often felt the same way. My doctors have often told me to my face that as long as my HbA1c as like 7-8%, then I am doing fine and no further aggressive action is required. When I repeatedly work towards getting my HbA1c below 6% I get labelled obsessive and get a referral to a psychiatrist.
This diabetes, this is your condition. The doctor is your advisor. You already have the solution to this dilema in your hands. You can fire this doctor and look for another, or you can change your relationship with him. You were already told that you were allowed by insurance up to 200 test strips a month. Ask for a written preauthorization. And firmly request the strips. Call your insurance, ask for an advice nurse. Insurance would much prefer you prevent complications and many companies will actually advocate on your behalf. Obtain the insurance company policies on diabetes and quote them to the doctor. If your doctor becomes aware that you have involved the insurance company questioning his treatment, you will get more dilligent attention. No doctor wants to be flagged by an insurance company as providing less than appropriate care.
What really pisses me off in my dealings with Drs. is that it seems to get attention and action for more aggressive treatment I must demonstrate a loss of blood sugar control. If I wish to target my blood sugar control to be less than 6% because research says that reduces complications (and I already have complications) why can't the medical establishment get with the plan? Why do I have to be self destructive to get action?
I wish you luck with your battles.
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Permalink Reply by Dori S on -
John if you need a way to test but can't afford the $100+ a month for strips you might want to look into the Sidekick. It is available at Walmart, Walgreen's, and CVS. It is a container of 50 strips that has a meter built into the cap and runs about $20. You use the strips, toss the container and get a new one. You do need to remember to retrieve your data and record it. It isn't as convenient as other meters but is a more affordable alternative than not testing. I recommend it to all my patients that don't have insurance. Before I got my minis I used to keep one in my purse so that I always had access to a meter.
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Permalink Reply by Daniel Stamey on -
I also wanted to mention that I buy my own strips through healthwarehouse.com and my Accu-check Aviva strips are only $48 for two sets of 50. Normally, it would cost me $100 for 100 at Wal-mart. I am not even using my health insurance to help me pay for these because it costs me less to order online than to use my insurance and pay the higher prices.
My opinion is that we are all responsible for managing our disease no matter what our doctors may say. If you can take care of your supplies without using your insurance and getting prescriptions, you should do so. I am fortunate that my doctor supports my decisions on diet and testing and is thrilled with the results. I don't need him to give me a prescription for more strips because I buy them myself and pay a lot less.
Dan
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Permalink Reply by Dori S on
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Dan, I do the same. I found the last batch of test strips I bought online at amazon.
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Permalink Reply by Cara Bauer on -
First off, your doc works for you. If you want or need test strips, he should be providing some to you. I think there are probably other places you could get some at little or no cost, but I've actually never investigated this. My insurance covers them.
Good for you for really taking the bull by the horns with your health. Your doc should be bending over backwards for you since you're doing so well, and I know testing your blood sugar helps you keep tabs on whats going on. Is the guy selling the strips on the black market? He's full of crap about anyone coming after him about test strips. Companies are finally realizing being proactive about your health is what you need to do, not chase your tail afterwards.
Stick to your guns and demand the test strips. And continued good luck on how well you are doing with your diabetes. You're a great example of what can be done!
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Permalink Reply by Tim on
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First, before I play devil's advocate and probably anger a lot of people, I want to say congrats on improving your own health through changes that YOU have made. From your story, it sounds like almost all of your improvements have come from changes that you have made independent of any health-care practitioner.
And now the hard part...
The guidelines for BG testing for T2 diabetes are very confusing and not very standardized. In T1, because insulin is used to make quick adjustments in glucose trends, it makes sense for T1s to test frequently throughout the day. In T2 however, because of the nature of oral diabetes medication, there is less consistent support for multiple daily testing. Some evidence suggests that there may be no benefit to testing more than once per day (or multple times one day per week). Now that everyone is angry, here is the rationale. Please consider the following even if you disagree:
When someone (T1 or T2) is on MDI insulin and they test and they are hyperglycemic what do they do? They give themselves a bolus to bring their sugar back down. If I test and my sugar is trending too low, I can suspend my pump or decrease my basal.
When a T2 on oral meds (metformin + whatever second agent) tests their BG, there is no medication to adjust. So, the argument then is, "well, now I have the information and can change what ever I did/ate/didn't eat so next time my sugar is in control." I agree with this statement, but once you've learned the "pattern" is there any benefit to continue to test? Some experts (http://tr.im/EkW2) recommend testing one day per week, but 4 times during that day. This seems reasonable.
Ultimately, what you're doing seems to be controlling your sugar quite well. I think you may be incorrectly attributing your excellent control to BG testing, when you should be attributing your success to the fantastic changes that you've made in your life.
Test as often as you think you should, but be aware that there isn't a lot of evidence to suggest that it's useful in controlling your BG. If your A1C is at (below in your case) goal, what is the benefit of more frequent testing?
I know that there are MANY people who disagree with me. To those folks, please feel free to try and convince me that I'm wrong! I am open to any evidence.
Here are some links:
http://www.mayoclinic.com/health/blood-sugar/DA00007
http://www.bmj.com/cgi/content/full/bmj.39526.674873.BE
http://www.bmj.com/cgi/content/full/bmj.39534.571644.BE
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Permalink Reply by Terry Keelan on -
Fascinating. and informative.
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Permalink Reply by Anna Kiff (FatCatAnna) on -
Good post Tim - I agree with what you've said whole heartedly!
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Permalink Reply by John Brush on -
Wow, thanks for all the replies, comments, and suggestions. I appreciate the support and just having someplace to discuss all this. Gets kind of lonely wandering the house, talking to myself, even though I am wonderful, intelligent company :-)
Tim said:
"Test as often as you think you should, but be aware that there isn't a lot of evidence to suggest that it's useful in controlling your BG. If your A1C is at (below in your case) goal, what is the benefit of more frequent testing?
I know that there are MANY people who disagree with me. To those folks, please feel free to try and convince me that I'm wrong! I am open to any evidence."
I like your playing the devil's advocate, and I will accommodate you with my reasoning, using more details.
First of all, of course the actual act of testing won't do anything to control BG levels. My point/perspective is that reading is a tool, and I like tools. In order to explain, I will abbreviate my story so far with Diabetes, and it is not an argument directed at you. I just read all I wrote, and thought I better let you know that <.g>
First thing: what can I eat? My doctor and his nurse told me to just cut down a little on my portions, water down my juice, and only eat half as much "junk food" as I had been doing. They said I could eat an apple and not worry about it. My BS detector went off big time when I heard that.
Well, it didn't take long to read and research to find out that there is no standard answer to the question of diet. There is the general info about lower carbs, and the obvious things to avoid, but here I was with no medical support, and out doing this on my own.
My first step was no carbs, while I figured out what to do. Not a week into the, basically no carbs mode, and my fasting numbers plummeted, so I knew I wasn't completely broken, and felt like I could proceed with adding more foods. The goal was to find a day's food supply, that didn't spike my numbers past 140. How to find what that is? Test strips. How to use the test strips? Well, my doctor said I didn't need to test before I ate, only two hours after I finished. Baloney. If I don't know where I am when I start, how do I know how high the meal pushed my numbers?
So, it takes three strips to find a meal that works,and if I decide to alter that meal, three more strips, more than once to verify. Took about a week to come up with a day's worth, and that is what I ate for about a month. Booorrring. Water only. Salad, veggies, bacon, eggs, and walnuts or peanuts. Now that I have food to eat and won't die of starvation, its time to try other things.
I need chocolate!!!!! Instant, non fat chocolate pudding, with non fat milk. Very low carb, not too many calories, and light whipped topping only adds a few carbs. Test, test, test. This is what I found out. Jello brand jumps my numbers a whole lot (I don't have them memorized, they are in my journal) which bummed me out, but then I tried Walmart's brand, and even tho the numbers on the box, and the ingredients are almost identical, the wally mart pudding barely touches my numbers, as in less than 10 pts. Without the strips to test and test, I would not have found that out.. Good tools.
Some folks suggested dark chocolate, and gave me the brand. I tried it, and rang the bell on the old meter. So, some can, and some can't. If I just assumed, I would be eating a small piece of that chocolate every day or so, and my A1c would begin to rise. To not be able to test and verify, locks a person into a set menu, and any variation can be disastrous.
Then I read about how some people have trouble in the morning with carbs, so I started testing in that direction. It was a suprise to me to find out that a meal which normally bumps my numbers about 25 pts in the evening, sent me soaring in the AM almost 80 pts. Without testing, I would have naively assumed I could eat the same foods, any time of the day. Now I only eat bacon and eggs, and alternate with salads in the morning. Without that knowledge, my A1c would have taken a hit over time.
Three months later, A1c maybe jumped back up to 6, and I would have no idea which foods did me in, and what to do about it, and would have to go back to the original, boring, and bland same menu every day, for the rest of my life. hardly a reasonable option, if you ask me. Life is for living, and I don't have to eat out every night, or eat junk food to be happy, but I like to have options that are pleasing to my pallet and make me feel satisfied. Without always testing, I cannot have that.
We are all different, but I am better off exercising after I eat, while others I know, work out, then eat. How did I find that out? Test, test, test. Now the next question, should I exercise in the AM, afternoon, or at night? Test, test, test, and I have learned what works best for me. What is best for my fasting numbers, regarding snacks, and working out in the evening? Test, test, test. Will those results always apply throughout the rest of my life, or do I have to check now and again to make sure I am not progressing quickly into worse condition? I think that is what the strips are for.
Sometimes, I don't eat, which for me doesn't seem to present a problem (although its a bad idea for anyone) with going low or anything, at least not yet, but other times, I really want to eat, but I am not sure if I can, so, I test, and if my numbers are down around fasting, or the 80's, I will eat a bit more than I might otherwise. No strips, no way to tell. Sometimes, I want a granola bar, and if I test and I am good, I will have it, other times, my BG is up still, so I stay away. If I am ambivalent about dinner, I test, and good numbers will allow me to have one kind of meal, and higher numbers will dictate that I have a salad. That is how I got from 6.8, to 5.5 in three months. If I was testing once a day, or four times a day once a week, I don't think that 6.8 would have moved very much.
Now that I did my three months of boot camp doing just the basics, and essentially the same foods over and over, I have to expand my options or go insane. For three months, I never ate anything but food at home. How on earth can I go out to eat (I do get a date every now and then
Two days ago, I went to lunch at what was my favorite food court that has the greatest baked ziti on earth. Pasta is bad, by all accounts, but I gave it a shot. These numbers I recall. I was 90 when I sat down to eat. I didn't have the garlic bread, and drank plain old water. An hour later, I was 110, two hours 100, and three hours 85. Who said pasta was bad for me? Most is, but this particular recipe/ingredients, seemed to agree with me.
Its very important to me because now I have a place where I can occasionally go out for lunch and have something that I really enjoy. I have to do it a few more times with the testing to be sure I am good, but it really gives me a boost emotionally to know I can have it.
My friend always stops at Wendy's, so I have to test, test, test, and have found what I can, and cannot eat there. No buns, just naked burgers, or chicken sandwiches, chicken nuggets, and even the chili are okay. If I didn't have the ability to test, I would either have to stay away, or I would be destroying my A1c number eating things I think I can have, but that I cannot.
The list of foods I can eat that many other T2's have to avoid is pretty long, and I am sure, vice versa applies.
Test strips help me emotionally, as well as physically. I know I am not hurting myself, and that matters. We all know how devastating the diagnosis was, and the fear and anger that follows as we have to give up so many foods that we like. Well, what if my testing strips show me that I can eat someone's brand of Pizza (which is what they call that crap here in Utah ) That makes a difference in my life, and my overall attitude.
So much of life is wrapped around eating. Its an amazingly huge portion of our social life as most here will attest.
Strips are like crutches. You could walk on a broken ankle without them, but it hurts, and the ankle will heal faster and more completely, if you use the crutch.
If I am cursed to live long enough (I am 54) I assume this disease will continue to debilitate my system, and cause problems in spite of my greatest efforts. If I live ten more years, and can't eat anything new because I cannot be sure its okay with my system, that will be ten awful years. If I can test new foods to keep things "fresh" then there is a good chance, I won't need insulin, and maybe not even meds. Without the vigilance, I could end up on insulin, testing 8 times a day. It seems stupid not to be able to test whenever I need to, now, rather than having to test even if I don't want to, ten years from now. The idea of healthcare is to avoid the illness and its consequences, not just roll along, hoping for the best, knowing that if things do fall apart, there is always insulin and constant test strip usage.
I use a scale to track my weight loss, because frankly, I don't see where the 20+ pounds came from, but they are gone. If I didn't have the scale, I would not know if I am losing weight or not. If I cannot test my BG, I do not know if I am spiking too high, and screwing up my A1c.
If the ultimate goal is the lowest A1c possible, then testing randomly, four times a day once a week, is a complete waste of time and money. The only time my numbers will move, is when I take in food, and that is when I need to test. If Walmart discontinues their non-fat pudding or I move away from access to walmart (which I think may be impossible to do lol!) then I have to do the testing all over again, including time of day, and relative to exercise. Walmart also sells wheat tortillas that are 8 carbs. Saved me for sure because I can't eat a sandwich based on big chunks of lettuce, and bread sends me soaring. These tortillas are fine with me. Of course, if they disappear, or I can no longer find a store that sells them, I am hosed if I cannot do all the testing with whatever I decide to use instead.
So many variables that there is no way to keep A1c at its min, without testing, and monitoring daily, imo.
Some others commented, but I am locked into this doctor because of the kind of insurance I have, and there is no coverage for any support, or dietician. I am out of work, and cannot afford to go to any other doctor or professional, and so I do what I can while I can.
That was way too long :-) but I figured I would explain, and see if it makes sense to anyone. To just prescribe the strips, and not use them, is indeed a waste. However, if they keep my spirits up because I know I am doing well, and they help keep my kidneys, eyes, and other organs working into my older years, it seems a small investment, as I assume insulin and meds would cost a whole lot more than the strips I use in the manner I use them. Looks expensive short term, but seems like an investment in the future, to me.
Whew......I am all out of words, and that doesn't happy very often
Thanks to all who read and wrote and commented.
John
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Permalink Reply by Paul Curwen on -
Wow,
Excellent post John...
I was diagnosed just over 2 months ago so I'm just getting used to all of this. I have started a log and I'm testing myself before, 1 hour after and 2 hours after everything I eat. I am finding out exactly what spikes my numbers and so far breakfast seems to be my worst meal (I love cereal but I'm having to give that up)...
I know testing is helping me because I am now getting comfortable choosing foods/meals that are not going to spike my numbers.
Thanks again for your post!!!! Paul
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