June 28, 2013
Experts versus those that live with diabetes, how I dislike saying this, but it is down to this and this is the shame. Our so-called “experts” at the American Diabetes Association (ADA), the American Association of Clinical Endocrinologists (AACE), and supporting organizations and prestigious diabetes clinics all believe that patients with type 2 diabetes and not on insulin do not need to self-monitor blood glucose levels that frequently or not at all. Many feel that a quarterly A1c test should be sufficient.
To the above, add primary care physicians and other doctors that do not stay current with the latest information about diabetes, and it is the patients who are left without any guidance, or education on managing their diabetes. Yet, these “experts” could care less and discourage us from learning about self-monitoring of blood glucose because they don't think this would help us. Therefore, is was with great surprise and then appreciation that Amy Tenderich (Founder and Editor, plus a person with type 1 diabetes) of DiabetesMine was able to have a study printed in Diabetes Spectrum of the ADA website. I would strongly urge every person with type 2 diabetes to read the PDF version of her study which can be downloaded by clicking on this link, Use of Self Glucose Monitors Among Type 2 PWDs: Patient Perspectives . I repeat, the study is worth your time reading it and it may give you the boost to consider how you use your meter.
I was even more surprised that a CDE had asked her to do the study. Then the ADA published it as an editorial rather than a study or report. I can only guess that those in power did not appreciate learning what they found in the study. The ADA is not patient friendly.
The important part of Amy's work is that it reflects what the patients think and know compared to what the researchers normally look for and exclude from studies. This blog of mine shows how researchers set up a study to reflect the answer they desire. This is another reason to believe Dr. William Polonsky from the Diabetes Behavioral Institute in his presentation to the ADA that I discuss in my blog link above. It has a link to a PDF file and his points to the ADA.
I do not know who titled her work, but they use the wrong term. Normally those who know better use the term meter because very few people with type 2 diabetes use a continuous glucose monitor (CGM) which is generally considered a type 1 instrument or tool for them. There is a great difference in cost as well. Some doctors and diabetes clinics give out meters and some receive a prescription for them which insurance will reimburse. People with type 2 diabetes are seldom able to obtain a CGM as their insurance will not cover it. Those that have the big dollars can purchase them, but even then, many find the meter easier to use.
Education is clearly the key to success with how to use the meter, when to test, and how to compensate when a reading is high or too low. Many were self-taught by reading and research on the internet, often on diabetes forums or other social media. I remember having a class on using the meter, but not when to test and how to interpret the readings. I was fortunate to find the series of blogs by Alan Shanley which can be found here. Then down the right side is a search box and type in the word “test.” This will bring up many blogs worth reading.
I am a member of the site where the survey was taken, but because I am very inactive there, I did not see the survey or questions. I am a person with type 2 diabetes, but I am on insulin. I have had questions about why I advocate for testing supplies and I can only say that I believe that testing is the only way correctly to manage diabetes. Understanding how foods affect your body and other variables that come into play will really assist you in preventing the onset of complications.
Diabetes does not need to be a progressive disease and self-monitoring of blood glucose (SMBG) is the only way I know of to manage diabetes and prevent progression to complications. Education is the key and learning what the readings on your meter mean to you when comparing them to your food log and health log is the only way to know what the food you have consumed is doing to your body.
Three schools of thought about the value of home glucose testing among type 2s on page 2 of the PDF have two people from the Joslin Diabetes Center at polar opposites. Dr. Richard Jackson, senior endocrinologist and researcher at Joslin Diabetes Center in Boston feels that an A1C value every three months can provide sufficiently useful information. Nora Saul, certified diabetes educator and 20-year licensed dietitian at Joslin Diabetes Center in Boston agrees that SMBG is under-utilized for gathering information about how patient’s blood glucose responds to different types and amounts of food – especially for judging the effects of high-carb food choices/ diets. Not only is Nora Saul making good statements, she is not following the line of the Academy for Nutrition and Dietetics, which discourages testing to learn what food does to the patient's body, but I wonder how she gets along with Dr. Jackson.
Amy did get three good views about SMBG, and Nora Saul and David Mendosa are both saying things I can agree with. Dr. Anne Peters and Dr. William Polonsky are agreeing that education is a missing factor of knowing what the meter readings mean and they are not being motivated. Apparently, the motivation to prevent the progression to the diabetes complications is sadly missing. With the exception of Dr. Richard Jackson, who must be on some medication that addles his brain, the rest understand the importance of SMBG.
June 27, 2013
If you are in the elderly group like I am and over the age of 64, you are being discriminated against. Yes, and this is because of our age and for other reasons. This arbitrary age distinction is made to avoid the elderly that may have more than one chronic disease and have other medical problems. I will quote my blog here which did include ages up to 75.
“One statement that seems to sum up how researchers feel about the elderly is this. Finally, we did not recruit adults aged 76 years and greater because these individuals may present with unique clinical (e.g., comorbidity, complications) and functional (e.g., impairment, disability) challenges that require special attention. For example, older diabetes patients are at greater risk for several geriatric syndromes, including depression, cognitive impairment, injurious falls, neuropathic pain, and urinary incontinence. These syndromes can have a deleterious effect on diabetes self-care, health status, and quality of life. Thus, the value of group versus individual diabetes education needs to be evaluated in the age 76 and up population. Importantly, future diabetes behavioral interventions need to address changes in older adult functional, cognitive, and psychosocial states and how best to assess and address these factors.”
This is still very discriminatory and shows why most researchers will not include them in most studies. Fortunately, this study was positive for showing that the elderly can benefit from group education. However, even with this outcome, our understanding of geriatric diabetes is still not enhanced and we still need more research on geriatric diabetes. This is because over half of those with type 2 diabetes are over the age of 65.
A study in the Journal of the American Geriatrics Society shows that things are not changing and discrimination still prevails. This link will only take you to the abstract, but it still says a lot.
The information in this blog is important enough to quote. “The authors analyzed 440 protocols of ongoing studies of type 2 diabetes. The findings are very discouraging:
- 66% of studies excluded subjects using an arbitrary upper
age limit. Upper age limits are almost never justified. Even
when drugs are tested in mostly younger patients, they get heavily
marketed and used by older patients
- 77% of studies excluded subjects with comorbid
conditions--diseases in addition to diabetes. An acceptable
justification for exclusions based on comorbidity was provided less
than a 25% of the time. The vast majority of patients with diabetes
have comorbidity. It is crucial we learn how comorbidity impacts
the outcomes of treatment. Exclusions based on comorbidity often
makes the real world application of diabetes studies
- Regulatory agencies such as the FDA must develop clear
regulations that demand drugs will be tested in the patients that
actually will use them before they are allowed to be widely used
- Funders such as the NIH should stop turning a blind eye
towards ageism in clinical research
- Human subjects committees should avoid approving protocols
that needlessly exclude older subjects
- Older patients and those who care about them should insist
that research that improves their care is a major societal need”
In addition, since the elderly is the largest group being prescribed the diabetes drugs, we need the studies for treatment guidelines and to show how the different drugs impact the problems older persons care about such as functional impairment, cognitive function, falls, and incontinence. Researchers need to make changes in the procedures they use for studies and the above players need to step up and take responsibility.
June 26, 2013
As much as I rail against the American Diabetes Association (ADA) and their guidelines, it is still important to know what they are advocating. Their guidelines are not safe for managing type 2 diabetes and using their guidelines will generally allow for the progression of diabetes to the complications. The ADA guidelines will not allow you to be a long-term healthy survivor with a long-term A1c of 7%. Yet this is what they promote. Even the American Association of Clinical Endocrinologists (AACE) and their guideline of an A1c of 6.5% is not ideal.
Considering that the A1c range for prediabetes is a reading of 5.7% to 6.4%, it would be prudent to have an A1c reading of less than 5.5% or lower. This is the reason I do not follow the teachings of the ADA. They seem quite willing to allow and advocate for people to allow for the progression of diabetes. It is also true that the advice given is to prevent doctors from being sued because they encouraged patients to work to have A1c's that put their patients in jeopardy of hypoglycemia. It is also true that most physicians do not stay current with even these poor guidelines so the patient is the one that pays the price with poorer health and the complications of diabetes.
With the above in mind, I feel that since the AACE has chosen to eliminate the page of type 2 diabetes resources, that as a blogger, I should start listing some of the resources that people with type 2 diabetes can use to start educating themselves. I have used and still review the listings even though I am not following their guidelines, but I still have hope that someday, they may improve. I also feel that because many physicians use these and insist that their patients follow them, we need to know where they are obtaining their numbers they throw at us. Even the endocrinologists seem to become upset when you get A1c's that are below 6.5%.
Some of this I know is because of my age and the lack of research including people over the age of 65. Researchers love to discriminate against us and are literally afraid of people over the age of 65 because we may have multiple health problems and failing cognition. Yet we are asked to take medications for which no research has been tested as to how we handle the medications and whether the medication may increase our cognitive decline. Almost 100 percent of studies and trials exclude persons over the age of 65. Rarely, and I mean rarely will you find a study that includes people up to the age of 70 or 75. Even the Food and Drug Administration does not seem concerned that people in the age group that will be heavily prescribed the medication are the ones excluded from the trials.
The following is a starter list for beginning your education: (Note: I have not listed them in any particular order as each has its positives and negatives.)
#1. www.diabetes.org This is the home page for the American Diabetes Association.
#2. http://www.cdc.gov/diabetes Centers for Disease Control and Prevention (CDC)
I find this more helpful for living with diabetes, but still follows many of the tenets of the ADA.
#3. http://ndep.nih.gov National Diabetes Education Program (NDEP), This site is a partnership of the National Institutes of Health (NIH), the CDC, and over 200 public and private organizations.
#4. http://www.nlm.nih.gov/medlineplus/diabetes.html Medline Plus, This is presented by the National Library of Medicine, and features many links to other helpful resources.
#5. http://diabetes.niddk.nih.gov National Diabetes Information Clearinghouse, This is presented by the National Institutes of Health (NIH), the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). My go to page in this site is http://diabetes.niddk.nih.gov/dm/pubs/medicines_ez/index.aspx for the diabetes medications, both oral and insulin. See my blog here for other sites not on this list.
#6. http://www.everydayhealth.com/type2diabetes Everyday Health, This is generally an excellent site and at the same time a very aggravating site and pulling your cursor across the advertisements activates them and they are very intrusive and about the only way to avoid them is to restart the site and make sure that you keep the cursor away from them. It provides excellent news and information about diabetes and also provides links to MedPage Today’s trusted sister site.
One of the favorites on this site is this, http://www.everydayhealth.com/health- report/type-2-diabetes-control/why-your-type-2-diabetes-treatment-plan-is- unique.aspx
It talks about treatment being individualized and this is because each patient is unique. This is in conflict with the dogma of ADA which tries to make everything into a one-size- fits-all treatment plan.
#7. http://www.mayoclinic.com/health/diabetes/DS01121 The Mayo Clinic, and http://www.mayoclinic.com/health/diabetes/DS01121/TAB=expertblog
#8. http://blog.joslin.org/ The Joslin Diabetes Center Blog, and http://www.joslin.org/ The Joslin Diabetes Center
#9. http://www.medscape.com/resource/diabetes-type2 Medscape Today News, This requires a membership which is free to patients and the articles are often very interesting.
The above list is just a few of my sources that I enjoy reading. If you find them useful, you may wish to bookmark them to check them on a regular basis. Where the above sites have newsletters. I have subscribed to make sure I catch the latest news and research articles.
June 25, 2013
This is great news and I hope hospitals are paying attention. Two articles on the same topic – here and here. Again communication is the key and this is often lacking across hospital departments as they think (more like don't) the other department is on top of things. It is surprising what a little cooperation does for the health of patients with diabetes. If you, as the patient, have been allowed to manage your own diabetes, then this study will not benefit you.
This also brings up an idea for another study while thinking about studies. I would like to see a study where the patients that are capable, emphasis on capable, are allowed to manage their own diabetes while in the hospital. Some hospital kitchens are capable of providing a list of the foods on the tray and the carb count of each food item. This would allow those on oral medications to medicate accordingly and those patients on insulin would be able to inject appropriately. This study could be done in hospitals that have an endocrinology department with specialists in diabetes employed by the hospital or attached to the hospital. I dare say that the patients would be more satisfied and not under the stress normally felt when the blood glucose is allowed to run above 180 mg/dl to 220 mg/dl that most hospitals allow.
Back to the study. Dr. Dace Trence, who was not involved in the study, carefully pointed out, “Hospitals may be motivated to do so because they could face penalties from Medicare if they do not. Hyperglycemia in the hospital is now a [national hospital inpatient quality measure], so you can imagine how important it is to try not only to prevent hypoglycemia, but also hyperglycemia."
Considering Dr. Trence's statement adds value to this study and may make hospitals consider this necessary. Shwetha Mallikarjuna, MD, an endocrinology fellow at Southern Illinois University (SIU), Springfield, presented the study at the American Association of Clinical Endocrinologists 2013 Scientific & Clinical Congress in Phoenix.
Mallikarjuna did note that their study was limited by a low sample size and low power. She said the study was also limited by poor patient matching. She said that a larger follow-up study is ongoing.
I see a few positives from this study and the potential for good being part of the penalty system being put in place by the Centers for Medicare and Medicaid Services. How much this will benefit patients still is to be determined.
June 24, 2013
I may be a bit touchy about this topic, but time after time people leave much out of the discussion for people newly diagnosed with type 2 diabetes. I knew that people developed the anger and shock, denial, acceptance, and depression differently. This was a rude awakening when a friend discovered he had diabetes. His first reaction was depression and his wife called me to ask what to do. I called Tim and we went together to talk with them. While Tim talked with him, I talked with his wife which was a good thing as she felt he may be suicidal and was overly concerned for him.
I took the wife outside, made a phone call to a doctor, and explained what had happened. He advised us to bring him to the hospital about 30 miles distant if we could, or if we could not, he, the doctor, would make the call to the ambulance and prescribe a medication to help maintain control. He repeated this to her and she agreed and thanked the doctor. We went back inside and Tim was in the process of getting him dressed when his wife told Tim she wanted him taken to the hospital that the doctor and I had discussed. He was not resisting and his wife said she would drive if Tim would sit with him in the back seat. I could follow so Tim and I would have a way home. No problems were encountered on the way and the doctor was waiting at the emergency entrance with another doctor when we arrived. After he was admitted, his wife said he should be okay now and said she would call me later. She thanked Tim and me for coming so quickly.
Tim and I had a good conversation on the way home. Tim said he was happy that his wife had told me she thought he was suicidal and I had called. He was and Tim said he recognized a couple of things in talking with him that made him realize this as well. This had changed the way Tim talked to him and when we came back, he said what his wife said was reassuring and he knew I had done my part.
I commented that this was uncommon for people just diagnosed with diabetes and pointed out how unique each of us is and our reactions to a diagnosis. Tim agreed that most seem to start out with shock or anger and then may have denial. I said I was thinking about questions to ask his wife and see if we could figure out what may have triggered his depression. Tim asked when he received his diagnosis and I said yesterday afternoon. Tim let out a low whistle and said that was fast and we were fortunate to have found out so quickly. I said he was lucky as his wife has a sister with type 2 diabetes and so was ahead of the game when she recognized the depression in her husband. Her sister had a severe depression early on and several minor episodes later.
Tim said he had asked her if he should call anyone and she said that since the numbers were in her cell phone, she would as soon as she knew he was stable. I said they have two sons and daughter and he has a twin brother. I continued that I am not aware of any other family and that her sister was the only one prior with diabetes. Tim asked if diabetes was present in prior generations and I admitted I did not know.
Tim suggested that we make this a topic for a meeting and I agreed. I sent this to him when we returned home and we have exchanged several emails about what was missing and what should be added. We decided on the following points for a discussion when we come across newly diagnosed people with type 2 diabetes. First, we will print this out and cover it in a meeting. Possibly, we will add to this.
#1. Emphasize that diabetes is not your fault. This is often difficult for people to accept. Yes, you may have done something to trigger it earlier than you wanted, but eventually you would have developed diabetes.
#2. Teach people that the past is the past, and to live for today. Here again some people have a difficult time with this because they want to continue the life they had been living.
#3. Discuss the four general stages that happen after diagnosis. We have covered the depression above, but like we stated, many people often have shock and/or anger before anything else. Denial can happen at any time and even a few years later or even several times. Also, acceptance can happen anytime. For a more detailed discussion read my blog here.
#4. Educate yourself – the doctor does not live with you 24/7. Unless you have an extremely knowledgeable and up-to-date doctor, learn for yourself. Most doctors are unable to stay current and learning about diabetes is research intensive. You know your body better than anyone else. This will assist you in learning.
#5. Learn to be your own lab rat in your scientific experiments. Yes, you can and while the article linked above does say it differently, you need to spend time learning what the blood glucose meter readings mean to you. Eating to what your meter tells you is a good guideline to help you learn about the foods you consume, whether you are eating too large a serving, or if you need to eliminate that food or combination of foods from your meal plan. Other variables such as stress, illness, and for women, the normal monthly cycle can affect the blood glucose levels.
#6. Learn about the new technology, it may be good for you. Do not, I repeat, do not run out and buy a new technology until you have done your homework and determined that the new tool or device will greatly assist in your diabetes management.
#7. Learn to avoid snake oil sales and their tricks. Just because someone says they are cured, do not believe them. Some will be promoting what they term a natural product that has cured them and you are a fool to believe them. The saying that a fool and his money are soon parted is a truth here. Many people are able to manage their diabetes and get off of medications. This is generally what these people have done and they see an opportunity to make money off other people looking for a quick cure. The battle for control of diabetes is not a sometime thing, but is a must for the remainder of your life. Return to old habits and diabetes will return with a vengeance. As of yet, there is not a cure.
#8. Gain confidence in your abilities. This will take patience and dedication, but it is worth the effort. Like the little engine that could, he kept repeating, “I think I can” until he did it. We are all capable, and need to develop this inner strength for the battle ahead.
#9. Develop good habits. Whether this means eating at regular times and taking your medications when you should, if you develop good habits now, later during hopefully periods of minor depression, these good habits can help you get through them without doing severe damage to your diabetes management. This has been what helped me and was what got me through a diabetes burnout period
#10. Develop a positive attitude. This will also be something that can assist you through minor depression and a period of diabetes burnout. So number 9 and 10 can go hand-in-hand. This is a question I am asked – is it okay to become angry? I say, yes, as long as you do not let it get out of control and cause more problems. We all have experiences when a person that does not understand diabetes makes an absurd comment that can be very hurtful. I have learned to ignore these and walk away from the person. One person would not let it drop and I finally was forced to confront the person. I told this person that when she had diabetes, she would understand how wrong she was. Even then she would not stop and I finally just left the function to get away. I detested this person for forcing me to leave an event celebrating a birthday of a friend. Fortunately, my friend knew why I left.
#11. Time is on your side; please don't rush into new things. Unless you are confident that what you are doing is correct, take time to do your homework and verify that what you desire is indeed correct. Some things are best talked over with your doctor, and at other times reading on the internet can be helpful.
#12. Stay away from the panic panel. I had one person laugh at me when I told him this, but he had just been diagnosed and was in a panic. He could not deny this and we ended up talking for about two hours. I told him that he would forget most of our conversation, but to ask me questions in a few days and I would repeat much of it. He surprised me by remembering most of it and telling me that my panic panel solution was the key for him in remembering.
#13. Stay away from diabetic cookbooks. I made this mistake and learned the hard way, so please don't do this. Most recipes are loaded with carbohydrates and may contain ingredients that can be very difficult to find. In addition, many recipes are not foods we normally eat.
#14. Don't let a doctor set your goals, but accept guidance. If your doctor automatically sets goals for you, be polite and ask the doctor when the education class starts. If he/she says there are no classes, then ask why he is setting your goals. With you best diplomacy, tell the doctor you will do a lot of reading and set your own goals when you understand what reasonable goals are. Most doctors will accept this and then suggest goals on a temporary basis which may be achievable. An elderly sister of a family that I know very well was recently diagnosed and the doctor told her to achieve a goal of 8.0%. She asked what level she had been diagnosed at and was told 7.8%. According to her sister, she reached over and slapped the doctor and told him to wake up. She said that if she could not get under 7.0%, they had better start digging her grave. She did not return to this doctor and her next A1c was 6.7%. And this was without medications, just a strict meal plan and exercise.
#15. Learn to make the needed lifestyle changes. Read my blog here if you need a list of lifestyle changes. You will need to add weight loss, as I left that off at that time. Some may not need to be changed such as stop smoking if you don't smoke. Others may need just some fine tuning, but each person is different.
#16. Discover what works for you, as you are unique. No, I did not say what works for a friend or a relative. What works for them, may not work for you. You may be close to what works for a relative, but generally you will be different in some aspect and then what do you do? No, you can't blame them because I have told you what they have found works for them may not be exactly what you are capable of accomplishing under similar circumstances. This is one thing our group has learned and we each have our own uniqueness and are happy to find out what works for us as individuals.
#17. Diabetes is only progressive if you do not manage your diabetes. Unfortunately, because of the numbers of people that do not manage their diabetes, this is one myth that will not go away. For these people, they develop the complications and say that it is progressive; and it is for them because they are not and have not managed their diabetes. Those that manage their diabetes often live long and normal lives and die of old age before complications become a factor. This means maintaining A1c's near or as close to normal as possible. Some even halt the progression for decades or many years.
#18. Learn the difference between good guidelines and the guidelines of the American Diabetes Association (ADA) and other diabetes groups that adhere to the ADA way of doing things. Yes, there are guidelines that are developed by patients, but they receive no publication or acknowledgment. There is one person that has published reasonable guidelines in some areas, but not all areas and it may be worth your time to read them. Much of it can be read here. Another good way to learn is to read blogs by David Mendosa at his website and here on Health Central. Also read blogs by Gretchen Becker at Health Central. Alan Shanley has some great guides in his blogs before 2012 and even if he is from Australia, they are full of good common sense. Tom Ross is also a great blogger and you need to explore his site.