Diabetes Tests, What Is Wrong?

The American Society for Clinical Pathology (ASCP) is going after doctors and endocrinologists while not pointing the fingers totally at themselves. Labs are not always giving the proper ranges of what the test results mean, especially in the area of HbA1c. There is plenty of room for criticism on both sides, but for one profession to point the finger at another profession seems like the wrong way to get cooperation.


Although I don't think that the HbA1c test should be a monthly test, if the Society of General Internal Medicine (SGIM) holds to their “Choosing Wisely” tactics, then I think that the HbA1c tests should become mandatory on a monthly basis. Some people with extremely well-managed type 2 diabetes are currently using the home HbA1c tests on a monthly basis and very seldom see a doctor. Read this blog on Health Central by David Mendosa about the fate of our home HbA1c test. And, to see why I would recommend monthly HbA1c tests if the SGIM continues on their ill-advised campaign.


In the study findings presented at the ASCP 2013 Annual Meeting lead investigator Ross Molinaro, PhD, from the Emory University School of Medicine in Atlanta stated, "We're hearing about overuse of this test, but even when it is used appropriately, the result may not be. Of the less than 20% of patients with diabetes who meet the nationally recommended frequency for glycated hemoglobin (HbA1c) testing, more than a third are not prescribed treatment changes when their levels increase significantly.”


They then use the American Diabetes Association (ADA) and I am guessing the American Association of Clinical Endocrinologists (AACE), even though the author of the article uses the term “other organizations,” recommend that the HbA1c test be performed every six months for people in the target range. Then the article continues that if the person with diabetes is not in the target range or if their therapy had changed, that the HbA1c test be done every three months.


Even if Dr. Molinaro says, “The survey results show that endocrinologists are unclear about what constitutes a statistically significant reference change value and would find that information useful; I might believe that the questions may have been twisted to elicit this response. My conversations with endocrinologists lead me to believe that they do understand what a statistically significant reference change value means but maybe those surveyed do not keep records to compare current results to past results.


At least Dr. Molinaro puts his organization on notice that they need to do more when he states, "Our study suggests that better communication between the lab and the clinician is needed on when to follow up with a patient who has a significant change in HbA1c. I think the onus is on the lab to find a better way to communicate test results."


ASCP president-elect William Finn, MD (not involved in the study) said that it is possible the study data does not give a complete picture. Still, the study highlights a well-known issue; however, the information given to the clinicians needs to close the process to be sure the physician is counseled on what the test means. At least the ASCP incoming president understands that the significant change in HbA1c results should apply to other laboratory test.

Reference to My Blog of May 8, 2013

It has been longer than I thought, but finally the person I blogged about in this blog has received her notification letter and had her appointment with the VA. She apologized for not returning my email sooner, but she had her appointment almost immediately after receiving her notification letter. She needed to coordinate with her endocrinologist and her VA doctor to get the correct amount of each insulin and was happy that her doctor worked so well with the VA.


In addition to her insulin, she received a flu shot and was advised to have a Vitamin B12 shot because she was deficient. They suggested that she should have the endocrinologist check her in a month and give a second shot if needed. She said she had read one of my blogs about Vitamin B12, but could not find it. She remembered that it listed some of the sources of Vitamin B12. I sent her the URL and in the return email said she could eat some of them, but did not like liver, kidney, sardines, salmon, and was lactose intolerant.


I said that she should talk to the endocrinologist about taking Vitamin B12 supplement and she said she would. Then she talked about her VA benefits and thanked me for pushing her to get the paperwork in. She said what I knew about the help of the Veteran Affairs officer and that made everything go very smoothly. Then she thanked me again and wished she had contacted me earlier as this would have helped with the oral medications as well.


She said she had been to her doctor and he had a copy of the VA test results now. She commented that she was surprised that he had advised her to take a daily multivitamin after looking at that page. The next question I had correctly anticipated as it was about statins. She did include the results of her lipid panel and they were within range, but near the high side. She did ask if she could avoid statins as she had been reading some of my blogs and other sources and had discouraged the doctor this time.


I sent her several URLs about them and the troubles women seem to have with them. I would only say that my thoughts were similar to the articles and that she did need to have a good talk with her doctor if the lipid panel showed an increase at her next appointment. I told her that only her doctor that knew her history was qualified to advise her. She did say that she had asked because she knew I would give her something to read and said they had answered many of her questions.


We will be staying in contact, but I doubt I will blog about her situation unless she raises some issues that should be blogged about.

Meeting with George

George asked Ben to bring him to see me on Sunday. He had many questions on several blogs and said he had followed the links, but still did not understand the meaning or the importance. He had the titles, so I found the first, which was an early blog listing different book titles. I asked what the problem and he said most of the books are several years old and why would I push them. I told George I was not pushing books. I said I found them helpful at the time and felt that if people wanted to buy them, that was up to them.

Since I had the books on a shelf, I reached over, took each one down, and let George look at them. He asked if he could borrow one and since I had two copies, I said yes. Then he asked for another and I asked him if all he was going to was read all vacation. He admitted that he planned to take them home with him, and I admit I thought about it. I asked if his library might have a copy of both and he knew that they did. I said no then and asked why he could not get them from the library. He said he did not like the area where the library was located. I asked if city buses went by the library and he said he had not thought about that and it would work. I then asked if the city had a branch and George lit up with a big smile and said only eight blocks away.

I then asked George why he had not thought about that. He admitted he had not really thought about using the library, but had called to find out if they had certain diabetes books available. Then he relaxed and admitted he didn't mean I was pushing books, but wondered if I actually had them. I surprised him when I asked what was the real reason he was seeing me. He hesitated and I pushed a bit, telling him to spit it out so we could discuss it.

He fumbled for a bit, looking for the right words. Finally he said, you don't hold back much on topics and make some hard to swallow statements. I said this is my writing style and I think Barry and Ben will agree. I don't follow the teaching of the ADA and other organizations and I think you can understand that. I continued that I have my beliefs and at the same time to not say you have to follow them. George said he agreed with that, but some of the words I used really upset him. I had guessed that it probably was being your own lab rat in experiments. I could see George wince so I knew I was right.

I laughed, and said that is my way of telling you to experiment and gain knowledge from the experiments. Since you cannot experiment on anyone else, you only have yourself to experiment on. George then stated that is the reason for saying what works for you may not work for me. I agreed and said another saying is “your mileage may vary.” George admitted this he did not follow. I said when Ben or Barry, or anyone else of our group says that something works for them and tells you what they do, you may not obtain the same results. Therefore, the result (mileage) may not be the same for you. George said the two sayings are all but equal. I grinned and said yes.

I said some people prefer one way of saying something over another and if you go to any of the diabetes forums, you may see both. George said he had and wondered what was meant. Now he said he has a better understanding and the two ways won't have him shaking his head when he sees YMMV. I agreed this should help him and that when he thinks of a bell-curve and several million people representing the curve, this should indicate that you could be very similar to many people, but if you met them, you may wonder how they could be so close to you. Each person varies in their abilities and the way of getting to almost the same result that it makes you wonder.

Next, George asked me to open a couple of blogs and we started with this one. George said even though he has had diabetes for almost a year, if he had not come to see his friends, he probably would not have the management skills he is acquiring. He said this blog hit home for him and even though he does not like being a lab rat, the rest of the points made him take notice and realize what needed to be done. George continued that for the first time since diagnosis, he could say that he was finally accepting his diabetes and being on insulin has been a real challenge. He said the endocrinologist he is seeing now really works with him and he has asked a lot of questions and received answers to all of them. He continued that going from an A1C of 11.3% to 7.4% in seven weeks was a shock to him, but his new doctor said he may be at 6.0% or less, if he continues to learn.

I congratulated George for that and said that all of the support group should know about this. George said that if it was not for his friend Barry, he might not have been able to achieve this. He said that with the help of Barry's friends, he has learned more about diabetes than he planned on learning, but it is all for the best. Then George said he would be asking to remain on the email list. I said this could continue to help him and then he mentioned this blog and asked me about other things that could create variances. I said that there could be other variances, but that I had listed the main points.

George stated he had asked his new doctor about the internet and he had said to be concerned about poor sites and sites promoting cures. So the second time he had opened it up for the doctor and he had read it. His only comment was that I had more variables than he had thought about, but it was good. George said he had one more, but the doctor said not this time and then gave him his home email address on the condition that he not abuse it. George said he had sent him one on Thursday and telling him he had two more URLs to two more of my blogs and this would be it for now as he was leaving Friday for Iowa. He also told the doctor that unless he found something wrong, not to answer the email and this would be the last until he came across something that puzzled him. For medication questions, he would call the office.

I told George that was good and if he could establish a good communication, not to abuse the email privilege. George said that at the first appointment, the doctor had sent our letter to the insurance company for reimbursement of extra test strips and they had agreed for four months and then it would be back to three. He says that he hopes that with the VA approval he will be able to obtain more test strips. I said that should be possible and he would not need the insurance, but could use them for the three if needed. George said that was the plan as Medicare would only cover the three and he would be on that in another month.

At that point, the doorbell sounded and Barry was there to get his friend. We talked for a while and they left with George saying now that he knew where I lived, he may be back. I told him to call first in the event my wife and I were shopping or busy doing other things. George said he would and would get the phone number from Barry.

Communications With a Doctor

The Monday following our meeting with the doctor that Jason knew the family, I received a long email full of questions. I knew from some of the questions that he had been reading and I would need to respond. His first question was why we would not meet with certified diabetes educators (CDEs) and registered dietitians (RDs). He did comment about my interview with Adele Hite and said this means at least you follow one RD. I admit I follow several and mainly those that do not completely agree with the national organization. Then I pointed him to several blogs that point out the failings of the national and state groups and how they are working to criminalize other nutritionists that are not members of their organization. Also on the list of links are several blogs that show how the Academy of Nutrition and Dietetics (AND) is tied to Big Food and working to become the only source for nutrition information.


Then I answered his question about CDEs and stated that in general they do not feel that type 2 should take any of their time and especially those on oral medications. I gave him several links about this and how they seem to run away from patients needing help with depression.


His next question was why we don't follow the pronouncements of the American Diabetes Association (ADA). For me this was an easy question. I did send several links, but said that the ADA way as well as the AACE did nothing to encourage patients to take charge of their diabetes and prevent it from getting worse and the complications becoming part of the treatment. The fact that both organizations had leaders that did not think testing for those on oral medications was important except of the A1c test quickly soured us on their teachings.


I then stated that when the two organizations stopped putting out information that promoted progression of diabetes and started working with patients to show them that diabetes did not have to be progressive we would consider respecting them. Then I said that with the conflicts of interest existing in both the organizations and the officers behind the guidelines, we had no reason to respect anything coming out of the ADA or AACE. Then when the Society of General Internal Medicine (SGIM) chooses to follow the advice of the officers of both and recommend stopping testing for those on oral medications, even they lose our respect.


There were several more questions, which I will only answer to him, but I know that he will have more questions. Jason said he received many of the same questions and said he agrees with my answers and hopes that the doctor understands what we have said.

Doctors/Patients Delay Diabetes Treatment Intensification

Apparently, UK doctors are similar to US doctors in taking care of diabetes type 2 patients. The same applies to patients in both countries. It is no wonder we are facing a diabetes epidemic.


Doctors are afraid to intensify diabetes treatment, and patients are not doing anything to manage their diabetes. Both the doctors and patients need a good kick in their posterior and even then, I have doubts about how effective this would be. Doctors are fearful their patients may have episodes of hypoglycemia and this keeps them from intensifying treatment. They also believe diabetes is progressive and many feel like - why waste money on these patients.


Patients by contrast, go to the doctor for more medications and expect the doctor to manage their diabetes. How naive patients can be. I have heard many of the excuses offered by patients and this tells me they are looking for that one pill that will allow them to return to their life, as they once knew it. A couple of these excuses are, “my blood sugar is out of control and nothing my doctor tells me will fix it” or “my doctor isn’t listening to me when I say my medication isn’t working.” Do these really sound like the patient has taken ownership of their diabetes? Hardly, these excuses sound to me like they expect the doctor to manage their diabetes and it isn't happening and won't happen.


Doctors and patients both need to reconsider their positions and act accordingly. The doctors know from the A1c that the patients are not managing their diabetes. The patients are refusing to take ownership of their diabetes and expecting the doctor to manage it for them. I can only advise patients to take ownership of their diabetes and learn how to manage their diabetes.


#1. Stop expecting miracles from the doctor. Your A1c tells them how you are managing your diabetes and gives them concern that more medications will not help.
#2. Start educating yourself about diabetes – start reading and acting like you should by changing your lifestyle habits. See my blog here about the lifestyle changes that you can or should manage.
#3. Find someone that is managing their diabetes and ask for their help. No, I did not say do what they do, as this may not work for you. Learn how they manage their diabetes and try these ideas, but don't become tied to them as something may work better for you.
#4. Develop a food plan that works for you. If you are able to afford the extra tests strips, test more often and learn to trust your meter as it will show you what works and does not work in a food plan.


Remember, the diabetes is your diabetes and you must manage it. The doctor can offer suggestions, but you are the only person that can put the suggestions into practice.

Sub-Classes for Type 1 and Type 2

This study heightens the need for sub-classes not only for type 2, but also for type 1. When I first blogged about sub-classes for type 2 diabetes back on August 5, I expected to have a lot of dissension, but received none. Now I am seeing others promoting this possibility, but no one is actually saying classes, but phenotypes of diabetes mellitus in relation to their immunological, metabolic and genetic profiles. I admit I like the term sub-classes, but I will work with a technical definition.


“The DiMelli (Diabetes Mellitus Incidence Cohort Registry) study examines the frequency and characteristics of diabetes phenotypes in children and young adults below the age of 20. The study was commissioned to investigate the increasing incidence of diabetes mellitus, particularly in childhood and early adulthood. The project is funded by the German Center for Diabetes Research (DZD). Bioprobe measurements were performed centrally by the Central Medical Laboratory (LMZ) at the Helmholtz Zentrum München (HMGU) so as to guarantee the high quality and comparability of laboratory parameters. The study is based on the DiMelli Bavarian Diabetes Register, the only register of its kind in Germany, which collects data on biological parameters in the blood of newly diagnosed diabetics as well as their phenotypic characteristics, i.e. their physical symptoms and features.”


I quoted the above to give some background that we are talking about children and young adults. Yes, I do think this type of study needs to be undertaken for all ages. This could be a boon to driving research in the right direction for the different age groups. A blog published on September 24 covers some of the findings for the elderly and shows at least two sub-classes.


The one idea from the discussion that really drove the above home for me is that the youth are generally type 1, and yet there are increasingly more type 2, and possibly some that are type LADA. With the growing number of youth developing diabetes, this is an area needing more study.


The authors conclude that the latest scientific findings no longer support such a rigid classification of diabetes. Rather there appears to be a continuum of forms and a mixture of diabetes phenotypes. In order to be able to introduce the right steps in treatment and to offer patients accurate information about their disease, it is essential to refine the criteria for differentiating and diagnosing the different forms of diabetes. Further studies are now needed to shed light on the long-term development of the phenotypes, the distribution of different types of diabetes, and the way in which their features present themselves in adult patients. This is required to provide more clinical evidence for physicians to use.

Nutritionally Unsound Fad Diet Endorsed By AND

I admit the last three weeks have not been good for my blood pressure. Again, my anger is fired by another group telling people with diabetes what they should be doing. This time it is the Academy of Nutrition and Dietetics (AND) that is endorsing a fad diet based on white rice and fruit. White rice is not a food that is good for diabetes and causes our blood glucose to spike to high levels because the glycemic index is very high. The right fruit can be beneficial for diabetes, but certainly not all fruit as this fad diet proclaims.


Amy Jamieson-Petonic, a registered dietitian and a spokeswoman for AND is promoting the Rice Diet as nutritionally sound. The AND supports the Rice Diet, with few concerns such that it is difficult to follow and that it is low in vitamin D and calcium.


“There are so many weaknesses with this diet that it’s difficult to know where to start.

• First, the reason people lose so much weight is that dieters consume only 1200 calories per day—many of which are empty calories.
  
• The diet is low-fat and low-protein, even though healthy fats and proteins are essential for maintaining health.
  
• Despite the fruit, it’s low in micronutrients (vitamins and minerals), and this may accelerate the degenerative diseases of aging.
  
• White rice is extremely high on the glycemic index, which means that rice is rapidly digested and absorbed, resulting in dramatic fluctuations in blood sugar levels—the very things that can develop into type 2 diabetes or for those with type 2 diabetes, make it more difficult to manage.
  
• Too much fructose in fruit can be dangerous as well. While it’s better to have fructose in the form of whole fruits, people with diabetes, high blood pressure, and high cholesterol should be careful to limit fructose to 15 grams per day or less and even healthy people should probably not exceed 25 grams a day. One way to assess your fructose sensitivity is to have your uric acid levels tested.”
  

Given these reasons, I have to seriously wonder why people are determined to follow the AND way of nutrition when they have many companies in the processed food industry and companies such as Coca-Cola sponsoring their activities. The AND is continuing to press state legislatures and the federal agencies to allow them to be the only group educating people about nutrition. Then after getting many states to pass the legislation, they seek to criminalize degreed nutritionists who actually promote good nutrition.

Casual Meeting with a Doctor

At 7:00 PM, seven of us gathered at the library with the doctor Jason and I had met that afternoon. Jason said that there were others that wanted to be there, but already had plans for the evening. After introductions, the doctor asked us if we could discuss what made us successful as a group.


Tim started the discussion by stating that we always support each other no matter what the problem. Jason said we try not the let our personal problems dominate the meetings and since so many of us do research, we normally have this to guide the conversations. A.J. stated this was what appealed to him and the fact that two or more people always sent out emails summarizing the meetings, and therefore if it was necessary to miss, you were included after the fact. I stated that we all have email addresses for each other and telephone numbers if necessary. We use video conferencing if needed and use emails quite a bit to let people know about different articles.


The doctor asked how he could apply this to a group that seems to desire secrecy in everything. Rob stated that this could make it difficult to overcome, but if presented correctly, could be overcome. Allen said that secrecy was bad as far as he was concerned, but it is true that many do not want to talk about their diabetes and don't want to hear about other people's problems. Max added that with only two of us being overweight, he was always concerned about people making comments about our weight, but this has not happened.


Sue's husband, Bob asked if a lot of our success has come from our willingness to accept people as they are. Jason commented this is probably contributes to much of our success and not being judgmental. The doctor asked Bob why he would say this. Bob said that he was the one that had outed his wife's diabetes and he had actually hoped that we would give her payback for being the diabetes police. He said no one would and instead asked where they could be of help. They gave her the encouragement to adapt her food plan, continue her exercise, and maybe eliminate medications. Bob continued that when I announced that I had type 2, the support was there and I have been able to get off medications. A.J. said he has been able to do the same.


The doctor asked what age range the group included. Tim stated from 60 to 76 years of age. The doctor then asked the range of time people had diabetes. I said I think I am the oldest there with ten years and A.J. said he was just past his 6-month point. I asked Allen how long he had diabetes, and he stated just over 9 years. I added that four people of the group presently were not on medications with the remaining 10 on insulin.


The doctor was shaking his head and Tim asked why. The doctor asked why so many on insulin? Jason said because we were not liking the side effects of oral medications. Allen said at just almost 8 years, Tim and I had questioned him about how long he had been on metformin. Then they asked if I had been tested for Vitamin B12 deficiency and Allen said the doctor would not test me. They would not let me go any longer without being tested and set up an appointment with their doctor to be tested.


Allen continued that the doctor would not let him leave with his driver's license and that he had two shots that day, one for Vitamin B12 and one for Vitamin D. At the next appointment, he was given two more shots and put on a daily supplement that included several more vitamins and minerals and scheduled for two more shots the following week. When his two vitamins were back in the normal range, he was given his license back. Allen concluded that if we had not insisted that he see their doctor, he might not be alive today as deficient as he was.


Bob said this creates a loyalty that makes people want to be part of a group. A.J. added that this is why people like the diabetes clinic they use. The clinic will suggest insulin for the right reasons, to bring diabetes under quick management, and then if you adapt the lifestyles, they allow you to get off medications as they allowed me.


The doctor said this will be difficult to use to bring a group together and then asked if we had a doctor in the lead. He was a little surprised when we gave him a unanimous NO. Tim said this was our choice and another reason we feel like we have been successful. Allen said that about the only person we listen to as a group is the nutritionist relative of our blogger. The doctor said you don't have meetings with a certified diabetes educator and he received a no, a registered dietitian, and again the answer was an emphatic no.


Then the doctor just had to ask what our A1c's were. Tim answered that Sue, Bob's wife was the lowest at 5.2% and Max and I were the only two above 6.0%, but under 6.5%. Now the doctor was in shock and asked how many episodes of severe hypoglycemia each of us experienced on a quarterly basis. Silence and Tim asked him to define severe. Tim said we receive so much grief about this that we want to be sure were are talking about the same numbers. The doctor said to start at 45 mg/dl, and he could see that he was not getting any answers. Tim then said that most of us very seldom get below 55 mg/dl and this is infrequent. I stated that in the last year, I have only been below 55 mg/dl one time and that was 54 mg/dl. Two others admitted that they had been as low as 64 mg/dl, but the rest had not been lower than 70 mg/dl.


Tim had been looking for the blog of mine on hypoglycemia and when he had it asked the doctor what he considered the start of hypoglycemia. The doctor knew he was being tested, but said 80 mg/dl. Then Tim asked him to read my blog. After he completed this, he asked Tim to open the link and Tim directed him to the next tab where he already had the link open. After he read this, he said you fellows are more up-to-date than I am. Allen said this is because we do our research and try to educate ourselves.


With that, the doctor looked at the time and said he needed to get back to his parents, but asked Tim to enter his email address and send him a list of those present. Tim said okay and entered the email address. The doctor said he appreciated our time and that we were different than most groups and apparently took our education very seriously. Then he said to Jason and me that he would be in touch. I will write more on communications with the doctor in another blog.