Activities of Our Diabetes Group

We are still attempting to have Hospice back to speak to us, but they have been busy. Even the county Public Health/Home Health Care person has been too busy. Both have been in contact with Barry and Allen according to Ben, but their time has been taken with clients needing attention. Allen even said that the speaker he wanted asked to hold off for the summer with the children being so busy.

We had one short meeting in June and have scheduled the next meeting for September, as several of our group will be on vacation for the month of August. Max and I were attempting to walk, but he is having a planters wart removed and the doctor has said no more walking than absolutely necessary. We agreed as this heat and humidity are making life difficult outside the air conditioning of our residences.

Allen is becoming very active online and is tackling a project that surprised the rest of us. He has become familiar with the FDA Patient Network and is doing correspondence with several people he met online there. Tim and I are attempting to help him when asked, but he has taken off on his own and is really into what he is doing.

Tim and I are attempting to monitor what is happening with the Medicare scandal and the CMS being sued for awarding non-approved companies contracts for medical supplies and medications. Not a fun task and I admit I am happy I have never dealt with any of the mail-order medical suppliers.

All of us must congratulate A.J. for being able to say goodbye to insulin and all medications. This extends to John as well, as both were able to be approved to stop all medications about the middle of July. I had a long conversation with A.J. when he said something, but he said the doctor had given him permission and since he is purchasing extra test strips on his own presently, the doctor just has him testing seven times per day. He and John are able to exercise each evening and John is happy to be off metformin.

Everyone is happy that four of our members are off medications and are doing very well with their new found freedom. Even Sue was happy to know that she and her husband were not the only ones off medications. Sue has asked for help, as her husband, Bob is having some troubles lately and his fasting is creeping upward. Barry told him to purchase some extra test strips and test on the frequency that A.J. is testing, and this seems to be the help he needed. A.J. also advised him to reduce his carbohydrate intake and cut more of the whole grains out of their food.

I loaned them my book, Wheat Belly to read and Sue said she is getting quite a lot out of the book. She and Bob do not like flax, so they are hunting other recipes. I sent the URL for Dr. William Davis blog site here. She said this has helped and they have ordered his second book Wheat Belly Cookbook. I also sent the following blogs for them to read starting with June 30 and then to explore more later. On the first – Fathead-Movie, I urged them to read the comments as there were often some great variations in the comments. On the second – Marks Daily Apple, I told them to explore and if that did not give them ideas, I would send some more.

Bob says he made the crust for the faux pizza and the paleo mayo and has really enjoyed the variety of sandwiches. He said that he had to make smaller sandwiches after the first time as he was over stuffed. He also commented that his blood glucose readings love the sandwiches. Sue commented that her blood glucose readings have come down as well.

Two of our members spent a couple of days in the hospital, but mainly it turned out to be for flu-like symptoms. Mostly the doctor said they were more dehydrated. Brenda is busy with her grandchildren for much of the summer.

Diabetes Experts versus Diabetes Patients

When a couple members from the support group saw this title, one made the comment, “Here we go again!” I asked what he saw in the title and he said that it was another blog about oral medications. I had to agree, as that is my intent. I must declare I am on insulin (long acting and short acting) plus a minimal dosage of metformin.

I do believe it is time for patients to declare their intentions, especially if they are on some of the medications that are being reported with serious side effects. I have nothing against metformin in the extended release version, as the gastrointestinal side effects are often minimal when taking it. Many people have no side effects with the extended release version. And the fact that it is generic and the cost is affordable and makes this an economical treatment for type 2 patients.

Yet, our diabetes experts want to stack one oral medication on top of another oral medication for several medications. I complain that this is not good and this practice by physicians needs to stop, the AACE Diabetes Algorithms not withstanding. The American Diabetes Association and the American Association of Clinical Endocrinologists don't want this to happen and advise keeping patients on oral medications. The sad part of this advice is the corporate sponsors of these two organizations are the beneficiaries and the officers of the ADA and AACE receive fees from these same sponsors.

It is convenient for me that one of the studies reported out of the ADA 2103 Scientific Sessions June 22, is about stacking three medications and the author reports starting people newly diagnosed with type 2 on triple drug therapy. You may read about this ongoing study here at Medscape. This has to make the ADA and AACE very happy.  I hope this becomes fully tested as the side effects may be great and dangerous.

This relationship with the pharmaceutical companies has to end for any trust in the ADA and AACE to be restored. How can we place trust in the guidelines issued and the recommendations of their officers when we know that they are influenced heavily by the fees they receive from the pharmaceutical companies? Then in addition, they are well paid as officers from the contributions or sponsorships of these same pharmaceutical companies to their respective organizations.

Yes, I will continue to blog about the guidelines issued by the ADA and AACE, but everyone needs to be aware of the biases built in and the underlying motives for some of their misdirected guidelines. Comprehensive the guidelines are not and with the built in discrimination by researchers when they exclude the elderly and the young from participating in research, the people that are using the majority of the medications have not had the medications tested on them. This adds more reason to take a jaundiced view of the guidelines. Insulin anyone?

And before I forget, I salute the people with type 2 diabetes that are able to manage diabetes without medications. Some have been able to manage without medications from the start while others have been able to wean themselves off medications and continue to manage without further medications.

More Evidence, Type 2 Is Idiopathic Hyperglycemia

This time it is a doctor in the United Kingdom calling for a name change for type 2 diabetes. I think this has more merit than the name change for type 1 diabetes will ever have. Edwin Gale, MD, of Southmead Hospital, Bristol, United Kingdom wants the name to be idiopathic hyperglycemia. I don't envision this name sticking, but it is more descriptive than type 2 diabetes.

At this point, I think the definition from the American Heritage® Stedman's Medical Dictionary is appropriate.

idiopathic id·i·o·path·ic (ĭd'ē-ə-pāth'ĭk)
adj.

1. Of or relating to a disease having no known cause; agnogenic (another name for idiopathic).
2. Of or relating to a disease that is not the result of any other disease.

"We talk about type 2 diabetes as if it were an actual, well-defined, formulated disease, and the moment we start talking about this…we assume it's a disease that has a cause, that has a mechanism for which there are specific treatments and for which there may be prevention and cure," explains Dr. Gale.

I admit that I have suspected what he describes. Why else would we have people labeled as type 2 diabetes in such a wide range of conditions and medications. I know people not needing any medications and all through the spectrum to people like myself that are on insulin shortly after diagnosis. There are people that have little or no insulin resistance to people like myself that have high insulin resistance.

One of the major fallacies of lumping everything together under the term type 2 diabetes is the introduction of one-size-fits-all guidelines for disease management. Dr. Gale is also concerned about treating everyone the same whether you are 40 or 90.  Using the term idiopathic hyperglycemia would encourage clinicians to think of the condition as an outcome of many interacting processes.

"If you talk about type 2 diabetes as being a single condition, you are going to then automatically assume there is a single best treatment, a single best path to follow. People get hypnotized by a name… A name can be very deceptive. It's best to have a name that makes no assumptions," he concludes.

Dr. Gale argues that, “Because the symptoms referred to by the term 'Type 2 diabetes' have such widely varying causes, mechanisms, and treatments, the term is misleading both researchers and patients.”  I am sure that the ADA will have disagreements with Dr. Gale. Someone within the organization will probably feel the need to spout off to attempt to repudiate him.

Read this blog by Tom Ross about this topic. It is in the second part of the blog for May 30, 2013. You will need to scroll down to it because the link takes you to May 31.

People Not Understanding Elderly Discrimination

I received a confusing email this week. Confusing for me as I did not understand what was missing, but it did not take long after the second email. I am not used to being called out for making up information when I use links to support my writing. The blog in question is this blog and the person was very upset that I would say that being in the elderly classification resulted in being discriminated against. This person could not believe we are being discriminated against.

She did not feel like she was being discriminated against and asked bluntly, why I felt that way. She is like me and using insulin, both short acting and long acting, plus metformin. Granted there is not a lot that researchers can do to discriminate against us as individuals and this was her point. After finding out that she has had diabetes for almost 30 of her 85 years, that she is also a member of a very strong support group and likes to use her computer, we have had several more emails. She does not like to do research, but reads quite a few blogs and enjoys reading.

I had to explain that I personally am not being discriminated against, but as a member of the over the age of 64, we are still being discriminated against, because we are excluded from studies just because of our age. I had to explain that even though we don't wish to participate in studies, which age group uses the most medications. She had to agree that those of us over 64 probably use the majority of medications. I asked her if she had friends on oral medications and she said many were on oral medications.

I told her that by excluding people using the majority of the oral medications, how did the doctors know that the drugs were safe for us, what was the correct dosage, and if our bodies could tolerate the medications. For some people there were clearly problems with some drugs and others were not tolerated well by some people. Much of this has been learned after the fact and by harm to patients when this should have been discovered before the FDA approved the drug. This is what finally made the subject clear to her. Not that we were being individually discriminated against, but as a group by not testing anyone in the group over 64 years of age with the medication, we were being discriminated against when we should not be if the testing had been done on people in our age group.

I then added that with the other conditions that an elderly person could have, how would the doctor make a correct assessment of what to start us on for oral medication and the clinically best for our age and related conditions. She agreed that this was not good for the elderly and concluded that even though we individually may not be discriminated against, the elderly, as a group, are clearly not being treated correctly because there is not clinical evidence to guide doctors.

I asked her how many were in her support group and how many were on insulin. She said there were seven members and four were on insulin. Two others wanted to change to insulin, but their doctors would not allow this. All had A1c's below 6.0% and even her doctor was urging her to let that rise. She said that all in her support group were 78 years young to 88 years. The four on insulin all have the same diabetes clinic and the other three see three different doctors. One of the three is still off all medications.

Then she surprised me by thanking me for my blog of February 8, and how much the ideal weight chart on Health Central had helped them. Only one of the group was overweight and then only by three pounds. They all live in the same area now and enjoy exercising together and comparing notes. I have now heard from three others in her group and they are all very positive in their attitude about diabetes.

What Level of Glucose Control Is Best?

This is a difficult question and has many answers depending on the perspective from which you are viewing it. I am discovering this more and more among doctors specializing in diabetes, they will not commit to many rules. Most doctors will not commit to any specific goals except for the organization they believe in the most. This means 7.0% for those that follow the dogma of the American Diabetes Association and 6.5% if they follow the teachings of the American Association of Clinical Endocrinologists.  The most difficult goal is to have a doctor actually do an assessment and individualize any level of A1c goal for you as an individual.

I had thought what I was hearing was a result of my age, but in talking with other diabetes patients, much seems to depend on the medication the person is taking or not taking. Most doctors seem to expect HbA1c's below 5.0% if the person is managing with a meal plan and exercise. Once a person is on medications of any type, the expected level seems to be age variable and medication variable, but generally starts above 5.5% and moves up rapidly depending on the medication. The minimum level for people over the age of 64 seems to be 6.5%, but I have heard one patient say his doctor wanted him at a minimum of 7.5%. I could understand 7.0%.

Before going further, the method of collecting my data is not scientific and is just from asking questions when I find myself in a position to do so. I can say with some confidence that hypoglycemia is the force behind the numbers in most cases and this must keep doctors up at night. The first time I got below 5.9%, the endocrinologist wanted my meter readings and insisted I bring my meter with me to all appointments. I almost had a panic on my hands at the next appointment when I was at 5.6% until they had scoured my meter readings and found no reading below 76 mg/dl. I was, because I was short of 68 years of age, given a stern warning to bring my blood glucose level back over 6.0% and closer to 6.5%. Now they want it to be over 6.5% and I will continue to rebel.

Several of the support group on insulin have been maintaining their A1c's below 6.0% and being lectured about their levels. Allen had a recent A1c of 5.4% with no hypoglycemia episodes and only one reading below 80 at 79 mg/dl. Yet, he is the eldest of our support group and says he was read the riot act and told to raise his A1c. When he asked what was wrong with his readings and A1c, they could not tell him and he just said it will be what it is.

As a support group, we have concluded that hypoglycemia is what drives the concerns of doctors and they are very concerned to the point of being fearful of anything smelling like hypoglycemia. Our youngest support group member is the person that has been off medications the longest and as Sue says, her A1c of 5.2% only earned her a congratulation and keep up the good work. We now have three more members, Sue's husband, A.J., and John that have become medication free in the last two months.

Age seems to be a factor and while there is concern for people below 65 years of age, they are not lectured as hard unless they have several episodes of hypoglycemia. Therefore, I will not state that any one level of A1c is better than another. Each person needs to analyze their meter readings and decide what level they wish to achieve. Even I would be remiss in saying that if you have many episodes of severe hypoglycemia, the higher your A1c should probably be.

I hope this answers a few of the questions I have received lately. While I answered the emails individually, I felt this was a topic for a blog. I have enjoyed the questions asked and hope that I have answered them to your satisfaction. One person has thanked me for my answer and is asking more questions which I have enjoyed answering as he is looking for answers that are specific to him. He wants to see what he is capable of and realizes that even though he is receiving A1c's under 6.0, he is fighting very hard to prevent hypoglycemia and therefore realizes he has to be extremely careful. I have suggested that he discuss this with his endocrinologist and discuss maybe adjusting the insulin to carbohydrate ratio and possibly his correction ratio.

Another good read on A1c's is by Tom Ross, here.

New AACE Diabetes Algorithm Consensus Statement

Well, finally the criticism has forced the American Association of Clinical Endocrinologists (AACE) into action. They have now issued a new type 2 diabetes algorithms consensus statement to accompany the original algorithms. This consensus statement is 48 pages in length and is available for free download. Yes, again, it is in the PDF format and the original 8 pages of the diabetes algorithms are turned on their side to make them more difficult to read.

Now I must ask, did the criticism finally bring them to their senses? It may have, plus the blogger gnats may have become pesky enough. I think that Dr. Anne Peters and

Dr. Jerry Avorn articles convinced them to do more. What is important is the disclosure of the ties to Big Pharma including for Dr. Alan J Garber, who has some rather substantial conflicts of interest. These disclosures start on page 29 and while are not surprising, do show how tied to the drug companies most of the people are. This is just one more reason to be cautious about relying on the AACE diabetes algorithms.

What I find upsetting is the continued reference to the benefits of weight loss surgery or bariatric surgery as being the recommendation of preference. We know that this is not the cure-all claimed and many people are not able to maintain the strict diet required for bariatric surgery to be successful in the long term. The references chosen of course do not include the discussion in this Medical News Today article which emphasizes following the diet recommended for those that have bariatric surgery and receiving many if not most of the benefits.

I find the prediabetes section almost insulting as they say the primary goal of prediabetes management is weight loss as if everyone with prediabetes is overweight. I have met many patients with prediabetes that are not overweight. They continue that, when indicated, bariatric surgery can also be highly effective in preventing progression to diabetes. At least they felt obligated to say, weight loss may not directly address the pathogenesis of declining beta-cell function.

I am very surprised that no mention is made of medications being used “off label” because at present the FDA does not list any approved oral diabetes medications for prediabetes. Because metformin and acarbose are generic and relatively inexpensive to purchase, I can accept this. However, I think it would be wise for the drug manufacturers that the American Diabetes Association (ADA) and the AACE support with their dogma to have these approved. There are several other medications promoted in the Consensus that also should be on the approved list of drugs before they are used “off label.” These currently have FDA warnings, but AACE does not want the patient to know of them.

The AACE Diabetes Algorithms consensus statement is consistent in their promotion of weight loss and bariatric surgery as often the best option. They are also consistent in making readers aware of preventing hypoglycemia as a priority.

As I have time to study the consensus statement further, I will blog about it and I am hoping to see other professionals making statements about the consensus statement.

Joslin SEEMS a Fan of AACE Algorithm

It seems that we are going to be continually bombarded with the American Association of Clinical Endocrinologists (AACE) Diabetes Algorithms. This time it is the Joslin Diabetes Center trumpeting the algorithms. The author of the Joslin blog tells us what we know and that is that the algorithms are for practitioners, both the endocrinologists and primary care physicians (PCPs). And yes, most people with diabetes are cared for by a primary care physicians, but that means they will have one diabetes medication stacked on another.

If things hold true, many of the diabetes patients will be kept on oral medications for too long a time as A1c's rise. The algorithms recommend moving to insulin, but many PCPs are very hesitant to move diabetes patients to insulin because they are also afraid of hypoglycemia.

I admit that the following statement by the Joslin blog author has me concerned and wondering why they are agreeing that diabetes is progressive. “They also place greater emphasis on the use of medication early in the pre-diabetes stage of the disease. Including medications as a concomitant part of treatment from the beginning, acknowledges both the difficulty of lifestyle therapy and the progressive nature of the disease.” This disagrees with the statement of Dr. Anne Peters from the University of Southern California, “The authors have eliminated hemoglobin A1c as part of the diagnostic criteria for prediabetes and don't describe in much detail how to decide when to treat somebody with prediabetes. There is no current US Food and Drug Administration-approved medication for the treatment of prediabetes.”

This tells me that Joslin is not afraid to use diabetes medications “off label” and with metformin being economical, this may be acceptable, as most insurance companies will not reimburse for pre-diabetes medications. The fact that Joslin considers diabetes progressive should concern every patient at Joslin, and especially if you are working to prevent progression to complications.

Joslin also apparently follows the American Diabetes Association guideline of 7% as the ideal A1c level and this also indicates that they consider diabetes progressive and that there is no means to prevent this – how very depressing. I can agree with the statement that A1c needs to be individualized for the elderly that are having other disease or comorbid problems, but they don't say this. They only say the target A1c needs modification based on individual risk factors and circumstances. Then the blog concludes with the statement, “Prevention of hypoglycemia is paramount when developing a treatment strategy for patients.”

There are so many issues left unsaid and others that are hinted at, that one needs to wonder who sets policies at Joslin and then if anyone follows these policies, if any exist. In the last few months, more conflicting comments have appeared in Joslin's blogs and in other sources. Then they refuse to identify the person writing the blog by saying the blog is by Joslin Communications.

What Is A Person With Type 2 to Do? - Part 2

Part 2 of 2 parts

It is amazing the number of problems that we as type 2 patients face to learn about diabetes and how to care for ourselves. Is it any wonder many people give up and become depressed? I can understand this and try as I might, the only answer I can find is to self-educate ourselves. Yes, some can find excellent doctors, certified diabetes educators, and excellent nutritionists, (no I did not say dietitians), and excellent support groups. If you have one of these people, work very hard to keep them, respect them, and learn from them. We will all probably need to continually battle our high profit minded insurance companies for medicines and testing supplies, but this is a battle all must fight.

I am fortunate to be part of a very strong diabetes support group. Activities are slowing for the summer, but I know several people are paying attention to the FDA discussion on Avandia and several of the other diabetes drugs. Self-education is a tool we work at together, we inform each other about different studies and research that is published online, and we often talk about them by exchanging emails and occasionally using video conferences.

We as a group are thankful that we are able to talk about diabetes and while we know of some people that are outside of the group that will not talk about diabetes and are doing their best to keep it a secret, this is not a goal of any of the current members. With diabetes being the 24/7 problem, we will accept support from each other and be glad that we have this. There are three that are not members, but they do talk to different members quite frequently and we help them when asked. We know why they do not want to be members at this time and we are not pushing them to join. Two are just happy that we thought enough of them to include them on our email list. Their jobs keep them busy and away from home to the point that when they are home, they wish to spend time with their family. The third is talking to Brenda and me, but there are other factors involved as well.

I will again list several of my blogs for people to review and hopefully find information that will help them learn and become knowledgeable about diabetes. Blog 1, blog 2, and blog 3 contain information and websites to read and explore.  There is some duplication between blog 1 and blog 3.

Because many of us do not have doctors that have time to educate us, certified diabetes educators available, or facilities available to assist in diabetes education, it is our responsibility to educate ourselves. Some doctors will encourage this and others will not. The doctors that will not, often feel they are all that you need and do not want you on the internet educating yourself. So be careful and do not bring lots of printed materials to an appointment with these doctors. You would be better served by asking how they feel about you finding information on the internet. If they discourage this, then by all means use the internet and keep quiet about it. Local libraries can sometimes be useful in finding books or using their computers. Therefore, do not be discouraged if you do not own a computer.

Another resource person you may be able to use for medications is your pharmacist. Some are very helpful and again others do not feel they should help. This will often depend on how busy the pharmacist is.