Brittle Type 1 Now Listed as a Rare, Distinct Diabetes

This is another point against doctors. Most doctors are unwilling to admit they are in error, treat the patient as a non-adherent person, and cause untold harm to patients. For this, I must ask when these doctors are going to learn that they are fallible and start treating patients with the respect they are due.

“The National Institutes of Health recently listed brittle type 1 diabetes as a rare disease, a distinct and separate form of type 1. An estimated 3,700 to 8,700 persons in the United States have the condition.” We are fortunate we have even this estimate the way doctor's act. While I am a person with type 2 diabetes and am insulin dependent, I can sympathize with these people with type 1 who get no respect from doctors.

Brittle diabetes is known for rapid, unpredictable, and uncontrollable rises and falls in blood glucose levels. The Brittle Diabetes Foundation says there are 18 known causes for the condition. When doctors properly diagnose and properly treat people with brittle diabetes, they generally are able to achieve a stable type 1 pattern. Because of the rarity of brittle diabetes, people with this condition often go undiagnosed. These patients are determined by doctors to be non-adherent to established diabetes management routines.

What is surprising is that most cases of brittle diabetes are diagnosed when patients are in the hospital. When these patients fail to respond to conventional methods for stabilizing blood glucose levels, this opens the door for proper diagnosis. It is not that these doctors are any smarter, but when patients can be said to be adherent, doctors must attempt to discover what the cause is that is driving the uncontrolled ups and downs of blood glucose levels.

The Brittle Diabetes Foundation was formed in 2012 to address what is says has been 80 years of neglect by the medical community despite ample research into and documentation of brittle diabetes.

In the wake of the National institute of Health's recognition of the condition, the agency has set up a website dealing with brittle diabetes at this link.

Social Isolation Is a Powerful Mortality Risk Factor

This is alarming in many ways and gives me reason to continue to see some of the elderly that I do. Some of the people I see on a regular basis are married and others live alone. Even some of the elderly live in almost total isolation and never see their neighbors. They seldom leave to get food and one couple has almost no food. The last couple finally provided me with telephone numbers of two children that had not been home for several years even though they lived less than 150 miles distant.

In a phone call to the daughter, I was not believed when I said that the only food they had was what meals-on-wheels provided. I said the husband no longer drives and the wife should not either, but does go out once a month to get medications and a little food and then they stay home. I said both need to see a dentist and a doctor, but do not. The daughter said the family was just too busy to make it home. I said they will be dead before you decide that the grandchildren need to know their grandparents. I was not aware that the son-in-law was on an extension until he spoke up and said they would be there on Saturday. The daughter started to make excuses, but the son-in-law stated that he and the two children would be going. He then asked me to come by if I could and I said I would.

When I arrived that Saturday afternoon, the son-in-law met me outside and thanked me for the warning. He had been on the telephone with his brother-in-law and had relayed how things were and he would be there that evening with his family and would bring his sister. Because of the condition of the house, they would need to stay at a local motel, but the son-in-law was more upset at his wife for not believing me and refusing to come with him.

One elderly woman of 89 years had two daughters living less than 100 miles distant, but had not seen each other in over 10 years. They talked by telephone normally once a week, but that was the extent of what they did. .

I was able to get the telephone numbers and called them. I found out that neither of them would plan a trip home. I had asked the son of the above couple if he knew the two daughters of this woman and he thought a minute and then realized he did. He asked me to take him by her place. He and the elderly woman had a great chat and afterward he said he would see to it that they were called and tell them to come home. He also said he knew the husband of one of the two daughters and would call him and explain the situation to him to attempt to get one to come home at least.

He asked for my cell number and when he called that evening, he said that both son-in-laws would be there the next morning. I asked him if he knew why the two daughters were so adamant about not coming. He said that both had bad memories from their father who was abusive toward them and would not return to the house they had grown up in. The son then said that the reason why his sister did not want to come home as she always felt like she could never please her mother and had basically written her off. Even he admitted that he felt that way, as his mother had not approved of his wife.

The two son-in-laws were there the next morning and when they saw their mother-in-law; they apologized for their daughters and were happy they had brought the grandchildren to see her. The son of the elderly couple asked me to stop by and explain why I had wanted them to come home. I did and both son-in-laws said to understand that they wanted more for their mother-in-law and if there was anything that needed to be done, I would be reimbursed for any expenses. I said I was happy to hear this and handed them a notebook with receipts attached and totaled.

They split the bill and said they appreciated that I had itemized it. The one said that they were going to take their mother-in-law home for the week and see if the other daughter would accept her in their home for another week. I said that they should, if they had the time, come back and get the furnace inspected and he said that was what they were doing since one of the son-in-laws was the owner of a plumbing and heating business. He said that the furnace did need to be repaired or replaced, but they were not completed with the inspection. Both said they needed to get the children back for school on Monday, but that the one would be back on Monday to see what needed to be done.

They asked me to stay in touch and assured me that I had done the right thing in having called them and then having the son of the couple call them. The second son-in-law stated that he was going to encourage both daughters to come home at least once and see what was happening. Plus, he was going to see if his mother-in-law could handle a computer and then could use it to chat with the grandchildren. He said either he or his oldest son who could not make the trip would be able to work with her and teach her how to operate it. I said that I was somewhat knowledgeable with computers and could assist when they could not, if needed.

With that they returned to their families and I came back home. The following week the one son-in-law was back and said the furnace needed replacing and would have his crew bring a new one and install it. He had the permit and would be here until that was completed. He stated that his wife would be taking her mother for the next week and was happy that they did not need to come back to the house. Then they would make sure that their mother was included in the holidays and other times.

He stated that both appreciated what I had done for the mother-in-law and that they wanted me to continue if I could. Other the next few weeks when the woman was back in her home, she said that with me pushing, the barriers had been broken. She would be spending the holidays with family and how much she appreciated the two son-in-laws having worked with her. She was able to use the computer, the grandchildren were chatting with her four or five evenings per week, and that was something to relish. I have not needed to assist her and told her that she was a fast learner.

She said that in the week that she was with them, the oldest grandson had made sure that she could operate it. Then the weekend she came home, they had set everything up and because they had the connection installed the week they replaced the furnace, she was ready to use it. She even said that the son-in-laws were paying the cost and telling her to use it. Even her daughters were using it when they had time to chat with her. Then she said that one of the daughters would be home the coming week for the first time since they had left to go to college.

For this woman, I could now see happiness that I had not seen since I started to see her several years ago. Even the elderly couple are more at ease and have said it is good to see the grandchildren once or twice a month. I have noticed that there is more food in the house and the son has been home once a month to make sure that they have their medications. Even their son-in-law has been home later in the month to check on the food supply and both bring cooked food when they come. Then on top of all this, they have been taken to the dentist and doctor when needed.

I am just happy the couple and the elderly woman are seeing family more frequently and no longer have the social isolation from family at least. If you know of elderly people isolated or have elderly family members, do them the courtesy of visiting them regularly, seeing to needs if possible, and being a good friend or relative.

November Is Not the Only Month to Advocate

This blog has me thinking about diabetes advocacy. While most people in the diabetes online community are blogging the entire year, diabetes advocacy seems to enter the conversation only during the month of November. I admit I am guilty of this.

The month of October was breast cancer month; however, I remember seeing something about breast cancer almost every month. Those promoting breast cancer awareness seem to find ways to put this in the public's face every month.

Is it because diabetes shares the month of November with Alzheimer's disease that we are out done? I often see more promoting Alzheimer's disease than I do about diabetes. In prior years, I have seen more websites promoting Alzheimer's disease than promoting diabetes. Among these sites was Health Central, which this year is rather tame, compared to prior years in support of Alzheimer's disease. Yes, I am looking for information about diabetes more than Alzheimer's disease, yet Alzheimer's disease seems consistently to out do diabetes in publicity.

In reviewing several other diseases, I can see a pattern emerging. These other diseases have a distinct advantage because they have one national organization doing all the promoting and a concentrated cadre of people seeing that the message is out in front of the public.

In the community of diabetes, we have several organizations going in several different directions and constant battles for funds, most of which is supplied by BIG PHARMA. They stifle the promotion for educating the public about diabetes.

If you disagree with me on the following points, then you will have to disagree, but I feel this needs to be part of the discussion. For diabetes organizations the following need to be considered – the American Diabetes Association (ADA), the American Association of Clinical Endocrinologists (AACE), the American Association of Diabetes Educators (AADE), JDRF, and the Academy of Nutrition and Dietetics (AND). The last one needs to be included even though many provide services to other diseases, but we hear about them in pronouncements from the ADA and AADE.

Then because many within the following professions treat people with diabetes, we could consider the American Medical Association, the Society of General Internal Medicine (SGIM), and the American Academy of Family Physicians (AAFP). Because the last three groups do little to promote understanding of diabetes and do more to harm patients with diabetes, they will be excluded from further discussion in this topic.

I could say the same about the ADA and the AND, but they have their own agendas and do not have the best interests of diabetes patients in their actions. AND is a puppet of BIG FOOD and is attempting to monopolize who can teach nutrition and criminalize other nutritional professions. The ADA has their own banner and colors for American Diabetes Month. The ADA does not support unity for promotion of diabetes awareness and attempts to take credit for activities of other organizations. The ADA only promotes what they do because they are for the doctors and not the patients.

Then we come to the AADE and they feel they are exclusive to having the knowledge about diabetes and will not open the doors to help others teach anything about diabetes. Peer lay workers have proven more effective in assisting people with type 2 diabetes bring diabetes HbA1c levels down, but they are ignored as much as possible by the AADE. They do support one symbol for diabetes awareness and that is to their credit.

The AACE rather stands alone because the organization has strong ties to BIG PHARMA (like the ADA) and seldom takes part in support of diabetes awareness during any month. Even after making loud noises and having a page for reliable diabetes websites, they took down the page after having it up for less than 12 months. Even with their current leader saying type 2 patients should rely only on A1C from their doctors, at least they let someone else speak for them in “Choosing Wisely.”

The JDRF also stands alone in their promotion of diabetes awareness and does use the symbol of the International Diabetes Federation (IDF) to promote diabetes during the month of November.

None of the organizations promote diabetes awareness in any other month unlike the other diseases and their organizations. I do not have any answers of how to bring the organizations together for unity in the promotion and advocacy of diabetes awareness for the month of November, plus the rest of the year. Until this can be accomplished, diabetes will continue to be the unpromoted disease needing more awareness. Diabetes patients will continue to suffer because of this lack of unity and the government will continue to decease funding where they know few objections will be raised.

Blood Glucose Test Strips, Coding

One of the questions I have needed to research the last few weeks arrived in the month of August and asked why each vial of test strips had a code that needed to be entered into the meter. I knew this was true, but not a question I had all the answers to or the reasons behind this requirement. Then the question expanded to meters not requiring coding and why. This I did know, but I will cover that later in the blog.

Each test strip manufacturer has a proprietary method of coding to match the test strip to the meter. This is their method of making sure that other test strips are not to be used with their meter. This is also the reason you are told to use the container the batch came in until the test strips are used up to 1) not ruin the strips and 2) confuse different batches with different codes.

To cover as many meters as possible, the following are some of the reasons for the coding:

#1. For some meters and testing strips, the vial comes with a “code key” that you insert into the meter. This key automatically codes the meter to the strips you are using from that container. When you start a new container of test strips, you recode the machine using the new “code key” you receive with that container of test strips.

#2. Some meters require that you manually change the code to match the number on the container of test strips. Generally, for these meters, press and hold the "C" button until the correct number shows on the screen, then release the button. Your glucose meter is now coded for the container of test strips you are now going to use.

#3. With many of the newer meters, the meter will code itself immediately upon insertion of a test strip. This eliminates the need for a code key or manual re-coding of your meter. The test strip has the code embedded in the strip for the meter to read when it is inserted.

#4. Often these codes or other information (often alphanumeric combinations) on the box with the test strip container is used if a recall of test strips is made.

What is coding and what are the purposes of coding?

Several years ago, I remember that there was an article discussing this and if I remember correctly, coding was used to correct testing accuracy. If a batch of test strips were reading outside the acceptable range, such as 15% too high from the standard, then coding would correct for this and subtract the 15% to give the correct reading.

Now some of the manufacturers have moved to no coding required because the coding chip is in the test strip. This means that the strip is automatically adjusted to the meter for accuracy by checking the strip electronically.

Blood glucose test strips are a part of life for people with diabetes. These tests strips are available online from many companies. The newest ones normally do not require coding, but the older ones would still require patients to understand codes and code the meter to obtain accurate results.

The greatest problems with coding the meter are:

#1. User forgets to recode the meter when using a new vial of test strips, and

#2. The user enters the incorrect code.

Then the problems can begin when the accuracy is compromised. Generally, the incorrect code means the risk of hypoglycemia increases because the insulin dose was too high. Seldom the reverse can happen and hyperglycemia results. Either way the risks have increased and this is the main reason to not use the meter and test strips requiring coding. I have no problem with the code key, but even then, errors can be made.

Other interesting blogs you may enjoy reading include this one and this by David Spero. Then David Mendosa has this blog on operator errors on Health Central.

Insulin Is Not Punishment, But Best for Diabetes Health

Do I believe this, yes, definitely and I advocate for this. Too many doctors use insulin as a threat to keep people with type 2 diabetes on oral diabetes medications. Because of the American Diabetes Association and the American Association of Clinical Endocrinologists, these doctors are taught that oral medications are the first line of treatment. And, these two organizations preach this to all and emphasize this repeatedly.

What I do not understand is where is the clinical evidence to justify this? Sadly, this evidence is lacking and they are doing this at the request of pharmaceutical manufacturers. When the officers of both organizations take payments from pharmaceutical manufacturers, they cannot be trusted in what they declare is best for people with type 2 diabetes.

Given the unsurpassed efficacy in the management of diabetes, insulin is resisted and feared for its risk of side effects. Yes, hypoglycemia is a very real concern, but if people would be more careful in cutting the carbohydrate intake until they have adjusted to insulin, weight gain can be minimized. Many providers (doctors) use insulin as a last resort therapy and patients have gone along with them.

Some doctors force patients to stay on oral medications until there is a poor prognosis, insulin is required, and the insulin is presented as a form of punishment for poor self-management. Doctors doing this should be banned from the practice of medicine.  Education, which these doctors refuse to use, is the main reason for patients resisting insulin.

Of course, the fear of needles exists, but these can be overcome with patient education. With the new thinner and shorter needles, education will often put these fears to rest. Education about the newer insulins of today that are not animal or human based, but analogues can be the appropriate agents to improve glycemic management, better adherence to treatment, and lower healthcare costs.

While I will never use insulin pens, it is known that many patients do prefer them because they are easier to use, more discreet, and deliver a more accurate dose of insulin. With proper education, they are associated with greater adherence and better diabetes management when compared to vial and syringe use.

Insulin therapy should never be the medication of last resort. I find it easier to manage my diabetes with insulin and will never consider oral medications as being safe except for metformin. There are just too many side effects that are adverse with most oral diabetes medications. Even with metformin, the one thing to be careful of is vitamin B12 deficiency. Contrary to the doctors that claim to know nutrition, some people have problems with obtaining B12 from natural or food sources.

Alogliptin, the Latest DPP-4 Inhibitor

I have to be disappointed in my research sources. My (what I thought was my best source of oral medications) resources have turned out to be a big disappointment to me. I had been relying on the National Diabetes Information Clearinghouse (NDIC), which is part of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH), and a division of the U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES (HHS). Apparently, the secretary of HHS, Kathleen Sebelius could care less whether the NDIC is kept up to date.

I am finding more and more information in other sources and finding it necessary to maintain separate files to keep up with many of the FDA approved oral medications. A good example of this is the latest Dipeptidyl Peptidase-4 (DPP-4) inhibitor to be licensed in the United States for the treatment of type 2 diabetes, alogliptin (Nesina, Takeda Pharmaceuticals), has been launched in 2013 and is the fourth DPP-4 inhibitor now approved for use.

“Three formulations of alogliptin were approved in January; as well as Nesina, the fixed-dose combination of alogliptin and metformin hydrochloride (Kazano) and alogliptin and pioglitazone( Oseni) are also now available in for use with diet and exercise to improve blood glucose control in adults with type 2 diabetes. The last two are mixed or combination medications, which I missed in my blog, back on October 30 and Nesina belonged in my blog on November 1.

Embarrassed? Yes, and there may be other medications that I have let slip through the cracks. I have not included medications approved in other countries, even though I have readers in other countries. I am not prepared to monitor every medication as I do not have the resources to do this, but I do apologized for missing several approved in the USA.

“DPP-4 inhibitors have recently been linked to a scare about a potential association with pancreatic cancer. The latest data, however, suggest there is no confirmed link yet, but that only time will tell whether this continues to be the case.

The alogliptin/metformin combination will carry a boxed warning about the risk for lactic acidosis. Two post marketing studies will be required for this formulation. For alogliptin/pioglitazone, the FDA is requiring enhanced pharmacovigilance for severe adverse events. And, as with pioglitazone, it will carry a boxed warning for heart failure.”

Causes of Morning Highs

Do you have morning highs? I used to, but once I got my insulin adjusted, I have been able to get back to readings between 78 to 105 mg/dl. I would never accept morning blood glucose levels up to 130 mg/dl. Granted your levels may be different and if you are comfortable with them, then good.

There can be many reasons for having high blood glucose levels in the morning and some of them are:

#1. The dawn phenomenon that results from your liver dumping blood glucose into your system to assist in waking up.

#2. Eating the evening meal late with too many carbohydrates.

#3. Having a snack before bed that was larger in carbohydrates than normal.

#4. Having too low a dose of medication for the evening meal.

These and other factors can cause an increase in morning blood glucose levels. This should cause you to talk about this with your doctor to see what may be possible. The following are some points to discuss with your doctor.

#1. Often an adjustment in medication dosage will be sufficient, but not always.

#2. Sometimes a change in medications will be necessary.

#3. A change in lifestyle habits may sometimes be all that is needed.

#4. Even a change in sleep habits and getting the proper length of sleep might be the answer.

The above is for people on oral diabetes medications. While some of the above points will work for people taking insulin, here are some points to discuss with your doctor if you are on insulin.

Note:  This is where the saying "what works for you, may not work for me" is important to remember.  According to the "experts", people on insulin should not have the dawn phenomenon.  Why I need to be the exception is no longer puzzling and I have adapted.

#1. If you are on long acting insulin (generally Lantus or Levemir), discuss splitting the dosage into two parts, 12 hours apart. Some people will benefit from this as I have, while others that get the full 24 hours of benefit and not the 18 to 20 hours some of us receive, will have no problems.

#2. If on insulin, the bedtime snack should not be necessary and this needs to be discussed with your doctor.

#3. Do not let the doctor ignore your desire to have the correct blood glucose readings in the morning. Sometimes more medication may be the only answer.

This blog by Joslin may also give you more ideas.