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Six Things People with Diabetes Rarely Tell Their Doctor

Lady holding her fingers to her lips as if saying, "Shhh!"

This post covers a variety of behaviors and lifestyle habits that people with diabetes rarely tell their doctor. I need to state a disclaimer before diving into this post. Please note I am not condoning the activities and actions I’ve shared below. I’m simply sharing what I know to be true and what I see occur frequently in the diabetic community. Please follow your doctor’s instructions exactly and do not deviate from them.

Most of you know by now that I’ve had Type 1 Diabetes (the auto-immune, insulin-controlled type) for over 45 years. In the time I’ve had it, I’ve devoted years of research to the disease of diabetes. I have also dedicated myself to understanding how diabetes affects a person’s emotions, not just their body. One of the most fascinating things I’ve discovered from chatting with thousands of people with diabetes is that there are some very common habits many of them share, but which few of them tell their medical staff. Some of these habits are harmless, while others could be potentially harmful.

Why do diabetics break the rules? The most common reason is because the rules don’t work for them. Although MDs live in a world of black and white absolutes, every diabetic knows that much of what they’re told about controlling their disease does not work for them or apply to their specific case. Their body never read the diabetes text book and doesn’t do the things the text book says it should. Most of us wish our doctors understood that control is highly individualized and that not all care guidelines work for all people. People with diabetes soon learn which topics are “safe” to discuss with their doctor and which will earn them a quick lecture. They grow weary of being told they’re “wrong” or being told one of the control tactics they rely on “can’t possibly work.” The truth is that every person’s body and lifestyle is highly unique and requires a unique approach to maintaining control. What works for me may not work for anyone else, and what works for them may not work for me. Doctors don’t have time to consider these “gray areas,” so diabetics keep this “secret info” to themselves.

The list that follows includes the top six things I’ve found diabetics rarely tell their doctor. Do you know of others? Please share!

I take a lot of supplements to help control my diabetes

This one is perhaps the most common. I hear this not only from diabetics, but from many different people with many different health conditions. Why do people not tell their doctor about their supplements? People I chat with share one of three basic reasons: 1) They are tired of their doctor telling them the supplement doesn’t work (even though using it has improved their health); 2) They are taking the supplement(s) instead of taking a prescription (see the next point); or 3) They know their doctor doesn’t believe in supplements and don’t want to risk upsetting him or her.

Obviously, it is IMPERATIVE to tell your doctor about every supplement you take. Your MD needs to know what you’re taking so that s/he can advise you about any potential interactions with your prescriptions. A growing group of MDs is learning about supplements and accepting their use. If yours is not one of them, perhaps it’s time to find one who is more accepting of the lifestyle you’ve chosen.

There are a wide variety of supplements that can help people with Type 1 and Type 2 diabetes maintain better control. However, these supplements must be very carefully researched before being added to one’s regimen. It can be dangerous for a Type 1 diabetic to begin taking supplements without checking their blood sugar more frequently. No one taking a prescription medications should begin taking a supplement without first discussing the potential interactions with their doctor or pharmacist. My favorite resource for researching potential interactions between prescription medications and natural supplements is the PDR for Non-Prescription Drugs, 33rd Edition.

I don’t take some of the prescriptions you write for me

This is another very serious item. If you are not going to take a prescription your doctor prescribed, you must tell him or her. It is your choice to not take a prescription, but you owe your MD the courtesy of being honest about it. When you share this information with your MD, take your research, be direct without being emotional, and make it clear your decision is final. If your MD has an issue with this, perhaps it’s time to find someone who is a better fit for your needs. (On a side note, there are times it may be better to take the prescription. Please do significant research before deciding to not take a prescription. As an example, I take insulin. There are no viable alternatives that are 100% effective, so I consider myself blessed to have it available.)

I don’t use alcohol when I take my shot or check my blood sugar

I can’t say that 100% of diabetics fall into this category, but a huge number of them do. Remembering to pack alcohol swabs is just one more thing on an already long list of items that have to be carted around on a daily basis. Many diabetics have found – contrary to what their MD told them – that not using alcohol doesn’t make much difference. They don’t wind up with skin infections, and their insulin continues working perfectly. It’s a personal choice. (This is only true if they are healthy and are under good control.) From a bird’s eye perspective, I don’t think this is a big deal, provided their blood sugars are under good control, they don’t have any other auto-immune conditions, and they are not in a dirty environment filled with toxins. It’s always best to use alcohol, but the likelihood of developing a complication if none is available is fairly small.

I use my syringes and lancets more than once

Most people are horrified to learn that many diabetics re-use their syringes. Let me make it perfectly clear they are not sharing their needles, they are simply using them twice in order to save money The same is true of the lancets used to prick their finger to check their blood sugar. Is it the best way to treat their disease? No. Is it one that has a huge negative effect? Not really. I don’t recommend it, but based on the hundreds of diabetics I know who do this, the effects are too small to even be measured. Re-using syringes is never a good idea, but the effects will probably be minimal for someone who is under good control, is in a clean environment and who does not have other auto-immune conditions affecting their immunity.

In all honesty, if a diabetic cannot afford syringes and lancets, I’d much rather they re-use them than not take insulin at all. A diabetic who needs insulin and stops taking it will wind up in the hospital and deathly ill very quickly. Diabetics who re-use needles run a risk of infection and run a risk of injecting bacteria into their insulin bottles. The potential for disaster is huge, but the fact is that very few ill effects are seen. I don’t advise re-using syringes, but if you’re in a situation where you’re forced to re-use one, please do not exert much energy to worrying about the after-effects. Again … this does not refer to people sharing needles. I’m not talking about a family of diabetics using each other’s syringes. I’m talking about an individual who re-uses their own syringes.

I leave my insertion set in for more than 3 days and refill my reservoirs

This item applies to people with diabetes who use an insulin pump. Insulin pumps use a reservoir that looks somewhat like a short, squat syringe with no needle. The diabetic fills the reservoir manually and then inserts it into the pump. One end of the reservoir is connected to a long tube. The other end is connected to the body via an insertion set. The insertion set contains a very tiny plastic cannula (a form of tiny needle) that is inserted into the abdomen, arm or buttocks. The pump injects insulin into the diabetic’s body on a continuous basis. The amount of insulin infused into the person’s body is controlled by information the diabetic (or his/her support staff) programs into the pump. Programming the pump and inserting the insertion set is a very simple process. An insulin pump is the closest thing we have to a functioning pancreas.

Most pump companies instruct their users to change insertion sets and reservoirs every three days to avoid infection and to ensure insulin delivery continues at the correct dosage. Many diabetics I know leave their insertion sets in for longer periods. I also know a few who refill their reservoir instead of replacing it. These diabetics swear they can’t tell a difference. (One told me she can leave her insertion set in for more than 10 days before infection develops. I would say that’s pushing the limit on the insertion set’s ability to maintain adequate delivery.)

Why do they do it? It’s very simple. Many diabetics are uninsured, and many are underinsured. Many insurance companies have changed their deductible program and have raised deductibles above $10,000 per family. This means that most diabetics receive NO assistance with their pump supplies, in spite of having insurance. On my insurance plan, our regular prescriptions are filled for a co-pay and don’t apply to the deductible, but my insulin pump supplies do not. My insurance company will not pay a dime toward my supplies until my family meets our $10,000 deductible. There is no logic behind this, as helping their insureds maintain good control is the best way insurance companies can avoid more expensive claims. Almost four billion dollars each year are spent on diabetic amputations. That number could potentially be lowered if insurance companies would re-think their approach to handling insurance claims for basic care needs.

A 90-day supply of infusion sets and reservoirs costs anywhere between $500-900 dollars. That’s a huge expense for many people. It is an expense that motivates many diabetics to stretch a 90-day supply of materials into a 180-day supply or longer. They don’t do it as a form of rebellion; they do it because they have no other choice.

The diet you told me to follow kept my sugars sky high, so I found a new one that works for me

I hear this more than any other concern voiced by people with diabetes. A mother with a 10-year old recently came into my office and said her son’s dietitian recommended he eat seven servings of high-glycemic carbohydrates per day. She said he used over 100 units of insulin per day eating that diet because his blood sugars were so high. He also felt horrible most of the time. I worked with her to create an eating plan her son could easily work into his daily activities. The plan I recommended focused on low-glycemic carbohydrates in smaller quantities. Within two weeks, this young man’s energy had returned to normal levels and his insulin needs had lowered to around 60 units per day. (Lowering the amount of insulin needed to maintain control is helpful because of the hormonal side-effects of insulin.) I’ve also had clients come to my office who said they argued with their diabetes educator because they felt the amount of sugars and carbohydrates they were eating was excessive. These patients typically get a slap on the wrist and are told they must obey. Sadly, many who find they can maintain better control using a different eating style than the one their doctor’s staff recommended are labeled “non-compliant.”

This brings us back to individuality. Every person’s body responds to carbohydrates and other types of foods in different ways. Most people with diabetes know which foods affect them more than others. (For me, a quarter cup of white rice will send my blood sugar through the roof in about five minutes. I can’t eat it, even though it was one of the main foods recommended by the diabetes educator I saw many years ago.) It is impossible to use a “cookie cutter” approach to eating styles for people with diabetes. Each person must start with a basic recommendation and then tweak it to fit their needs. Many endocrinologists and their staffs are not willing to allow their patients to deviate from their strict guidelines. This is sad, because it makes many diabetics think they have to hide things from their endocrinologist.

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I recognize and fully expect this post will generate controversy. I’ve shared the truth, but I know many will react in anger. I’m ok with that.

Do you have diabetes? Do you hide things from your doctor? What do you think needs to change in the world of diabetes to encourage more open dialog between endocrinologists/doctors and people with diabetes? I firmly believe change occurs one person at a time. Let’s start here!

*Links in this post are affiliate links shared to provide a visual representation of the mentioned item.

Diabetes Myths that Need to be Busted

There are a multitude of diabetes myths still perpetuated and shared as “fact” even though they are blatantly false. Myths get perpetuated in odd ways. Case in point: the Juvenile Diabetes Research Foundation (JDRF) recently allowed Krispy Kreme donuts to sponsor a fundraising run. During the run, participants – many of whom have diabetes – ran a single mile, ate a dozen donuts, and then ran a mile back. The JDRF spokesperson defended this run by stating that “food doesn’t Debunking Diabetes Mythscause Type 1 diabetes.” Guess what? Studies done in Finland since 1991 prove she’s wrong!

I was blessed with Type 1 Diabetes in 1967 and have been researching it through life experience or active study ever since. I’ve studied the mainstream approaches to Diabetes control and have also studied and experimented with many natural wellness approaches. My desire is to help people with any form of Diabetes live life abundantly and realize that having Diabetes doesn’t mean their life is over. Following are a number of myths related to diabetes that need to be busted right now:

Myth #1: Type 1 Diabetes is an autoimmune condition that has nothing to do with food

Fact: While Type 1 Diabetes is indeed an autoimmune condition, autoimmune reactions are caused when the body secretes antibodies that attack cells of the body. Studies have connected dairy antibodies (antibodies the body produces to cow milk, not human breast milk) to an attack on the beta cells in the pancreas that secrete insulin. Countries having the highest intake of bovine dairy products (Sweden, Denmark and Finland) also have the highest incidence of Type 1 Diabetes in children. The connection cannot be denied. The studies found that children who were not given bovine dairy prior to the age of 7 months had significantly lower incidence of Type 1 Diabetes than those who were. My recommendation is to not give babies cow milk, cheese, ice cream or other dairy products prior to the age of 12 months. (Avoid soy, too, as other studies found that boys given soy formula had lower sperm counts as adults and that girls given soy formula developed breasts and began menstruating at an earlier age.)

The American Academy of Pediatrics Work Group on Cow’s Milk and Diabetes Mellitus issued this statement in 1994: “The evidence incriminating cow-milk consumption in the cause of type 1 diabetes is sufficient to cause the American Academy of Pediatrics to issue this warning, ‘Early exposure of infants to cow’s milk protein may be an important factor in the initiation of the beta cell destructive process in some individuals.’ and ‘The avoidance of cow’s milk protein for the first several months of life may reduce the later development of IDDM or delay its onset in susceptible people.'”

Having said that, let me add that dairy antibodies are not the sole causative factor of Type 1 Diabetes. Many other factors may be associated with Type 1 Diabetes, including viral infections, bacterial infections and some genetic factors. There is also some evidence that toxins in vaccinations may be associated with auto-immune over-stimulation that may contribute to Type 1 Diabetes. Genetic factors also play a role in whether or not a child’s body can counteract certain antibodies.

Myth #2: Only fat people get Type 2 Diabetes

Fact: I personally know several very thin, athletic people who have Type 2 Diabetes. Type 2 Diabetes is caused when the body develops insulin resistance, or when the body’s cells no longer absorb and use insulin as they should. Although insulin resistance is much more common in people who are overweight, thin people may also develop it.

The pancreas of most – not all – people with Type 2 Diabetes typically works as it should. It works so well, in fact, that it over-produces insulin in response to elevated glucose levels. The excess insulin in the blood stream causes the body’s cells to become “overwhelmed” by the excess insulin, which creates worsening insulin resistance. Please read my article, “The Top 3 Blood Tests Almost Everyone Should Request” for information about having your insulin level checked. Unfortunately, insulin is a fat-storage hormone, so excess insulin in the blood stream may make weight loss very difficult if it is needed.

There are multiple potential causes of insulin resistance, and every person with Type 2 Diabetes may have very distinct issues that led to their body’s resistance. The fact does remain, however, that people who are overweight and who eat diets which are extremely high in high-glycemic carbohydrates are much more likely to develop Type 2 Diabetes than those who are thin and who eat a more balanced diet. Luckily, many people with Type 2 Diabetes have reversed their insulin resistance and reduced or even eliminated their need for prescription medication simply by making a few simple lifestyle changes.

Myth #3: My doctor says I have “pre-diabetes,” which means I don’t need to make any changes

Fact: The prevalence of Type 2 Diabetes has become so high that a new term – Metabolic Syndrome – was developed for people who have the early stages of insulin resistance but who may not have highly elevated blood glucose levels. Those who are in the very beginning stages of insulin resistance, or “pre-diabetes,” often reverse insulin resistance by making simple lifestyle changes.

When I have clients whose blood work shows elevated insulin levels, I recommend the same regimen I recommend to people who have been diagnosed with Type 2 Diabetes. Placing a prefix before the word “diabetes” doesn’t mean there’s nothing to worry about, it simply means early intervention is needed.

Myth #4: People with Diabetes have to eat a very restricted diet

Fact: This myth floors me. People with any form of Diabetes need to eat a very nutritious diet, but not one that is severely restricted. I will admit that my research and personal experience with diet cause me to disagree with the typical regimen prescribed by the American Diabetes Association (ADA). The ADA encourages people with Diabetes to eat high amounts of carbohydrates and to avoid fats, stating that carbohydrates are essential for energy. I can’t tell you how many times I’ve had a client come to see me and claim their dietitian is trying to kill them. People with Diabetes can eat carbohydrates, but I encourage them to primarily eat low-glycemic carbohydrates that don’t require large amounts of insulin. Insulin is a fat-storage hormone, so weight loss is often dependent upon eating in a fashion that allows the body to produce less insulin. Eating in this manner may also improve insulin resistance, as a lower amount of insulin in the blood stream may help the body’s cells not be “overwhelmed” by it. For more information on effective eating styles for controlling glucose levels, please read: Why Mainstream Diabetes Diets Often Fail.

The typical eating style I recommend for people with any form of diabetes is highly personalized to meet the physical and personal needs of each person. I typically encourage the use of low-glycemic carbohydrates in somewhat limited quantities. I basically encourage my clients to use a similar eating style to that which I use. Why? Because the eating style I use – which is not at all restrictive – allowed me to cut my insulin needs to less than a third of what they were ten years ago and to reduce my Hemoglobin A1C from 8.5% to a typical reading of 5.7%. Hemoglobin A1C is an “average” of blood glucose levels over a three-month period. “Normal” levels are said to be between 4.5 – 6.0%. I know people who are not diabetic who have higher A1C readings than I do. Not bad for someone who’s had Type 1 Diabetes for more than 46 years! (On a side note, I recommend asking your doctor to run an A1C after age 40 simply to establish a baseline that can be used to spot any changes.)

The program I recommend to people who have insulin resistance or full-blown Diabetes is always very personalized. Cookie-cutter approaches don’t work. I customize the approach to be suitable for anyone of any age and any body size, including pregnant women and children – with physician approval.

Myth #5: I had gestational diabetes, but I’m no longer pregnant so I don’t need to worry about it

Fact: The incidence of developing Type 2 Diabetes is significantly higher for women who had Gestational Diabetes. Those women obviously need to make careful dietary changes while pregnant in order to maintain normal glucose levels and protect their baby, but should consider continuing to consume fewer carbohydrates and lower-glycemic carbohydrates after giving birth. Making post-partum dietary changes may help improve insulin sensitivity and may reduce the likelihood of developing Type 2 Diabetes.

Note: None of these statements were evaluated by the FDA and none are intended to diagnose, treat, cure or prevent any medical condition. This information is shared for informational purposes only and should never be used to replace standard medical care. Always check with your physician before making any changes to diet or lifestyle, and never adjust medication or begin taking supplements without your physician’s recommendation.

References:
Infant Feeding in Finnish Children <7 yr of Age With Newly Diagnosed IDDM. 10.2337/diacare.14.5.415 Diabetes Care May 1991 vol. 14no. 5 415-417.

Cow’s milk consumption, HLA-DQB1 genotype, and type 1 diabetes: a nested case-control study of siblings of children with diabetes. Childhood diabetes in Finland study group. 10.2337/diabetes.49.6.912. Diabetes June 2000 vol. 49no. 6 912-917

Infant feeding and the risk of type 1 diabetes. Am J Clin Nutr May 2010vol. 91 no. 5 1506S-1513S

http://healthesolutions.com/the-cow-milk-connection-to-type-1-diabetes/

Nature Immunology 3″, 338 – 340 (2002), doi:10.1038/ni0402-338

http://content.nejm.org 

 There is a Cure for Diabetes, Gabriel Cousens, multiple references.