Six Things People with Diabetes Rarely Tell Their Doctor
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.
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!
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