Can Patients Learn to Describe Symptoms Better?

While this is addressed to other physicians at the annual meeting of the Society to Improve Diagnosis in Medicine, maybe it should be asked of patients. John Ely, MD, MPH, a family physician who is retired from the University of Iowa in Iowa City, has been a patient himself recently. He got to thinking about what a good patient could do. One of the things professors teach medical students is the eight characteristics of a symptom.

Dr. Ely wants patients to learn these to be able to communicate their symptoms clearly to aid doctors in making an accurate diagnosis.

"Dr. Ely listed these eight characteristics:

1. Where is your pain or numbness? This obviously wouldn't work for more generalized symptoms like fatigue or shortness of breath.
2. How long have you had the symptom? If it's something intermittent -- like a spell of chest pain -- how often does it happen and how long does it last? Is it gradually getting worse? Getting better? Staying the same?
3. What were you doing when you first noticed the symptom? Were you just sitting there? Arguing with someone? This is particularly important if the patient is having dizziness.
4. Are any other symptoms associated with this one -- for example, light-headedness or shortness of breath?
5. What is the "quality" of the symptom -- what does it feel like? "Patients sometimes say to me, 'What do you mean? It's just a pain, doc.' Well, is it like an elephant stepping on your chest, a fire in your chest, someone stabbing you with an ice pick, or what? I want to stay open-ended as long as possible, so [I usually say] 'Just tell me ... what it feels like,'" said Ely.
6. What is the "quantity" of the symptom -- for example, how bad is it on a scale of 1 to 10?
7. What aggravates the symptom?
8. What alleviates the symptom?"

Physicians want to know a patient's chief complaint, "and then we want a paragraph -- not six paragraphs and not a novel -- and in that paragraph you need to tell the doctor these eight things," Dr. Ely said.

If we could learn these characteristics, we could increase the productivity of our visits to the doctor. However, many patients will refuse to do even this.

Reasons patients refuse:

1. Insist on being a drama king or queen (happens too often)
2. Feel that they should depend on the doctor (want the doctor to ask questions)
3. Want to stump the doctor (these patients have heard about something on the TV and think they should be taking that medication – typical hypochondriac)

I could probably list more, but those are the three I have heard while sitting in the exam room waiting for the doctor. You can really be entertained through the walls sometimes.

Proper Education Important for Insulin

Apparently, certified diabetes educators (CDEs) do not know how to teach diabetes patients how to use insulin pens. Scary, I would not want to be one of the patients.

In this case, the patients were patients with type 1 diabetes and had repeated episodes of diabetic ketoacidosis (DKA) putting them back in the hospital. Common errors include:

1. Injecting in the same spot every time (reason – no pain)
2. Dial pen down to zero to force the insulin in (when pen supposedly jams)

Then the CDE states that “return demonstration and “teach back” are still the gold standard in problem solving re-admissions with diabetes complications.” To begin with, proper education should be the gold standard for preventing problems with re-admissions.

First, it should be explained what happens when the same spot is used for injections and not have this problem in the first place. This needs to be emphasized at the first few visits and not when there are problems, especially DKA. Scar tissue can happen with insulin pens and syringes and for people with type 2 diabetes. I know because I use syringes and after 12 years, I have many areas of scar tissue from multiple daily injections (MDI). I rotate areas for each injection and rotate within the areas to help prevent scar tissue, but I have developed scar tissue in several areas.

I know this when the insulin does not lower my blood after four hours. This tells me that the area has scar tissue and the insulin is trapped in the scar tissue and not getting into my blood stream to lower my blood glucose. It is speculation on my part, but I feel that as I age, the scar tissue will not heal as rapidly and I may have even more problems with the build up of scar tissue. I had been warned early on about possible scar tissue if I did not rotate areas and rotate within the areas. I also have the concern of not injecting rapid acting insulin near the long acting insulin, which would cause the long acting to be converted to short acting, and this could easily cause hypoglycemia.

Why people insist that dialing down the insulin pen forces insulin out, I do not understand. While I have seldom used insulin pens, I have never done this and when a nurse asked why I did not dial it down, I just said because I need this much and promptly pushed the injector. Whether she thought this would inject the insulin, I don't know and now I realize what it would have done.  I would have received less insulin.

What even surprises me more is that the CDE is from an Iowa town and did not properly teach equipment use when she should have. I know many people do not ask pharmacists when they encounter new tools, but that is one piece of education I would not ignore and not depend on CDEs for the necessary education. Many are more interested in telling patients how many carbohydrates they should eat and how low fat their meals should be.

Our Second October Meeting

On October 21, we had Brenda's daughter, Allison, present on low carb/high fat food plans. We only had one member absent and Allison started after Tim introduced her.

Allison stated that low carb/high fat could vary from person to person. The grams of carbohydrates can vary from a low of 30 grams to about 100 grams per day. She next said that the number of grams should vary depending on what your meter tells you works for you. She said that some people set 140 mg/dl as the upper limit for post prandial meter reading.

She continued that this is even what I recommend as the upper limit. She said that some of you have lower limits, which are good for you, and this is what each individual should do. Next, she asked for a show of hands, telling people if they had not set an upper limit not to raise their hands when she said a number. She started at 140 and six hands went up. When she said 130, another six hands were raised, and 120 had 11 hands raised. Then she said 110 and 12 hands were raised. When she said 100, no hands were raised. She then asked if there were other numbers, several said 115 and a few said 125. Allison said there is a good mix for a group this size.

She then said that food plans should not be a one-size-fits-all food plan and I am happy that while many are using the same food plan, there are variances that can be worked with. She continued that unlike dietitians, she and Suzanne worked with what the person wants and may make some suggestions that will be workable. Your blood glucose meter should be your friend and used regularly by testing in pairs. Once the newer members have their food plan settled, then you should have one or both of us back to help refine it and create a balanced food plan.

She said we don't demand you eat a certain number of carbohydrates, and we don't dictate what fruits and vegetables you consume. Most important we don't demand that you include whole grains in your food plan. She continued that she might consider them for a few individuals that show her that the quantity they consume does not exceed the blood glucose goal (she said that she only has two individuals that have this possible).

Next, she asked if some were taking vitamin and mineral supplements. She was a little surprised at the number of hands raised. Next she asked how many had the cooperation of their doctors and been tested for the supplements they used. Only about half of the hands went up. Now she had a concerned look on her face and asked why they were not being tested. The one comment she heard was that they were natural and didn't need to be tested.

She then stated that for some people, the supplements could conflict with medications and cause more severe side effects. She asked Tim to put the slide up and she asked me what the slide meant. I said it is grapefruit and tells us that it can cause some heart, statin, and blood pressure medications to become toxic to our systems and put us in the hospital and if not avoided might kill us.

Next, she asked Tim for the second slide and she said that even Bob knows why we should be tested and where to research for medications the vitamin or mineral may cause prescription medication conflicts. You even need to take some of them only under the supervision of a doctor. She stated that Bob and the older members are aware of why you need to be tested and that is why you need to read the blogs posted about supplements and know where to research information for yourself.

Then she asked Tim if the blogs with links they should use could be included in an email. Tim said that when she gave him the slides, he had started composing an email and would finish it and send it to all members. Allison asked if he would include her as well as she said that she needed to use these for other patients she helped. Tim agreed and she looked at me, and I said they are available for everyone to read.

At that point, she open the discussion for questions and she spent the next half an hour answering questions, as did the older members. She thanked Tim for putting up the slides and then she thanked me for listing the blogs I did for her.

She talked with Tim and thanked him for having her do a presentation. Tim said she covered some important points many of the members needed and we would be asking her again.

More Causes for Elderly Falls

When it comes to causes for elderly falls, the causes are all over the place and depending on the type of doctor, they will tell you what causes them (in their opinion) very emphatically.

The following are some of the causes:

1. Over medication (often for hypertension)
2. New glasses
3. Abnormal binocular vision disorders
4. Non-adherence to medications
5. Loose rugs
6. Unseen objects
7. Systemic infection
8. Antidepressants
9. Dementia
   10. Delirium

Many falls are blamed on 5 and 6 above and physicians like to pick these. Falls in older adults are not accidents. Most of the time, they are related to a wide range of risk factors including older age, disabilities, muscle weakness, and many different medical conditions. The more risk factors you have, the more likely you are to fall.

I know a couple of elderly people (now living in nursing homes) that were afraid to move around their homes because of their fear of falling. Yet, for several years after moving into a nursing home, they lost their fear of falling. In talking with both individuals, they both expressed that they were not on as much medication and lower doses of other medications. One said she was on less medication for high blood pressure and the other person said he was on no antidepressants now.

The latest cause according to doctors is systemic infection. While this may be a cause for some falls, I see this as another method to over medicate the elderly and increase the risk of falls. This study, yet to be peer-reviewed, is one I would question. I can understand inner ear infections that cause a loss of balance.

Now is the time when we need more studies that can actually determine the cause of falls, not the supposed causes of falls. The list of possible causes may not be complete, but provides many of the causes.

Is Diabetes Perfection Possible?

This is why I read other bloggers. Every once in a while, an idea by another blogger speaks to me in ways that I was not prepared for and gives me an idea for a blog of my own. Ashley who writes at Bittersweet Diagnosis covers the topic of diabetes perfection because she was terrified of the complications. When she realized that striving for perfect blood glucose levels 24-7 is not realistic or sustainable, she realized that diabetes has taught her that diabetes shouldn’t hold you back from living your life.

We can all do our best to minimize the wild swings in blood glucose levels and we should do this, but to obsess about the levels is not good and generates stress which harms our management. I am learning that by getting the sleep my body needs and minimizing the stress in my life, my blood glucose levels are coming more into the range that pleases me.

Then by converting my food plan more to a low carb/high fat plan, I am starting to lose weight and my insulin needs are becoming less. Nothing significantly less yet, but I am seeing a change for the better.

Am I telling you how many grams of carbohydrates you should eat? No, I am not, as each person needs to use their blood glucose meter to test before and after meals (called testing in pairs) to discover for yourself the level you need to consume. I suggest starting at 100 grams total carbohydrates for the day - I suggest about equal carbohydrate grams per meal. Then by testing, you should adjust this up or down based on the testing results.

Why am I suggesting this? I know that until your body becomes comfortable with the number of carbohydrates, you will feel hungry, especially if you do not increase the amount of fat you consume. I know from experience that many doctors are still promoting low fat and some become very upset when patients increase the amount of fat consumed. That folks is why the food plan is named low carb/high fat (LCHF). Do keep the amount of protein at the level it has been and do not increase, especially if kidney problems exist.

Then over a period of a month, gradually adjust the grams of carbohydrates down or possibly up depending on what your meter is telling you. This from my blog on Sept 17 will explain, “eating to your meter” and this from the same blog will help further explain LCHF.

Because everyone is different, you cannot count on following what someone else has for numbers. Therefore, you must find what works for you, as this is the closest to diabetes perfection you will come. Just because someone else can obtain better or more consistent blood glucose numbers, you should not try to copy them as you may be able to better their numbers or maybe not obtain as good a set of numbers.

Forget about the perfection someone else obtains and work for your own perfection. It is often much easier to meet your own goals than another persons goals.  Remember that you are unique and must find what works for your body.

Communication Loses by Physicians

Several members of our support have changed doctors this summer, but most are still not happy with the current ones. Allen has had the most trouble, as none of his two new doctors believe he could have an A1c of 5.0 percent. He has been accused of having two or more meters and his last doctor asked him if he is on dialysis or has had a blood transfusion recently.

In both cases, Allen has explained that he is eating very low carb and high fat and both doctors won't believe him. Now he is planning to see Dr. Tom, as he is tired of not being believed. Now both Ben and Barry are changing doctors because they both had A1cs below 5.6 percent and their doctor would not accept that they could be that low. When both said, they were using low carb and high fat food plans, the doctor told them that they needed to get away from the high fat and go with a low fat plan. When both said they were having good lipid panels and were feeling great, the doctor told them that he was prescribing a statin anyhow.

Barry said he would not take a statin and the doctor could learn the advantage of high fat or they would be finding a new doctor. Ben says the doctor was most uncooperative and they are looking for a new doctor.

Jerry said he is happy that he is now under 6.0 percent and with his foot ulcers now healed, he has the proper footwear and is feeling the best in a long time. Even James is happy and had his wife tell us that his last A1c was 5.8 percent. He did say that he and Jill are both moving to lower carb and higher fat meals and he is hoping to bring his A1c down.

Even Sue is sputtering about her doctor wanting her to go back on medications. Her last A1c was 5.4 percent and while it was up, she felt that medication was not what she needed.

The group of us were talking about the doctors and why they seem to want to bully those of us that are older and think they can get away with doing this. None of us present were happy with communications by our doctors and felt that doctors are not keeping up with the needs of people with diabetes.

As we were getting ready to leave, Dr. Tom came in with his family. After they had seats, Dr. Tom came over and asked us how we were doing. Allen told him we had a bad taste from doctors at the moment, but it was not him, just that we felt doctors were trying to bully us and several of the group were upset that their doctors were pushing high carb and low fat. Allen then asked if he could become a patient of his. Barry and Ben said the same would apply to them. Dr. Tom said to call his office on Monday or stop by and get the necessary papers to have their files transferred.

With that, we left and wished his family well as we passed their table.

Just Diagnosed with Type 2 Diabetes?

When you received your diagnosis, how was it done? Did the doctor just state it as a matter of fact or was there a lot of other meaningless information that you were given. Some doctors do it right, but most can't say the word diabetes. Why – I don't have a clue. These same doctors use technical gibberish to mask the true word for any disease.

When you realized that you had type 2 diabetes, what did you do? Did you leave the panic panel intact, or did you punch holes in it and tear it apart? Some really damage the panic panel and others never even see it. They move from the diagnosis to managing their diabetes. Maybe later they have denial or mild depression, but at the start they are into managing diabetes and learning all they can about this chronic invisible disease. Shock or anger never enters their thoughts.

Other people feel shell-shocked after the diagnosis of diabetes. This is a perfectly normal reaction to news that has just turned your life upside down. Not only do you have this distressing new burden added to your life, you have to figure out how to deal with it.

Most of the newly diagnosed are starting from scratch and lack of knowledge about diabetes. Some writers advise relying on your doctor for information on diet, exercise, and medications. What many doctors refuse to recognize is that the day of diagnosis is not the day to give out a lot of verbal information. Too many doctors use this as the day to abuse their patients and accuse them of causing their diabetes. Then they set unreasonable goals for their patients and tell them not to fail in achieving these goals.

Many patients try and when they can't achieve the doctor's goals, completely give up and let diabetes take over their lives. This is how doctors make diabetes progressive and the complications become a reality.

This is one reason I always say to not accept the goals that a doctor says you must attain. I would urge you to tell the doctor you want to learn about diabetes, but you will discuss goals at the next appointment. Good doctors will accept this and maybe suggest alternate goals that may be attainable. I would urge everyone to learn about goals and how best to meet them. Always make small improvements to your goals that are easy to attain and this will help you be successful. Success always encourages more success,

The important point to remember is this – the diabetes is your diabetes. Learn to accept this and managing diabetes can become much easier. As you learn about diabetes, you need to remember you are unique and what works for someone else may not work for you. In type 2 diabetes, there is definitely not a one-size-fits-all therapy and finding your custom fit for your type 2 diabetes will be your main task over the first several months.

Like anything we do for the first time, we start out as novices. This means that it takes time to get comfortable in our knowledge. Yes, you are trying to learn rapidly and become an expert based on your circumstances. Others may have greater medical knowledge of your condition, but you will have a fine-tuned, hard-won intimate knowledge of your unique version of type 2 diabetes.