Frustrations of the Week

(Also posted at http://www.digitalcraig.me/2010/02/frustations-of-the-week/)


Today I found out how frustrating it can be when the so-called “specialists” and “experts” aren’t even up on the latest research in their own field.


When I was first diagnosed with Diabetes, I started taking a single medication and it seemed to really be helping. However, the first blood test that I took showed that I had high cholesterol/triglycerides (common in people with high blood glucose). As a result, my doctor prescribed me Niaspan (extended release Niacin). Immediately, almost all of the progress I had made since taking diabetes medication disappeared and left me almost in the same place I was before (fasting blood glucose around 300 mg/dL).



I told my doctors of the problem and that I suspected Niaspan as the culprit because I had read somewhere that was a possible side effect. They insisted it was temporary and it would come back down. Almost a year later with no further progress on bringing down my blood sugar, I came across a discussion of a study that suggested that Niaspan increases insulin resistance which results in loss of glycemic control. Finally, after much arguing and attempts to guilt-trip me, they relented and prescribed me a statin instead.



Since switching from Niaspan to Simvastatin, my blood sugar readings have come down dramatically - 168 mg/dL so far this month. This is the lowest average I’ve seen, even pre-Niaspan. I’m certainly looking forward to my next A1C to see if it’s come down from the 8.8% in December.



Some of the trust I had in my regular physician has been lost for two reasons. First, he was not aware of the study and second he had the “I know better” attitude and refused to listen to me as the patient. Not being aware of the study I can forgive, he’s not a specialist in this disease but to not listen to the patient is a serious problem. My physician prescribed additional expensive, no-generic-available medications to treat my still-high blood glucose that most likely occurred because of the interaction with another medication he prescribed. So, I decided it was best to go see an Endocrinologist for a 2nd opinion on my course of treatment.



The appointment with the Endocrinologist went pretty well and she acknowledged that Niaspan can have the effect of increasing insulin resistance in some people. She agreed that the medications I’m taking are the right ones and we discussed some different options for getting off of some of the, assuming that I can meet my weight goals. However, there were a few things that came up that concerned me about her.



First, she said that being overweight causes diabetes. This is a toxic myth because it blames the victim. It sets the expectation with medical professionals who are taught this nonsense that you did something to get yourself into the situation and that you likely won’t do anything to get yourself out of it. I tried to tell her that there is new evidence that points to genetics being the cause of insulin resistance which in turn causes diabetics to be overweight (the more diabetes genes you have, the worse the insulin resistance), but she got the “I know better” attitude with me. Granted, I don’t have a medical degree but I can read and understand things written by people who do. Even I can understand that not all overweight people have diabetes and not all diabetics are overweight.



Second, she told me that I needed to be on a low-carb, low-fat diet. I can only imagine this comes from a) the need to reduce blood sugar through carb restriction and b) the need to reduce cholesterol/triglycerides through fat restriction. However, she stated herself that the high blood sugar is also the cause of the high triglycerides and out-of-balance cholesterol. Studies have shown that when carbs are restricted, the body is forced to burn the excess fat resulting in a better lipid profile without medication or a low-fat diet.



I know this from experience because several years ago, before being diagnosed with Diabetes, I went on the Atkin’s diet after reading his book, lost 60 lbs and my doctor took me completely off all of my cholesterol and blood pressure medications. I didn’t gain the weight back because I started overeating, I gained it back because the diet is unsustainable long-term and I went back to eating “normally”.



On top of all of that, the diet she suggests doesn’t even make logical sense. How can you restrict 2 of the 3 macronutrients that your body burns for fuel? How can you possibly get enough energy from eating primarily protein without adding either carbs or fat? My experience is that you can achieve low-fat or low-carb but not both.



(Side note: The New York Times had an awesome article about the history of food fads,including the low-fat and low-carb fads, called Unhappy Meals. Go read it and tell me it’s not right on the money.)



To summarize, my frustation boils down to one simple thing. As a diabetic, you start to view food as the enemy. You cannot simply sit down to enjoy a meal and not think about the effects it’s going to have. I was hoping for a little comfort or reassurance that the doctors are on my side - that I’m doing what I’m supposed and they are rooting for my success. Instead, I realize that no one else has my best interests in mind except for me. To them, I’m just the overweight guy who gave himself a chronic disease, but more importantly, is going to help them make their next boat payment.



So, here’s what I’m doing about it. First, I’m taking charge of my medications. I’m no longer going to take medications because the doctor told me to. I’m going to do my own research and I have the means to measure the effects of most of my medications. I’m not going to wait for permission to stop taking a medication. If I stop and my monitoring shows negative results, I can always start taking it again. I know my own body and I should listen to it.



Second, I joined Dailyburn, a social nutrition and fitness website and I’m loving it. I can track literally everything. Everything I eat, every metric, and every exercise. I can join groups, add friends as motivators, do challenges (e.g. Biggest Loser competition), and find new workouts. I can have my progress and activities posted to Twitter (see my Lifestream). My next goal is to get a Wi-Fi enabled scale that automatically updates Dailyburn with my new weight whenever I step on it.



I know, it’s nuts to share so much information… but it works better than you would think to keep me motivated and that’s what I need most.

In one sense it’s a very scary realization, another altogether, that through this we take our care into our own hands. I don’t think we should ever fool ourselves to believe that Dr’s. have all the answers. …Just a disclaimer, (sorry) I’m not recommending that anyone should ignore their Dr’s. advice, but should just ask questions and as you’ve said if results are not gained keep asking, keep searching a better path. I’m sure you’d agree. Great job pushing back Craig!