For lots of people who are told they have diabetes, good advice and care are hard to come by! What's really tragic is when they are wrongly informed or led astray.
Today, we're sharing such a story from D-peep Bruce Burkhalter, who's been living with diabetes for about 20 years now. He's director of technology for a K-12 school district in rural Illinois (about 60 miles west of Chicago).
For years, doctors wouldn’t listen to him when he said the prescribed treatments weren’t working, leading him to develop complications and nearly give up. But Bruce finally took the reigns, and was able to get a more accurate diagnosis and find a regimen that's helping him thrive -- including low-carb eating and great technology tools. All good, especially given that he'd like to enjoy his approaching retirement this summer.
Today, Bruce is sharing his story with ‘Mine readers:
A Story of Poor Diabetes Advice, by Bruce Burkhalter
My introduction in to the world of diabetes was probably like most middle-age men whose blood pressure and waistline was increasing with age and stress; the doctor insisted I had type 2 diabetes, handed me prescriptions for blood pressure, blood glucose and cholesterol reduction meds, and that was it.
This led to a downward spiral of metabolic dysregulation and, due to my naivety, ineffective treatment -- even though I took the medications, went to classes presented by the Certified Diabetes Educators (CDEs), and followed their diet and carb-counting instructions to the best of my ability.
I don't remember the exact timeline, but that initial T2D diagnosis was about 20 years ago. Even though I believed it was a mishandled diagnosis, my doctors wouldn’t listen to me. Luckily, at some point not long thereafter, one of the internists I had seen before started me on Lantus. It was probably to keep me quiet and stop my complaining, but that helped me dodge the DKA (diabetic ketoacidosis) bullet over time.
But much to my chagrin and increasing depression, no one in the medical profession would listen to me that there was more going on. And nothing they did seemed to help.
A 'Bad' Diabetic
For more than a decade, I thought I was just a "Bad" and "Failed" type 2 diabetic, despondent with my failures to control my BG and mounting complications I was unable to curtail. My glucose levels and blood pressure got worse, diabetes complications got worse, and the porescribed statins started causing problems. My doctor’s solution: more drugs -- antidepressants and insulin. And slowly, I continued to go down the drain physically and psychologically. Neuropathy, retinopathy, kidney problems and more set in.
It got to the point where I was about ready to throw in the towel and just let the D-monster go ahead and take my life. I set my retirement date (for this June) wondering if I could last long enough to retire before going blind... yes, it was that bad.
As far as the doctors I’ve been to, I lost count. I've worked with doctors from Chicago, the suburbs and rural. Our local doctors are affiliated with a large hospital group out of Chicago. I had researched for months including throughout Chicago, and finally found sympathetic doctors at Rush University Medical Center downtown.
About five years ago, a new endocrinologist (my fourth, requiring me to drive 60 miles each way to see her) did the appropriate test to determine that I indeed had type 1 diabetes, not T2 (!)
I will give thanks and credit to my last endocrinologist who was not willing to give up on me and we tried Victoza and Byetta along with the oral meds and supplemental insulin (Lantus and Humalog). The Victoza did help a little but not enough to stem the tide of complications and until he tested and told me that my body made no insulin at all, and started treating me as a type 1.
Finding Diet and BG Tools
Around that same time, I finally decided to investigate alternative treatments because none of the advice I was given was working and it was time to either do something different or go ahead and die.
Search engines and social media brought new ideas and devices, the most important as it turned out was learning about LCHF (Low Carb High - or Healthy - Fat) eating and CGM (continuous glucose monitoring). That led me to the Dr. Richard Bernstein style of low-carb eating, and then to the better technology.
The diabetes Facebook groups introduced me to the Dexcom CGM so I could observe which foods worked for me and those that worked against improving my BG. I called Dexcom, and they contacted my doctor and insurance to get my prescription. I also learned there are “good” carbohydrates and “bad” carbohydrates depending on how your body reacts to each.
Using the CGM and making lifestyle changes, my BG became better controlled and my A1C finally started to drop. The more I learned, the more I researched, the more books I read on the subject, the more I became convinced that nutritional ketosis (keto) was the way to survival for me. This involves restricting your diet to moderate protein, very low carbohydrates and high fat. It’s similar to the the Atkins diet, but with more solid science behind it.
Results Do the Talking
Every one of my doctors said keto was dangerous and I would experience DKA and die. By this time I had done my research and knew the why and wherefore of nutritional ketosis and how one gets diabetic ketoacidosis. I asked my endocrinologist for a prescription for a ketone test meter and strips and promised to provide daily ketone readings. My research proved sound and my results speak for themselves.
Now my CGM results show my blood glucose staying within a normal range 99% of the time. I had to titrate my insulin down such that now I no longer bolus for meals and take one long-acting insulin shot per day (MDI) and my insulin use is down about 70%.
I use the Sugar Surfing techniques developed by Dr. Stephen Ponder when the odd spike occurs but usually blunt any spikes before they become problematic. Within months, my waistline dropped three sizes without losing much weight, I could actually see my lean body mass increase and fat loss without increasing exercise -- although my activity level improved because I was feeling better. My hypoglycemic episodes were reducing and becoming less severe owing to my brain running on ketones, which gave me better control over hypos. My complications have stabilized (no worse) and I’m seeing small improvements there too. I’ve been keto a little over a year and plan to stick with this lifestyle for the rest of my life.
Even with all the documented results, the “keto diet” was still a dangerous fad according to the doctors, except those connected with the keto and Paleo diet movements and their online presence. So, I gave up on local doctors and continued my research, this time looking for a doctor who understood nutritional ketosis and was willing to work with me. Once again the research paid off and I found a physician who understands and supports my choice. As noted, I have to drive 60 miles to see her but, she’s worth it!
The first visit with my doctor who knows what nutritional ketosis is was just a month ago. I was a rebel until February.
Overall, I would say that the Standards of Care are broken for diabetes and chronic diseases. We need the medical professionals to look at what works, not to the drug companies. They need a more serious focus on nutrition. But sadly that’s not what happens, and we patients are left in the void.
Looking back, most of my life as a diabetic is a fuzzy history of failure and self-recrimination. And I'm not surprised I find it difficult to remember details because honestly, I really don't want to remember, and it still brings tears to my eyes... I guess I'm still not ready for that level of introspection.
But I am happy to have finally found doctors who listen to me and are on my team, and have helped me get onto the right path in managing my diabetes.
Wow Bruce, sounds like your message to the community is: Take Control of Your Own Care. Excellent advice!