Going rogue... with the guidance of a medical professional

Ever have one of those moments where you decide to act upon something you have been thinking about for a long time? Well, I'm having one of those moments. It feels like I'm breaking out of prison.

Fine, I'm not batting 1.000 as one member of tudiabetes.org put it. We will see what my next A1c is. I can't be sure it's amazing, but I do know that I have been AT EASE for the past 3 weeks. Ever since Feb. 7, the day before my birthday, when I decided to break up with carbs.

The moment I spoke of before was not deciding to break up with carbs, but was the moment I went into my online health portal and CANCELED all my appointments. It was symbolic, of course, because I can always go back in and reschedule them. But still...

So, here's a breakdown of how everything has been since then:
I went to see this holistic doctor. I had seen him before. Before I was on the University of Michigan's HMO, when I was still on COBRA and I would have had to pay outright no matter where I went. But when I jumped on the UM HMO, I made decisions based on what would be covered. So, instead of seeing the doctor I wanted to see, I ended up with 5 doctors that I didn't want to see: a PCP, 2 endos, a pump specialist, and a nutritionist. All with a copay of $20-30, so I didn't even end up saving anything! (The holistic doc charges $105 per visit.)

UNSOLICITED ADVICE: Paying out of pocket for GOOD medical care is a much sounder financial decision than paying copay after copay for BAD medical care. 

Here's what I liked:

1. He gave me a hug when he saw me, and upon parting (warm fuzzies!)
2. He has a dog in the office that is super friendly 
3. He is willing to say "I don't know" when he doesn't know (unlike, ahem, some people in the diabetes clinic who would rather spout off 45 minutes of 100% grade A bullshit than admit they don't know). 
4. He's totally on board with low-carb (He said, "Anyone who isn't on board hasn't read the literature in the last ten years). I happen to think they are unwilling to depart from the old ADA guidelines, even though ADA has now updated their guidelines to say that, in fact, there isn't a one-size-fits-all approach to carb intake, and even reference studies with 20g daily carb up to 40% of calories from carb as having great impact on glycemic control. 
5. He's going to "go rogue" with me... ie: be there to give me sound medical advice, but not treat me like a number (test result number). He told me to still see my endo, and I told him, fine, but I'm just going to smile and nod and then go off and do what I feel is right. 
6. He isn't going to designate me as a "high-risk" anything, because I'm not high risk. My numbers are good. I'm super healthy. I don't need to be cradled and babied just because I have type 1. I can experiment with things like diet and exercise and that's OK. I don't have to sit still all day and nibble on three meals and three snacks throughout the day and eat the same thing and never try anything new.

And now, for an update on my BGs:

It's a bit rocky (by my new standard) today because I am entrenched at work with a deadline. Finally got my report in, and my CGM didn't beep at me all day, so I only just now looked at it.

Funny--when I first got it, I was OBSESSED. I looked at it all the time. And was often surprised at what was happening. Now I kind of assume my BG is in range.

Breaking up with carbs, too

It's been two weeks since I decided to go low-carb. I'm talking LOW carb. Less than 30 grams/day. Some days my carb intake creeps up to 50g, but I always make sure my net carbs are staying under 30 (total carbs minus fiber).

Other closely related nutrition philosophies include: Paleo, Atkins, South Beach, The Zone, Ketogenic (more accurate for what I'm doing), Dr. Berstein's Diabetes Solution, Primal Blueprint...

I started on Feb. 7, the day before my 31st birthday; 18 years into my life as a type 1 diabetic. 

The result has been this: I have never had such good control. My lows are as low as 50 (one instance in the last 2 weeks), but usually no lower than 60 (also rare, and I don't feel them because my body isn't relying on blood glucose for energy). My highest high was 250 on the second day of this experiment; other than that, it's gotten as high as 210 twice, the next highest high was 170 (about 4 times), but mostly stays under 140 after meals.

And as my body adapts to this new way of doing things, it's getting better.

• The last 24 hours didn't see a blood sugar over 125. 
• I went to the gym for the past three mornings and didn't worry about getting low or high. It stayed FLAT.
• I've been able to get OFF the constant snacking that is required by the traditional restricted calorie, low-fat diet. 
• I'm warmer.
• I am NOT hungry. Seriously. Not ever. Unless I go for 24 hours without eating. Then I get cold and hungry, but only after around 20 hours without eating. It's called intermittent fasting. Google it.
• I'm feeling more even keeled/sustained energy.
• I have reintroduced nuts into my eating! And dips. And bacon. And other delicious, satisfying foods. Just no carbs (but I do NOT miss them).

Here's my 24-hour readout from Dexcom. The "high" is set at 120 (this used to be my target BG, not my target is 90).

Can you guess when I ate? When I worked out?

I would absolutely recommend this plan to anyone willing to do the research it takes to understand it, and who is willing to be 100% committed to giving up carbs. This means (for me at least):

• No sugar
• No bread
• No pasta
• No grains
• No fruit (except <50g berries)
• No milk (too sugary)
• No juice, soda, Starbucks fancy pants drinks, hot cocoa, etc.
• No tubers--beets, potatoes, carrots, parsnips, etc
• No legumes--too carby
• Careful with veggies--some might have surprising amounts of carbs. I once cured a low blood sugar with Brussels sprouts!
• Make sure you have a really good understanding of the carbs in foods--cashews, for example, have 8g carbs in a small handful! 

Here's a typical day for me these days:

Breakfast: Breve latte (half & half + espresso), cheese omelet, turkey sausage
Lunch: Avocado, Soy pups, tehina sauce, unsweetened iced tea
Dinner: Coconut chicken curry, cauliflower mash, with peanut butter balls or cheese for "dessert"

It's not a lot of food because fat is more densely packed with calories. 9 calories per gram as opposed to 4 calories per gram for carbs and protein. 

I am NOT doing this for weight loss, although I did lose a lot of weight in the first week as my body emptied its glucose stores (which requires water). I'm hoping that I will lose a bit of weight as I stay on this plan (and bring down my calories), but I am entirely doing it for BLOOD SUGAR CONTROL.

My endo told me not to do it, so I fired her and found a new doctor. She couldn't really give me a reason not to do it. The nutritionist pushed me to eat at least 130g of carbs a day, so I also fired her. Her reasoning is that your brain needs glucose--which is true, but the body has a mechanism for making glucose from protein, a process that results in much smoother blood sugars than carb consumption. Check out my previous post for a recap of that frustrating set of events.

Here are some amazing resources I have come across:

Mark's Daily Apple
Dr. Mercola - does video interviews with some of the best thinkers on nutrition and sports
myglu.org is a community of type 1 diabetics, and supporters of type 1 diabetics. There are a good sprinkling of type 1s who are catching on to this way of controlling BGs
Dr. Bernstein's Diabetes Solution - is a quirky read that has revolutionized the way I think about blood sugar management

Also -- playing with intermittent fasting. It tends to push your body to more quickly adapt to dietary fat as energy. 

Here's my Pinterest board for good recipes for low-carb, high fat foods.

Why I'm breaking up with my endo (and entire diabetes team)

I have officially broken up with my diabetes team at the University of Michigan. Eff it; I'm going to see a holistic doctor next week and we will see what happens. I'm thinking about breaking up with Western Medicine altogether (but have enough respect for science that I won't do it).

While I'm a huge fan of taking your medical condition by the horns and owning that sh#!, I'm less of a fan of listening to doctors, diabetes educators, nurses, and nutritionists who CAN ONLY SPOUT DOGMATIC GUIDELINES.

Here's what led to my break-up:

1. My endo (head of the clinic, BTW) found a teeny tiny module in my thyroid, put me through all these tests (ultrasound, biopsy--large needle straight into my neck, and testing thyroid hormones). First-of-ly, the nodule is so super teeny that it isn't big enough to be a concern! Second-of-ly, he told me the there was no way to take preventative measures to make sure my thyroid production stays normal. Pshaaaa!!! I started taking iodine, and like MAGIC, my levels got even better! Not that they were AT ALL worrisome in the first place.

Red flag #1: Doc takes the approach "wait until it's really bad and then treat it."

2. The pump specialist. Oh, the pump specialist. Bless her, she's a nice person, but wow. "Specialist" is a strrrrreeeeeetchhhhh. Point one: she's a type 2 diabetic on a pump. Nothing is wrong with that, but there are just different considerations for type 1s. And wouldn't you want a type 1 pump specialist? Or someone who is up on the latest research on type 1s/pumps? Considering most candidates for pumps are type 1s?

Next point: She has folks start on a flat rate and kind of wing it from there. I don't know about other type 1s, but I need more accuracy than that! So I looked up Medtronic's guidelines for adjusting rates to account for Dawn Phenom, higher day basal, etc, and started there. (OK, this is for preggers women, but is based on Medtronic's guidelines, and down the page lists out the calculations.) She was upset about this and told me she was "very concerned" that I had done this without consulting her. Wah?!?!?! Do you know type 1s? They are constantly making decisions about their doses. Seriously. She instead wanted me to go on a flat rate and just "wait and see" how Dawn Phenomenon affects me. Hon, I know how it affects me, I've been on a pump before, I'm on a CGM, and I've been a diabetic for 18 years! UGH.

Red flag #2: Pump specialist not so much a specialist, but someone who knows the basics of pumping.

3. I was shipped off to the clinic's nutritionist, who did little more than tell me the ADA Guidelines for nutrition. And the OUTDATED GUIDELINES at that! They have since updated their position, saying that there is no such thing as a one-size-fits-all nutrition guideline for carbohydrate, fat, and protein intake. They go on to cite several studies that show the benefits of low-carb diets on glycemic control:

Carbohydrates: Evidence is inconclusive for an ideal amount of carbohydrate intake for people with diabetes. Therefore, collaborative goals should be developed with the individual with diabetes.

They go on to say:

Some published studies comparing lower levels of carbohydrate intake (ranging from 21 g daily up to 40% of daily energy intake) to higher carbohydrate intake levels indicated improved markers of glycemic control and insulin sensitivity with lower carbohydrate intakes... Some studies comparing lower levels of carbohydrate intake to higher carbohydrate intake levels revealed improvements in serumlipid/lipoproteinmeasures,
including improved triglycerides, VLDL triglyceride, and VLDL cholesterol, total cholesterol, and HDL cholesterol levels...

I wrote the nutritionist a note today, voicing my concern at her bad advice (trying to be diplomatic, but not too condescending). 

Red flag #3: Not up-to-date on the latest research and prescribing a one-size-fits-all solution that doesn't actually work for most people.

4. When I did share with the endo (another endo on my "team" who I see more often than the head of the clinic) what I was doing, she balked. First, a little backstory: She congratulated me on my excellent HA1c (6.1 woot woot). Keep in mind that glycemic control is the NUMBER ONE indicator of overall health of a diabetic... poor control potentially leads to all of these complications you hear about. So she says: GREAT JOB! and furthermore, REALLY GREAT JOB on not getting plummeting lows anymore. Yet, when I shared what I was doing (less than 30g carbs daily) she said, "No, no, don't do that."
"Why?" I asked.
"It's not recommended."
"Why?" I repeated.
No answer.
Thanks for the advice, doc, but unless you can give me a why beyond the tired dogma of the traditional nutrition guidelines (which, by the way, I've read, and it's a REALLY SHAKY set of events that led to the current guidelines on carb consumption), then I am going to listen to my body and my numbers. Here's an interesting read by Gary Taubes on the history of the creation of low-fat, high-carb guidelines.

Red flag #4: Dogmatic approach to diabetes control. Can't answer "why." (Side note: I would have far more respect for "We don't know" as an answer.)

5. The cherry on top: The nurse that weighed me, took my HA1c, etc... told me the following:
She was going over my prescriptions: "Your prescriptions for test strips is for 10/day."
"That's right," I told her.
"Insurance won't cover that." She told me.
"Don't worry about insurance," I told her. (I get my 10 strips covered no problem.)
"But your A1c is good so you don't need to test so often," she offered up as unsolicited advice.
"Um, my A1c is 6.1 exactly because I test ten times a day," I let her know.

Red flag #5: Bad advice is coming out of the walls!


Here's my new plan:
I cancelled my appointments; my thyroid follow-up, my next two visits with the endos, a visit with another specialist. I'm going to a hollisitc doctor who I have seen before. Hopefully he will get it. His son has type 1 since childhood, so I'm very confident that his approach will be more about what's going to work for me, rather than what the guidelines state.

I also hope that he will be supportive of my low-carb approach and help me work through the kinks, rather than being dogmatically against it without any scientifically sound reason.

The anti-diet: Day 1

I've decided to go against every shred of nutrition advice I have received in the past 18 years of having diabetes. This advice has resulted in less-than-desirable control (HbA1c never lower than 7.4), and a life of frustration and constant struggle to keep my blood sugars in line.

In October 2012, I had the good fortune to meet a health coach with Herbalife. She helped me come up with a nutrition plan that focused on foods that have minimal impact on my blood sugars. Indeed, I brought my HbA1c down to 6.4 for the first time in two decades of having this condition. My focus was starting my day off with a protein food that contains some complex carbohydrates (read: fiber).

This protein/fiber focus is what really got me on track, and I also went from 151 lbs to a slender 132 lbs just in time for my wedding!

I don't know what started me on this latest kick--I can't remember what light went off in my head that there could be an even better way. But here I am, OBSESSED, and starting on my first day of giving the big middle finger to the diabetes medical community.

I'm not telling my doctor. I know what they will say. They've been saying it for years. But I've done a considerable amount of research and have come to pick apart the science, and all reliable, logical conclusions lead to this:

Switching your body to rely on fat for most of its energy needs will be a sustainable, effective solution for smoothing out blood sugar levels.

Here are some resources:
Understanding the history and politics of the low-fat recommendation: http://www.diabetes-book.com/articles/ssdf.shtml

This is an amazing overview of metabolism.

DAY ONE:

Breakfast: 8am
3 whole eggs with 50g of regular, high-fat cheese and one green onion. Cooked in 1 tbsp coconut oil.
Latte made with soy milk creamer.
So freakin delicious after spending the last 18 months adhering to a balanced, lowish carbs, high protein foods (read: protein shakes). 

Supplements included: fish oil, multi-V, fiber

Snack: 11:15am (I was not even hungry!!! Breakfast kept me super full)
350 calories of macadamia nuts. Mind you, I haven't eaten nuts in FOREVER! There was previously a nut ban in my home because of their densely caloric nature.

Lunch: 12:30pm. Feeling really good.
2 cups of broccoli. Eaten with 1 avocado mushed and mixed with 2 tbsp salsa.
I know this doesn't sound like a lot, but I already wasn't that hungry, and this kept me feeling very satisfied (fat will do that).

Snack: 3:15pm. Still feeling really, really good.
Cucumber with bacon cheddar dip. Holy crap, I am literally spooning bacon cheddar dip into my mouth. Mind you, I am restricting my calories to 1640/day, so I'm not going too crazy. 5 calories worth of cukes dipped into 300 calories worth of bacon cheddar gold.

Blood sugars are OK. I reduced my basal to about 50% but have had to take a few small boluses. It got as high as 214, but I really want to keep it up around 160 so I don't have to RUIN everything by having to treat a low, which I had to do early this morning.

So far, I am at 27g of net carbs. I feel really good. I plan on working out later with no insulin on board in order to get my liver to dump some more stored glucose.

So far, so good!

Everything they tell you about nutritional guidelines is wrong.

I don't know why this rubbed me the wrong way so much:

I went to see a dietitian in the Metabolism, Endocrinology, & Diabetes clinic. I went in with a chip on my should already, because what could SHE possibly have to tell ME that I didn't already know after 18 years of living with type 1 diabetes for 18 years?

We started by going through my typical day of eating and looking at my blood sugars (rocking out at HbA1c = 6.4), and all she had to contribute was "good job."

She told me that "you should be eating at least 130 grams of carbs per day."

"OK," I told her, "I'll dip into a jar of jelly beans every night before I go to bed. That should do it."

Then she started explaining that they should be whole grains, spread throughout your meals and snacks. She spouted the typical dribble I've been hearing my whole life: 30-45g of carbs with every meal, 15g for each snack.

I asked WHY? Why do we need to consume at least 130g of carbs each day? And that kind of implies that it's a minimum, and we should REALLY be doing MORE, which goes against everything I believe in. (Aka: Americans are fat because they eat wayyyyy too many carbs, and if anything, we should be giving them a maximum, not a minimum.)

Your brain needs glucose for fuel--that was her explanation. I've heard that many times before, including from my health coach who approaches nutrition from a more reasonable stance, IMO, and advises 3 servings of whole grains per day--that's it.

SO... I started looking into it. Does our brain rely solely on glucose for energy? And if so, how much? Where do these guidelines come from? I'll start there.

1. Where do the guidelines come from? (The recommendation of at least 130g of carbs daily.)
Answer: From the FDA. Research shows that in a typical diet, the brain uses glucose (all carbohydrate breaks down into glucose with the exception of dietary fiber). They came up with this recommendation based on how much glucose the brain needs at a minimum for a good, functioning brain. Good rec, right? Well, in the report that outlines these guidelines, they also reference studies showing that, actually, the brain can use another source for fuel: ketone bodies. Ketone bodies are made when breaking down fat or drawing on stored fat for energy. We all make ketones when we are fasting (like overnight), and it is a comparable, arguably better, source of energy for your brain.

Before 1921, when the late great Fred Banting discovered insulin (the best discovery of all time), people with "sweet death" could prolong their lives for weeks or months by consuming zero carbohydrates--they ate mostly fat, and a bit of protein. So...

2. Does the brain rely solely on glucose for energy? NO. A resounding NO. We just don't understand the alternate process enough to feel good about recommending it. I'll give it a try:

There are a few parts of the brain that rely only on glucose, but we can actually convert protein into glucose for those purposes. So, do we NEED carbohydrates to survive? Nope. It's the only of the 3 macronutrients that we DO NOT need.

So, given that we will inevitably eat a few carbs no matter how hard we try, and we will definitely eat some protein, those parts of the brain are covered. The rest of the brain and the body (muscles and all), can rely on dietary fat. The brain (parts that don't require glucose) can use something called ketones, which are made in the liver when breaking down fats. This only happens on a large scale when there is little to no carbohydrates available, and insulin levels are nil in the bloodstream.

Your cells, including your muscles, are perfectly happy using fat for energy, and your brain will use ketones. A bit of protein will help your muscle development and some will convert into glucose for your brain.

Cholesterol seems to be a problem only for folks who consume too many carbs and store fat (especially saturated fat), but when eliminating carbs, this isn't a problem.

I heard about a man in Australia who takes one daily shot of basal insulin (6 units!!!!) and does not see many fluctuations in his blood sugar levels.

Check it out: http://www.youtube.com/watch?v=TR8rc_AF6XU 

So here I am: 18 years in and just hearing about the ketogenic diet. I'm all in.

Day 1 (today)
Breakfast: Cheesy 3-egg omelet cooked in a generous amount of coconut oil with a latte made with soy milk creamer. 0.9 units for a bolus, and my basal rate is set at 50% of my normal regime.