On My Experience with T2 Diabetes and the Terrible State of Medical Care for the Disease

 

At the beginning of February 2023 I learned that I was T2 diabetic. I had a random blood glucose reading of 225 (should be < 127) and an a1c of 9.1 (should be < 5.7).  It’s now been about 3 months and my random levels average around 103 while my a1c is 5.5.  I accomplished this by eliminating almost all carbohydrates from my diet (and I have been gradually increasing these amounts as my health has improved), exercising extensively, and overall losing around 40 pounds to date with more dropping off daily.

Most of the doctors and nurses I see are relatively astounded by this rapid change. The standard in the medical community is to regard T2 diabetes as a hopelessly progressive disease which can at best be managed with medication and even then with results which are likely not that great. To see such a rapid turnaround is not something most doctors are used to. This is not surprising, as the advice and standard of care for T2 diabetes is harmful and contributes to the worsening of the disease. In some ways this is changing for the better, but very slowly, and more so at a kind of “grass roots” level than systemically. Here is what I have learned through my experience.

What is T2 Diabetes?

 For readers who are not familiar with the basics of this disease, T2 diabetes is a condition in which the body does not properly manage levels of glucose in the bloodstream. This causes everything from high blood pressure to poor circulation to nerve damage, leading to degeneration of eyesight, heart attacks, and all sorts of other problems. The problem that causes all of this is the improper functioning of two organs: the pancreas and the liver. The pancreas is supposed to produce insulin, a hormone which is necessary for glucose in the blood to be used by cells such as muscle cells for energy. In a T2 diabetic person, the pancreas does not produce adequate insulin for the amount of glucose in the blood. Relatedly, cells become resistant to insulin so that what insulin is produced does not work as efficiently as it is supposed to. The liver is supposed to turn stored energy back into glucose when the body needs fuel but a person has not recently ingested anything which can be readily converted to glucose (like sugar or other carbohydrates). In a T2 diabetic person, the liver produces too much sugar when it is not needed. Together, this one-two punch causes high levels of glucose in the bloodstream as the liver produces too much and the body’s insulin response is unable to adequately “spend” that glucose. 

What is the standard treatment for T2 diabetes? For decades the norm has been diet, exercise, and a medication called metformin. Metformin was discovered in the 1920s and began to be used for treatment of T2 diabetes in the 1950s, though was not used in the US until the 1990s. It works primarily by slowing down the liver’s production of glucose but also has the effect of reducing insulin resistance. This also helps the pancreas because part of the problem with the pancreas in T2 diabetes is that it has been overworked because of the excess glucose from the liver. Exercise helps increase the insulin sensitivity of muscles, at least temporarily. Reducing the intake of sugars helps for obvious reasons. In more severe cases, T2 diabetics require insulin injections as well.

Diabetes and Nutrition

 This all sounds pretty logical, so why do I say that the standard of care makes the disease worse? There are two major problems, the first concerning diet. In the US, the recommended daily consumption of carbohydrates (for a non-diabetic) is for 45-65% of calories to come from carbs, which works out to 130g – 325 g per day depending on the caloric intake one is following. For diabetics, the American Diabetes Association (to which almost all doctors and hospitals turn for the standard of care) has for years recommended 130g – 225 g per day: in other words, the same as a non-diabetic. When I first met with the diabetic educator at the hospital and told her that I was had begun to eat around 20g or fewer or carbs per day, she said that on the low end I should aim for 30g per meal, 3 times a day, or even 45g x3 per day.

The American Diabetes Association has a website which provides recipes for diabetics, along with nutrition information for each. Looking at a random sampling of meals we find the following:

·         Greek lasagna: 37 g carbohydrates

·         Beef Stroganoff: 29 g

·         Chicken and Vegetable Casserole: 23 g

·         Protein Muffins: 14 g

·         Chicken Taquitos: 35 g

·         Baked Parmesean Chicken: 6 g (BUT is pictured alongside a plate of pasta)

·         Scalloped Potatoes: 29 g

Some of these meals are lower in carbohydrates than others, but nevertheless many have levels of carbohydrates which are no different from what a non-diabetic would eat. This is even more obvious when looking at the recipes themselves, which are often just normal recipes. What makes them “diabetic friendly” or healthier in any way? In a few cases they replace sugar with a non-caloric sweetener like Splenda, but usually they just replace beef with turkey and use low-fat versions of traditional ingredients. Not only does this have nothing to do with the particular needs of a diabetic’s diet – it’s worse than that because low-fat items often have more sugars or carbohydrates than their full-fat equivalents.

A growing number of doctors have been recommending that their diabetic patients eat more reduced carb loads and have been finding great success with this approach. The American Diabetes Association has also slowly been integrating this kind of diet into their recommendations, and in fact all of the materials I can find from them today are significantly better than they were even just two months ago. Still, they have not removed their older, out of date recommendations either, and from talking to a lot of diabetics nationwide it seems that the average medical practitioner working with diabetics is still using the ADA recommendations from 20 years ago.

Aids and Obstacles

Eating a lower carbohydrate diet successfully is much easier than it used to be thanks to the popularity of the keto diet and the gradual acceptance of it by the medical community as a valid dietary option. I have never really eaten a full-on keto diet myself, but the many keto products available in the grocery stores these days have made it possible for me to eliminate carbs in ways that I couldn’t have even just a few years ago. At the same time, the food industry falls far short of being nearly as much of an ally as it could be for conscientious diabetics and other low-carbohydrate eaters because their focus is still very much aimed at “trendier” avenues of food technology. The biggest obstacle turns out to be something that is of great help to another group of people: the gluten-free enterprise.

It is possible to find almost anything in a gluten-free variety these days and has been for some time, but most gluten-free products are anything but low-carb. Often they’re higher in carbohydrates than traditional equivalents because of the particular magic blends of starches and wheat-free grains that are needed to make items that act and taste like traditional foods. Manufacturers also — understandably — often want to incorporate as much of a “regular” recipe into their products as possible: for example keeping real sugar rather than sugar substitutes, to try to minimize the gastronomic impact of removing wheat from a product. With only so much space on store shelves and in manufacturers’ production lines, items which are gluten-free but not necessarily suitable for people who have trouble with blood sugar spikes take precedent. To a degree savvy people can try to make lower carb options at home, but not everyone has the skillset to do this or the time it takes to experiment enough to get things right. More importantly, the reality is that a lot of this stuff can’t easily be done at home. There is an enormous amount of research and science and experimentation that the food industry has put into developing decent facsimiles of various foods and much of what is available for low carb eaters (mainly stuff marketed towards ketogenic dieters) is made with ingredients and processes that may be impossible for the home cook to imitate.

Matters are made worse because of a lot of misconceptions diabetics have about food and poor or inadequate education on the part of their care providers. For example, a very large number of diabetics think that gluten-free foods are automatically good for keeping blood glucose low. As noted above, nothing could be further from the truth. Additionally, there is what I would call a very damaging message often given to diabetics that whole grains are 99substantially better than their refined equivalents. Eating white rice is advised against for diabetics, but brown rice is fine. White bread is a problem, but not whole grain bread. Etc. In practice, the difference is extremely minor. If a cup of cooked white rice is going to spike a person’s blood glucose to unacceptable levels, so is a cup of cooked brown rice. These recommendations remain in the materials and advice given to diabetics, but I have not encountered a diabetic who can eat these things with any kind of difference from their refined equivalents.

No, Not like That!

The other big problem with dietary recommendations is what I have come to think of as the golden calf of diabetes medicine: sustainability. I call this the “golden calf” because from everything I have seen it’s almost an idol which is put above all other things and I think it’s genuinely harmful. When I first started my aggressive diet and exercise regimen, the medical people almost objected, not because it wasn’t working (I had brought my level down SO much in the first 3 weeks that my a1c – a kind of average of abut 3 months’ time – had dropped from 9.1 to 7.2, a change that many patients will hope but fail to accomplish over years’ time) but because they questioned if it was sustainable.

Now I admit that I never planned for this approach to be lifelong - I was doing the equivalent of 60 miles per day on an exercise bike after all! – and I told them this, but they could only consider the value of long term, permanent changes.  To put this in perspective, forget about diabetes for a moment and simply consider a person who wants to lose weight. Say that the person is 300 pounds today and is able to get the weight down to 225 with an aggressive approach, but then finds a middle ground whereby he is no longer losing weight but is not gaining it, either. The way the medical field talks about diabetes management is the equivalent of dismissing that that initial push to lose 75 pounds because the person is not going to continue that particular lifestyle forever, even though he continues to live a relatively healthy lifestyle afterwards.  A big reason for this is because of what might be the most controversial, poorly understood, and important idea to ever enter the discussion in diabetic medicine: remission.

Diabetes Remission

On the subreddit for type 2 diabetes at the end of the list of all the usual community rules – don’t be racist, keep the discussion relevant, etc., –  is one zero-tolerance rule that reads more like a statement of faith than a rule: “T2 Diabetes can’t be cured or reversed. Put into remission, yes. Controlled, absolutely, but…” Posts violating this rule will be removed and the user posting them may be banned. Occasionally the moderators will allow a post to remain but add a big tag reminding readers of the hopelessness of the disease. 

That may sound like a pretty harsh take, but it’s well deserved. You see, there is a large number of users who have seen turnarounds like mine (or better!) and who comment on posts from newly diagnosed people or those going through a rough time to offer encouraging words or to share their own experience of what helped them to improve their condition. People who have just been told by their doctors that they have reversed their diabetes or received similar news will post to share their joyful news. Without fail, as soon as a such positive comment is made naysayers descend like a pack of Dementors to suck all of the happiness away. They circle like vultures squawking, “Can’t, can’t, can’t!”

It’s truly one of the most discouraging things I have encountered, and until I got my own bearings this attitude really shook me.

In truth, the idea of remission of diabetes has been becoming more mainstream in recent years. Peer reviewed research has focused on this possibility in the past decades, and in 2021 an international group of organizations like the American Diabetes Association, some of its European equivalents, and various diabetes focused medical journals released a statement acknowledging the possibility of remission of T2 diabetes and establishing clinical standards for recognizing it. It’s a very new idea, at least in terms of “official recognition” – meaning that the idea that T2 diabetes is lifelong, progressive, and can only be managed with an overall negative long-term prognosis is very entrenched. Any suggestion of a better outcome is still rejected by many as pseudo-science or false hope – even with names like the American Diabetes association behind it.

Even among those who acknowledge the possibility of remission the idea is still often neutered of most meaning. All it means, many will say, is that a person’s blood glucose levels remain below the diabetic range, but it doesn’t mean that their actual body function is normal. A person in remission still can’t eat, they might say, a few slices of pizza without seeing a huge blood sugar spike. Many who have been through the experience themselves disagree, reporting that after a certain point they regained the ability to eat normal meals without abnormal, diabetic blood glucose spikes.

What, then, is the reality here? What do the medical organizations say? What does that 2021 statement say? The truth is that they don’t. They don’t answer this question. In fact, they don’t even raise the question. They simply define remission as a person having an a1c below 6.5 for at least three months without diabetes medication and say that more research is needed to understand the implications. Again, this is an extremely new concept – so new that it seems few of the experts want to even acknowledge the question at this point.

The Cutting Edge

On the other hand, doctors and researchers who have been working on diabetes remission long before it entered the mainstream conversation do answer the question: it’s all about maintaining the conditions which led to the diabetic remission in the first place. Generally speaking, this means keeping the weight off. While not all T2 diabetics have weight problems and not all people with weight problems develop T2 diabetes, there is broadly speaking a strong connection. Increasingly it is suspected that when too much fat “crowds” the pancreas and liver it inhibits their function. In any case, both the cutting edge doctors from years past and the major medical organizations who have only recently started to speak about remission agree on one thing: significant weight loss seems to be the primary “weapon” to use against diabetes, and in those who achieve remission it seems to follow loss of significant amounts of weight – over 30 pounds on average. Keep the weight off once remission is achieved, those pioneers would say, and the diabetes will not return. 

Even as low-carb eating and weight loss begin to take hold as a mainstream treatment or management approach for T2 diabetes, still another, almost opposite standard of care is surging in popularity among doctors: treat with more aggressive medication earlier. It used to be that a newly diagnosed diabetic, unless the case were severe, would be treated with a low dose of metformin which would be ramped up over time as required. Yet in recent years a plethora of new pharmaceuticals have emerged which have much more profound impact and which doctors are more and more turning to first. Almost everyone reading this must have seen ads for these drugs given the enormous distribution that they enjoy. Rybelsus, Jardiance, Ozempic, Trulicity, Mounjaro, the list goes on and on. They work in a variety of ways. Some cause the body to express excess glucose in the urine. Others, called GLP-1 Agonists, prompt the pancreas to produce more insulin and are gaining rapidly in popularity today. Some reduce a person’s appetite, or make it more difficult for a person to overeat. Some do more than one of these things at the same time.

Yet these medications do not come without some concerns. The most alarming is the possibility that they may lead to a more severe form of diabetes down the road. Recall that part of the problem in T2 diabetics is that after years of excess glucose in the blood and the pancreas working extra hard to try to keep up, it begins to burn out. GLP-1 agonists encourage the pancreas to produce even more insulin, and so the concern – thus far elevated by the results of some research studies – is obvious. May these miracle drugs lower blood sugars for some years only to lead to a more severely damaged pancreas in the long term? This concern is of particular note if indeed many people can see remission by something as simple as weight loss. Apart from this nightmare scenario most will also consider as a given that living without medication is better than living with it – i.e., that a healthy body is better than a medicated one. Financial matters are also a concern.

And so for the treatment of T2 diabetes, there is a branch in the path. On one side is a small (but growing) number in the medical field who believe that for many diabetes can best be managed by eliminating most carbs from the diet and can even be put into remission with significant enough lifestyle changes. To them, remission means something closer to a full reversal –and indeed, many use this term. Their patients’ conditions often seem to improve. Their approach is generally one of aiming to help people reduce or eliminate medications and return to a more normal, if more moderate, lifestyle. On the other side is the overwhelming majority whose position is generally characterized by a more aggressive pharmacological treatment plan, one that allows patients to live long-term as diabetics but with reduced risks as compared to people in whom the condition is uncontrolled.

Speaking for Myself

Personally, I am very glad that my doctors - though not on what seems to be the cutting edge of understanding T2 diabetes - were at least not inclined to more aggressive treatment. If the doctor had told me on day one that I was being put on a more aggressive medication, I not only would have accepted it – I would have been happy about it. I just didn’t know much about the topic, and certainly not enough to make any kind of judgment about what approach would be best for me. I also wouldn’t have known what was possible for me to accomplish if I had simply been put on a medication that made things appear to be better.

On the other hand, I’m distressed that almost every degree of success I’ve had has had to have been achieved by ignoring almost everything the doctors and nurses have said or suggested. The very first thing I was told – by multiple people – was that I had to eat three meals a day, plus snacks. I couldn’t skip meals or fast anymore. I did that for a few weeks, but had much better success after switching back to a more disciplined version of intermittent fasting, a dietary approach which has only recently started to lose its taboo among doctors but which has shown tremendous results in diabetics. I was told I had to eat more carbohydrates, something else which I tried, this one only two or three times as it was pushing my glucose levels back up above 200 – at least at the time. My commitment to exercising as much as I did was questioned. I was told – bizarrely – to stop testing my blood glucose more than once a day. Before long I had a spreadsheet which allows as many as 14 readings a day and the data from which has proved invaluable in better understanding what has been happening and figuring out what was working and what wasn’t.

Am I being too harsh? For instance, exercising 4 hours a day really is a bit crazy, isn’t it? I’d grant that individually some of the points of “disagreement” with doctors may be more nuanced than I’m able to adequately express here.  What I would say, though, is that it is clear that taken collectively all of the things I have been told have been harmful rather than helpful. Even the most spot on doctor is going to have areas of disagreement with patients at times. That shouldn’t mean that the sum total of the doctor’s advice is so backwards.

The Bright Side

There’s been a lot of negativity here, so I think it’s worth closing out on some positive notes. What good things have I learned? What hopeful things have I learned? The most important is simply that there is hope. Certainly it’s true: I am not everybody and not everybody has the same body as I do.  Some people are starting off with their diabetes in a much worse place than I did. Not everyone has the physical or even just scheduling ability to start exercising as much as I did. Some people will do everything that appears “right” with little to show for it. Yet overall, on balance, there is hope. T2 diabetes is by no means the “life sentence” that it once was – or at least that it once was believed to be.

We also live in an age when so many of the things that I and so many others have found to work so well are much easier or more accessible. With the rise in popularity of keto, grocery stores now offer appealing low-carb bread options. Sugar substitutes have progressed to the point that they are generally pretty good. I remember when I was in high school trying sugar free candy and finding it pretty unpleasant – but these days it’s not all that different from the real thing. The internet also makes available so many ideas and recipes and approaches to try to replace things that you may want to leave off of your plate for a while. Please don’t take away the wrong message here. I’m not saying that modern technology should be abused by a diabetic to indulge in all the same vices that may have caused him problems in the first place. What I am saying is that when you’re trying to make such radical changes to something as fundamental as what you’re going to eat for months on end, it helps if you don’t have to suddenly give up everything you ever enjoyed.

In terms of specifics, there are lots of small "life hacks" I've learned in the last few months, especially in terms of food preparation. I've learned that when a gluten free product is low carb the texture and structural integrity can be improved by (ironically?) adding vital wheat gluten, now readily available in most grocery stores. I've learned that keto branded bread can be dried out and broken up to make a pretty good lower carb stuffing. I've learned that starches like potatoes and rice and be be transformed into what's called a resistant starch by cooking, cooling, and reheating them, reducing their impact on blood glucose by a pretty decent amount - meaning that a dish like fried rice is not a half bad option (as long as your glucose response isn't just off the charts). It turns out that radishes cut up and roasted can imitate a potatoes surprisingly well. Pork rinds ground up make one of the best facsimiles for breading on chicken or pork. Speaking of facsimiles, there are lots of brands that make keto or low carb versions of different foods and overall they're hit or miss, but anything made by the brand Quest is almost  certainly going to be excellent. Sugar free chocolate actually tastes pretty good these days, and mixed with some nuts and low-sugar dried cranberries makes a great lower-carb trail mix. Most beef jerky has way too much sugar in it, but making a low sugar version at home is surprisingly easy. Eating a dinner of only meat can actually still feel satisfying every now and then so long as you pair two meats that are dissimilar. Keto sandwich bread and hotdog and hamburger rolls are pretty darn close to the real thing and eating a few meals a week with them (cold cut sandwiches, hamburgers, bratwurst, etc.) can go a very long way to keeping you satisfied with how many "carbs" you're having. If you have to do fast food, chicken nuggets, even with their breading, are a decent option to have instead of fries with your burger to lower the overall load. Individually packaged foods - like those individual bags of potato chips or single serving microwave containers of rice  - are not economical but make it much easier to "cheat" responsibly now and then since you can see exactly how many carbs are in them and are more locked in to that serving size. 

And so on. 

I want to be clear in closing that I understand the vast differences that people will face in their own experience of not only diabetes but also any other medical concern. My experiences are not going to be universal, and even though countless others report the same it doesn't mean that there aren't people out there for who things may go very differently. I've also been lucky: I've done a lot of math with a huge number of blood sugar and a1c readings and determined that my condition seems to have been caught extremely early, which by all accounts makes it much easier to bring things under control and even reverse/remit/whatever the whole thing. Still, I hope what I have written about helps someone, and I very much hope that we can as a society fix so many of the problems that I've noted herein.