How I Crushed Type 2 Diabetes in Only Weeks and Completely Changed My Outlook on Life

Editor’s note: We found Rey’s remarkable story in the diabetes online community, and asked him if he would share it with us. Rey experienced extraordinary rapid success by following a precise diet and medication regimen immediately after diagnosis with type 2 diabetes. His improvement was incredible, but others making the same changes may not experience the same success. Please speak to your doctor or caregiver before enacting any major health changes of your own.

I’m Rey, and I’m a 44-year old male with a history of high blood pressure and being overweight, but until recently I had no major health issues. Only this past summer I learned that I had dangerously uncontrolled diabetes. Within the span of just a couple of months, I completely changed my diet, started and then stopped glucose-lowering medications, and got my blood sugar back into the normal, healthy range. Here’s my story.

My First Health Scare

My story is ultimately a diabetes story, but there were some bumps along the way that I think are worth including before I jump into the diabetes.

My adventure really began in the summer of 2020. After some stressful life events, I developed a rather constant state of anxiety, which seemed to be preventing me from getting good sleep. Even while using a sedative, I was up at least 4-5 times during the night, every night. I didn’t have a previous history of mental health problems, so this was all new to me. The especially challenging part was that as time passed, lying in bed became a trigger for the anxiety, which made the sleep even harder to come by. I felt like I was just going through the motions to get through life.

Fortunately, after months of stubbornness and sucking it up the best I could, I finally got to the bottom of things. I discovered it was sleep apnea, and started CPAP treatment. The result was truly life-changing, sleep returned to normal, and my anxiety went away 100%.

Life was great and I’d survived and handled my major mid-life health crisis…. or so I thought! Little did I know, but that relief would prove to be short-lived as in the coming months I started to experience a new set of symptoms.

I was at my highest weight yet and my BMI was creeping towards 30. Some reading this will scoff and think “30 is nothing, I’m well above that,” but everyone’s body is a little different and apparently 30 was my personal breaking point.

My fasting blood sugar was over 100 mg/dL, and my doctor said something about pre-diabetes, but she didn’t sound too concerned about it.

The Symptoms

I was again experiencing sleeplessness. Now I was finding that instead of sleep apnea waking me up during the night, my bladder was sure filling up and I was getting up to pee several times a night. Also, I was quite thirsty when this would happen. I did notice it was nights that I’d eat pizza or pasta for dinner that were the worst. Some combination of stubbornness and perhaps denial kept me from taking this too seriously, so I just kept on with things. Besides, this was March 2021 and you didn’t dare go into a medical clinic unless you were on your covid deathbed. Surely, this was no big deal, and getting checked out could wait.

Still, I sensed something was wrong and I reduced the amount of pizza and pasta I was eating for dinner (maybe twice a week instead of five nights a week), eating beans with rice and veggies for dinner instead. In hindsight, not great, but a minor improvement.

The next major symptom arrived in April: blurry vision. At first, I wasn’t worried. I’d gotten LASIK eye surgery done 12 years earlier, and this change seemed like a mild return of my nearsightedness. I was also in my mid-40s, which I’m told is a time where focusing becomes harder and your vision changes.

Then it got really bad: I was on a trip to Florida when I couldn’t read a menu board that was 8 feet in front of me. I had to resort to taking a picture of it with my phone and then looking at that picture to read the menu. Something was majorly wrong!

When I got back from Florida (after some real nerve-wracking and likely dangerous driving), I went in to get my vision checked and received a -2.0 diopters prescription. The optometrist was shocked that I had let my vision get that bad before getting glasses and made a comment about diabetes, but was also of the impression that my vision would change throughout the day as my blood sugar changed. That clearly wasn’t happening to me (turns out it’s more complicated than that).

The last major symptom was that I had been losing weight at a pretty decent clip (5-10 pounds a month). Obviously, this must have been due to cutting back on pizza and pasta, right? Curiously, past attempts at eating better had never been quite this effective, but why question such great progress when you’re on a roll! At this point, it was late April and the earliest I could get in for a check-up was mid-June, so why not ride out another month of weight loss and see how great my labs come back then?

My Diagnosis

A little over a week before the appointment I started researching diabetes online, since I was starting to wonder about what my doctor and optometrist had said. But surely that takes years to develop, right?

Obviously, my “diet” was working since I had now lost 25 pounds this year and weighed less than I did in my 30s. Who knew eating healthy was so easy!

After a little light reading, I quickly realized how wrong I was, that everything that had happened in the last few months was explained perfectly by diabetes, and that the weight loss might have been diabetes rather than my new diet. This was hard to process.

I picked up a blood sugar meter, and on a Friday night fumbled with the thing enough to figure out how to get a reading. I was shocked when the meter read 567 mg/dL. That can’t possibly be right! My girlfriend tried the meter and her result came in at 77 mg/dL. I tested mine again and this time it registered 596 mg/dL!

At this point, it was 11 PM on a Friday night, and my safest course of action would have been to go to the ER, but I figured if high blood sugar hadn’t killed me in the last 3-4 months, it probably wasn’t going to kill me that weekend. I decided to read more about diabetes, give myself a couple of days to get my wits about me, and go into urgent care on Monday. I also continued to test my blood sugar and it seemed to stay in the 300 to 450 mg/dL range that weekend, regardless of what I ate or whether I was eating.

At urgent care my A1c came in at 13.7%, and my fasting blood sugar was 449 mg/dL. Based on my history, I was more likely to have type 2 diabetes (and additional testing would later confirm that). I was prescribed metformin, and advised to take insulin, advice that I wasn’t ready to take.

Rey kept track of his blood sugar measurements from the moment he began testing, before he was diagnosed with diabetes. You can see his girlfriend’s healthy reading, 77 mg/dL, on the first day.

A New Diet

I now understood that the reason I had lost so much weight so quickly was my uncontrolled diabetes, at least 3 months of it!

I immediately cut most high-carb foods out of my diet and subsisted largely on a diet of full-fat cottage cheese, full-fat plain Greek yogurt, hard cheese, nuts, avocadoes, and canned beans with olive oil. I also kept some fruit and berries in my diet initially. Throughout the day I ate random combinations of these foods. I didn’t really prepare them or fancy them up at all with cooking (other than heating the beans in the microwave so they’d be warm).

I knew I had screwed things up, and if there was going to be any hope of reversing the damage I feared I had done to my body I needed to focus. Maybe I would be able to go back to eating pizza, pasta, and all those delicious carb-filled foods that I loved someday, but it was clear now wasn’t the time for that.

I’d certainly thrown in the towel on diets plenty of times before and gone back to eating like crap, but this time it felt like there was a gun held to my head, and quitting wasn’t an option. Perhaps I’m being overly dramatic about this, and perhaps it wasn’t the healthiest outlook, but it’s how I saw things and it got me through the first weeks where I was at my highest level of motivation.

I wasn’t using a particular diet system I had found on the internet or in a book, it was just me trying to think of all the foods (as a vegetarian) that I normally ate that were lower on the glycemic index, and sticking to those. Frustratingly, there seemed to be a lot of disagreement online in regards to what the “best” diet was for a diabetic, but I’ll come back to that later.

The Right Medications

With this diet and metformin, my blood sugar still ranged from about 250 to 400 mg/dL that first week. My blood sugar really needed to come down since the longer it remained elevated, the greater my risk for diabetes-related complications. Clearly, a week of my new diet and metformin wasn’t enough, and I was more open to exploring what else could be done.

When I saw my primary doctor after that week, she wanted to put me on insulin too, in order to stabilize my blood sugar. Although I knew that insulin would have rapidly brought my blood sugar down to normal levels, using it would have made it difficult for me to gauge if my dietary changes were getting the job done.

Through my research, I had become convinced that SGLT2 inhibitors were the only class of drugs that made any sense for a person with new uncontrolled type 2 diabetes to take (in addition to metformin). Normally in uncontrolled diabetes, your kidneys excrete sugar to your urine as a means of keeping your blood sugar from getting dangerously high, but that effect doesn’t really kick in until your blood sugar levels are way up there. With an SGLT2 inhibitor, your kidneys are just doing that all the time, keeping your blood sugar down in the process. The real beauty of this is instead of insulin, which causes your body to store that excess sugar (only delaying the problem), once you pee out the excess sugar, it’s gone forever.

I asked my doctor for a referral to an endocrinologist and a prescription for an SGLT2 inhibitor instead. She didn’t have much experience with SGLT2s and started talking about other drugs, but she could see I had a pile of notes with me on different drug classes, the research I had done on them. I think she also realized that although she was the one to write the prescription, that I was ready to argue my case.

As soon as I started taking the SGLT2 inhibitor my blood sugar came down almost immediately.

On Farxiga, within days my blood sugar dropped to the 100 to 150 mg/dL range. I had to pee a little more at first too, which suggested the drug was doing exactly what it was supposed to. After a few days, I found I wasn’t peeing any more than normal, which was probably due to my fairly low-carb diet.

[Editor’s note: Rey had an incredibly positive experience with SGLT2 inhibitors, but they are not for everyone, and do carry side effects and risks, especially when combined with low-carbohydrate diets. Please speak to your doctor about changing your medication.]

This was a great improvement over where I was before, but like every newly-minted diabetic I had dreams of reversing my diabetes and getting my blood sugar back to “normal.” I obviously wasn’t there yet and just because you want something doesn’t mean it’s possible or realistic, but I was holding onto that dream.

Remission is a very controversial topic. Most ADA and official-looking literature I found said that diabetes was a progressive disease. As time passes, more drugs are required to maintain the same degree of control, and some pretty awful complications occur as it gets worse and worse. That was a rather depressing outlook. If it all falls apart in the end, why not just go back to enjoying all those carb-rich foods that I love and enjoy whatever time I’ve got left? Fortunately, I didn’t fall into that trap, but I have to imagine many do.

Intermittent Fasting

I was aware of internet doctors out there on the fringes saying type 2 diabetes can be reversed and people can manage through diet alone, without drugs. Are they selling false hope, similar to new-age healers selling energy crystals to cure cancer? Most of them are talking about low-carb and “keto,” which I’d previously assumed to be just another random fad diet. “They’re obviously quacks,” I thought. I figured that American Diabetes Association was most certainly correct about diabetes being progressive, just giving me the cold hard truth. But just for the sake of argument, I decided to hear the quacks out first.

Of the doctors on Youtube, the first to really suck me in was Dr. Jason Fung, a Canadian nephrologist. He had a very intuitive model for explaining type 2 diabetes, and used research on treating the condition with gastric bypass surgery (which has been highly successful) as a starting point. He suggested a low-carb diet combined with fasting in various forms. Hey, I’m already doing the low-carb thing and it seems to be helping. Maybe fasting would be the next nudge I needed.

I started with 3 set meals a day (eating between 7:30 AM and 7:30 PM, and then fasting from 7:30 PM until 7:30 AM the next morning). Around the time I started Farxiga, I moved into the next phase of fasting, which was to skip breakfast and then eat only lunch and dinner (eat at 12 PM and then 8 PM). To my surprise, I no longer felt hunger when I wasn’t eating. I now know that’s a common benefit to the keto diet, but if someone had tried to tell me about that a year earlier, I would have thought they were crazy. Also, I didn’t really know I was doing keto. I was just doing a tighter version of the diet I’d explained earlier, with less fruit and no beans.

I completed my first full-day fast the weekend after starting Farxiga. I didn’t eat anything at all starting Friday after dinner until around 1 PM on Sunday, for a 40+ hour fast. Again, Farxiga had gotten my blood sugar down to under 150 mg/dL on a regular basis, but this was the kick that finally got me back under 100 mg/dL. Throughout Friday it was testing 130 to 150 mg/dL, Saturday morning I was at 144 mg/dL, but as Saturday dragged on and my fast continued I started getting multiple readings under 100 mg/dL. My Sunday morning fasting result was 96 mg/dL and, it got as low as 79 mg/dL on Sunday afternoon before I finally broke my fast. To my surprise, breaking my fast only bumped me to 119 mg/dL and 5 hours later my blood sugar was back down to 82 mg/dL. Seeing this progress felt truly amazing and it was only 16 days after finding out I had diabetes!

Maintenance

Rey’s blood sugars improved rapidly and remarkably with the right combination of diet and medication.

Of course, you don’t eat your way to diabetes in two weeks and you don’t undo your diabetes in two weeks either. I was taking 2,000 mg of metformin a day as well as the SGLT2 inhibitor. The week after my big fast, my fasting blood sugar readings would go back over 100 mg/dL, but I kept plugging away, only eating two larger meals a day during a narrow set of eating hours. I also tested the high-carb waters with a 6-inch Subway sandwich – it spiked my blood sugar to 190 mg/dL, which is much higher than a non-diabetic would likely hit from that meal. That helped knock me back down a peg and remind me that I still had diabetes, after all.

The next weekend I noticed that my blood sugar numbers were starting to come down to under 100 mg/dL without extended fasting. I also noticed that foods that previously spiked my blood sugar a great deal were now spiking it much less. On June 28th (day 24 of knowing I had diabetes and 13 days after starting my SGLT2) I decided to stop taking Farxiga and see what effect it would have. This was not a responsible decision, as you should always consult with your doctor before discontinuing medication, but with my improved blood sugar levels, I questioned if Farxiga was still doing anything for me. It turned out my guess was correct. There was no significant change in fasting or post-meal blood sugar readings in the days that followed, and my type 2 diabetes was now well-controlled via just diet and metformin!

About a week later I started wearing a Freestyle Libre 2 to get a broader picture of my blood sugar trends, and for convenience. My readings were still in the 80-90 mg/dL range throughout the day, with small bumps up over 100 mg/dL after a meal. When I finally was due for my appointment with an endocrinologist to discuss my diabetes treatment, the feel of the visit could best be summed up as “why are you here?” My data showed that my average blood sugar in the previous 10 days had been 95 mg/dL, which would extrapolate to a 4.9% A1C (compared to the 13.7% result when first tested). This is, of course, only an estimate. And my blood sugar had only been well controlled for 2-3 weeks at this point.

Blood sugar wasn’t the only improvement either over last year’s numbers: total cholesterol dropped from 238 mg/dL to 172 mg/dL, with HDL (“good cholesterol”) fairly steady from 64 to 62 mg/dL. LDL (calculated) dropped from 141 to 90 mg/dL. Triglycerides dropped from 165 to 102 mg/dL. The endocrinologist agreed that I no longer needed Farxiga and indicated there really wasn’t a reason for me to see her again, but that I was free to set up another appointment if things changed.

My Best Path Forward

Since then, I’ve done more reading on the keto diet and feel that’s my best path forward to continue to maintain my health, both in terms of diabetes and beyond. I’ve improved enough that I no longer wear a CGM or perform finger sticks to check blood sugar on a regular basis, only checking maybe once a week “just to be sure.” Although I’ve tested out eating some of my old high-carb favorites and been impressed by how much less they spike my blood sugar now, I’m no longer interested in eating them on a regular basis, which is surprising to me. I’ve also found I can sleep through the night just fine without my CPAP machine due to the 35 pounds of weight I have lost from my peak of 215 lbs. The sleep apnea isn’t completely gone, so I still wear the mask most nights, but it appears to be dialed back from severe to mild.

It’s a very weird feeling: when I first found out I had diabetes I wanted nothing more than to continue eating the foods I loved and found comfort in. I felt like something had been stolen from me and feared that my body was permanently broken. Why should other people be able to eat what they want to, and I can’t? It felt very unfair and I really wanted there to be a drug or a treatment that would let me eat how I wanted to. Now that I’ve immersed myself in a better understanding of just how bad those foods were for me, I view things very differently.

I share my story not to lord my results over you if you’ve been less successful with your diabetes. I got really lucky, finding good dietary advice quickly after my diagnosis. Sadly, much of the official guidance out there seems sure to fail. I was also lucky with my uncontrolled diabetes “helping” with the first 25-30 pounds of weight loss.

I no longer have aches and pains when I get up out of bed or have to roll a certain way to avoid them, my memory has improved quite a bit and I’m no longer struggling to recall things I was just told, as I did with high blood sugar levels. I have so much more energy and stamina rather than feeling lethargic or struggling to complete physical activities. It’s like I’m in my 20s all over again (except for a little gray hair)! The downside is I now know if I go back to a lifestyle of enjoying carbohydrate-rich foods, things will go poorly for me, but as long as I don’t, I get to enjoy life so much more than I had before. And there are plenty of delicious foods that aren’t packed with carbs that I’m free to enjoy.

I think diabetes has been a net positive for me, as strange as that sounds. The me of today is very different than the me of a year ago.

Source: diabetesdaily.com

Walking a Tightrope – Dealing with the Highs and Lows

This content originally appeared on diaTribe. Republished with permission.

By Julie Heverly

Julie Heverly joined The diaTribe Foundation in 2021 as the Director of Institutional Giving. Heverly was diagnosed with type 1 diabetes after her junior year at Washington & Jefferson College and she is a guest writer for diaTribe Learn.

Julie Heverly describes one harrowing day when her glucose levels teetered between way too high and way too low and how she navigated this challenge.

For me, life with diabetes is like walking on a tightrope. Sometimes my course is set, and I can navigate to the ledge on the other side gracefully. Yes, it’s difficult, and yes, it requires skills, knowledge, the right equipment, and bravery (and even some luck), but it’s doable. But other days, a big wind blows through, and that delicate tightrope act is put in jeopardy.

I recently experienced one of those really bad windstorms, and it knocked me right off the tightrope.

To help me stay in range, I wear a continuous glucose monitor (CGM) and a closed-loop insulin pump that can give me small doses of insulin (micro doses) when my glucose levels are high and that can halt insulin delivery when my glucose levels are dropping or anticipated to become below my desired range. It’s a helpful system that assists my daily management quite well overall. It is not, however, a fool-proof system or a cure.

On this particular day, I woke up determined to stay in range (as is my daily mindset). At 5:30 am my alarm clock went off. I exercised for an hour on the elliptical, showered, and got myself and my family ready for the day. I chose the same breakfast I’ve been eating for the past six months – low fat cottage cheese and fresh berries. Shortly after breakfast though, my glucose started creeping into the 300s, where it stayed, despite my best efforts, until 9:30 p.m.

That entire day, my stomach was nauseous, my head was foggy, and my mood resembled Oscar the Grouch. I tried my best to bring my glucose down just as I have been taught:

  • I calculated correction boluses through my pump.
  • I selected low carb meals for lunch and dinner, and I pre-bolused 15 minutes in advance for both meals.
  • I changed my pump site in case the canula had kinked.
  • I used a new vial of insulin in case the old one had turned bad.
  • I took a walk after dinner.
  • I hydrated myself throughout the day (I personally aim to drink half my body weight in ounces each day).
  • And finally, I even resorted to a manual injection correction.

It didn’t help, at least not at first. But as we all know, what goes up, must come down.

Snacks

Image source: diaTribe

By 10:30 pm, my stomach started to growl, and my CGM showed that my glucose levels were finally coming down, but rapidly. I dropped from that 300 mg/dL range to below 80 in less than 60 minutes, and my CGM warned that I would continue to drop without urgent treatment. I treated myself with my standard juice and peanut butter crackers and went to bed relieved that the unbudgeable high was gone. But 45 minutes into my sleep, I was awoken by another CGM alert. I was below target again. My CGM and pump began beeping once every 15 minutes for the next two and a half hours. Once again, I attempted everything I have been taught, but this time it was to raise my glucose levels:

  • I consumed 8 oz of juice and waited 15 minutes.
  • Then I ate some peanut butter crackers and waited 15 minutes.
  • Then I consumed 8 oz of milk and waited 15 minutes.
  • And finally, I ate approximately 50 grams of carbs in small doses (approximately 15 grams of carbs at a time over the course of two hours). I felt like I was eating everything in sight.

Throughout all of this, I checked my glucose with my CGM and blood glucose meter regularly, but no matter what I seemed to try, my glucose sat between 60-70 mg/dL with downward facing arrows on my CGM. Thankfully, because I never fell to level 3 hypoglycemia (below 54 mg/dL, when mental or physical functioning is impaired), I did not need additional assistance or glucagon.

This is the point in the textbook story where a person should have their family on standby with a glucagon kit and their phone ready to call 911. But I don’t live in a textbook. I live in the real world where people are employed and need sleep to function properly. I had left my bedroom after the first six alarms so my husband could try and salvage some sleep. I had my phone at the ready, but I’ll admit to trying to fall back asleep after each course of treatment, making each alarm more upsetting and frustrating than the last.

Throughout the course of the night, I dealt with soaking sweats and shakes. My legs were able to carry me to find more carbs, but they felt like they would give out at any time. I knew I needed more glucose in my system, but I lacked the resolve to search for the best options and ended up eating whatever was closest to me.

My lack of control and inability to quickly resolve this situation left me with significant anxiety, feelings of helplessness, and guilt for potentially disrupting my family in the middle of the night. But perhaps the worst side effect of this hypoglycemic episode was the fear it provoked.

I’ve been living with type 1 diabetes for 23 years; I know the risks of hypoglycemia. In 2016, I was serving as the executive director for the American Diabetes Association in Western Pennsylvania, and while setting up for our annual diabetes camp, one of our best volunteers never arrived with our inflatable arch. This was incredibly unlike him, and we left message after message trying to reach him. A few days later, I learned that Gregg, who also had type 1 diabetes and who dealt with hypoglycemia unawareness, had died from hypoglycemia. Two years later, a 9-year-old girl named Sophia who had participated in the same diabetes camp the summer before, died at a sleepover, also from hypoglycemia.

Most of the time, diabetes is manageable thanks to new and evolving tools, therapy options, and tons of education. But every so often, there are days that are completely outside of the normal day-to-day. These days are difficult to manage and can only be explained by ambiguous culprits like stress or hormones. Those days are frustrating and sometimes scary. They remind me of Gregg and Sophia. I see their faces and I recall the heartbreak I shared with their families and loved ones when diabetes took them too soon. They also remind me to push through and to keep fighting.

At some point, during this particularly difficult glucose rollercoaster day, I remember falling asleep and thinking, “I’m exhausted, and I really hope that it’s my alarm clock that wakes me next and not my diabetes devices or a paramedic.”

Three hours later my alarm clock went off.

Thank you, Lord!

I felt like I had been hit by a truck, but it was a new day and I was given another chance to get it right.

I am so grateful to be dealing with diabetes in the age of CGMs, closed-loop insulin pumps, and helpful metrics like Time in Range that give me more information about my diabetes management. My life is better, easier, and healthier because of them. But there are still days when the best laid plans don’t always work.

After this incident, I contacted my endocrinologist. We decided to complete some basal rate testing to ensure my pump settings were currently correct. I also got a prescription for one of the new next-generation glucagon options. I’ve talked to my husband and daughter about learning how to use the new glucagon if I hit level 3 hypoglycemia. Finally, I resolved to work on balancing patience and vigilance with my diabetes management. That will be the toughest challenge.

Sometimes I wonder if Nick Jonas makes having diabetes look too cool. Or that maybe we have all done such a great job of thriving with this condition that the public, our families, and even those of us living with diabetes sometimes forget how dangerous diabetes can be when something in our world changes the wind near the tightrope that we walk 24 hours a day, 7 days a week, 365 days a year.

If you want to learn more about managing hyperglycemia or hypoglycemia, check out some of diaTribe’s helpful resources:

Source: diabetesdaily.com

Remission, Not Reversal: Experts Agree to Define Ultimate Type 2 Diabetes Success

Type 2 diabetes can be considered “in remission” if patients can maintain non-diabetic blood glucose levels (<6.5% A1c) for 3 months without medication, according to an international panel of experts.

On August 30, the American Diabetes Association joined the Endocrine Society, the European Association for the Study of Diabetes, and Diabetes UK in co-authoring a consensus statement on “the definition and interpretation of remission in type 2 diabetes.” Here’s a press release, and here’s the full statement.

Remission is Becoming More Common

Type 2 diabetes remission has always been rare – a 2014 survey concluded that fewer than 2% of adults with diabetes experienced any level of remission without bariatric surgery – but in recent years, it has become more common.

The increasing prevalence of diabetes reversal owes partially to the rise in bariatric surgery, but is also likely due to the proliferation of new weight loss and diabetes management techniques. Although diabetes rates continue to rise unabated throughout the world, experience and understanding of the disease have led to superior treatment strategies, allowing a minority of patients to return their blood glucose levels to non-diabetic levels.

Now there are even companies, such as Virta Health, that have based their entire business strategy on the belief that diabetes “reversal” is within the reach of millions of adults with the condition.

With so much attention paid to diabetes remission, the world’s major diabetes authorities decided that the phenomenon of diabetes remission or reversal needed to be properly addressed, named, and described. The consensus statement should help guide study of the phenomenon, and give doctors and patients a framework for understanding just what remission really means.

What’s in a Name?

The experts seem to have given very careful consideration to what word doctors should use to refer to the achievement of regaining non-diabetic blood sugar levels. Many in the diabetes world use words like “reverse” or “correct” or even “cure” to refer to this phenomenon, each of which has its own implications. To speak of a “cure,” for example, is to imply that the disease has left and will never return; in the case of a patient that needs to keep up with dramatic lifestyle adjustments to keep their blood sugar at non-diabetic levels, this is a plainly inaccurate label. “Reversal” and “resolved” likewise suggest similar shades of meaning.

The panel decided,

that diabetes remission is the most appropriate term. It strikes an appropriate balance, noting that diabetes may not always be active and progressive yet implying that a notable improvement may not be permanent.

The term also accounts for the fact that while patients with diabetes may have achieved normal glycemic levels, they may still suffer from insulin resistance and/or deficiency, factors that may mean that they need to continue keeping a careful watch on their blood sugar management.

An earlier statement from the American Diabetes Association on type 2 remission categorized patients into different types of remission – partial, complete, and prolonged. These categories have been discarded as unhelpful.

Diagnosing Remission

Type 2 diabetes remission is now defined “as a return of HbA1c  to < 6.5% (<48 mmol/mol) that occurs spontaneously or following an intervention and that persists for at least 3 months” without the use of insulin or glucose-lowering medications. (The statement also allows for some other manners of diagnosing remission, such as using fasting blood glucose, in cases where HbA1c may be unreliable.)

The 3- month time parameter helps weed out both fluke A1c results and the lingering effect of medication, which can last for months after it’s been discontinued. Lifestyle interventions (changes to diet and exercise) and surgery (especially gastric bypass) can precipitate diabetes remission.

At the moment, the experts advise that patients in remission should have their A1c, as well as any potential diabetic complications, checked annually.

By definition, patients with type 1 diabetes cannot achieve remission (except under perhaps under unique and extraordinary circumstances), given their lifelong reliance on exogenous insulin

How to Achieve Remission

The most reliable way of creating type 2 diabetes remission is through bariatric surgery: nearly half of the patients in a Swedish cohort experienced lasting remission.

Bariatric surgery, however, is a very intense and expensive operation, and it comes with its own risks and complications; most patients with type 2 diabetes will not be considered good candidates. For the rest, weight loss, however it may be achieved, appears to be the best path to remission. Experts additionally debate the efficacy of specialized eating patterns, such as low-carbohydrate diets and therapeutic fasting.

Remission may not be a realistic goal for everyone, and researchers don’t yet have a solid understanding of why some patients are better able to reset their metabolic health than others.

We have an entire article on diabetes remission – originally published using terminology that is now officially out of step with mainstream practice: What You Need to Know About Reversing Type 2 Diabetes.

Going Forward

There’s an awful lot we still don’t know about remission. To date, diabetes remission has not attracted much attention from researchers, possibly because it was considered such a rarity. But with that changing, the diabetes authorities behind the consensus statement recognized a need to guide the questions of researchers.

The statement includes a laundry list of areas where future study is required, including:

  • How often patients in remission need to be re-evaluated
  • Whether or not patients in remission could still benefit from metformin and other drugs
  • Whether other metabolic parameters (such as cholesterol levels) need to be monitored
  • How long remission can be expected to last
  • What impact remission has on longterm health outcomes

Having finally named and described the phenomenon, the panel hopes to spur research into the reality of the condition so that it may be better understood.

 

Source: diabetesdaily.com

Back to School with Diabetes Amidst the COVID-19 Variants

This content originally appeared on Beyond Type 1. Republished with permission.

By Lala Jackson

This article was published on August 13, 2021. As of Monday, August 23, the FDA has granted the Pfizer and BioNTech COVID-19 vaccine full approval for ages 16 and up, with the Emergency Use Authorization (EUA) still in effect for ages 12-15 and for booster doses for immunocompromised individuals. Full approval for other COVID-19 vaccines currently under EUA is expected soon.

While hopes were high that we could head back to school for the 2021 school year as though we were closer to “normal,” the development of COVID-19 variants amidst low vaccination rates has thrown a wrench in plans. But when kids need to get back to in-person schooling for quality of life, quality of learning, and socialization, how can we best keep them safe?

To help answer this and other questions about going back to school safely, JDRF—in collaboration with American Diabetes Association and Sansum Diabetes Research Institute—hosted a conversation with doctors and experts from the CDC, ADA, and the Fairfax County Health Department (Virginia).

Moderator Dr. Kristin Castorino, senior research physician at Sansum Diabetes Research Institute, kicked off the event with the most pressing question—is it even safe for students and their teachers who have diabetes to return to in person schooling, particularly for those under 12 who cannot be vaccinated yet?

“I’d change the question from ‘is it safe?’ to ‘is it appropriate?’ and I think it is,” answered Dr. Fran Kaufman, pediatric endocrinologist and chief medical officer at Senseonics. “There aren’t known answers as things change… but we need to get our kids back to school, not only for learning but for socialization.”

Dr. Kaufman stressed that the best way to make school safe is for everyone who can get vaccinated to do so. Dr. Christa-Marie Singleton, MD, MPH, senior medical advisor at the CDC later elaborated, “Vaccines protect folks against serious symptoms, hospitalization, and death. The best way to protect ourselves, our families, and our youngest people is for the adults and kids over the age of 12 around them to get vaccinated.”

“We also know about the importance of masking,” continued Dr. Kaufman. “It’s important to follow the CDC’s recommendation that all children and adults should be masked in the indoor school environment.”

What About the Legal Rights of Kids With Diabetes?

Particularly as some states ban school districts from being able to require masks in indoor learning environments, what legal protections do kids with diabetes have to stay safe in school? Crystal Woodward, MPS, director of the ADA’s Safe at School campaign, stressed “the rights of students with diabetes do not go away during a pandemic. They have legal protections under federal and state laws. Those accommodations may look a little different, but they do not go away.”

Similarly to how the Americans with Disabilities Act protects people with diabetes in the workplace, section 504 of The Rehabilitation Act protects the education of children with disabilities like diabetes. This law allows children with diabetes and their families to create what are known as 504 plans, which clearly outline agreed upon accommodations for students with disabilities at school.

While parents cannot dictate the actions of other students, they can include directives for their own children to stay safer from COVID-19 in 504 Plans, like instructions that their student must always wear a mask or will need extra physical distance in a classroom setting.

“It’s imperative that [children with diabetes] have a section 504 plan,” Crystal explained. “Everyone needs to be clear on what accommodations will be provided and by whom, like the student having the ability to take an exam at an alternate time if blood glucose levels are out of range during the scheduled test time.” Ensuring the student also knows what is in their own 504 plan can help them feel more empowered and comfortable asking for what they need.

For distance learning, 504 plans can dictate that children with diabetes can take snack or meal breaks at times best for the student, or have an agreed upon communication method with the teacher if the student needs to take a break to attend to a low or high blood sugar.

“Bottom line: the rights of students do not go away,” Crystal reiterated. “Students with diabetes and their families should work with schools and everyone needs to understand their role and responsibilities, and the plan should be updated as needed. It’s always better to get it in writing. Put the 504 plan in place while everything is going well—you never know if a principal or a nurse or a teacher is going to be there throughout the year.” Panel members stressed that families who don’t speak English, particularly in public schools, have a legal right to translators who can help establish 504 plans.

Jacqueline McManemin, RN, BSN, certified diabetes education and care specialist (CDECS) and assistant nurse manager for the health services division of Fairfax County Health Department in Virginia, spoke about what they’re continuing to do in their school district (one of the 15 largest in the nation) to keep students safe. “Parents should expect to see much of the same precautions this year that were in place last year. Particularly when students are inside, they should be masked.”

School administrators across the country can work to make schools more safe for all children, particularly those with chronic illnesses like asthma and diabetes, by putting in protective measures like establishing two different health clinics—one for people exhibiting symptoms of COVID-19 or other communicable illnesses and a separate clinic for routine care and injury treatment.  Meals can be eaten outside as weather permits and student interaction in hallways can be minimized by teachers rotating between classrooms rather than groups of students switching classrooms every period. Protocol also needs to be clearly communicated with all staff and parents about what to do if a student starts showing symptoms of COVID-19 while at school.

Getting Kids Mentally Ready for in-Person School

Back to school doesn’t just mean a change of location, it’s a change in schedules, types of interaction and stimulation, and levels of distraction that can also impact diabetes care. Psychologist Cynthia E. Muñoz, PhD, MPH, assistant professor of clinical pediatrics at the University of Southern California’s Keck School of Medicine and president of healthcare and education for the American Diabetes Association, reminded the community that the impact of the pandemic on each individual has been unique and therefore approaches to regain a sense of normalcy must be unique too.

“For parents and guardians, be aware of how you’ve been impacted. Seek support, through family, through primary care, through a therapist. Find ways to talk about your fears or concerns,” encouraged Dr. Muñoz. She went on to suggest ways to get kids mentally and physically ready for school again.

“Now that schools are starting to open, it’s time to start looking at sleep schedules, screen time, and start shifting routines and schedules to get children ready for the new routine,” she noted. “Many people watch a lot of content on social media or television—not just kids, everyone—but it’s a passive interaction with others. Shifting to a more active form of communication with others can be another way to help people ease into the change of a lot more interaction than people have had in the last year or so.”

Helping Kids Who Feel Singled Out

Kids with diabetes often deal with feelings of being the odd kid out, having to visit the school nurse, having to deal with special routines. When COVID-19 is added, kids with diabetes may feel like they’re the only ones taking special precautions, which can be additionally isolating. How can parents help children dealing with these feelings?

“I like to approach this question around the concept of support, building layers of support around the student,” Dr. Muñoz explained. “One level should be ensuring that someone at the school should know that the child has diabetes and knows what kind of support they need. Another category is who could know [the student has diabetes], but doesn’t necessarily have to, like friends. For the student with diabetes, getting support from a friend or classmate they trust could go a long way. If the student feels like they’re going to be the only one wearing a mask, they can ask a friend to wear it with them.”

“I think it’s important for adults to be sensitive to this,” Dr. Muñoz continued. “Saying “everyone has something different” might minimize how a student feels. Acknowledging their feelings and taking the time to ask them what will help goes a long way.”

To get advice from other parents and guardians or to help your student with diabetes find other kids who understand, be sure to join the Beyond Type 1 community.

Learn more about the JDRF – Beyond Type 1 Alliance here.

You Can Watch the Entire Conversation Here:

Source: diabetesdaily.com

Is Digital Diabetes Coaching Worth the Cost?

Does digital diabetes coaching really work? And is it worth the money?

While these programs were basically unknown only a few years ago, there is now a dizzying number of businesses claiming to offer personalized mobile diabetes coaching programs. A diaTribe guide to the services lists fifteen different options, a number which may only grow in coming years. (In a related phenomenon, there are also many new coaching services that utilize continuous glucose monitoring for people without diabetes).

What is digital coaching?

Digital coaching is not telemedicine or telehealth. A digital diabetes coaching service can only supplement, but not replace,  your doctor, endocrinologist, or diabetes educator. Digital diabetes coaching services cannot order prescriptions and cannot address more complicated health issues.

Digital diabetes coaching services aim to help “fill in the gaps” between regular visits with an existing care team, as a representative of MySugr, one of the better-known services, puts it:

I really see the benefits of having those touch points in between physician appointments because the day-to-day is what really matters with diabetes. If you’re just going in every several months it’s hard to make changes that stick. If you’re able to check in with a coach every so often without having to make an appointment, not only does it help the management, but it helps ease anxiety which is a huge part of diabetes too.

While the details will vary from one business to another, the basic idea is that the patient will share his or her data (blood sugar, insulin use, weight, etc) through a mobile app. The app provides feedback and advice, whether it’s delivered by an algorithm or a trained professional. Even if the mobile coach doesn’t deliver any revelations, the hope is that little check-ins and notifications will help keep patients more mindful of their condition and in a better frame of mind to apply themselves to their diabetes management, leading to improved results.

Some coaching platforms are paid for by insurers or employers. Others require patients to pay for them directly – a common price is about $50 per month.

The case against digital coaching

Digital coaching services have studies that show that their coaching programs deliver big results – improving HbA1c, weight loss, and reductions in insulin and other glucose-lowering medications. But in a recent debate at the American Diabetes Association’s Scientific Sessions conference, Dr. Kasia Lipska of the Yale School of Medicine expressed doubt about the quality of the evidence in favor of these programs.

After reviewing the clinical literature, Dr. Lipska noted that most studies of the services tend to be sponsored by the companies themselves. They are typically of very short duration, and some are barely up to good standards for clinical science.

She referred particularly to a study run by Omada Health of its own program. Among the problems with this study: no control group, no randomization (perhaps meaning that participants were highly motivated), and missing data, in addition to the obvious conflict of interest.

Omada has also run a randomized controlled trial, considered a far more thorough approach. Those results, which have only been made public in a press release thus far, were “relatively modest,” showing some weight loss but less than a 0.1% improvement in HbA1c. A similar trial, of the Noom coaching platform, had similar results, showing no difference in A1c and a relatively minor improvement in weight loss.

The best-designed study of digital coaching platforms that Dr. Lipska was able to find “did not demonstrate clinical effectiveness.”

“I think we have to squint a little bit to see a lot of evidence for clinically important significant outcomes,” she stated.

Dr. Lipska also expressed some personal skepticism about the programs.

“The thing that really bothers me is that they’re really not aligned with the healthcare team. Me as a clinician, I have no input into the feedback that my patient gets.”

The case in favor of digital coaching

Arguing the opposite case was Dr. Anne Peters, the director of the University of Southern California’s Clinical Diabetes Programs, and a much-honored diabetes advocate.

Dr. Peters took a broader view of the problems that digital coaching is meant to solve, noting that the healthcare costs of diabetes continue to spiral and that many people with diabetes still struggle to achieve the targets set by their doctors.

Even if patients enrolled in digital coaching services do not experience better outcomes, the programs may be worth the cost to insurers and employers if it helps reduce the frequency of in-person visits to the medical center. Some studies have found that digital coaching systems reduce patient medical spending and office visits, big benefits for patients, insurers, and medical practitioners alike.

Moreover, in Dr. Peters’ telling, patients can use all the help we can get them. Technology and medication have improved significantly in recent years, but they are not effective without training and professional assistance. For decades we have known that diabetes education improves outcomes – is there a good reason to doubt that education delivered through a smartphone would fail to do the same?

Both debaters agreed that digital coaching platforms were only likely to help a certain percentage of diabetes patients, those with a modicum of technical acumen and a willingness to commit to a more intensive management style. It’s possible that such patients are already highly motivated to pursue management success and are therefore less in need of help than others less likely to use such a service. While Dr. Lipska argued that this means that digital coaching services may exacerbate healthcare inequities, Dr. Peters took a more optimistic view of the matter, counting any new treatment options as a positive even if they do not serve all patients equally well.

Takeaways

Digital diabetes coaching hopes to supplement standard medical care for diabetes by filling in the gaps between visits to the doctor’s office. By offering advice and reminders, they hope to keep your mind on your condition, setting you up for diabetes management success.

The evidence in favor of digital diabetes coaching is mixed. The proof that these platforms actually lead to improved outcomes is meager, but there is better evidence that they may save money for insurers and employers that offer the programs by reducing the frequency of in-person visits.

Would a digital diabetes coaching service be worth the cost to you? For a certain type of person, especially a patient ready to take his or her glucose management to the next level and willing to keep up with frequent online check-ins, these programs may well be highly effective.

 

Source: diabetesdaily.com

An Update from the Controversial Dr. Denise Faustman

Remember Dr. Denise Faustman? Dr. Faustman is about as close as the type 1 diabetes world comes to having a celebrity researcher. Her lab, based at Massachusetts General Hospital, has given people with diabetes a lot of hope—and also generated plenty of controversy.

The BCG Vaccine

In 2018, Dr. Faustman’s team released the first results from a Phase I trial of a novel but appealingly simple and non-invasive treatment that could make blood sugar management much easier for patients with type 1 diabetes. The treatment? The bacillus Calmette-Guérin (BCG) vaccine, which has been used to prevent tuberculosis for a century. The BCG vaccine is one the oldest, longest-studied and best-understood vaccines; it is inexpensive and considered very safe. It is administered to as many as 100 million newborns across the globe annually.

The early results were encouraging: patients with type 1 diabetes who received just two doses of the BCG vaccine, spaced four weeks apart, achieved markedly lower A1c levels when compared to a control group. This result was first observed three years after the vaccine administration and continued for the next five years of follow-up. Participants receiving the experimental treatment had an HbA1c of just 6.18%, significantly lower than participants who received a placebo (7.07%). These results understandably created a lot of enthusiasm in the diabetes community.

The Authorities Push Back

The good results, however, also attracted some pushback from important diabetes authorities. The American Diabetes Association and JDRF took the unusual and striking step of co-authoring a joint statement to highlight “limitations” to Dr. Faustman’s research. The study, according to the statement, was minuscule – “nine people at the five-year time point, and three people at the eight-year time point” – and did “not provide enough clinical evidence to support any recommended change in therapy at this time.” While couched in cautious and moderate language, the letter clearly hoped to smother the hype that the BCG study had kindled.

A 2021 profile in Healthline stated that Dr. Faustman has now been “effectively shunned by the research community.” She has had to seek funding outside of the usual sources – something she’s done with aplomb, raising millions from private donors.

How BCG Might Work

Dr. Faustman hasn’t been as much in the news too much lately, but rest assured, she’s still working. And at last month’s ADA Scientific Sessions conference, we received an update to her ongoing work on the BCG vaccine. The team is still learning how and why BCG appears to work the way that it does.

The BCG vaccine is old, but its proposed mechanism in treating type 1 diabetes is new and surprising. BCG does not appear to restore insulin production, nor does it improve insulin sensitivity. So, what could explain the purported improvements in glycemic control?

Many experts have theorized that our immune systems have become less robust because our society is so much cleaner than it used to be. This idea, the so-called ‘hygiene hypothesis,’ also seems like a pretty good explanation for why type 1 diabetes is more common than it used to be. Dr. Faustman believes that the vaccine may help kick parts of the immune system into action, a mechanism that used to happen naturally back when we had a messier society. In particular, BCG helps trigger the proper function of “Tregs,” immune cells that are known to be dysfunctional in people with type 1 diabetes. Over a period of three years, participants in the study saw their Treg function slowly return to normal. This change also causes the immune system itself to burn more blood glucose, a shift that creates big glycemic improvements.

Interestingly, the BCG vaccine seems effective in patients that developed T1D during childhood (< 21 years), but not those that developed the condition as adults.

More Trials Planned

Meanwhile, several other trials of BCG have begun. A Phase II study is happening right now, and will monitor the effects of the treatment in more detail and with more participants; if the good results are confirmed, it could help allay the concerns raised by the research community about Dr. Faustman’s work. In addition, the Faustman lab is targeting a larger pediatric trial, which will test the vaccine in 150 adolescents, some with well-established type 1 diabetes, some newly diagnosed. Perhaps younger patients have an even greater opportunity to benefit.

The appeal of the BCG vaccine is obvious—a simple jab or two that could confer years of significant blood sugar improvements? Who wouldn’t be excited? But it would be best to continue to evaluate Dr. Faustman’s results with caution, given the skepticism of other researchers. Even if she’s right that BCG is a kind of silver bullet that can deliver durable A1c improvements, it will be years before she’ll have the data to make the case.

Source: diabetesdaily.com

Should We Be Screening Every Single Child for Type 1 Diabetes Risk?

If Type 1 diabetes struck you or a family member, it may well have seemed completely random, unpredictable, and unpreventable.

It’s less random than it might seem—with a drop of blood, doctors can roughly estimate the risk of developing the condition, even in a newborn baby. And while the condition cannot yet be prevented, education and awareness can make its onset significantly less damaging, possibly resulting in lifelong health gains.

Screening for type 1 diabetes risk could become a routine element of childhood checkups, applied to all children. Should it be?

How Screening Works

There are, generally speaking, two ways of screening for type 1 diabetes risk.

The first, autoantibody screening, tests the blood for the immune proteins that cause type 1 diabetes when they attack the pancreas’ Beta cells. Autoantibodies emerge unpredictably, and are best assessed in early childhood, when the risk of disease onset is at its highest.

The second, genetic screening, tests a patient’s DNA for variations that are associated with type 1 diabetes. Genetic screening can be accomplished immediately after birth.

Screening of either sort rarely gives a definitive answer as to the likelihood that any one person will or will not develop type 1 diabetes—it places a patient in a bracket of higher or lower risk. One exception is when a blood test finds multiple autoantibodies present in one person, which can be said to indicate very early (subclinical) type 1 diabetes. In these cases, it may be years before the symptoms become noticeable.

Much of the data linking antibody presence with risk factors comes from the long-running Trialnet Pathway to Prevention study. TrialNet has been celebrated in the diabetes community for providing simple and free screening to so many. Click the link, and you can contribute to the body of knowledge by getting yourself (or a family member) screened.

Genetic and autoantibody screening can be used separately, but the most accurate projections use the two (along with any family history of diabetes) in concert.

The Benefits of Screening

Type 1 diabetes isn’t, so far as we know, preventable. So why screen for it at all?

Perhaps the single largest benefit to type 1 diabetes screening is the reduced incidence of diabetic ketoacidosis (DKA). When doctors, patients, parents, and caregivers are all aware that one patient has an increased risk, they’ll be more likely to identify hyperglycemia early, before it progresses to a critical state.

Avoiding DKA, a dangerous and incredibly painful condition, is just the start of it: studies have also shown that patients that got an early warning of the risk of type 1 diabetes also go on to have reduced A1c, fewer diabetes symptoms, and increased residual beta cell functioning. The earlier you catch the progression of type 1 diabetes, the healthier you’re likely to be in the coming years and perhaps even decades.

While researchers can’t always prove a causal relationship, mounting evidence appears to show that the severity of hyperglycemia at diagnosis can have a lasting and possibly even lifelong effect. In our recent article on diabetes and the brain, for instance, we learned that children that experience severe DKA at diagnosis have measurably worse cognitive impairment compared to children that did not have DKA. This effect lasts for years, and may be permanent.

And then there’s the game-changing drug teplizumab, which appears to delay the progression of symptomatic diabetes for years when given to patients that already have two or more antibodies. Those delays can be hugely valuable to families, meaning both enhanced health and emotional well-being. An expert panel recently voted to recommend that the FDA approve the drug. If teplizumab proves to be as effective as hoped, it would significantly strengthen the case for large-scale type 1 diabetes risk screening.

Teplizumab may just be the start, as doctors are working on other novel approaches to delaying (or preventing) type 1 diabetes. At the moment, for example, trials are underway to see if infants with a genetic predisposition to the condition will be less likely to develop the disease if given the probiotic B. infantis or insulin powder. Who knows what other therapies the future could bring?

Experiments with Universal Screening

At the recent American Diabetes Association Scientific Sessions, Germany’s Dr. Anette-Gabriele Ziegler discussed the results of two different experiments in universal diabetes screening. In these studies, all children within a certain area were tested for type 1 diabetes antibodies, regardless of family history.

The first, named the Fr1da study, tested children aged 2-5 during their regular check-ups in Bavaria, Germany. Only 0.29% of these Bavarian children got the bad news that they had the antibodies indicating subclinical type 1 diabetes.

While this was a very thin slice of the population, that knowledge still made a big difference. 81 tested Bavarian children went on to develop full-blown type 1 diabetes within the next three years; of those 81, only three developed DKA, an astoundingly low 3.7%. This was an immense improvement over the status quo – elsewhere in Germany, about 45% of newly diagnosed children developed DKA. And even that 3.7% seems somewhat inflated – of the three kids that suffered DKA, two of them belonged to families that declined diabetes education after receiving the positive test results.

In short, testing about 140,000 kids saved about 36 (and counting) from DKA and from whatever other long-term health deficits that acute hyperglycemia might have caused in the future. It also significantly reduced stress in the parents of newly diagnosed children.

A similar effort in Colorado, named ASK, delivered similar results. While only 0.52% of the participants were found to have subclinical type 1 diabetes, only 6% of them developed DKA, a vast improvement over usual rates.

Dr. Ziegler said, “We would like to screen everybody.”

The Downside of Screening Too Many

So why not start screening every child now? It costs money. Insurance companies will need to be convinced that it’s worth paying for.

The cost of screening may be significant, and the cost of follow-up education can be even higher.

Even if we can screen all children for type 1 diabetes, it’s not at all clear how many families should receive diabetes education, as Dr. Richard Oram of the UK’s University of Exeter expressed in a presentation at the conference.

Suppose, for example, that we had a universal genetic testing program – every newborn child in the country gets his or her drop of blood analyzed. At what level of genetic risk do you begin to apply education and intervention?

If you draw the line at the infants in the top 10% highest risk, you’ll identify nearly 80% of the kids that are going to develop type 1 in the coming years … but that’s only 2.4% of the kids selected for extra attention, meaning it’s likely a waste of time for the remaining 97.6%. On the other hand, if you only choose to educate the tiny minority of kids with the highest risks, you’ll waste less time, but ultimately only identify less than 10% of the children that will go on to develop type 1.

Public health experts are not ready to just brush aside all that education delivered to families that don’t really need it. And it’s not just a question of wasted time or money – as noted by Dr. Laura Smith, a clinical psychologist at USF, studies have shown that these screening programs can result in clinically significant levels of stress or anxiety for kids and caregivers alike. Parents will also often attempt to change their kids’ diets or increase their monitoring of their kids’ health, perhaps unnecessarily.

Profit and Loss

In reality, it will likely be the insurance companies that decide where to draw the line. The most important question, sad as it sounds, is whether or not testing children for type 1 diabetes risk is cost-effective.

Early research into this question tended to say that no, broad screening efforts are not economically worthwhile. A 2015 study concluded that screening would have to cost $1 or less in order to be viable (it’s a lot higher)—anything more would cost too much to justify the health improvements.

That study, however, looked only at the impact of reduced incidence of DKA, and not at the other benefits for patients. The University of Colorado’s Dr. R. Brett McQueen argued to the Scientific Sessions audience that this early study fell short of the mark, because screening is likely to offer many benefits beyond just DKA avoidance.

Dr. McQueen presented his own study, which assumed that screening would result in lifelong health improvements for patients with new-onset type 1 diabetes, such as improved A1c. While McQueen’s work confirmed that DKA avoidance alone was not enough to justify the high cost of most screening programs, those other benefits may tip the scales. Even an extremely modest improvement in glycemic control can make a big difference over the years, leading to many fewer diabetic complications and expensive interventions. And that’s before we even consider teplizumab, the potentially groundbreaking therapy that can delay onset for years.

The cost of screening is certainly substantial – Colorado’s ASK screening program ended up spending about $4,700 per case detected, a number that could be even higher when implemented elsewhere. But DKA and diabetes complications—think retinopathy and kidney disease—are pretty expensive too.

This type of math requires some guesswork. McQueen stated that if we want a rigorous accounting of how cost-effective early screening is likely to be, we’ll need about 30 years of follow-up data. Of course, we don’t have the luxury to sit back and wait for generations—“we need to make these decisions now.”

Conclusion

Today there is virtually no screening for type 1 diabetes risk factors in mainstream medical practice. There are many children (millions worldwide) that are at an enhanced risk of developing type 1 diabetes, and would stand to benefit from diabetes awareness and education.

Screening (and follow-up education) can have a significant positive effect. Risk screening has been shown to dramatically reduce the incidence of DKA, and is likely to improve diabetes management and reduce stress and anxiety. And the recent development of teplizumab, a drug that can delay the onset of the disease, may make early screening even more efficacious.

The most accurate screening would combine genetic testing at birth with antibody testing in early childhood, either once at age 3-4, or twice, at ages 2-3, and again at 5-7. But even a single test, either of genetics or autoantibodies, can provide significant predictive value.

Screening for type 1 diabetes risk could become a routine element of childhood checkups—if doctors and insurers can be convinced that it’s worth the effort, time, and money.

Source: diabetesdaily.com

Hitting a Nerve: Introduction to Neuropathy

This content originally appeared on diaTribe. Republished with permission.

By Cheryl Alkon

What is neuropathy? And more specifically, what is diabetic neuropathy? What are the symptoms and how can you prevent and treat neuropathy?

When someone hears about the long-term complications of diabetes, problems with the feet, foot ulcers, and even amputations are often brought up and can be some of the scariest outcomes. What leads to these issues is something called neuropathy, or damage to the nerves.

But neuropathy, and those subsequent complications, aren’t by any means a given – and prevention is possible. What is neuropathy and what can you do to avoid it entirely, or minimize it so that you can keep your feet, and the rest of your body, as healthy as possible?

What is the difference between neuropathy and diabetic neuropathy?

Neuropathy is the term used to describe any damage to nerves in the body (for example, an injury from a car accident can damage the nerves). Diabetic neuropathy, or diabetes-related neuropathy, is the term used to specifically describe the nerve damage from high glucose levels (hyperglycemia) over the long term.

Diabetes can cause three main types of neuropathies: peripheral neuropathy (medically referred to as distal symmetric sensorimotor polyneuropathy), autonomic neuropathy, and focal neuropathy.

Peripheral neuropathy affects the nerves outside of the brain and spinal cord, and often leads to symptoms involving the hands and feet. “This is what most people associate with diabetes-related neuropathy,” said Chris Memering, a nurse and inpatient diabetes care and education specialist at CarolinaEast Health System in New Bern, North Carolina.

Peripheral neuropathy involving the feet is the most common form of diabetic neuropathy. Loss of function in particular nerve fibers can change sensation and reduce strength in the foot. Loss of sensation can lead to injury from shoes that don’t fit, stepping on sharp objects you can’t feel, or not knowing the sidewalk is too hot. Neuropathy can also lead to pain, burning or other unpleasant sensations which may respond to medication.

But diabetes isn’t the only condition that can cause peripheral neuropathy. Other conditions that can lead to peripheral neuropathy include heavy alcohol consumption, trauma, nerve entrapment (such as that which occurs in carpal tunnel syndrome), vitamin B deficiency, chemotherapy, and an autoimmune process that attacks the nerves.

Neuropathy can also affect the functioning of the autonomic nervous system (which controls things like blood pressure, heart rate, digestion, and bowel and bladder function). This is called autonomic neuropathy. Autonomic neuropathy can lead to a variety of complications.

“In diabetes care, many people are familiar with hypoglycemia unawareness, erectile dysfunction or female sexual dysfunction, gastroparesis [when the stomach can’t empty properly and digestion slows], neurogenic bladder [when the nerves that tell your brain to tighten or release the bladder muscles don’t operate properly], or orthostatic blood pressure changes [dropping blood pressure when you stand up],” Memering said, adding that all these could be a result of neuropathy.

Finally, focal neuropathy results from issues with one or more nerve roots and usually happens suddenly. Focal neuropathies often involve both motor functioning – such as weakness – and sensory deficits, which can cause discomfort and pain.

What causes neuropathy?

Chronic hyperglycemia can damage both small and large nerve fibers. Over time, elevated glucose levels, often made worse by high triglycerides (a type of fat that can be found in the blood) and associated with inflammation (the body’s natural way of fighting infection) can cause damage to the nerves. That damage disrupts the way nerves interpret sensory information and how the messages about sensation are transmitted to the brain.

Usually, nerve damage from high blood sugar levels happens in the long nerves first (which run from your spine down to your toes), which is why the symptoms of peripheral neuropathy occur first in the feet. “The length of time someone has lived with diabetes increases their risk of developing neuropathies, as does that person’s level of blood glucose, in terms of A1C, Time in Range, and glucose variability,” Memering explained.

In essence, higher glucose levels over time increases your risk for developing neuropathy. This was confirmed by the famous Diabetes Control and Complications Trial (DCCT) and Epidemiology of Diabetes Interventions and Complications study (EDIC). The studies showed that the prevalence of confirmed peripheral neuropathy was 64% lower among participants in the intensive management group (those who managed their blood glucose carefully with treatment and kept their levels as close to normal as possible).

What does neuropathy feel like?

Symptoms of neuropathy usually start in the toes and progress upward. The sensations experienced with peripheral neuropathy differ from person to person. Some describe the feelings they have as numbness or tingling, while others say it feels like burning. Some say they are sensitive to being touched and cannot bear the feeling of a sheet or blanket covering their feet, while others describe it as feeling like they are always wearing a sock or a glove.

“Ultimately, you could end up losing protective sensation – which can be very dangerous and puts you at risk of not realizing when a part of your body is hurting or being injured,” Memering said. “While you may be able to still feel pressure – you know you are stepping on the ground with your foot – you may not be able to feel pain if you step on something sharp or hot.” This means you might not withdraw your foot from the unsafe environment, harming it further, and without realizing the extent of the damage.

The biggest concern about peripheral neuropathy involving the feet is that the loss of normal pain sensation can lead to greater skin and tissue damage. “Injury can result in the formation of a foot ulcer, which, if infected, can progress to ongoing tissue damage that can lead to amputation,” said Dr. Robert Gabbay, the chief scientific and medical officer for the American Diabetes Association. That’s why it’s so important to prevent, recognize, and treat any symptoms of neuropathy.

How is neuropathy diagnosed?

To assess for neuropathy, your healthcare team should do a thorough examination of your feet looking for sores or ulcers, changes in skin color, diminished pulses and any abnormality or injury to your foot. They can test for diminished strength, a change in your ability to know the position of your toes, and a change in sensation or sensory perception.

A foot exam will always involve taking off your socks and shoes, and your healthcare professional will inspect your feet to check for color changes, pulses, open areas, redness, rashes, and the overall condition of your feet, said Dr. Cecilia C. Low Wang, a professor of endocrinology, diabetes, and metabolism at the University of Colorado Anschultz School of Medicine.

A monofilament test uses a soft fiber to test for sensation in various parts of the feet and body, and a tuning fork can also help healthcare professionals understand how much sensation a person has lost. The monofilament test, as well as a pinprick test, can check to make sure you have good sensation, while other tests will evaluate vibration and position sense (whether you are aware of where your foot is). “The main question I would suggest asking your diabetes provider is whether they notice anything concerning about your foot exam, and whether they think you need to do anything different, or see an additional specialist, such as a podiatrist,” said Dr. Low Wang.

In this age of telehealth visits, some podiatrists have been sending a monofilament (a small strand of nylon attached to a piece of plastic) to a person’s home and teaching them how to use it to determine if they have reduced sensation in different areas of the feet. Podiatrists might even examine a person’s foot onscreen during a video visit and ask questions about how the foot feels or looks. “If there’s something of concern, they will schedule an in-person visit,” added Memering.

If someone is experiencing symptoms of autonomic neuropathy, a healthcare professional may recommend a specific test depending on what the autonomic symptoms are. For example, if there are issues with blood pressure control, taking your blood pressure as you change positions from lying to sitting to standing or using a formal tilt-table test, may show loss of autonomic control of how your body regulates your blood pressure. If you have symptoms of delayed gastric-emptying (stomach-emptying), specialized radiology tests might be ordered that show the time it takes for food to exit the stomach. The Mayo Clinic has an informative list about many of these tests. If you have any symptoms of autonomic neuropathy, such as bladder or erectile dysfunction, feeling faint on standing up, or bloating and fullness, talk to your healthcare professional and explain what you are experiencing.

What are the best treatment options for neuropathy, especially in the hands and feet?

Although it is not always possible to prevent neuropathy completely, the best way to slow its progression (as shown in the DCCT) is to closely manage your blood sugar levels and try to stay in range as much of the time as possible. If neuropathy does develop, medications can decrease the burning and tingling sensations, said Dr. Gabbay.

“Diabetes is a leading cause of neuropathy, and the higher someone’s blood sugar levels are over time, the more likely they are to develop neuropathy,” Dr. Gabbay said. “The good news is by managing blood sugar levels, one can significantly reduce their risk of developing neuropathy.”

With painful neuropathy, “treatments are generally to try to manage symptoms,” Memering said. “Medications such as Neurontin [gabapentin, a drug used for pain and seizures], Lyrica [pregabalin, a drug used for pain and seizures], or Cymbalta [duloxetine, a drug used for chemical balance in the brain] may be used to help with pain associated with painful peripheral neuropathies. These medications can be very effective, but it may take a few weeks to adjust and find the right dose. However, people should know that the medications can also be somewhat sedating.” Other drugs that may be effective include drugs used for mood disorders such as venlafaxine, nortriptyline, or amitriptyline, said Dr. Low Wang, but they may have side effects at higher doses and with older age.

Dr. Gabbay added that neuropathy “is a very active area of research to identify new and effective treatments.”

There are also various treatments to help improve the symptoms of autonomic neuropathy:

  • For Postural Blood Pressure Changes:
    • If you have a significant decrease in your blood pressure on standing, your healthcare professional can teach you how to get up slowly to allow your body to regulate your blood pressure with positional change.
    • You can also wear an abdominal binder, which Memering described as “a big elastic girdle that puts more pressure on the big blood vessels in the body,” so that they have more support when changing positions.
    • Other treatments include adjusting salt intake, using compression stockings, doing physical activity to avoid deconditioning, and staying hydrated, said Dr. Low Wang.
  • For Neurogenic Bladder:
    • If you are experiencing a neurogenic bladder, urinating at regular intervals during the day and night can help the bladder empty even if you no longer feel the urge to urinate. You might also undergo a urinalysis or a bladder scan, said Dr. Low Wang. Medications can also help.
  • For Gastroparesis:
    • Eating low-fiber, low-fat foods in smaller and more frequent meals and getting a greater proportion of calories from liquids might help, said Dr. Low Wang.
    • Sometimes the drug metoclopramide (Reglan) may be prescribed and gastric electrical stimulation might be used in severe cases.
  • For Erectile Dysfunction:
    • You may be prescribed one of the medications – sildenafil, tadalafil, avanafil, or vandenafil – but you may also need to undergo a physical exam, or other tests.

If you are experiencing any of the symptoms of neuropathy, you should speak with your healthcare professional to determine what diagnostic tests need to be done and what treatment course might be best for you.

Can you reverse diabetic neuropathy?

Currently, neuropathy can’t be reversed, but its progression may be slowed. Keeping blood sugar levels in the recommended targets is the key to doing so, Memering said. “The use of diabetes technology may be very helpful – especially continuous glucose monitors – for keeping your blood sugar in range, along with eating a varied diet, including vegetables and fruits, and exercising regularly,” she said.

Tips for living with diabetes and neuropathy

The two best things someone with diabetic neuropathy can do are to:

  1. Manage their blood sugar levels to keep the neuropathy from getting worse.
  2. Check their feet regularly, both at home and during healthcare appointments.

Check your feet at home

Dr. Gabbay, Dr. Low Wang, and Memering each recommended that all people with diabetes, whether young or old, newly diagnosed or not, should regularly check their feet. Dr. Gabbay advised, “Use a mirror to see the bottoms of the feet and make sure there are no cuts or ulcerations” that would need immediate attention to ensure they don’t worsen. If need be, ask someone in your household to help you inspect your feet.
To help avoid foot injury, Dr. Low Wang recommended: “Always wear socks and well-fitting shoes, avoid going barefoot, and look at shoes before putting them on to be sure there is nothing in them.”

No matter where you are in your diabetes journey, daily foot checks “partly establish the habit before there are any problems, but are also a way to get to know your body so you can understand what is normal for you and what is not,” Memering said. “That way, when there is a change, you can all your healthcare office right away. Don’t wait until your next appointment ­ – call,” she said, adding that they should be able to tell you if you need to make an appointment right away.

Remember, as with many complications of diabetes, for neuropathy prevention is key! To learn more, view or download our infographic on preventing neuropathy.

About Cheryl

Cheryl Alkon is a seasoned writer and the author of the book Balancing Pregnancy With Pre-Existing Diabetes: Healthy Mom, Healthy Baby. The book has been called “Hands down, the best book on type 1 diabetes and pregnancy, covering all the major issues that women with type 1 face. It provides excellent tips and secrets for achieving the best management” by Gary Scheiner, the author of Think Like A Pancreas. Since 2010, the book has helped countless women around the world conceive, grow and deliver healthy babies while also dealing with diabetes.

Cheryl covers diabetes and other health and medical topics for various print and online clients. She lives in Massachusetts with her family and holds an undergraduate degree from Brandeis University and a graduate degree from the Columbia University Graduate School of Journalism.

She has lived with type 1 diabetes for more than four decades, since being diagnosed in 1977 at age seven.

Source: diabetesdaily.com

Debate at the ADA: Should Athletes with Diabetes Go Low-Carb, or High-Carb?

By Maria Muccioli and Ross Wollen

***

Do you need carbohydrates to optimize athletic performance? Or can athletes with diabetes do even better when they fuel their bodies with protein and fat?

By now it’s clear that the low-carb approach to diabetes has largely gained clinical acceptance, for people with both type 2 and type 1 diabetes (T1D). But some questions remain about when carbohydrate restriction is and isn’t appropriate.

One of those big questions: athletics. It’s long been conventional wisdom that athletes – whether elite professionals or weekend warriors – absolutely need carbs to fuel performance. But when you’ve got diabetes, “carb loading” the night before a big race is a tricky proposition.

At this year’s ADA Scientific Sessions, two experts went head-to-head in a debate on “Carbohydrate Intake and Its Impact on Athletics and Health.”

Read on to hear what happened – and who, in our opinion, won the debate.

The Case for a High-Carb Diet

In his presentation titled “High/Normal Carbohydrate Intake Optimizes Performance and Glycemia,” James P. Morton, PhD argued in favor of a normal-to-high carbohydrate approach for athletic performance and blood glucose management. Morton is a professor of exercise metabolism at Liverpool John Moores University.

Morton focused his talk on the importance of fueling high-energy expenditure for elite athletes, such as those on multi-week bicycle races. He presented some data showing that people who consumed a high-carb load were able to exercise for longer periods of time than those who consumed a placebo solution. Morton pointed out that for professionals, even tiny differences can make the difference between victory and defeat.

As an example, Morton presented a case study of Tour de France winner Chris Froome. In 2018, Froome made a very dramatic comeback on the 19th day of a multi-week cycling race. He ate an incredible amount of carbohydrates that day and the day previous, which Morton believes contributed significantly to his victory.

How do carbs fuel performance? The primary explanation centers around the availability of glycogen (branched glucose molecules) in the liver and muscle. The higher the glycogen levels, the more glucose is readily available to power activity.  Morton also presented evidence that those who eat high-carb delay the point at which they begin burning fat for energy, and claimed that delaying this crossover point was important for top performance in endurance athletes.

In addition, Morton cited personal testimonies from some elite endurance athletes, such as audio of interviews from his podcast, claiming that support of high-carb for athletic performance is “unanimous.”

Unfortunately, little of this presentation had much to do with the unique challenges of athletes with diabetes. And for that matter, its focus on truly elite professionals may be of limited relevance to even the most avid part-time athletes. Morton has never worked directly with athletes with type 1 diabetes, but referred to the opinions of his “friend and colleague” Sam Scott, PhD, a researcher at Novo Nordisk. Scott has plenty of firsthand experience with high-performing diabetic athletes: he works with Novo Nordisk’s inspiring all-diabetes pro cycling team.

Morton invited the audience to read Scott’s recent publication concerning type 1 diabetes, carbohydrate intake, and athletic performance. In that paper, Scott concludes that low-carb diets “represent an effective strategy to improve glycaemic control and metabolic health in people with T1D,” but that their effect on athletic performance is basically unknown:

Despite low carbohydrate training being one of the most widely debated topics amongst athletes, coaches and sport scientists, there is very little published research specific to athletes with T1D.

Some evidence suggests that people with type 1 diabetes might especially benefit from “train low” strategies – basically, limiting carbohydrate intake during regular training, and increasing carb consumption for competitions. Beyond that, however, there simply isn’t enough evidence to make concrete claims.

Leaning on his experience with non-diabetic athletes, Morton concluded:

Regardless of whether you have normal glycemic responses or you have type 1 diabetes, the principle of ensuring high carbohydrate availability should always be upheld, because carbohydrate will certainly make you go faster.

The Case for a Low-Carb Diet

In his presentation titled “Low Carbohydrate Intake Optimizes Performance and Glycemia”, Dominic D’Agostino, PhD argued that because low-carbohydrate diets are optimal for blood glucose control, they are therefore also optimal for athletic performance.

D’Agostino, a molecular pharmacologist, is something of a minor rock star in the keto community. He’s a frequent guest on podcasts and Youtube shows, and has a fair personal understanding of keto athletic achievement: he’s an impressive powerlifter to boot.

D’Agostino started by acknowledging that we do not really know the best level of carb intake for athletes. But in his telling, practices even among the elite are far from unanimous, with athletes experimenting with a variety of strategies, ranging broadly from carb restriction to carb loading.

Many athletes choose a low-carb diet because they like the way that it feels – some claim, for example, that keto results in more consistent energy throughout competition, making them much less likely to “bonk” or hit the wall. But for people with diabetes, the primary point in favor of a low-carb diet is the degree to which it optimizes glucose control.

A very low-carb or ketogenic diet doesn’t just steady blood sugar – it also appears to result in some measure of “hypoglycemic resilience”. This isn’t a small matter for diabetic athletes. Hypoglycemia during exercise or competition won’t just ruin athletic performance: it can be very dangerous.

Not only does ketosis protect against hypoglycemia, he explained, but recent research also shows additional benefits of ketosis, such as reduction of oxidative stress. D’Agostino also noted that increased fat utilization can lead to “glycogen sparing”, and that a low-carb diet does not cause glycogen depletion in the muscle. These features may confer additional athletic advantages.

Photo by Adobe Stock

While Morton’s presentation was largely founded on the assumption that athletes with diabetes are fundamentally like athletes without diabetes, D’Agostino emphasized a different principle:

Normal glycemia is optimal for health, performance and recovery.

Of course, normal blood glucose levels are very difficult to achieve for people with type 1 diabetes, especially during exercise. But the low-carb diet has been validated as perhaps the best method of doing so.

D’Agostino explained that his own thoughts on the subject were formed partially by the experience of his former Ph.D. student, Andrew Koutnik, who lives with type 1 diabetes. Initially, D’Agostino believed that type 1 diabetes was “the one condition that I thought you would want to stay away from low-carbohydrate nutrition,” but Koutnik’s success first convinced him otherwise.

I reached out to Koutnik, now a research scientist at Florida Institute for Human and Machine Cognition.

He stressed that most studies comparing high- and low-carb athletic results show mixed or neutral results; when there is a difference, the difference “is often of little meaningful impact to most individuals engaging in physical activity.”

Dr. Koutnik argues that any nutritional program that doesn’t consider glycemic control is missing the most important factor: “Very few will debate that poor health leads to poor performance. Additionally, few will debate that normoglycemia is likely to lead to better performance than hyper- or hypoglycemia.” Therefore, for the T1D athlete, performance is a “consequence” of health.

Who Won the Debate?

Here are our thoughts:

At a diabetes conference, the focus should remain on diabetes. Although Morton presented some evidence to support the performance benefits of high-carbohydrate intake in elite athletes without diabetes, it’s a mistake to assume that the same benefits would occur in athletes with diabetes, or that they wouldn’t be counterbalanced by the known downsides of high-carb consumption. Glycemic management is a huge issue during exercise, and both low and high blood sugars can have dramatic effects on performance.

exercise woman

Photo by Andrew Tanglao (Unsplash)

Most of Morton’s talk also focused on elite endurance athletes. But what we learn from the best athletes on the planet may not be very useful for the rest of us.

In our opinion, D’Agostino showed a better understanding of the balancing act that athletes with diabetes (especially type 1 diabetes) need to perform.

Even if we accept that carb loading can provide a perceptible boost to serious athletes, we have to acknowledge that those carbs (and any accompanying insulin) also make it more likely for the athlete to experience hypo- or hyperglycemia, which can instantly ruin any sports outing. And the more predictable and stable your blood sugar, the more confident you can be, and the less mental space you’ll have to waste on monitoring and micromanaging glycemic changes. And if a ketogenic diet really does provide some protection against hypoglycemia, that’s just even more reason to choose a very low carb diet.

If you’re actually an elite athlete, maybe carbohydrates can help push you to the peak of performance. But maybe not – the scientific evidence is not overwhelming. For the rest of us, blood sugar control remains of paramount importance. It seems to me that a low-carbohydrate diet is more likely to deliver confident performances and strong athletic results.

What are your thoughts on this debate?

Source: diabetesdaily.com

Insulin at 100, Part 2: Failed Promises, Bold Breakthroughs

This content originally appeared on diaTribe. Republished with permission.

By James S. Hirsch

Insulin

Image source: diaTribe

The discovery of insulin in 1921 was heralded as the cure for diabetes. The reality was different.

Insulin, to be sure, could temporarily lower blood sugars to near-normal ranges, but it could also cause hypoglycemia – blood sugars that are too low – that could lead to shakiness and confusion or, in extreme cases, seizures, loss of consciousness, or death. Insulin was a daily, self-administered drug, but if used incorrectly, it could kill a patient just as well as it could save a patient. No self-administered therapy, before or since, has quite those same attributes.

What’s more, insulin’s therapeutic powers were overestimated. Yes, insulin lowered blood sugars, but maintaining near-normal levels was still very difficult – and elevated blood glucose over time was still dangerous. As a result, by the middle of the 1930s, patients who were taking insulin began developing serious complications caused by elevated glucose levels, including damage to the eyes, kidneys, nerves, and heart. Insulin hadn’t cured anything but had turned diabetes from a deadly condition into a chronic condition, and a perilous one at that. At the dawn of the insulin age and for many decades thereafter, even those who understood the importance of maintaining near-normal blood sugars did not have the tools to do so. Blood sugar levels were measured by proxy through urine tests, in which samples had to be boiled for three minutes. Simpler methods were developed by the 1940s, but home glucose monitoring was not available until the late 1970s.

Until then, patients – unaware of their blood sugar levels – gave themselves insulin doses flying blind.

But few people outside the diabetes world knew about the daily rigors and risks of the disease – not only because it affected a relatively small percentage of people but also because the insulin narrative was too powerful.

Diabetes, after all, had been cured or at least resolved. That’s what all the pictures showed. That’s what the headlines blared. And that’s what the ads promoted.

Eli Lilly’s ads, for example, initially touted insulin as “An Epoch in the History of Medicine” and later featured a beautiful bride on her wedding day, kissing her beaming father, with the tagline, “Our favorite picture of insulin.”

Even that picture paled in comparison to the astonishing newspaper and magazine stories about insulin, and not just those about Elizabeth Evans Hughes. Insulin was a redemptive tale about science and survival.

Eva and Victor Saxl were Czech immigrants who fled to Shanghai during World War II. There, Eva was diagnosed with diabetes, and when her insulin supplies ran short, Victor, a textile engineer, found a book that described how to make insulin and, using the animal organs from a nearby slaughterhouse, brewed up enough insulin for his wife to survive. After the war, they immigrated to the United States, and when their story was discovered, they soon found themselves on numerous radio and television shows, including Edward R. Murrow’s, and a movie was also produced – about a husband’s devotion to his wife, expressed through the salvation of insulin.

Other life-saving medical breakthroughs occurred – antibiotics in the 1940s, the polio vaccine in the 1950s – and these would treat more people than insulin. But the unique circumstances of insulin’s discovery, with the young, untested scientists finding the potion that would bring children back from the brink of death, was too dramatic to ignore. In 1988, that story was the subject of a television movie on Masterpiece Theater called “Glory Enough for All,” based on Michael Bliss’s definitive book, “The Discovery of Insulin.”

I watched the movie on PBS when it was released, and it featured the brawling Toronto researchers – Banting and Collip literally came to blows over control of the experiments. But ultimately, the movie was about the triumph of medical science in saving dying children, and among the researchers, there was “glory enough for all.”

And then the movie ended.

There was nothing about living with diabetes – about the wildly fluctuating blood sugars, about the relentless demands, about the injections and the doctor visits and the complications, about the dietary restrictions, about the stigma and the isolation and the limitations of insulin.

“Glory Enough for All” was introduced by Alistair Cooke. An American-born Brit with a silver tongue, Cooke was enthralled not only by insulin’s inspirational story but also by the phrase “islets of Langerhans,” used to describe the island of pancreatic cells discovered by Paul Langerhans. “Islets of Langerhans” just rolled off Alistair Cooke’s tongue. To him, insulin was not just a miracle. It was poetry.

The lyrical beauty of insulin was lost on patients. Many of them, in fact, were frustrated that their own stories weren’t being heard. The parents of young patients were frustrated as well.

In 1970, a professional singer in Philadelphia, Lee Ducat, had a 10-year-old boy with type 1 diabetes, and she was miffed by the breezy disregard of his doctor, who told her that “insulin was the cure.” Ducat knew that wasn’t true, so with several other parents, she formed the first chapter of the Juvenile Diabetes Foundation (which is now the JDRF). Other parents soon opened chapters in New York, Washington, New Jersey, and Miami, and their mission was to educate the public about the stark challenges of diabetes in hopes of raising money and finding a cure.

They had no use for the American Diabetes Association, which was founded in 1940 and for many years was little more than a social club and referral service for physicians. As far as the parents were concerned, the ADA was complicit in perpetuating the jaunty insulin narrative that had hurt the cause for decades. Unless the truth about diabetes was known, how could lawmakers, regulators, philanthropists, and journalists – not to mention clinicians – do what had to be done to improve the lives of people with diabetes?

That question was driven home when the JDF chapter in Miami bought a full-page newspaper ad in 1972 to publicize its cause. The ad featured a little boy in a crib holding a glass syringe, and it described the many complications that could arise from diabetes, including blindness and amputations. The headline read, “The Quiet Killer.”

On the day the ad appeared, Marge Kleiman, whose son has type 1, was working in the JDF office, and the phone rang.

“I’m Charles Best,” the caller said, “and I discovered insulin.”

Now retired, Best had become an icon who, after Fred Banting died in 1941, carried the mantle for the Nobel-winning team that had discovered insulin. Best had been praised by the pope, the queen of England, and other heads of state, and he had given the keynote address at the ADA’s first meeting and later served as its president. He happened to be in Miami on the day the JDF ad appeared, and he was outraged.

“What kind of propaganda are you using?” he screamed. “You’re frightening people! This is not the way it is!”

Kleiman knew better. “Dr. Best, what you did was wonderful,” she said. “It allowed people to live longer. But we’re not trying to frighten people. If you tell the truth, maybe they can avoid these complications. Please don’t tell us to keep quiet.”

The JDRF, now a massive international organization focused primarily on type 1,  has continued to tell the truth about diabetes – and fund research – ever since, but changing the insulin narrative was not going to be easy.

Patients could at least take solace that the insulins kept getting better. The first extended-action insulins were introduced in 1936 and continued with widely used NPH insulin (1946) and the Lente insulins (1951). But the real improvement came in the 1970s, spurred by concerns about actual insulin supply. Meat consumption was declining, and slaughterhouses were cutting production, while the number of people with diabetes had been rising steadily (in 1976, there were about 5 million Americans with the disease). At some point, insulin demand could outstrip the animal-based supply.

As described in the book Invisible Frontiers: The Race to Synthesize a Human Gene, by Stephen S. Hall and James D. Watson, the specter of an insulin shortage triggered a race to develop genetically engineered insulin using recombinant DNA technology. Investigators succeeded by inserting the insulin gene into bacteria, which produced insulin that was chemically identical to its naturally produced counterpart.

The first human insulins, Humulin (made by Eli Lilly) and Novolin (made by Novo Nordisk), were introduced in the 1980s. Whether they were superior to animal-based insulins is a matter of debate, but they alleviated fears about an impending global insulin shortage.

Moreover, researchers soon discovered that changing the order of two amino acids in the human insulin molecule created a faster-acting formulation, and that led to the introduction of Humalog (1996) and Novolog (1999). Known as “insulin analogs” because they are more analogous to the body’s natural release of insulin, they were considered clear advancements. Another huge leap came with long-lasting basal insulin analogs, specifically Lantus (by Sanofi in 2000) and Levemir (by Novo Nordisk in 2005). These insulins keep blood sugar levels consistent during periods of fasting and, typically taken once a day, replicate the insulin release of a healthy pancreas. They were immensely popular and also used by many type 2 patients – Lantus was a $5 billion a year drug by 2011.

The improved insulins changed how patients cared for themselves, as the new formulations led to “basal-bolus” therapy – a 24-hour insulin complemented by a mealtime insulin – and that became the standard of care for type 1 diabetes. (Insulin pumps use the same basal-bolus framework.)

A new era of diabetes care, thanks to these insulin breakthroughs, appeared to beckon.

Stay tuned for part three of this riveting story next week!

I want to acknowledge the following people who helped me with this article: Dr. Mark Atkinson, Dr. David Harlan, Dr. Irl Hirsch, Dr. David Nathan, Dr. Jay Skyler, and Dr. Bernard Zinman. Some material in this article came from my book, “Cheating Destiny: Living with Diabetes.”

About James

James S. Hirsch, a former reporter for The New York Times and The Wall Street Journal, is a best-selling author who has written 10 nonfiction books. They include biographies of Willie Mays and Rubin “Hurricane” Carter; an investigation into the Tulsa race riot of 1921; and an examination of our diabetes epidemic. Hirsch has an undergraduate degree from the University of Missouri School of Journalism and a graduate degree from the LBJ School of Public Policy at the University of Texas. He lives in the Boston area with his wife, Sheryl, and they have two children, Amanda and Garrett. Jim has worked as a senior editor and columnist for diaTribe since 2006.

Source: diabetesdaily.com

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