I'm hoping I just coined a new acronym for something that very few people seem to be talking about: DILDO. No, not the vibrator thing, but it's kind of related. I'm guessing I've invented a new term because very few people seem to be talking about - or admitting - that diabetes can have an effect on a man's libido, or sexual function (I can't comment about possible female-related issues). Yes, there will be passing references about it. But possibly because there's shame and fear related to the topic, or a lack of specific therapies to deal with it, I've been unable to learn much about this problem, and so I'm cracking open the topic, and giving it a MEMORABLE NAME ("Excuse me, do you have DILDO?" "Are you experiencing DILDO symptoms?"), and talking about my experience with it in the hope that others can feel better about it or have some hope.
Last summer apparently, my pancreas finally gave up after 50+ years of doing its job, and I began to lose weight rapidly, and experience extreme thirst, cramps, loss of appetite, only to learn that my blood sugar levels had jumped to 300+ and my a1C was near 20% (a normal a1C should be below 5%). BUT, in looking back, I know that for a few years now I'd been "borderline diabetic" with an a1C hovering just over 6, and I was just supposed to watch my weight and exercise and wait to see if things got better or worse. Well, on a separate track, for the past few years, I also was feeling like my interest in sex had declined significantly, from several times a day to only several times a month. For better or worse, however, I wasn't experiencing sexual disfunction, or the inability to have sex. I just wasn't as interested in pursuing sex (or even fantasizing about it) as much as I had been for most of my adult life. This led me to have expensive bloodwork done to determine whether my testosterone levels were below normal, which they weren't. I also tried taking DHEA to see if that helped (which it didn't appear to). So my question is: are middle-to-later-aged men treating their lower libido with pills like Cialis and Viagra, just like Type 2 diabetics are treating their insulin resistance with insulin, when in fact these problems are better treated in other ways (in the case of T2D, diet an exercise are better "fixes" for T2D vs. loads of insulin)? Now, the trick is, I don't know what the "fix" is for a lower libido, but I wonder if it has to do with my new T1D condition, which came along around the same time as my lower libido conditions. Anyone have a similar situation, and any ideas for improving things?
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I started writing this several weeks ago, but if I wait too much longer it won’t even be news anymore: CGMs will be the NEXT BIG THING for athletes, carb watchers or just the body-statistics-curious to be using to manage their glucose levels.
First of all, for the uninitiated, a CGM, or continuous glucose monitor is a device you attach to your arm (usually) that can be scanned regularly or automatically sends data every minute or so to see what one’s glucose levels are in their bodies. For diabetics, these devices are a game changer, because it only requires using a needle once every week or two to inject a filament into the subcutaneous layer of one’s skin instead of poking one’s finger with a needle several times a day to coax out a drop of blood to take a reading. CGMs are also great because they can tell someone whether their blood glucose is going up or down, or falling into dangerous ranges that require more sugar or more insulin to regulate. With insulin pumps that some people also attach to their bodies, it’s an even more convenient way to help regulate blood sugar levels without constant injections before every meal. Also for the uninitiated, “blood sugar” (or “glucose”) levels are measures that pretty much everyone gets when they have blood drawn just before their annual exam. If you’re like me, you tend to ignore those dozens of numbers that come back each time, except maybe those items that get flagged in red, and cholesterol levels, which everyone tends to pay attention to. If your glucose count is less than 100, or just barely over it, chances are your doctor won’t even point it out to you. Mine was just over 100 for nearly 13 years of testing, until a few years ago when it started hitting 106, and 116, and then 123. The challenge with glucose levels, however, is that they bounce around a lot from minute to minute, depending on food ingested, movement, stress and all kinds of factors. A “fasting” blood test helps to ensure your glucose levels will be relatively low, though, now that I have a monitor I see in the morning how my glucose can jump from the 60s to the 90s just by getting out of bed. So that’s why doctors will probably also add an a1C test for people who consistently bat over 100 on their glucose levels because this test estimates how much total sugar is in a person’s blood at a given time, regardless of fasting, etc. Unfortunately, my low 100s number jumped to 297 last summer when I unknowingly contracted Type 1 Diabetes, and my a1C came in at 19.7 - meaning that 20% of my blood was sugar! And that’s a problem for blood vessels, especially the tiny ones around the retina. Anyway, back to CGMs for the rest of the world. Turns out, they’re also instructive for people even if they have a healthy functioning pancreas (the producer of the body’s insulin, which helps sugar in the blood stream to be absorbed into cells and feed the body), because it shows you what happens to your body’s blood sugar levels when you eat certain foods. For me, I can consume protein and fat all day long and barely move the needle on my CGM. Adding certain vegetables like broccoli, spinach, asparagus and other low-carbohydrate produce to my omelettes and salads also shows little effect on my CGM. But eat a corn chip or some corn kernels (or unfortunately, cornbread) and PRESTO! My blood sugar will jump from below 100 to 250 or over 300 in a few minutes, like I was eating straight sugar. Same with rice, pasta, bread, oatmeal, potatoes, most fruits and grains, if I have more than a bite or two of them with other foods. For a diabetic, they will calculate the number of carbs, proteins, and fats in a meal just as they’re about to eat it to help them estimate how much rapid insulin to take to help avoid or quickly flatten the spike that the food is about to cause in their bodies, just as natural insulin would do on its own. But a body that doesn’t have Type 2 insulin resistance to overcome, or Type 1 lack of insulin present, technically doesn’t need to monitor their glucose, right? Well, glucose spikes affect everyone to the degree that it stops the body from taking energy out of stored fat cells, and instead focuses on both using the rush of new carbs hitting the stomach to produce energy AND ALSO starts converting carbs and storing them in fat cells. So for someone trying to lose weight, many studies show that a very low-carb diet will force the body to draw on fat cells to create energy, a process that is enabled by “ketosis.” And while keto diets don’t require monitoring glucose levels, what it DOES do is to educate the CGM wearer of those foods that may be short-circuiting fat loss, and instead may be contributing to weight gain. Another thing that can occur when higher-carb foods are eaten, is that the carb-conversion process also temporarily inhibits the type of energy the brain feeds on, causing tiredness or lack of mental focus for awhile (sometimes called “sugar crashes”). There are places on the Internet that people can get access to CGMs even if they aren’t diabetic, but they can be expensive - $200-300 a month - because insurance is unlikely to cover them. But for every article like this one suggesting that CGMs can help educate people about what happens to their body when they eat certain foods, there are 5 articles discouraging people from using them, because they fear it will cause people to avoid healthy carbohydrates that the body needs to survive. In fact, even the diabetic dietitian specialists I’ve been coached by in the past 6 months have cautioned me to keep eating potatoes, or said I deserve to have desserts, or asked me if my diet has been “sustainable” for me. Of course, they don’t ask if my exercise decisions have been sustainable or not? They only care that I don’t turn to a diet filled strictly with meat, cheese and butter because that’s just wrong (actually, they fear it will raise my cholesterol levels, even if there still aren’t studies proving this link between high-cholesterol foods and high cholesterol levels). So, if you start to notice these little white quarter-size plastic disks on people’s triceps (or a round bandage covering a lump in the same place), you may have spotted a diabetic who can see their minute-by-minute blood glucose changes, or it may just be someone who’s simply curious to find out how their body reacts when they eat certain foods. The statistics can be discouraging. Not only is diabetes growing exponentially (I won't bother to quote all the searchable results for predictions of just how many people in the US are expected to contract the disease in coming years), but it is bringing a whole host of health complications that are keeping endocrinologists, heart doctors, retina doctors, dietitians and a whole host of professionals in business. More accurately: diabetes patients are overwhelming a medical system that has too few people available to help and still lacks a lot of answers to the problem.
The good news is that there are growing resources, studies, and technology advances that are helping in the war against diabetes (see other Hacks for details). The bad news that there are also a lot of well-meaning "experts" I've encountered that tend to rain on my diabetes parade. Here are some of the raindrops that keep falling on my head from the experts and coaches who are supposed to be helping me:
I am happy to say that, in contrast to all these voices I've heard in recent months telling me that rapid-acting insulin (i.e., more units per day) is inevitable in my (near) future and that I should start taking it now, one voice - a Mayo Clinic nurse who's had Type 1 diabetes for 30 years - told me that there was no rush, and that in my case they may not be correct with my body and my current situation. This gave me hope - not false hope - and motivation not to rush into adding more drugs and more tech to my body when, in fact, I am currently able to get by on just 8 units of basel (long-acting) insulin a day while maintaining glucose levels between 70-180 more than 95% of the time. About a year ago, I started seeing a functional medicine specialist (who is also a certified M.D.), to seek out answers for managing my T1Diabetes and corresponding lower libido, through other means besides man-made prescription drugs. After batteries of blood and other tests, we landed on a regimen that included a long list of OTC supplements to act as "insulin sensitizers" that can reduce one's volume of daily insulin injections.
Currently, I take 6-7 units of Tujeo, or long-acting insulin, and only OCCASIONALLY take 1-3 units of Lispro, or rapid-acting insulin, every 2-3 days as needed when I choose to enjoy an occasional higher-carb meal or treat like pizza, pasta or dessert. And I believe those numbers are lower than average, at least partly because of these supplements. Before taking a bunch of supplements, anyone with diabetes should let their doctor know to avoid interaction issues, but here are some things that I take that can be considered: 1) Chromium picolinate 2) Citrus Bergamot 3) Lipoic Acid 4) Magnesium 5) Folic Acid (not for insulin, but for retinal eye health/prevention) 6) Berberine 7) Zinc Note that when I told my endocrinologist that I was taking these, except for the folic acid, he warned that because supplements are not regulated by the FDA, one never knows what's really inside these capsules, but that doesn't mean they're useless. Some research, or buying through a functional medicine specialist, can help shore up this issue. The other caution my endocrinologist gave me was that few to none of these supplements have been proven in studies to be efficacious. My response is: everyone responds differently to different diets, medications, foods, etc. Consider trying these and see if they help. Granted, there's only so much information that can be stuffed into your head when you're first getting diagnosed, treated and trained on how to manage your diet, exercise, and medications as a Type 1 diabetic. But it would have been nice to have known that, when you are first diagnosed with Diabetes - Type 1 or Type 2 - that there is something called a “honeymoon” period where it takes time for your body and insulin dosages to learn how to partner together in regulating blood glucose levels.
First of all, it’s a major misnomer. “Honeymoon phase” is a term typically applied to a period of time where everything is magical and easy, like the trip that a newly married couple traditionally takes right after a wedding ceremony. This may be applied to a new job, a new relationship, a new car, or anything that feels new and special. And people will commonly say “their honeymoon phase is over” when reality sets in on something new and the hard work begins. But the honeymoon phase of beginning insulin shots is anything but a honeymoon-style experience. I’m not even talking about the realities of poking your finger several times a day (at least until you get access to continuous glucose monitors, which require you only to poke your upper arm once a week or two in order to attach the sensor to your body), or stabbing your abdomen once or more a day with the insulin injector. I’m talking about the fact that, when many people start taking insulin for the first time, they may experience wild differences from day to day in their blood sugar levels, regardless of the number of units one takes. For the “new” diabetic, this can be frustrating, troubling, and even stressful. In other words, it’s ANYTHING but a honeymoon. And this matters because if one takes too little insulin, then their blood sugar levels in their blood stays too high, which is bad for the eyes, circulation in general, and can feel uncomfortable. For me, I watched my glucose rise over 400, which is the limit of many measuring systems, for many hours before coming back down. This was partly because I wasn’t given rapid insulin initially to help me manage diet-related swings. Nonetheless, it was disconcerting. The opposite situation can be much more threatening: Take too much insulin at a time and glucose levels can swing below 60, or 50 or 40 or more and send someone into a diabetic coma. So while taking too little insulin at a time is a problem for longer term management of diabetes, taking too much is much more dangerous. Which is why it took me more than a month for my body to start reacting more consistently to daily doses of long-acting insulin, and for my blood sugar to stay in a more moderate 70-170 zone, as I experimented and learned how to slowly bring my averages down without creating a really low swing. So could we please come up with a more accurate term for that very awkward period of learning to adjust to insulin intakes - perhaps the “dating phase” which many times can be very awkward as people learn to slowly share and read each others’ signals about when they’re happy or mad, or interested or not? That’s my vote. Okay, first of all, there are dozens of places a person can go to on the web to understand the technical difference between T1D and T2D, and explain it much more thoroughly than I can. I'm writing this blog because, after contracting diabetes, I read about it several times, and it was explained to me several times by various articles, books, doctors, endocrinologists, nurses, etc. But even with an above-average IQ, it took awhile for it to sink in.
So, the purpose of this article is to try and cut through all the technical stuff and focus on what I think matters on the topic for those who are curious about the topic but don't want to get lost in the mire. On the surface, T1D and T2D share these commonalities:
Conventional wisdom is that adults who start developing symptoms of diabetes in their 20s and beyond, and especially in their 40s or 50s, have Type 2 Diabetes. Traditionally, Type 1 is referred to as "juvenile diabetes," because most cases of T1D, traditionally, develop in childhood, for reasons that are still not fully understood.
In fact, when my glucose numbers jumped from the lower 100s suddenly into the 300s (and my a1C flew from 6.3% to 19%), my internist told me with a confident nod (but no testing) that I had Type 2 Diabetes, especially because I had no (known) family history of the disease. But, it turns out that recent studies show that 62% of T1D cases develop in patients who are older than 20 years now, and that misdiagnosis occurs in nearly 40% of adults with T1D, according to a 2021 study by the National Institutes of Health. I was one of those people who was initially mis-diagnosed, and probably unknowingly had T1D for more than a decade before it was discovered. In reading this study online, I believe I may have had LADA or "latent autoimmune diabetes in adults, a progressive autoimmunity that was slowly attacking my pancreas, but not enough to bring on the extreme symptoms I experienced (see Hack 6) until the past year. In fact, it may have been my 20-year-long Zone Diet and Muscle Hack (low carb) diets that help keep symptoms at bay because my body didn't require as much insulin to break down the limited carbs I was eating at each meal. Ironically, I had started relaxing on carb intake the past couple of years, which may have prompted the extreme symptoms that "suddenly" occurred last summer. Anyway, I cover the details in other Hacks, but here I want to make the case, and build awareness, that one should not just accept "conventional" wisdom, even among health professionals, that adult-onset diabetes is automatically Type 2, especially if one already manages their weight, eats well and exercises. As I mentioned in my Day 1 visit in Hack #6, because the Mayo Clinic treats primarily out-of-town patients, and is in a relatively remote (2 hours outside of Minneapolis) location, the facility does an amazing job of scheduling last-minute tests, trainings, prescriptions and other necessities into a short period of time, to help people maximize their time there. And follow-ups are very easy to schedule and efficiently executed via the Mayo portal, along with many other digitally driven features including Zoom meetings, medical records, prescriptions, care team messages, billing, etc. to facilitate pre- and post-visit needs. I don't take this for granted, given the routine difficulties I face with navigating and connecting local medical resources related scheduling appointments and lab work, messaging and meeting with care providers, following up and getting prescriptions filled, etc.
So while Day 1 at the Mayo was met with some anticipation because I was "finally" going to get some answers and begin my journey, Day 2 was met with some trepidation because, now that I knew for sure that I had incurable diabetes and would need insulin injections and other lifestyle adjustments, I was preparing myself for all the sacrifices, new learnings and habits I would have to succumb to for the rest of my life, presumably. First stop was the diabetes nurse, where I received one-on-one schooling, quizzing and practice with insulin, needles, and dosing. This was only a one-hour session because it involved only learning how to self-administer long-acting insulin once a day, given that my pancreas was still producing a little insulin and my new endocrinologist had probably decided I could get by for awhile before having to introduce more complexity -- via rapid-acting insulin and possibly a Borg-style insulin pump attached to me -- into my life. My starting dose was to be 10 units a day, while my nurse said that some patients require 70 units a day, given their insulin resistance. I was relieved to learn that there are these wonderful insulin "pens" now that allow you to turn a dial to get the right dosage of units before simply sticking it into a random area around the abdomen and pushing the button. This seems much easier than the old days, where insulin had to be drawn into a syringe from a vial and then injected after inserting the needle into the skin - all of which took more time and skill by oneself. And the needles are much smaller and finer than days of old. But still, I was feeling overwhelmed by the fact I would have to do this to myself several times a day, every day, the rest of my life. Oh, and until I could get a prescription for a continuous glucose monitor (which is ANOTHER thing you have to attach to your body with a needle), I would also need to prick and bleed one of my fingers several times a day before meals and at night to help me determine how eating and insulin were affecting my blood sugar levels. I was also dreading and anticipating the Mayo dietitian counseling session I opted for, because I already believed I had a good diet and exercise program, and was curious - and afraid - what I might learn that I wasn't already doing. And while I wasn't prepared to answer the question "what are you hoping to achieve today," I was thrilled to be told that "there is no such thing as a diabetes diet" in response to my expressing interest in learning about a diabetes diet. Of course, this means that my Mayo dietitian obviously had never read or given credence to Dr. Bernstein's "The Diabetes Diet" that had been in publication for more than 25 years, which I was not to discover for a few months hence (see Rant #33 on trendwolf.org's home page). But even as the Mayo dietitian told me that sweets were still on the menu for me if I wanted them, she also told me that although I had lost weight in recent months due to a failing pancreas, I could expect to gain weight back (read: unwanted weight) now that I would be taking insulin. As if to suggest that a diabetic can pretty much expect to be overweight because that's just what happens, even with a 'normal' diet and exercise. She didn't SAY that, but it's still the impression I was left with: that "good enough" was my life now. In fact, she DID say that I needed to add MORE CARBOHYDRATES to my diet, including potatoes, to get my macro-nutrients more in balance with a normal, 'healthy' diet. Her eyes went wide when I told her how much protein I was eating a day (a gram per pound of my weight - which is at least 2-3 times the standard recommendations. After some additional visits to the on-site pharmacy to get loaded up with insulin and needles, and a final visit with my endocrinologist to summarize all the next steps, tests and appointments on the horizon, I bee-lined out of Rochester feeling like I had just been swept up by a tornado and life was going to be the same again. One thing to keep in mind about Diabetes is that, as with many diseases, the person carrying the disease isn’t the only person being affected by it. My wife was equally taken by surprise by my condition and diagnosis, but probably was more anxious about it than I was because she likely felt helpless to do anything about it. And it didn't help that our winery tour friends - who also were accomplished retinal doctors and pediatricians -- were asking her or me several times a week ‘how was I feeling,’ which only reinforced her concern that things were worse than we assumed they were. Nine months ago, I probably would have guessed the wrong answer to a multiple-choice question about what an "endocrinologist" specializes in. I’m still learning about them. But once I googled and found out that this is the type of doctor one goes to for pancreatic issues (another test I might have missed the answer to: What is the purpose of a pancreas? or, Where is it located in the body?), it was time to find out where the best doctors or advanced research was. I did a quick online search, and chose US News & World Report’s survey, which labeled the Mayo Clinic’s Rochester, MN location as the best by far for endocrinology, way ahead even of the Mayo Clinic's other locations in the country. I had heard, of course, about people going to the Mayo clinic for heart-related conditions, but never imagined I would soon be planning at trip for myself. Amazingly, I called the Mayo’s hotel-concierge-like service center and was able to get an appointment only a couple of weeks out (by contrast, I’ve been affiliated with a locally based endocrinologist for several months and STILL have never met my actual endocrinologist, but only her nurse-assistant team on my visits -- see HACK #8 for more thoughts on this experience). We made arrangements and headed to Rochester, which, by the way, is in the middle of NOWHERE, though a flight to Minneapolis will get you closer to (or about 2 hours away from) the nowhere location. Upon visiting the town, it is clear that everything in the town revolves literally around the Mayo Clinic center. And by the names of certain wings or art displays, it is also clear that the Mayo Clinic has, like other institutions, healed or prolonged the lives of some very wealthy people who made hefty donations to show their appreciation, if not extend their personal legacies. The main building is tall, the waiting rooms giant, and the connecting buildings of related practices and supporting resources extensive. But the “hotel concierge” analogy holds for the whole place, because EVERY SINGLE PERSON I interacted with, from the guides, to the check-in staff, to the team members, nursing assistants, specialist doctors, to cafeterias, garage attendants, retail checkers and pharmacists, was kind, caring, friendly and helpful (by contrast, my ”local” office staff at various physician clinics seem to greet people as if they are an annoyance who is in the wrong place, or keeping them from doing their work, and clearly have more important things to do than to get me checked in to see my doctor). I also found an amazing ability to squeeze in a lot of activity in a few days than can typically be completed in my home town among doctors, blood takers and testers, dietitians, diabetes educators and other practitioners I met with during my stay. When I arrived I had ONE appointment; by the end of the first day, I had seen my endocrinologist TWO times for more than an hour each, had gotten my blood drawn, tests back, and a preliminary diagnosis in one working day, along with THREE NEW appointments the next day to learn about diet and dosing insulin. I also left that first day with new drug prescriptions that were ready in less than an hour and the onsite pharmacy. Don't get me wrong. I was a little overwhelmed and emotionally distraught soon after my first endocrinologist appointment that morning, as I absorbed the reality of my fresh diagnosis, and prepared myself for the lineup of appointments that now faced me in that short period of time. But the efficiency, kindness, and coordination that were now going on for my benefit, helped to make the experience more acceptable, with the exception of sharing elevators, hallways and waiting rooms with people who had more visibly debilitating symptoms that impaired their mobility or physical appearances. (Jump to Hack #6 for details on day 2 of the Mayo Clinic visit.) aI had always shunned - if not derided - the idea of being a vegan as too hard and impractical for someone who was more focused on muscle maintenance and growth than looking skinny or saving animals from slaughter. And then I contracted diabetes.
Last fall, it was undeniable that I had suddenly become diabetic, but because the Type of diabetes I had (Type 1 vs. 2) was uncertain, I assumed along with everyone who told me so that I had Type 2 - the kind that can be "cured" with sensible diet and exercise. In fact, a well-meaning chef-friend of mine had been reading Michael Greger's book "How Not to Die" and there were several pages devoted to studies showing how a plant-based diet had been shown to be especially effective in reversing the effects of diabetes. "Basically, Chris," my chef-friend said with a confident nod (just like my internist), "you've f*cked your body all these years with your high protein diets." And now I had diabetes as a result, it appeared. Well, no more of this, I thought. I'll be a vegan for life if it will make my diabetes go away. So, I loaded up on plant-based protein powder, meat- and milk-substitutes, looked up recipes for easy vegan stews and dishes my wife would enjoy (despite that fact that SHE hadn't signed up for a vegan diet), and started frequenting a coffeehouse nearby, called Hip Cafe, which quietly devoted itself to mostly vegan bakery and sandwich offerings, giving me a place to meet with people without being tempted by foods with animal products like butter, dairy, meat, etc. Doing so had a big learning curve and took a lot of extra work, but thankfully the retail grocery world has evolved to a point that people with certain diet-based restrictions can find a certain level of convenience foods and restaurants to help them along. All this lasted about 2 weeks, thanks to a wine trip last fall with a group of friends in Sonoma County. My new regimen stuck out right away when we went grocery shopping together or ordered dishes at restaurants. This led to friendly curiosity among my wine friends, who also happened to be eye doctors and pediatricians (medical professionals who don't specialize in diabetes, per se, but run into it a lot due to the prevalence of juvenile diabetes and eye complications from the disease). Curiosity was soon followed by concern, when they heard about my sudden unintentional weight loss and extremely high blood glucose numbers. And after consulting with some fellow doctor friends in between wine tastings, our pediatrician friend urgently advised me to seek a research university-based hospital for more tests to determine root causes for my condition and then declared "well, veganism isn't going to help whatever you have going on right now." And just in time! I was about to pass up some slices of a giant 3-inch-thick marbled ribeye that was being cooked for dinner that night, along with other buttery side dishes and dairy-filled desserts. For more on what happened next, see my Mayo Clinic Hacks. |
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April 2024
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