Thank You, 100s of tudiabetes Posters (and a question or two)

Hey zzyzx:

We've all been exactly where you are. It stinks, but your positive attitude in managing this disease will serve you well. Yes, you can lead a completely normal life. It just requires a little more work, and one of the more positive side effects is that a well managed diabetic is healthier than most non-diabetics.

You're doing absolutely the right thing by eating to your meter. Food is the most dramatic variable under your control. I've found that minimizing my carb intake has allowed me to mimic the BG ranges of a non-diabetic. Your 70-140 target is very achievable. In fact, you might even get into a tighter range as you fine-tune your regimen. An invaluable tool for me in this process has been a Continuous Glucose Monitor (CGM).

An important lesson for me is that there is no "one way" to properly manage this disease. Everyone's diabetes is different. Beware of anyone who speaks in absolutes - they're probably wrong. What is key is to take a methodical, scientific approach in developing your regimen. Log everything in the beginning and don't be afraid to test your BG too much. More data is better. Then start to tweak one variable at a time: food, exercise, medication, etc. You are a science experiment of one, and it's good that this speaks to your sense of curiosity and problem solving. You will do well.

Some resources I can recommend: www.bloodsugar101.com by Jenny Ruhl as well as her books: Bloodsugar 101 and Diet 101. Also Dr. Bernsteins Diabetes Solution.

Good luck and you've come to a great community for help and advice.

Christopher

Christopher,

Thanks for the support and excellent advice. I just today commented to a friend and coworker that the DX is the most transformative experience I have had since leaving home to go to college. I would have shrugged off your carb comment as recently as 10 days ago, but after a week of 7 or 8 fingersticks a day I can really see it. e. g., tonight dinner was quite yummy and I ate a normal (yes, 'normal' is meaningless, I can't count without nutritional labels yet) amount of rice, but then tested at 210 (rise of 96) compared with 155 (rise of 60) from 4 eggs and 12carb toast. So...yeah...whatever it takes to never be above 140.

I really want to start bolusing so I can figure out how much that improves things. Well...I'll see the internist in a week, so I'm reasonably hopeful. Not taking metformin after the CT scan had no effect on my numbers. I emailed my internist, with numbers, and he concurs. No cancer on the CT scan but some irregularities I can't interpret without expert advice.

I'll definitely want a CGM, but first I to learn optimal management with basic equipment to the extent that I've lived and traveled with it a bit. Maybe a pump....someday.

hat a well managed diabetic is healthier than most non-diabetics.

Heh...yes, that is coming. Not quite there yet. But I am enjoying walking up the stairs to my 6th floor apt without stopping. Before I found you all I also did it, but back then I stopped a few times. And I wasn't in a good mood, back then, but I did it anyway.

In a way, the whole thing is a gift (not that I'd pick it voluntarily). At 56, my main worry about unpleasant medical surprises was a stage IV cancer diagnosis. A close friend from college just passed away from colon cancer. As someone with a very slow onset, I thought I was experiencing effects of getting old (eg napping became a favorite recreational activities, and my legs were oddly weak on uphill hikes). Now that I've recovered from oral surgery and upped my insulin dose, I feel amazingly energetic, and also that my IQ went up 10 points. I need a new pair of glasses (the ones I have are fitted to hyperglycemic me). I love being alive---also not always true in hypergly land.

Thank for the 101 link. Looks like a good place to start with primary literature.

---ZZ

OK, now I have some new info.

I have now tested seronegative for autoantibodies. This resulted in an email from my internist that was intended to be upbeat in tone, but it really freaked me out because he said "with your commitment diet and exercise, I anticipate you not needing insulin at all!" Given the BG readings I'd been seeing on my 23U/day, this struck me as pretty unlikely. Emotionally it was a bit upsetting, since it seemed like a much milder version of the nightmarish situation faced by Melitta and many others. There are posts here about physicians settling for moderate levels of control in patients and then expecting them acquire various grisly complications. I would prefer to stop whatever damage has already occurred in its tracks. I wrote a rather impassioned but polite and well reasoned reply, asking him to prescribe short acting insulin for an MDI basal/bolus control plan, and noted that I wasn't dissing diet and exercise because nobody at tudiabetes (as far as I can tell) achieved tight control without it.

All of this (along with some other stuff over the weekend) pushed typical BG readings about 20 mg/dg higher than last week. I've been eating less too, mostly because I've stopped eating with a number over 130. I just wait for BG to go down, but at my current insulin levels this is like waiting for a clogged sink to drain. Plus I was getting pushback from certain places saying tight control was not a good idea--danger of hypos, etc etc.

In the face of this aggro, I decided to look for a CDE so I could actually make proper use of my scrip if I ever got it. This triggered a rather odd chain of events. It turned out that a coworker with whom I've generally gotten along with rather poorly is friends with a diabetes-aware endo, and I saw him today. (Now I think the coworker is just great :) Apparently I am one of the 10% of type 2's who present with normal/low BMI.
Ah..found the diag sheet--I have "Type II or unspecified type diabetes mellitus without mention of complication, uncontrolled". HA1c now 8, not great but better than the DX value of 11.2 45 days ago.

Most importantly, despite the fact that the CDE who was supposed to come to my appointment called in sick, I got my endo to sign on to my control plan, and I walked out with a sample pen of Novolog. In parallel, my internist wrote back and said I could have insulin if I want.

So I'll find the CDE Monday. Meanwhile I'm cautiously starting with a 2U bolus of novolog before meals, getting really serious about carb counting, and collecting data. Since I am resolved to change only one thing at a time, and not more frequently than once every three days, I can't get into much trouble before I have a CDE.

I am curious, though, how the well controlled among you set your initial doses, and any comments about possible weird phenomena/pitfalls are very welcome.

--ZZ

Re setting initial doses, what did the doc rx? It would be unusual for a doctor to just rx it without some type of instruction. There's two basic plans. Old school, is to rx the same dose and a fixed amount of food and simply repeat. In the old days, NPH had a peak, albeit a highly variable one, that could cover lunch while R covered breakfast and DP and then dinner/evening. The newer paradigm is to figure a ratio, like 10-1 carbs/ unit of insulin so, if I eat a piece of 7G of carb bread and 3G of carbs worth of peanut butter, I have one unit. My medtronic pump will calibrate in .1U increments so I have like 7.1 at breakfast and 7.7 the rest of the day or something like that and it does the math too. When I did shots, sometimes, I'd draw the syringe back to the center of the plunger, rather than the meniscus around the edge. Think Like a Pancreas, Your Diabetes Science Experiment and Using Insulin are all books that have good "owner's manual" approaches to figuring this stuff out.

He prescribed, initially, a 2U bolus to be slowly increased while I took further BG data and started counting carbs more rigorously---I'm confused about my sensitivity and want to avoid hypos. I expect to get more info on Monday when I see the CDE, but couldn't wait to know more. I'm aware of the ratios and have read TLAP, but I guess I'll see my ratio when the dose gets big enough. So far not much post meal BG change than previously, although I went to 4U today and see a slightly faster post meal falloff.

Uh...gee...maybe I answered my own question :)

--ZZ

I would try starting out with a 1:15 ratio insulin:carbs for what you're eating and see how that goes. You can raise or lower it according to how your post meal bg levels are. You will learn a lot over time about how much you need and how certain foods affect you, what number of carbs per meal you can tolerate and what your insulin sensitivity levels are throughout the day for corrections etc.

Going from 11 a1c to 8 in 45 days is good. Now that you're on basal and bolus you will bring it down more. It's not good to go down too fast because that can cause retinopathy in some people.

That’s great you’ve got a good endo now too!

Hey zzyzx:

Although I completely empathize with your sense of frustration, I'm actually quite encouraged by your antibody test results. High-normal C-peptide along with negative antibody tests suggests Type 2, which in my opinion is easier to manage if diagnosed early and treated aggressively immediately.

The core of your regimen will be to lower your insulin resistance, and there are a wealth of drug and lifestyle options at your disposal. The safest and least controversial drug is Glucophage (Generic: Metformin), and it is widely considered the leading first-line treatment for addressing insulin resistance. It's been around since the 70's, I believe, and has even demonstrated some cancer preventing benefits. The primary side effect that some report is gastrointestinal discomfort, but this is often eliminated by taking the extended release formulation.

For perspective, I have a colleague who was diagnosed with an A1c over 11 and switched to a low-carb diet and 1000mg of Metformin XR at bedtime with moderate exercise. Her A1c is now consistently in the low 5% range and her fasting numbers are in the 80's to 90's. Another, more extreme example I found online that I like because he pokes his finger in the eye of the medical and nutritional establishment is here: http://www.diabetes-warrior.net/about-me-and-diabetes/

There are also incretin mimetics (Victoza/Byetta and others) which can result in miraculous results for some but are not without potential risks and controversy. They were initially intended for T2's, but they also have shown off-label benefits for T1's. You can read about my own experimentation with them here: https://forum.tudiabetes.org/topics/byetta-miracle-drug-for-perfect-bg-control-for-recently-diagnosed

There are also a slew of other options with benefits and risks summarized here: http://www.phlaunt.com/diabetes/17977284.php

Your desire to start insulin immediately is not as unorthodox for a T2 as has traditionally been the case. The conventional wisdom until recently, and still the case for many Dr's, is to start with orals and only after all oral options are exhausted in achieving control, move to insulin. In fact, there is an unfair stigma that moving to insulin is a sign of "failure."

The more progressive view that I've recently read about suggests a much more aggressive approach of insulin and Metformin upon diagnosis in order to normalize blood sugars as quickly as possible. The benefits include reducing stress on already overly-taxed beta cells along with minimizing further potential destruction due to mitigating glucotoxicity from sustained BG values over 140. Once values have been normalized for a while and lifestyle and diet changes have taken effect, weaning off insulin becomes a realistic option.

Hence, the approach on which you are embarking could prove very successful. However, I would also urge caution. Insulin is an amazing and also very powerful drug. You can get in over your head very quickly before you know it. As such, I would recommend also having a ready supply of fast acting glucose tablets or liquid wherever you go. I keep a roll of tablets in all our cars, in my desk, on my nightstand, in my briefcase and in my carry on luggage when I travel. Examples can be found here: http://www.amazon.com/Dex4-Glucose-Tablets-Watermelon-Count/dp/B001J1ABP8/ref=sr_1_2?ie=UTF8&qid=1399231761&sr=8-2&keywords=glucose+tablets . Examples of liquid can be found here: http://www.amazon.com/Glucose-Liquid-Blast-Acting-Berry/dp/B00AB79TK4/ref=sr_1_1?ie=UTF8&qid=1399231817&sr=8-1&keywords=glucose+liquid

You have gotten some excellent advice from others on this thread in figuring out your insulin-to-carb ratios and correction factors. One method that worked very well for me was to use 4g glucose tabs in order to derive these values. In my case, one 4g tab will raise me 16 points. 1 unit of analog insulin will lower me 30 points during the day, 20 at night.

The other approach that worked very well for me in learning to use insulin was a very strict low-carb diet. The reason I recommend this initially is that this type of a diet results in very slow rises in BG, allowing for lower doses and smaller errors if you under or over inject. It's what Dr. Bernstein refers to as the "Law of Small Numbers." As you become more comfortable and knowledgeable about how your body responds, you can then make the choice to introduce higher-glycemic foods one-at-a-time. You might even choose to move completely away from low-carb. As you can see by many of the discussions, a low-carb lifestyle is an emotive topic, so it's really up to you what you choose to do over the long-term. The purpose of my recommendation here is just to minimize the volatility of one of the biggest variables (food) while you master using insulin.

To give you an idea of an example of my current meals in a day: Breakfast: two eggs and four slices of bacon, Lunch and Dinner: 8oz of protein with 180g of green vegetables with a generous portion of butter (Broccoli, Brussels Sprouts, Spinach, etc). Snacks are usually things like boiled eggs, cheese, deli-meats, almonds, home-made full-fat unsweetened yogurt. Consistency in portion sizes makes fine tuning bolus dosing very straightforward. I enjoy a huge variability in food types, but I try to keep the amounts consistent as per the numbers above. Getting a food scale initially helps greatly. Later on you can start to eyeball the portion sizes as you grow more confident.

Exercise also has a strong positive impact on insulin sensitivity. But this also requires some trial and error because we're all different. Some exercise will trigger an adrenal response and spike your BG, while others will lower it. In my case it's Crossfit and mountainbiking for the former, walking, running, weight-lifting and off-road motorcycling for the latter.

If you're not much of an athlete, don't worry. You don't need to go all "P90X" to see results. Based on my anecdotal observations, even a regular daily brisk walk for at least 30 minutes seems to have very positive effects on insulin sensitivity for almost everyone.

Lastly, try to isolate other variables such as medications or supplements that could be driving up insulin resistance. In my case I learned that taking Niaspan (a pharmaceutical grade B vitamin used for treating cholesterol) caused my insulin needs to double. I've also read that statins (Lipitor, etc) can have this type of effect on some.

Ultimately my hope for you is that you are able to manage your Diabetes through lifestyle changes alone and at most have to take Metformin XR. This is an approach that can work for many, but not all. Time will tell. What I find most encouraging is your willingness to absorb as much information as possible and tackle it head-on. Regardless of whatever approach works out best for you, I'm very optimistic you will achieve the tight control you desire and deserve, and you will lead a long and healthy life.

Good luck!

Christopher

Today was pretty great..71 first thing in the morning, 113 after dinner. Of nine fingersticks, the highest was 130, lowest 71. These very preliminary results indicate a carb:insulin ratio of 3.5:1 at bkfst, 5.5:1 lunch and dinner. TDD=23+23=46U. I know its early days, many bummers, reverses, need to increase knowledge in the future, but: This is the first time I've measured in the normal range for a whole day since I knew what the normal range was. Couldn't have done it without y'all.

I'm back on metformin at least for now. If preliminary carb:ins ratios hold up I'll do a controlled experiment and see if the metformin is increasing my sensitivity.

I need to increase exercise for a slew of reasons, the most critical of which is that I want to gain ten pounds, but as muscle not fat. I also want to keep off oral meds of all sorts. Metformin is ok, and I'll keep taking it if it helps. I personally don't consider insulin to be a drug---it is a hormone, and I think its dose-response characteristics are very un-druglike.

I am open to the low carb path, but it is a much bigger change than the moderation caused by careful dosing based on carb counting. Fraser and Christopher: What motivated you to take this treatment alternative?
Medical advice, desire not to take any drugs including insulin,
orbservations of your own metabolism? We all make our own choices, but it is helpful to understand how others made theirs.

--ZZ

Congratulations! That's great progress!

My motivation for low-carb was tight control and to return to BG ranges of a non-diabetic. My A1c is consistently in the high 4% to low 5% range and my Dexcom gives me an average of 93 currently with a standard deviation of 19 points.

Regardless of where you fall on the low-carb debate, one fact is indisputable: Food is the most impactful variable on BG levels, and my goal was to minimize this as much as possible.

Only later did I begin to experience and learn about the secondary benefits: dramatically improved lipid profile, improved energy, mental sharpness and heart disease prevention, significant mitigation of diabetic secondary complications like neuropathy, organ damage, etc. I also enjoy being liberated from the carb craving rollercoaster.

I read that not only can sustained high BG can cause heart disease and other complications, large BG swings can also be a significant cause of heart disease, so I wanted to flatten my BG levels as much as possible.

If you want to learn more, there are three books I can highly recommend: Diet 101 by Jenny Ruhl, The Paleo Solution by Robb Wolf, and Wheat Belly by William Davis.

I was initially erroneously diagnosed as a T2. Diagnosed with an A1c over 8% and fasting levels over 200 and a C-Peptide of 1.2 (low normal). Moving to low carb and Metformin gave me the ability to bring my levels down to 70-130 pretty quickly.

Like you, I researched vociferously and thanks to what I learned here and from others, I had the foresight to insist on antibody tests. I'm glad I did. They all came back positive and my C-Peptide plummeted to 0.2 within several months of diagnosis. I quickly switched to using insulin, and here too I found low-carb to be beneficial. It allows for small doses, which when wrong, result in only small mistakes that are easy to correct.

Metformin takes a little while before you start seeing its benefits. Usually around a week or so. Building muscle is also beneficial to BG control. The greater your muscle mass, the higher your insulin sensitivity. Serious athletes produce very little insulin because they don't have to. Their bodies are highly responsive to small amounts.

I have no desire to start a low-carb vs carb debate on this thread. God knows, we've seen enough of those and they can get quite heated. So let me caveat this with the statement that this works best for me. In hindsight, I'm convinced I have some sort of carb intolerance. Whenever I stray, I end up feeling like crap. My body is just not designed to ingest processed carbs, and my BG control has benefited dramatically from eliminating them. Do your research and experimentation and settle on what works best for you.

All the best!

Christopher

It's been a while, so I thought I'd post an update. Thanks to the great stuff i learned from you all at TU, I've got my BG control majorly stabilized. I'm happy to report that when I saw my internist last Tuesday, he wrote me a Novalog scrip based on what I was already doing with the sample pen. I've also got a scrip for testing 8/day, so that's stabilized too. I'm counting carbs with FitnessBuddy (the barcode reader is very handy; thanks AR!) although I have a long way to go on complicated foods. I've been reasonably successful in staying between 70 and 140, although I've usually been conservative with insulin, so there are various times I've gone up to 160 after eating.

My earlier estimates of my insulin:carb ratio were too conservative. I am in fact resistant to insulin, with a ratio of 4:1 for lunch and dinner, about 3.5:1 for breakfast. I've decided to stop taking metformin for a week, starting today. If it has a major effect on insulin sensitivity, I'll start taking it again, but I notice that it both reduces my appetite and messes up my intestinal tract after large meals. Today, for example, I ate 800 calories and don't feel very hungry (day off from work). This would be great if I wanted to lose weight, but I'm kind of low now, and I need a certain level of energy to do my day job, which is a bit demanding. For example, yesterday we had a marathon exam grading session that consumed about 6.5 hours, fueled by 51 nonwhite carbs (properly covered), 450 calories. Thinking uses glucose, and near the end I felt so energy deprived I tested for hypo--75, but I took a glucose tab anyway. That wasn't unreasonable, since an hour later after a 15min walk home and climbing six flights of stairs I was at 95. I had to eat something although dinner was hours away, so I ate a prediabetic ramen from the cupboard (I am not throwing out old food; I eat it and test. Pop Tarts died before I even found TU) Way too carby, but covered ok. But then real dinner came along three hours later...I wasn't back to fasting levels, and added an extra unit as a correction without having done a careful experiment to determine insulin sensitivity, as suggested by Christopher. This resulted in a hypo (47) about 2 hours later. I have glucose tabs everywhere now, so took 4 of them, was at 57 15min later. Then I had 60carbs of yogurt, saw a reading of 92, took my detemir, and went to sleep. Probably spiked during the night, but read 85 in the morning. This wasn't the best way to handle a hypo, I realize, and I need to measure the effects of 4gm of glucose in a controlled way as Christopher suggests.

I appear to have type 'other' diabetes. Insulin resistance like type 2, weight loss like type 1, and ambiguous normal levels of C-peptide. I see evidence of residual endogenous insulin function, but it doesn't doesn't act like a classic honeymoon period with only bolus not basal needed. Instead I see magically good adjustment of morning fasting levels...usually less that 5 away from 80. This is particularly odd since my detemir dosage was set with a target of 130.

I greatly appreciate all of your comments. I would of course only take medical advice from professionals, but it says a lot about TU that my professional advice on BG control has pretty much been "you appear to know what to do. Be very careful of hypos and go do it". (I still haven't seen a CDE.) Chistopher and Fraser--thank you for your comments on Bernstein. I've looked at his website and I'll definitely read his book. I like his perspective that "Diabetics are entitled to the same blood sugar levels as nondiabetics" (quote from memory), and as far as I can tell extremely low carbs were the only way to achieve such control before 21st century fast acting insulin. I'm adjusting things stepwise while looking at the meter, so it is an open question where that will take me. I think I need to measure blood pressure regularly too (see below).

Lastly, there has been a bit of the "difficult medical appointment" (or email) phenomenon, to quote the immortal words of Rick Phillips. The CT scan I had revealed various abnormalities of uncertain clinical significance. Some is standard complication stuff---kidney cysts and urine microalbumin detected, but the next step is to lower A1c and see if the problem goes away. There are other issues, however, some very unclear to my docs and resulting in huge numbers of lab tests. All I can say about this now is that the picture is rather unclear. Absorbing all this, plus heavy demands from my day job, kept me away from TU for a week.

So, it's not the beginning of the end (fortunately!) but I guess it's the end of the beginning. I inject insulin through my shirt at work. Now I need to find the discussions about what people use to carry their diacrap, since the velco on the cheesy case that came with the contur meter came loose today...very luckily, inside the car.

This post wasn't supposed to be so long. But where else can I say all this stuff?

--ZZ

I know what you mean, ZZ, where else indeed! Glad to hear you are coming into your own as your own science experiment! Good work and thanks for the update!

Hey ZZ

Good to hear from you. I was wondering how things were going. Thanks for updating us. It sounds like you're making solid progress.

A couple of thoughts based on this most recent post:

You're wise to start conservatively with Novolog. It's a very effective, and easily overly effective insulin if you're not careful. Be sure you do some research on "insulin stacking." It looks like you might have experienced this nasty side effect with one of your lows. In short, closely spaced injections within 3 hrs or less can have an exponential effect. For example, I use Humalog and calculate a 3hr action. Hence, if I'm bolusing 3 units for a meal at noon, and choose to eat a snack at 2PM, I still have 1 unit from my lunchtime injection that I need to factor into my snack bolus.

You are clearly experiencing some level of insulin resistance. Are you a T1 LADA? Probably not, as you are testing negative for antibodies. It seems like T2, but Diabetes is rarely cut and dried. I like to think of it more as a spectrum. One thing that crossed my mind in your case was MODY when you write "only bolus not basal needed." There's been some discussion around that recently, and I would think there is probably no harm to test for it as well, if for nothing else then to just rule it out.

You mentioned you discontinued your Metformin due to appetite issues and gastro-intestinal discomfort. If you're not using the extended release formulation this can be a common side effect. I would consider switching to the XR formulation, taken at bedtime, as this is one of the most effective, safe and proven medications to address insulin resistance. It also helps suppress glucose dumps from your liver which can help smooth out BG levels. Lastly, it also seems to have cancer preventing benefits. Heck, with all the high-glycemic crap that's become a staple of the modern American diet, they should just put it in the water. :-)

The reason I bring this up is because your C-Peptide levels suggest you still have a well functioning pancreas. Managing your BG well is much easier (and safer because of a lower risk of lows) if you can increase your insulin sensitivity as much as possible and rely on your pancreatic insulin production as much as you can, and you supplement it with little as possible exogenous insulin to keep yourself within your target ranges. No matter how good of an insulin-jockey you might become, nothing matches the elegant precision of a functioning pancreas in normalizing blood sugar.

I'm glad you have glucose tablets readily available. As you've already seen, they can get you out of trouble quickly (and the liquid even faster). By the way, I have never been able to accurately and quickly correct a low with food or juice. I'll always under or overshoot if I try this - but glucose always gets me where I need to be with great predictability and accuracy.

I think you will find that the lower the glycemic content of your food, the easier it will be to dose for it. This applies even with the latest analog insulins. Over time you will build up a personal database of foods and dishes that you will be able to dose for perfectly. Everyone's metabolism is unique, so what you might be able to cover easily, I might not, and vice-versa. As I mentioned earlier, getting a food scale is a great tool in helping you do this.

I think we can all relate to the anxiety from the uncertainty and ambiguity of some of your tests. But rest assured, you're doing the right thing by tackling it methodically and head on, and you will manage this successfully.

The silver lining of being a well controlled diabetic is an awareness and control of your overall health that most other people never reach.

Keep up the good work and keep us updated!

Christopher