Treatment Frustration

Type 2
1

So I'm doing well at managing my blood glucose with metformin, diet, and exercise. My A1c is down to 5.6 from 11.1. I've lost 32 pounds. So I'm pretty on track.

But I'm frustrated by just one thing... and that frustration is starting to turn me apathetic.

Mornings drive me crazy. I'm above 120 by 7:30 AM and no matter what I eat for breakfast, my numbers shoot up to the 160s. This happens if I eat a few carbs with breakfast, a lot of carbs with breakfast, or almost no carbs with breakfast. I've found working out in the evening has helped bring my numbers down overall. But morning workouts seem to amplify my Dawn Phenomenon for some reason. So I stopped exercising before work and made it a part of my evening routine.

Also, I swear it takes over half the day for my numbers to finally come down from how high they climb in the morning. I honestly believe that if I could manage my Dawn Phenomenon my numbers would be down in the 90s for the entire day, not just the late afternoon and evenings.

But my medical providers won't help me do anything about it. They are unwilling to intervene until my numbers are much, much worse.

It pisses me off. Why does my health have to worsen before I'm able to get any help? Why can't I try to preserve my pancreas and improve my bg with tiny corrections now... instead of just sitting idly by until my pancreas is entirely shot and my bg management requires huge corrections?

This situation is making me apathetic. I've stopped checking my bg almost entirely. What's the point? To wind myself up with frustration and anger? It's not like I can do anything more about it. I take my meds. I eat low carb. I exercise. Since the doctors wont' let me do anything more about it... why should I monitor it at all? What good is it doing me? All it seems to do is add to my stress and anger at my disease.

2

Note: That A1c was in November, 2 months after I was diagnosed. I'm scheduled for another A1c this week and I expect it to be much higher, given my morning numbers. I'm hoping it's below 6. But I'm not holding my breath.

3

You are experiencing classic T2 "it's not a problem until life or limb is at risk" BS from the healthcare community.

Also, you are seeing the precise symptoms of T2 early onset. As a freshly minted T2, you can achieve good average BG, reflected in your a1c. What that doesn't tell you is how that average is achieved.

If more than a few hours are spent well over 140, current research is strongly suggesting that damage is being done. 140 is the high-water mark for most of us around here.

Bottom line: You are not being given the one tool you need to effectively manage this: Short-acting insulin. The solution is to find another care team that will support you -- they're out there. I love mine -- my endo agrees strongly with my intensive approach to managing T2, so she went to bat for me and I was approved by insurance for a CGM and pump.

My 15 life as a T2 diabetic has never been better.

Bottom line, you need to have insulin in your toolbox. Don't stop until you find a doctor that will support you. However, start with your own doc, make the case hard. Go in armed with data, information, etc. Have your goals, plan, and contingency plans (in case of hypo, for example) thought through. Basically, do everything you can to reassure your doc that they don't need to worry about you taking insulin.

4
You are experiencing classic T2 "it's not a problem until life or limb is at risk" BS from the healthcare community.

I agree. We have a disease management system here in the US - not a health management system.

It reminds me of the "small correction" theory of driving on the freeway. When you are paying attention, you make tiny corrections to keep yourself on track and safe. If you lose focus, you could suddenly have to make a huge correction causing you to veer across all lanes of traffic and roll your car in the median. I feel like the doctors I've seen so far are telling me, "It's OK to doze behind the wheel... don't worry until you have to jerk the wheel." Then they wonder why people end up a wreck of heart attacks, lost limbs, blindness, and kidney failure on the side of the road?

I don't feel like my goals are outrageous. In November, around the time of my last A1c, I woke up around 100. I shot up to about 125 after breakfast but was down to 100 again before lunch. Then I'd "live" between 100 and 110 for the rest of the day. Even an hour after lunch and dinner, I'd shoot up only about 5 points or so. I'd be perfectly happy with that. It's not like I'm expecting to keep my numbers in the low 80s at all times.

So far I've tried 2 different physicians and I've seen one of those CDEs. I've been completely unimpressed with all of them. They were condescending and treated me like I'd been suckered by snake oil when I tried to discuss "tight control" of my bg. I recently found a Nurse Practitioner who has done research on diabetes and exercise. I see her for the first time in March. I was very excited because when I spoke with her she was impressed with my level of understanding and thought my goals were completely reasonable. But then she dropped off a spare copy of Diabetes Forecast for me and said, "this magazine is marvelous." So I've lost a little hope that she'll be as aggressive as I want to be.

It's so frustrating. It shouldn't be this hard for people who are motivated to be healthy to find the healthcare to support them.

5

I'd switch doctors. Shop around for an endocrinologist willing to work with you. Also get the antibody tests done to make sure you are not actually a slow onset (LADA) type 1. Good luck.

6

I learned a long time ago that WE have to advocate for ourselves. Docs get caught up in ONE treatment plan, and then one size fits all. As others have said, you have to be armed with your numbers (daily numbers tell more about how your disease is progressing far better than an A1C) That's why it's important to take those daily numbers. Also that shows that you will be diligent if they would approve the insulin. And if in the event they aren't approving, start interviewing new docs. Some have more experience, some less, and some none at all except what drug reps tell them, which is to sell their product. I wish this wasn't the way it was, but we know us best....and know our bodies best. Hang in there and keep track of you.....cause you want to be healthy.

7

I'm not going to say that you don't need insulin, or that you do, because it's a decision you'd need to make on your own when it comes to that. But I do have a question before I recommend anything: When do you take your metformin? Is it all in the mornings, all in the evenings, split between the two? How much are you on? (Yes, that's three questions, but they're all important.)

Personally, having been on four different diabetes meds, dealing with the side effects and the dose changes and the med changes, I'm tired and I want to be on insulin. I understand what it means to be so frustrated with the bad numbers that you just want to give up on testing and maybe eating well and exercising, too (this is me I'm talking about here, not you). I'm sorry your endo team subscribes to the "not until you're over 200 all the time" rule, and I hope you find someone willing to treat you better.

8

If your liver is leaking in excess glucose; it can do that around the clock.. The worst times are when Dawn phen is kicking butt which for me runs from 3:00am thru 9:00am and peaks worst from 7:00am to 9:00am.

Having watched my blood glucose on a cgms for over a year and a half; I found with my Doctor's help that smaller sufficient doses of standard metformin spread around the clock are most effective. Large single doses in am or night time were found to be not effective.

I typically take my 500mg doses at 10:00pm and 12:00am midnight and as well at 6:00am, 11:00am and 4:00pm. The doses at 10:00pm and 12:00am were the most effective on dawn phen. the other doses I take typically 1 hour before a meal.

Latest actual science and NOT theories shows that when the dose of metformin in blood reaching liver is at a sufficient dose ; the liver is told to shut up and stop dumping in excess glucose. For me that dose is 500mg. Anything less is useless. Testing done by others indicates that the minimum dose required varies from person to person. Typical timing

of metformin is 2.5 hours up to dose after ingestion and typically lasts 1 to 3 hours and was 2 hours for me. Typically I could watch this effect on cgms and see point after the 2.5 hours when the liver stops adding excess glucose. I found residual metformin that lasts in cells of no value to my case nor holds off liver.

One may need insulin to help improve liver signalling by adding insulin. I found the liquid insulin the best and I prefer the humalog lispro or its equivalent that lasts on 3 to 4 hours in body. I find the mixes( 70/30, 75/25 et all) a right pain having a 12 hour span. As the pancreas and its islets when they age or get overwhelmed by too much glucose drop their insulin output. The liver is a pain as it works on the reverse of the insulin level. As insulin drops lower, liver thinks that means it has to add more glucose and it sure can do that in spades.

The other key issues for me is tor run a 1200 calorie per day diet dropping grains and breads to small controlled lots and keeping carbs low. I would watch out at breakfast and make sure you are running a low glycemic breakfast and keeping carbs to a minimum other wise it will boot your blood glucose up quick.

I do not like the glimperide type pills and find them a right pain as well.

Sometimes adding a basil insulin like lantus or equivalent can be helpful. For me a meal bolus of the humalog lispro. As my islets are putting out an interesting amount of insulin; I found best answer was to test 2 hours after meal with the caveman fingerprick machine and add sufficient isnulin for the peak that showed up and vary the dose on size of peak.

I would typically test at wake up - fasting and then 2 hours after every meal as well as at the 5 to 6 hour point after dinner to see what the secondary peak from intestines were doing on the complex items body has to crank hard to crack and add one more insulin dose at that point.

I usually found the 5 to 6 hour test point after dinner/insulin dose and the 10:00pm and 12:00am metformin doses were sufficient to arrest liver monkeyshines and keep readings flat overnight.

From my peanut gallery seat; it struck me that liver has two glucose ports which it dumps in glucose; a keep alive constrained always on port and then a controllable port that liver and brain use to dump in extra glucose when glucose in blood goes too low. My take was that its that port that for some reason can sit there leaking in extra glucose on a regular basis and that is what the metformin cuts off. I have watched my own liver sit there adding glucose slowly and when the metformin hits strength, the blood glucose will flatline and stay put ( assuming no glucose output from intestines/kidneys).

It may turn out that pumping may be a very helpful option depending on how ones islets/pancreas are performing. One gets to play with basil levels and timing as well as the meal bolus helping to improves overall performance. Check with your doctor/endo!

anyways - just a comment what I saw on my body!

9

Furthermore, there should be absolutely nothing wrong or alarming about giving a T2 the tools to manage their BG to normal.

Insulin is only an unacceptable risk for a patient that isn't going to be diligent about using it properly.

But then, doesn't this also apply the gazillions of other meds that are prescribed every day? You mean, it's scary to give me insulin because I might be irresponsible using it and go hypo, but it's perfectly okay to give glipizide to anyone and just assume they will eat on schedule, not be stupid and double up on a missed dose, etc. etc. and on and on.

Speaking from experience, Humalog strikes me as far less risky. It's only administered for cause, i.e. when one eats. It's not hard to learn carb counting. Dosing is set by the patient, so one can underdose if unsure of the carbs in the meal, and correct later. Both things that can't be done with beta cell stimulants.

I could go on and on about this. To me, I've made enough of the case above to at the very least justify re-examining the current treatment protocols. They are extremely out-dated.

Standard T2 orals/diet/excercise is many decades old. Metformin and sulfonylureas have been around forever. Fast-acting insulins are new, only about 20 years old.

When T2 protocols were developed meal-time bolus insulin was not really a viable option. The introduction of fast-acting analogs changed everything for diabetics, but the medical community only notice T1's in this revolution., staying pat with standard T2 protocols.

Insulin is not for every T2. It does require some diligence, attention, and effort that pills do not. T2's that "don't want to be bothered" should stick to the old way.

However, for T2's that want to be more intensive, are motivated, and eager to control their diabetes much better, fast-acting analogs for meal and correction boluses should be added as a readily available arrow in the quiver.

It's caught my eye that one of the long-acting -- Lantus or Levemir -- is advertising to T2's these days. First, I think that's great!!! Although this is not really much better from a management sense than sulfonylureas, it's a huge step forward in more healthy treatment, helping preserve pancreatic function (by reducing the burden) as opposed to the latter which burns your pancreas out.

Also, it paves the way for insulin for T2's in general, and hopefully will lead to discussion, and promotion of fast-acting bolus insulin as well.

In contrast, we also have these poisons like Victoza and that other one I can't remember right now being pushed hard for T2's. That's discouraging.

10

I'm on 2,000 mg / day. I divide that into 2 doses: breakfast & dinner.

I'm not convinced I need to go on insulin, either. I'm very leery of the other drugs I've seen out there. I'm kinda convinced that only metformin and insulin are truly "safe." But I'd be willing to explore dosing, the schedule on which I take the metformin, etc etc.. and MAYBE be talked into trying other drugs. Maybe.

I think what I find so exasperating and discouraging is that it doesn't seem like anyone is interested in helping me experiment and find a solution... regardless of what that treatment plan looks like in the end. I'd probably be feeling optimistic and motivated to keep improving my health if I had JUST ONE healthcare provider who said to me, "Well, let's try some things and see if we can get those numbers where you want them."

11

I've got to be honest, Jim. Your post kind of overwhelmed me. I don't know if I've got what it takes to be as regimented as you seem to be. I can barely remember to do my post-parandial bg readings (and I often miss a few through the week). While I tend to eat breakfast at the same time every day, my lunch and dinner times are all over the map, based on whatever is going on that day. I don't know if I could manage a medicine regime like the one you've described. If that's what it's going to take to keep my liver in check, I might be in trouble.

12

It's obvious to me that I have a lot to learn about insulin, based on what I've read here. I thought basal insulin (like Lantus), not a fast-acting insulin, is what I'd take to combat my Dawn Phenomenon. So obviously I need to learn more about the difference between the two and which one would be appropriate for my goals.

But that aside, the thing that makes me want to "scream" with frustration is that if I were a type 1 or an insulin dependent type 2, I could manage my numbers any damn way I pleased. By their reasoning, I'm just "too healthy" to be in control of my blood sugar. How does that make any sense?!

It annoys me further that I'm expected to responsibly keep my bg from going too high... but I can't be trusted to keep my bg from going too low. Again, how does that make any sense?!

I'm so incredibly discouraged that finding good medical providers is the hardest part of this process. It really shouldn't be. At this point I don't know what to do. HOW do I find a decent doctor? The methods I've tried have failed. I've even asked for recommendations in online diabetes forums. But I've had zero response. It's not like I live in the boonies with limited access to care. I live in a city with a university healthcare system. So it baffles me that I can't find someone who can point me to good providers.

13

apologies Heather. You are right, i ended up running my body like steam engine railroad. All I wanted to share was that single large doses of metformin have been in my case useless. The two doses at 10:00 pm and 12:00am work miracles for me. Do not combine into one dose at one time - no use.

otherwise I hear you and your concerns.

14

No apologies necessary, Jim. I was just venting my frustration with this disease. I think I'm probably like you, personality wise. I want to run a "tight ship" with very specific inputs and outputs. I just don't think it's sustainable for me. Which, given my obsessive, exacting personality, causes me angst. :)

15

Heather:

This is a very frustrating disease/condition. It is a complex problem due to the multi-organ nature of type 2 diabetes. Too many folks are stuck in pancreas land from all the excellent work and effort done on type 1 diabetes.

For type 2 this problem gets more involved due to a complete lack of real time visibility what is going on. Presently, single shot lab tests are simply that a shot in time as well as caveman fingerprick tools.

My hope is we would get to a wearable miniature analysis pack that can record real time for a few days on a 24 hour basis and save that data and then download to the computers of the bridge of the Star trek Enterprise to crunch the data and provide a detailed analysis to Doctor so he knows what needs fixing, what needs tuning, diet adjustments and exercise needs.

The present approach of a lab test, a caveman fingerprick machine and a few tests simply provides insufficient detailed data. Its akin to use divining rods, merlin's majic wand and a whole bunch of guessing to resolve a multi organ fracas.

I was lucky to get the opportunity to use a cgms system - Dexcom 7+ to watch my body on a real time basis 24/7. This was after using 30 strips a day to collect data. A cgms is extremely costly as well as having its own warts and wrinkles. That said, the trends and patterns allowed my Doctor and me to observe what my body was doing and then make rational adjustments in meds, diet and exercise.
As an electronics engineer; I have spent many hours/days working out complex problems in computer/microprocessor systems crunching thousands of bits at pico and nanosecond speeds. Complex test equipment to capture detailed pictures of what was happening clock to clock bit change was key critical to isolating who screwed up in the picnic. The current visibility for type 2 diabetes is frankly not very good in my opinion.
As a type 2 body gets off track, we see pancreas, liver, kidney issues as well as how glucose is stored around the body all going off automatic control and making a mess. For type 2’s ; the liver is a bad actor that acts worse as one ages, insulin drops . The reason I adjusted my meds and meals to a careful schedule was really simple and to reduce need for liver to add glucose when body runs low. If you eat all over the place, your liver has to make up the shortage till you eat. When its working correctly; no sweat. But when its not signaling tight and well; each time body runs short of glucose due to no meals ; your liver will pound in too much glucose causing wild swings in your body.
The reason , I ran my system like an old manual steam engine was to keep the liver under control and stop excessive swings in glucose. As you get into type 2 and as it gets more serious, you may be faced to doing manual things to help keep system under control./

Anyways, best wishes and good luck. Frankly the knowledge out there how the body really works is far too simplistic and avoids many key details. Its no wonder most diabetics and Type 2 diabetics go nuts trying to manually manage this mess.

16

Well, I can only report what I did when I got fed up with being a poorly controlled T2 and determined that insulin was the tool I needed. I interviewed doctors. I would make an appointment to sit down and talk with a doctor to determine whether I wanted to be his/her patient. I discussed my situation, my goals, and the treatment approach I wanted to take to see whether we were in sync and could work together.

The result is that I now have a doc who works with me, not against me. He treats me like a peer, not an ignorant child, and he listens. We solve problems together.

17

DP is a toughie, because we're asleep when it revs up.

The most efficacious solution to DP is an insulin pump with fast-acting, or (God help us!) setting an alarm at 2-3AM and shooting a pre-bolus to get ahead of it, then again at 4-5 to check BG and make a correction if necessary.

The latter really isn't practical. No one can keep up a routine like that for long.

Absent that, a long-acting before bed, like Lantus, can help quite a bit -- as long as you also follow some eating rules (i.e., nothing after dinner, unless BG check calls for it). The hit it when you get up with some fast-acting as a correction if necessary.

However, this all requires access to insulin. Gotta say, I've been thinking of you every day and am pulling for you in spirit that you can find a physician that will help you achieve your goals...

18

19

Heather, It wasn't until about 6 years ago (after being diagnosed for 9 yrs) that I decided on my own that this was MY disease and I had to know more than my docs did. I had to do my own experiments with what they gave me to use. So I took the Amaryl (first drug of their choice) and split it to twice a day....AM< and dinner....I took the Janumet, and took them one in Am at breakfast and one before going to bed rather than dinner with my evening snack. But these I did one at a time, so I would know which one was doing what. I guess what I am saying is I had to do my homework, document what the results were and then share that info with my doc. When they finally gave me the go ahead with humalog, I did the same thing, meals before or after, when does it work best for me. I'm afraid that in this modern world, we write our own ticket with most of this stuff. And that's what many of the successful diabetics I know and have corresponded with do themselves....they read up on the meds that are recommended and then try it as prescribed and if it doesn't give them the results, they read up it, and then try it in a way that works best for them. Sad but true, we do know our bodies better than our docs do. Lucky the person who has a doc, and endo, a CDE, a health coach to rely on, most of us for whatever the reasons don't have all those helpers being helpers or have them available

20

Excellent comments and right on target. This 30year+ type 2 has had the same experience.

I started back in 80's and went to Doc and followed that. Much later when it got real serious; I got real serious about it and worked with good doc and got him all the measurements I could and also dug, researched and read every thing I could on line as well as track and follow a number of excellent web sites to see what others were doing.

ergo - sdkate is right on. One needs to experiment a little but always have your good doctor in loop.

Best wishes and good luck with your health.