Very disappointing doctor visit

Type 1 and LADA
1

So, after stopping Victoza I have been having what seems to be some insulin resistance, I’m taking much more insulin now than before I started the Victoza. I also have been having very unpredictable numbers. I can’t see a pattern to them to fix things on my own. Corrections don’t work a lot of the time. I will do a correction and my numbers won’t move, but sometimes I do a correction and it drops me low (this is happening without rhyme or reason as to time of day, activity level, et.c.). So I needed help and got in with my endo’s PA.

I was told that there is nothing he could do because there isn’t a pattern to my numbers and to just leave my pump settings where they are. Then he told me that it really isn’t that bad because his other patients usually run from 300-400 and my numbers (running around 180-200 a lot) aren’t that bad. Then, he called my endo in and she agreed! So, I went in because my numbers were erratic and they can’t do anything because my numbers are erratic. They said nothing about the need for more insulin though I brought it up multiple times, and to top it off, my endo told me to stop doing corrections at night because I might get low. I’ve had one overnight low in the past month! So, if I’m 200 when I go to sleep I’m going to be 200 when I wake up!

The PA wants a weeks worth of pre-meal and pre-bedtime numbers after I showed him my numbers from the past month. I feel like that was a waste of time and now I have to continue to feel sick and tired all the time. I’m at a loss.

2

I know how you feel about the lack of help from your doctor. When I was having lots of trouble with my BGs several years back, I appealed to doctors thinking that they would know how to untangle the mess I was in. I went through three doctors in five years. I finally came to the conclusion that they are not as good at this game as me. I thought they were the pros and I was the apprentice! I had this allusion that they knew the solution to my riddle, I just needed more of their attention. I was wrong.

I finally realized that as good as doctors’ intentions are, they do not live in my body 24/7/365. I needed to figure this out for myself and take charge. In the end, when I starting to figure things out, I found answers that were not mysterious or magical.

I’m not sure what Victoza does exactly but maybe it takes some time to leave your system. To me, it sounds like you need a reset, to wipe the slate clean and start fresh. I would start with a commitment for daily exercise, a minimum of twice per day sessions of something as simple as walking. Walking 30 minutes after a meal gets your blood moving and tends to blunt post meal BG rises.

Have you ever tried to fast? For a time I was doing a 24-hour fast once per week. I found that it always had a beneficial effect on my blood sugar. I would do it from after dinner one day and skip eating until dinner the next day. I would, of course, treat low BGs with glucose tabs. I also allowed myself coffee and water.

Speaking of water, I think deliberately increasing water consumption makes me feel more alert. It’s simple thing and it certainly will do no harm.

Since you’re starting fresh again, now would be a good time to reassess basal insulin needs. Getting the basal matched to your actual needs provides the basis for all other insulin dosing. You can read the protocol in Gary Scheiner’s Integrated Diabetes website. This is an exercise that might take a few weeks to complete but I think it is so worth it.

I’m sorry of my long list of taxing suggestions overwhelm you. I’ve found that the docs don’t have the answers and that the answers, at least for me, have always been found in the diabetes basics that we’ve all known from the beginning. Diabetes is about insulin, food, exercise and using your brain to orchestrate how these factors come together for you own customized solution.

You don’t need to do everything at once. Make yourself a list and chip away at it over time. While you do that, stay safe by fingersticking a lot and always have glucose nearby. Diabetes can seem like a huge project when it gets unruly but I’ve always found that it yields to intelligence, discipline, and tenacity. You have what it takes to rein it in.

One last thing. Keeping a log will help you start to recognize some patterns. This method works. I know it’s a pain to document everything but it’s illuminated for me a path out of the darkness more than once.

Good luck!

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3

I really appreciate your response! I should have known that if I couldn’t figure it out, then the doctor wouldn’t be able to either. I’m most concerned about my increasing insulin needs, seemingly for no reason.

I fast for 15 hours or so every night (almost), and I do intermittent fasting some days when my numbers are extra crazy. I walk about 2 miles 3-4 days a week and do 30 mins of yoga and stretching almost every morning, plus body weight excersizes 3-4 times a week. On top of that, I have a very physically demanding job. I try to drink a lot of water, but that’s probably my biggest weakness. I check my blood around 10x a day.

I’ve done basal testing and I:C testing.

My biggest concern is that nothing has changed. I haven’t changed my daily routine, I eat the same things, I do the same things, the only change I’ve made is stopping the Victoza and now my numbers are crazy and I need more insulin and the doctor can’t h elp me! Oh my!

4

Your exercise habits are very good. If you could extend your walking to a few more days per week, I’m sure that would help. I’m a big believer in the idea that the body’s demands fluctuate and we need to respond to its needs dynamically as well.

If your body needs more insulin, I would just give it while keeping close track of your dosing with a written log. Perhaps your Victoza use masked this increased need and only now you’re seeing it. I know it’s alarming to add this extra insulin because you know how potent it is. I suspect that it will continue to ask for this extra insulin and then it will subside and your needs will diminish to a lower level. Maybe higher than where you started but less than where it tops out. As long as you keep a close watch with your fingersticks and have emergency glucose handy, I would satisfy your body’s requests for more insulin until it stops asking for increasing amounts.

The reason is not apparent to you but your body is pretty smart. I would just follow its requests and try to give it what it wants. You did stop Victoza and this withdrawal may be more significant than you realize. I’m sure there are other ex-Victoza users here and they may be able to shed some light on this issue.

5

Ahhh ha! You have physically active work. Is it a steady pace and every day? I’ve found that I’m more sensitive to insulin as the week goes on such that by Friday I almost don’t need insulin ( it sort of feels like). I definitely need a work basal and a vacation/weekend basal. And the rest of a weekend resets my insulin sensitivity. I’m trying to make a video of adjusting to a physical job after a six week vacation. I’m reviewing every day what my cgm graph looks like and what my treatment was. In the past I couldn’t get my basal low enough and the doctor said I would just have to eat while working. I discovered however that a bolus would affect bg for six, seven hours. I don’t take a second meal or snack bolus although I eat a second time. The second bolus is too unpredictable and it doesn’t lower bg when food is raising it. I’m still working on how to deal with physically active work. But I can say this with certainty, it was too difficult without an accurate continuous glucose monitor.

6

Best advice ever. I religiously keep logs, every day, every meal, every exercise, if I have more than 2 glasses of wine, every time I sauna, everything that effects any change in my body… During times of great stability I’ll relax the record keeping a bit, during times of weirdness I’ll kick it into high gear and evaluate constantly… It is my entire method, and it really works.

7

I’ve never actually referenced a “log” as much as the data reports from my pump. Medtronic’s pie chart reports have been very useful for me, they show the “forest” without getting hung up in individual numbers. The highest number of the week doesn’t matter but the time of day where you have more highs may give you a clue as to either a setting or perhaps a behavior that might throw you off. My office is AWASH in Skinny Pop popcorn and I finally brought my scale to work to see exactly how much fit into a bowl of it and it turned out to be 7G of carbs which perfectly explained that my guesses of 10 or 12 would be off, so I’d have a second bowl which would then blow me up. Now that I have it figured out, I can be more successful.

What might make it easier to make an adjustment to ratios/ rates/ diet would be to take like a week and try to limit your carbs and eat the same thing very consistently. Corrections are tough but if you’re doing a lot of them, maybe cutting back on the food at your current ratio, would help you confirm if the ratio needs to be adjusted? When I got my pump, my doc was very close to what the numbers needed to be and we made some adjustments but I’ve made many changes on my owns, rarely anything big but slight tweaks to this number or that number will often make significant differences both in the target “meal zone” but down the line as cleaning up one will sort of ripple through the other ones.

8

I do keep logs, the reason I went to the doctor was because there was no pattern! My biggest concern is that my doctor is not as aggressive as I would like to be, and that I’m slowly increasing my TDD. I’ve done this dance before and I know that the less insulin I take the easier my D is to control.

@acidrock23 Yep, already done. I eat low carb to begin with and generally eat the same thing at the same times of day.

I feel that the point of my post has been missed, I already make all my own adjustments, eat low carb, keep records, and have had good control up until all this happened. So, I will ask you all a question: Is it normal for an endocrinologist to be this relaxed about my blood sugar numbers? When I run in the 200s for 12 hours or longer, I feel horrible, very sick. Should I just give up on life and go on disability if I’m not supposed to do corrections overnight? (slightly sarcastic, but I’m would have to get FMLA if I worked first shift). I feel that I’ve outgrown my endo and her team so to speak. Do you guys find that this is normal endo behavior, or have you guys found agressive endos?

9

I think any good doctor will adjust their expectations to fit the unique condition of their patients— if what you just described is the best you can do, then a good doctor will accept it and pat you on the back for it… If you could do much better but aren’t, a good doctor would be trying to coach you to get you to your goals… Any good doctor should make sure the resources are available to their patient to do the very best that they can for themselves— and then be supportive. That’s really about all they can do…

If she’s telling you not to corrections and to spend hours at elevated levels like that, that would be a problem for me, unless they had an awfully good explanation and justification based on my unique history…

10

Here’s my summary of your initial request: you stopped Victoza recently and discovered that your usual insulin dosing no longer works. You already eat low carb, exercise, intermittently fast, log and analyze pertinent diabetes data, and your appeal for your doc’s help underwhelmed you.

I think for many endocrinologists, if their patients avoid all severe hypos, they’re satisfied. I speculate that the typical endo would be happy to see their patients range from 100-200 mg/dl. I feel they are totally freaked out by severe hypos and that fear dominates more sensible guidance. I know there are exceptions to this but I’ve been through six or so endos in my 32 years with T1D and that’s been my experience. In fact, when I asked one endo for help to get my A1c under 6.0%, he said I was crazy!

I found that the best and most effective treatment regimens did not come from any of the clinicians that I faithfully visited every 3 months; they came from reading on this site, reading diabetes self-help books, and most importantly from my practice of personal experimentation.

What is your current total daily dose (TDD) of insulin? Has it increased a lot since your diagnosis? Have you gained any weight in the last ten years? I became insulin resistant when my TDD rose from 40 units per day to 80 units per day over a 10 year period. I also gained 25 pounds in that time, a relatively gradual increase. Your picture looks like you are slim with no extra weight. Is that true?

11

A doctor’s main concern is a bad hypo, a DKA event, and malpractice insurance cost. My doctor took me off full dose Invokana saying two of his patients had been admitted to hospital with DKA.

One does get more hypoglycemia events with more aggressive treatment of highs. If you think about a doctor’s perspective, and that with type two a main concern is “quality of life”, meaning they don’t ask an elderly patient to make difficult transitions if the reward is small compared to the struggle of changing. This explains why some diabetics go on insulin, get a few bad hypo events and are told they no longer require insulin.

12

While on the Victoza I dropped from 118-ish down to 102 (I’m only 5’2", but that is still too low!). I’m staying steady at 110 now, a very respectable weight for me. My TDD went from about 20 (before the Victoza) to 30 in the past couple weeks and as I continue to make adjustments, it keeps going up. I was diagnosed at 11 months old, so I can’t really answer that question, but, more on the history of my TDD in a bit. Keep in mind, also, that since all of this has been going on I’ve been skipping meals if my blood sugars are too high, and I basically don’t snack at all anymore (where before I might have some nuts or a piece of low carb toast through out the day).

The reason I’m so terrified of taking more insulin, is because I used to take more insulin. There was a time period when I was slightly overweight. I took 35u of Lantus and had a 1:8 carb ratio and did A LOT of corrections. The more insulin I took, the more weight I gained. I ended up gaining about 40lbs in a year. I was miserable. I mean, I was sick all the time, my BGs were all over the place, I was horribly depressed, I was hospitalized 3 times in a year for illnesses (the stomach flu twice, and a lung infection once) that I know I could have handled had I been healthier. The thought of going back there terrifies me, especially since it took so long to get the weight off and I still go through periods where it starts to creep up again, though I’ve remained at 125 or under for the past 5 years.

I’m at a loss! I keep just adding more and more insulin. I’m slowly getting my numbers in better range, but I’m dealing with issues I’ve never had before. I’ve never dealt with morning time insulin resistance or dawn phenomenon, and now I do. I’ve never had problems with corrections (unless I had a bad site) and now I do. All of this started when I quit the Victoza, but maybe that isn’t the cause, I don’t know.

Is it possible I’m just becoming insulin resistant because I’ve been on insulin for so long (26 years now)?

I also feel that because my TDD is low in the grand scheme of things and because my A1C is 6.4 (just got the results back a few days ago) the doctor’s just aren’t going to take me seriously.

13

With your TDD numbers, I would venture that you are not becoming insulin resistant. Insulin resistance numbers start looking like over 75 units/day.

Also, you are pretty solidly in a healthy weight range based on BMI. You would have to gain around 20 pounds before you begin to be classed as overweight, and that’s assuming that the BMI scale is even accurate for your body type (more muscle can skew results and make otherwise healthy weight people score overweight). Sometimes we have to let go of our fears from the past, in order to see the present.

I agree that your doctor’s team isn’t treating you with the goal of helping you achieve your objectives. It seems that they are treating you as a data point in their practice. Since you aren’t in crisis (aka - over 7 A1C), they are checking off the box. “Yep, she’s in range, NEXT!”

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14

Sam19. I appreciate your comment about a good doctor personalizing the care. I have the opposite problem - I’ve had Endo’s with very very low opinion of their PWD patients. Wanting my management ot be less stringent, and my goals less high (which means my goal of low A1C’s). Well Excuuuuse me! If I am capable of tight mgt, then get used to it. And if the excuse on the part of the MD is that most of his patients can’t do it - then enjoy my success - don’t lower my standards

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