SUPER discouraged post-endo appointment

Type 1 & LADA
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So I went to meet my endo in person for the first time ever today (I’ve only had diabetes for a year, and our few visits have been virtual so far). All I can say is that I’ve come out of it feeling super deflated and disappointed.

He’s a perfectly qualified doctor, extremely well educated, and I like him well enough as a person. However, a lot of his suggestions caught me off guard because they weren’t what I was expecting.

For instance, I’ve been schooling myself on diabetes by listening to the Juicebox Podcast and reading books like Think Like a Pancreas. All of them say that basal rates are the foundation of every diabetes protocol and getting them right is very important. All of them say that the pre-meal bolus is important, too.

But my doctor mentioned two things that surprised me. He basically said basal rate doesn’t matter that much, and that I should just keep my overnight basal at the standard rate he set for me (0.95/hr). I had done all of these overnight basal tests that felt inconclusive and he basically said they weren’t necessary. He also said I didn’t need to worry about pre-bolusing, and that I should try just giving myself a bolus when I sit down to eat. He make suggestions for changing my IC ratio to 1:8 (more aggressive).

I talked to my (non-diabetic) partner about all of this, and how it confuses me. I think maybe I should consider looking for another doctor, and he thinks that I’m not giving this guy a fair shake, and that I should consider his suggestions before writing them off.

Thoughts? Thanks in advance for your support. It is weird how I feel even more alone and lost following an appointment like this…still new on this journey and it is really, really, really hard. :cry:

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I’ve seen 8 different endocrinologists over the years and they don’t recommend the exact same treatment. There is no one right way to skin the diabetic cat. Everyone has different responses to treatment and asperations for control; every doc has different preferences. There will be a best combination of these for you.

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I can only say i understand, I met with an endo once 6 or so years ago and was so disappointed I didn’t ever go back (just told my pcp that he had me back for diabetes care), I should have asked pcp for a referral to someone else but I waited another several years to try an endo again (and then only because pcp said I needed to in order to get pump and cgm) anyway my new doctor is very good and I wish I had not bailed out years ago. I guess 2 things come to mind, wait until the next appointment and after that see if you feel the same, or start looking for someone new , one dr does not fit all

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My guess is he is following the common guidelines of target A1C being under 7. What is your goal/what have you already achieved??

Did you discuss A1C or target BGs that are YOUR GOALS? If so, how did he respond ?

Keep in mind the average patients just want to be told what to do. You will find many here that want to set own goals and find endo that will support it.

For years, I just followed doctors orders, which in 1980s was to get A1C under 9. (Prior to that they were 10-14 using older insulins.) However once I started using early CGM (Medtronic sof-sensors), it made me much more aware of how to influence my bgs and A1Cs. I got more help on achieving MY A1C goals from those that walk in my shoes, along with many great books and online resources.

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There are different philosophies. Personally, I’ve basal tested exhaustively and found that it really doesn’t work for us. For one, getting our kid to fast 8 or 9 hours at a stretch meant it would take months to basal test our entire day, and for another, things change so much day-to-day that what works one day may not work the next.

I have gone to endocrinologists who were brilliant with settings – they set up 10 different basal rates and like magic, the numbers work for a few weeks. But soon enough, things get out of whack and it’s really hard to trouble-shoot when you have so many different segments.

Also, as for prebolusing – many people swear by it but for our son, prebolusing can lead to lows, then highs later. It really depends on how fast insulin works for you. If you’re spiking high and not coming back down to baseline, that means a more aggressive carb ratio is probably in order. But if you prebolus and have a flat line after, continue doing what you’re doing…

Anyways, our current endocrinologist is not much help with settings, but she is very supportive in other ways, so we like her. The fact is whatever settings your endo recommends will only be helpful for maybe 2 or 3 months, and sooner or later you’re going to need to change your own settings to get optimal control. So if you like the doctor, I’d stick with him unless you have easy access to another doctor whose philosophy seems more in line with yours.

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@amusesbouche First, I’m sorry your experience was an apparent let down. Second, I’m shocked at the approach given the totality of all guidance/advice from seemingly reputable sources (ADA, JDRF, docs, and CDE’s). You may already know the answers, but a few more questions may be appropriate: Is he diabetic himself (i.e. first hand experience)? How much of his practice is T1 related (Endo’s do other things too)? How far back was his diabetic training? These may be uncomfortable questions, but your health is in the balance. Understanding every situation is different (insulin amounts, “normal” diets, amount of carbs, etc.), he may have reason for the comments. You have to make your own judgement. I’m obviously in the “second opinion” category; but, its your decision and comfort factor that count. Take in all the advice you receive, consider the sources, and follow what you believe is right for you.

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Over the years of learning as far as diabetes is concerned, I would say that as long as the endo is somewhat supportive, keeps on top of the prescriptions and doesn’t tell you that your experimentation is stupid I think you are doing ok. We have had GREAT endo’s and so-so endos. A couple years from now you will not need the endo for much. As far as basal rates don’t matter, that is a pretty bold statement to make. I understand not wanting to overthink it, but for my son when his basal’s are dialed in, everthing else is easy. With that being said, we don’t have 10 basal segments, but rather 3-4 depending on profile.

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I just got a call from my PCP. I have been making enquiries about a pump. Tandem contacted her office, and she thinks its a good idea, but wants to refer me to an endo. I have read enough stories about endos, that I am not looking forward to it.

I had one experience with one who wanted to change my whole regime with his favorite drug of the season while I was in very good control. I said, “Thanks, but no thanks.” This will be a different doctor.

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In my 40 years with diabetes I’ve seen three endos and two were a disappointment and one from Mayo was pretty good, but obviously insurance and distance make that problematic.

My PCP handles my diabetes prescriptions for the past 20 years and that worked very well. Unfortunately he is retiring so I need to find a new doctor.

Anyway finding a good diabetes doctor can be difficult, so don’t be too discouraged. It’s pretty much par for the road.

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My non-daylight savings nighttime basal is:
(set to 93 percent on exercise days)

11 pm : 1
12 am : .7
1 am : .8
2 am : 1.3
3 am : 1.45
4 am : 1.4
5 am : 1.35
10 am : 1.3

not too much rhyme or reason for this other than I set it by making little adjustments when I was open looping and it kept things flat, my overall daily dose is around 40 units and I know everyone is different, but over time I think it’s possible to get a sense of what works and a routine

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There are horrible endos out there. My first one was horrible. I had asked if I could be a type 1 as I had an uncle that was type 1 and he said no and never tested me. He just kept wanting to put me on the medications that made me sick already. After the second visit I refused to go back to him and found an internist. That internist put me on insulin and as soon as my group hired a new endo sent me to her, she tested me without me even asking and I was finally diagnosed right.

Thank goodness I refused to go back to him because how sick could I have gotten? I needed insulin not drugs, This doctor supposedly was really good, held up to me that he would be able to help me with my escalating Bg levels…it goes to show you they aren’t always good, maybe he was with real type 2’s who knows.

My second endo and my third endo were gems. Really I just want scripts written nowadays. I think a lot of time patients mostly just want to get told what to set anything at. We are more of an elite group on these forums that care? Or maybe have figured out there are alternatives to care and ways to treat this disease other than what the doctor has said? I have learned a lot more from forums than from doctors. I think from the doctors view, if they have to manage your diabetes, it’s easier for them if things are simple…one basal rate, up or down. One dose for each carb that seems to work while never getting close to a low. Because frankly that’s just easier for them, less time consuming.

My second endo was a type 1 herself. She stayed up on all the latest. My current endo wore a Libre and saw the fluctuation in accuracy and BG levels in a “normal”. When I said I was having issues with going high when I snorkeled she told me she was told strength training helped from another patient. When I asked for Baqsimi, she warned me that people had told her they got a headache when they used it. I asked for Afrezza and she learned what she had to set up to get it for me, she hadn’t had another patient yet ask for it

But I would never stand for a doctor that says I shouldn’t do something that works for me or tries to say you have to do it his way. If they had a solid case of why something is better, I would listen and then make my decision. I would suppose if I had bad control it would be different. It’s not so easy to always switch if your group just has one endo…but with tele health it is easier to hook up with someone at least.

So you just have to decide what you want to do. It’s your disease and a non diabetic has a hard time I think truly understanding. They are taught this is how you treat this and unless they explore more options or maybe are open to experiences of different people a lot probably just pick the easier route. I have heard of several that just recommend one kind of pump and that’s all they prescribe. It’s easier for them to only learn one.

.

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I think the methodologies diabetics employ for testing really comes down to your own personal knowledge and experience. Doctors and experts disagree on just about everything but they aren’t in your skin. Try everything you learn about and go with what works best FOR YOU and let the Endo know that while you value his or her “opinion” that’s really all it is. You ask 10 Endos and you will get 10 different answers.

I stopped asking our Endo any questions that required actual “experience”… For those types of questions, I turn to FUD because I honestly trust them more. And for us, FUDs opinions and guidance have made managing Liam’s diabetes very easy and manageable.

So figure out what YOU want to do; what methodologies you believe in most, etc and run with it. If the Endo has a problem with your methods that’s ok… You are educating yourself and once you have a solid foundation of knowledge it really is your own journey. All input is welcome but you want to get to the point (imo) where you KNOW what you are doing, why you are doing it and you can argue your position and rationale too anyone challenging it. They can disagree but that won’t impact you in your informed and educated decisions.

That’s how we do it anyway. Endo writes scripts and keeps an eye on any symptoms of long term diabetes damage (neuropathy, retinopathy, etc)

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I think I understand. You are sounding like my niece when it was time for her to learn to drive a car. She took the required driver’s ed and decided not to pursue passing the driver’s test. It turns out a friend of hers who was a novice driver had gotten into a serious crash, so my niece was very anxious and easily frustrated when the gas pedal made the car lurch forward, braking was abrupt, and the steering wheel never made the car go quite where she wanted.

After a year passed she was ready to start learning. She practiced basic techniques, and developed competence. As she learned to control the car smoothly her confidence grew and she became comfortable.

I read your post yesterday, and my first impression was that your endo is an imbecile to say outrageous things like basal rates don’t matter and pre-bolus is unimportant.

But after thinking a while, I think perhaps your endo is a good doctor who decided that treating your comfort right now is more important than stressing over details of your dosing technique.

Your friends here at FU will help you develop your skill at dosing, and as you master it I think you will feel better about the whole thing.

Seems like quite the contradiction, doesn’t it. Let me try to thread the needle on this.

A good basal schedule helps the elite diabetic stay in range, because it reduces the degree to which the BG tends to wander off by itself. And if the BG does wander off, we can look for other reasons. So the first quote is right. But the endo is right too, in that you can get good health and decent A1C without running half-day starvation basal tests all the time.

I did serious basal tests when I was a beginner, because I didn’t know any alternative. And they did give me good information. But now I think proper basal testing isn’t worth it for me. All I do now is pay attention when I get the impression that my BG is wanting to rise all by itself during some part of the day or night, when I haven’t been bolusing or eating or doing anything that would make the BG wander. If so, I add a little bit more basal during that time period. Similarly, I reduce basal a little if I find myself going low for no reason, away from meals. No big deal, and maybe it’s not perfect, but I can get a good A1C and time in range without serious basal testing. For my personality that’s easier.

You too will find what works comfortably for your body and your personality. As you get better at it, you’ll look less to the doctors for help dosing, and more for monitoring the health indicators like the various lab tests.

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My PCP handled my diabetes care for 25 some years and was pretty much hands off. He would make suggestions and bring up ideas and let me decide. Now he’s retired, and fortunately we have a diabetes clinic with endos, nurse practitioners, diabetes educators, and nutritionists. So, I work with a team now. I’ve been seeing a PA who specializes in diabetes and is really good. I’ve never actually seen an endo, but fortunately there are several if needed. I’ve learned a lot from my new “team.” But, like @ClaudnDaye, I go to FUD for most questions. They are the ones with all the experience.

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I really like this comment, I think it’s the right angle here. Especially this:

I did serious basal tests when I was a beginner, because I didn’t know any alternative. And they did give me good information. But now I think proper basal testing isn’t worth it for me. All I do now is pay attention when I get the impression that my BG is wanting to rise all by itself during some part of the day or night, when I haven’t been bolusing or eating or doing anything that would make the BG wander. If so, I add a little bit more basal during that time period. Similarly if I find myself going low for no reason, away from meals. No big deal, and maybe it’s not perfect, but I can get a good A1C and time in range without serious basal testing. For my personality that’s easier.

I’d also say that we create these conceptual ideas like “basal” and “bolus” insulin and while they do have analogues to physiological processes, your body at any one point in time doesn’t distinguish between those two, and I think the boundary between the two is in fact blurrier than we admit. It’s a very useful concept for when you’re on shots for two different types of insulin with different duration of action and only have a blood sugar meter and want to give the minimal set of injections to keep in range.

But with a pump I think this concept tends to be less useful. At any given time in any given day, you just need a certain amount of insulin to keep your blood sugar in range. That insulin can come from “basal” programming or from a bolus, but to your body, they are indistinguishable. So you actually have a wide set of parameters that might keep your blood sugar roughly in range. For instance, my son has had roughly the same A1C with an aggressive basal rate that had him tend to drop low, combined with a weak carb ratio, and also with a weaker basal rate that was just enough to keep him flat, and a stronger carb ratio. In the end, the amount of insulin he had in his veins at any given time was roughly the same.

Anyways, the point is that your endo’s approach might be a perfectly valid one – remember he has the benefit of seeing hundreds of patients and noticing trends --like if patients with aggressive basal testing tend to do better or not. If he is opposed to you trying a different one, that’s not ideal, but if he just said in an offhand way that basal rates don’t tend to matter much, he might not be wrong…

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My endo once told me “With a CGM, you should really have ZERO PERCENT” lows. I literally laughed at her and rolled my eyes…THAT is the kind of thing that ONLY someone with zero experience would ever say.

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And it blurs even more if you pump / loop and ONLY use fast-acting insulin for both purposes.

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The model isn’t particularly reliable.

A few of my jobs involved building statistical models for large organizations and even with the best data in the world, the models have built in limitations whereby individual situations are mostly unpredictable and aggregates of millions of situations aren’t always that predictable either.

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I recently had a routine physical in which my old internist said “I see in your labs that your BG was 109. That’s a little high. Are you paying enough attention to your diet? Your A1C of 5.4 is ok.” I politely explained that based on his comments he was not qualified to evaluate type 1 diabetes.

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YES! Those kinds of comments leave you almost speechless, definitely confused, and questioning the validity of everything this person tells you. Lol

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