When medical providers don't trust you as a diabetic

[ChrisP]

It’s a tough situation I don’t know what I would do if a nurse demanded my insulin.

I think I would politely tell them I’m not willing to give it to them without discussion ideally from an administrator.

I’d go as far as saying if you keep my average glucose under 150 I’ll agree not to take any shots but if you can’t do that then I feel like I have to do something.

I’m pretty certain there are studies related to high hospital blood sugars slowing recovery and increasing chances of secondary infections.

I wonder how many cases there are of patients in the hospital killing them self by accident with insulin? (I mean after they arrived, not before they got there).

[ChrisP]

I had a colonoscopy about a year ago. They didn’t tell me I had to do anything special related to blood sugar which I liked. They let me make my own calls on that.

Since I was being put under I asked to talk to the anesthesiologist (they are in charge of monitoring blood sugar).

I wanted to make sure they heard it from me I don’t want them to inject insulin at all. If they needed to assume 1 unit = 50 point drop. (everyone is different). Also unless I’m way over 250 just leave it I’ll deal with it after.

I felt really good after talking to them because I got the impression they had no desire to give any insulin and wanted to avoid it as much as I did.

In my case I went in around 95 and stayed there until I woke up, no fuss.

I think it’s scary to think about some less experienced person injecting insulin while I’m unconscious. Even and Endo would make me nervous because they are guessing what your insulin ratio is.

[ChrisP]

Diabetes is a lot easier if we don’t eat

[pstud123]

Rational fasting can help lower BG. By breaking habitual eating patterns, retraining our sense of fullness/satiation, increasing/resetting hypo awareness we are more likely to eat what we need instead of all that we could.

Delayed eating is more effective than extended fasting for quickly determining a rough basal profile.

The thing is that “basal rate” for someone who needs insulin infusion is partly a function of intestine contents and we are directed to maintain a reasonably regular schedule of eating. I determined my basal profile by fasting for different 12 hour intervals, my night profile assumes I ate an average meal at ~6pm, Not a liquid diet for 24 hours preceding an empty bowel.

A “basal rate” is a metric like A1C. It doesn’t measure basal need, but average demand. It’s not what happens in real time, it’s an average over an interval under average conditions.

I think of basal rate like idle fuel consumption in a car. Idle consumption varies with what has been happening. Idle is faster before a car warns up, become more efficient and sloiws as the car enters closed loop operation controlled by the exhaust monitors. It increases when loads like AC , headlights,and radio are turned on. It varies between cars with different engine displacements and idle speeds.

No one can determine a sleeping “basal rate” for fasting in any individual with diabetes without empirically measuring it. Chronic stress level, sleep quality and profile, body mass, fat reserves, activity, ambient air temperature and humidity liver and kidney health all vary. They all effect BG dynamically because BG is affected directly and indirectly by multiple hormone levels.

Interstitial CGMs aren’t perfect, but give more insight into BG variation and insulin needs than BGMs.

The latest gen of integrated infusion systems was what convinced me to finally switch from MDI. I can see variations in my basal need as Control IQs Sleep “activity” mode adjusts my insulin delivery dynamically every night based on BG. My BG (and BP, pulse and resp.) all rise as I awaken, before I get up, because of a noise outside, for a bathroom break, as I am having a nightmare. (All this is between 1 and 4AM, before my well-documented dawn rise.)

During waking hours, two days with identical meals and virtually identical activity can have total “basal” that varies by 10% because of psychological or situational stress.

[MKSSS]

Ugh, yes I’ve sat through so many “lectures” on taking care of my diabetes from doctors, dentists, nurses, etc. it’s so annoying!!! I feel this. I don’t think any of them have confronted me personally about my management, but it takes all of that I have to not roll my eyes and be polite. I feel ya!

[Tony24]

Just take a screenshot when it is 140 and show them that.

[Kathryn41]

It is a challenging situation, especially as you are the one with experience and the dental student is not but is worried that he might be held accountable if something happens to you because of your diabetes. Perhaps it would reassure him more if you had a letter from your endocrinologist acknowledging that you are experienced in your own blood glucose needs and care and while the standards address the general diabetic community, diabetes is not a one size fits all and there are those who are able to maintain excellent normal levels of blood glucose control through the use of modern diabetic technology (not necessarily referring to a pump) who have through experience and years of practice achieved better than average glucose levels. He then lists you as one of these and that he has no problems with you undergoing dental procedures with a level you believe is appropriate for the circumstances, rather than trying to follow a medical one size fits all ‘norm’, or words to that effect.

He may respond to a more experienced medical practitioner’s message rather than the patient’s.

[DrBB]

Just a thought, but this being essentially a teaching situation makes it much more rigid and rule-bound than it would be in a private practice. They have rules for everything because that’s the value they’re selling—what the students are paying for. So they’re going to stick to the letter of whatever policy they have for a situation, even if that policy is sadly outdated. T1 being relatively rare, the policy is less likely to be reviewed against current standards and updated accordingly, and there you are.

[Terry4]

@Kathryn41 – You lay out an eminently reasonable and thoughtful course that should inform the various administrators involved in enforcing a muddy, ignorant, and outdated policy. I meet with a PA from the diabetes clinic that is part of the same academic institution that the dental school is a part.

My usual endo is unavailable to meet with me due to a conflicting schedule but I’ve been going to this clinic for six years now. They have my glucose statistics over the that time. Someone at that clinic should be able to write such a letter. I don’t know if it will resolve this situation and more effectively.

@DrBB – Your analysis is persuasive and dampens my belief that my case will move the needle much in terms of how T1Ds with abundant newer technology are treated. It’s too bad as I see this as an excellent opportunity to use the wider technical knowledge of the younger generation as an asset in this situation.

I wonder at this point if the school would fire me as a patient over this. That possibility is not entirely negative. I went to the dental school to save money so my future costs would be higher. But my time spent in the chair will be about 2/3 less. This is a very attractive idea to a post-stroke patient who is dealing with some stroke triggered mental health issues. I still feel capable to meet their preferred patient profile but their diabetes policy chafes.

[Jag1]

@ChrisP

My Endo a year ago was telling me how the Dexcom was faster and more accurate then finger prick.

You know, I was amazed to see that same claim in a TV ad my US Medical, a DME supplier. They actually claimed that Dexcom was MORE accurate than finger stick, and not painful. Anyone who has used fingersticks and CGM knows that finger sticks are NOT typically painful, but they certainly ARE more accurate. Note it is the DME making that claim, not Dexcom. That is part of the reason that I had no interest in going with US Medical as a DME, even though some people have reported good experience with them. I figure any company willing to pay for late night ads with inaccurate information is not one to pick when there are others out there.

[Jag1]

@Terry4

I wonder at this point if the school would fire me as a patient over this. That possibility is not entirely negative. I went to the dental school to save money so my future costs would be higher. But my time spent in the chair will be about 2/3 less.

I think when you go with a discount supplier, you are forced to play by their rules. They are a university not a typical dental provider, and who knows what obligations they are under as far as patient safety.

And frankly, it really wouldn’t hurt to bump your BG from 80 up to 100 or 120 before you go in. 5g of carb - BIG DEAL. Because speaking from my years of watching a CGM, it is by no means unusual for glucose of a T1 diabetic to trend up or down even when no active food or bolus insulin. Walking across the parking lot, going up stairs, etc. Why would you object to bumping your BG up to a more reasonable level given you’re going to be sitting in a chair with tools in your mouth unable to eat for an hour?

[Terry4]

@Jag1

Why would you object to bumping your BG up to a more reasonable level given you’re going to be sitting in a chair with tools in your mouth unable to eat for an hour?

Of course I wouldn’t object to that but your perception of my precise control of my BG is not accurate. During similar periods of not eating I make many bumps and nudges to guide my glucose metabolism. I might eat 1/2 of a glucose tab or add 0.1 units of insulin.

During a dental visit I try to permit the dentist to utilize extended periods of time to work. I think what might work, if the dentist would learn, is to allow me to bump and nudge my glucose level in the normal rhythm of the work flow. It would take some practice.

One thing that I’ve observed about my glucose level is that it’s dynamic. My glucose variability is low for most T1Ds. My current standard deviation for the last 7 days is 14 mg/dL yet during the three hours of dental appointment yesterday my glucose ranged from a high of 118 down to a low of 61 at the appointment end. Before the start I ate one glucose tab to bump my low 90s reading to the 110+ range. I did a fingerstick at the end to confirm the CGM reading and ate a glucose tab as soon as the dentist finished.

My control is perhaps not as intentional as you think. Setting the level at 90 versus 120 is not as simple for me as you write or you may experience yourself. I believe that my glucose regimen is safe and that it could improve.

[Jag1]

@Terry4

I later found out that the school teaches its students that diabetics should be above 100 mg/dL to safely receive treatment.

This is what I was responding to. If your dentist wants a BG above 100 mg/dL while you are in the chair, then this sounds to me like a reasonable requirement, and not a “lack of trust”.

@Terry4

Of course I wouldn’t object to that but your perception of my precise control of my BG is not accurate. During similar periods of not eating I make many bumps and nudges to guide my glucose metabolism. I might eat 1/2 of a glucose tab or add 0.1 units of insulin.

During a dental visit I try to permit the dentist to utilize extended periods of time to work. I think what might work, if the dentist would learn, is to allow me to bump and nudge my glucose level in the normal rhythm of the work flow. It would take some practice.

This sounds odd to me. I eat two meals a day, and I don’t exercise or eat meals until after noon. So I schedule any medical or dental appoints for the morning when I have no active short acting insulin and no food digestion occurring. This is, of course, the time that all diabetics are told to schedule a colonoscopy; and I find it works just as well for dental work as it does for a colonoscopy. During this fasting period, I do not need to make serious bumps to my BG. If I do, I do it while in the waiting room, based on my measured BG and my CGM curve before starting. If you are making several adjustments in carb or insulin in a few hours while fasting, is it possible that you are over-treating your BG?

@Terry4

One thing that I’ve observed about my glucose level is that it’s dynamic. My glucose variability is low for most T1Ds. My current standard deviation for the last 7 days is 14 mg/dL yet during the three hours of dental appointment yesterday my glucose ranged from a high of 118 down to a low of 61 at the appointment end. Before the start I ate one glucose tab to bump my low 90s reading to the 110+ range. I did a fingerstick at the end to confirm the CGM reading and ate a glucose tab as soon as the dentist finished.

My control is perhaps not as intentional as you think. Setting the level at 90 versus 120 is not as simple for me as you write or you may experience yourself. I believe that my glucose regimen is safe and that it could improve.

And by over-treating your BG, what I am talking about is trying too hard to minimize your standard deviation - while in the dentist chair. After all you are looping (I thought); so if you start with no IOB, shouldn’t your loop be able to adjust and prevent you from going down to 61? If not, maybe you need to adjust your loop algorithm and let it take over during your medical/dental procedures - 118 to 61 over a few hours while fasting sounds to me that either you are manually bolusing when you don’t need to, or your loop algorithm may be set too aggressively.

I doubt very much your BG is more dynamic or volatile than mine, I’ve had T1 for close to 50 years and I eat a moderate carb diet (minimum of 120 grams) with a lot of strenuous exercise a few times a week, either rowing or running. In contrast you eat ultra low carb (<30 grams) and rarely exercise (correct me if I am wrong, this is based on my memory of what you have written in the past). I use MDI sugar-surfing without benefit of a pump or loop. So unless ultra low carb causes higher BG variability (which Bernstein for one certainly claims is not the case), I should be seeing more variation in BG than you, not less.

Maybe you just need to lighten up on yourself sometimes - we all know BG management is a marathon not a sprint. So allow yourself some times (like when in a dentist chair) that you will go stress-free and zen, schedule your appointment when you don’t have active IOB, start with a slightly higher number, and let your BG float with the help of your loop, but without your personal intervention.

[The_Senator_From_Glu]

Would your CGM not alarm if you went too low or too high?

[Terry4]

@Jag1

And by over-treating your BG, what I am talking about is trying too hard to minimize your standard deviation - while in the dentist chair. After all you are looping (I thought); so if you start with no IOB, shouldn’t your loop be able to adjust and prevent you from going down to 61?

One thing I have learned after almost six years of living with an automated insulin dosing system is that you never arrive permanently at a place of ultimate stability. You may enjoy a few days or even few weeks of metabolic peace but things will change. It may be infusion sites that don’t absorb as well or even new sites that absorb better. Or your overall insulin sensitivity changes.

When these changes happen, it’s my job to play with the basal rates and/or the sensitivity schedule to make adjustments. I do my best to counteract the 101 things that can interfere with suitable settings. But these things take time and trial and error efforts.

At least they do for me. Your diabetes may move less and cooperate better; for that I would be grateful and I say good for you.

My lack of glucose variation is a strong point for me with regards to being a dental patient. Low trends can often develop over hours in low and slow decline. Attention and focus to minimize SD seems a good thing, does it not?

I need no reminder as to the long term nature of my blood glucose project. Like you, I measure my time with diabetes in decades. My difficulty with regards to my dental care stems from social and cultural factors. If you have any ideas related to that, I’d love to see them.

[Terry4]

My CGM does alarm when I go too high or low. In fact, my five-minute glucose updates appear on my wrist-watch.

[The_Senator_From_Glu]

I would assume that’d be enough to assure him. (Or her)

[Lisa_H1]

Oh, this makes me want to stick forks into my eyes.

Some doctors just will not listen to patients, no matter how knowledgeable. I agree with other comments that this person must have had dealings with diabetics who don’t take care of themselves, and therefore he puts a blanket judgement on us all.

Would your regular doctor back you up here? Could you give your doctor’s contact info to this faculty member since this person isn’t willing to believe you? He may listen to your doctor.

It’s a pain, but it might get this guy off your back so that you can get the dental care you want.

[Timothy]

I’ve gotten to the point where I believe there is no long term stability at all.
When I think of my average days. If I’m exercising it makes my insulin needs change, if I’m running high before a meal or if I’m feeling sick.

There are so many variables. The idea of a system that can account for it all is seeming less and less likely.

Maybe transplanted islets will be the key

[Terry4]

@Timothy

I’ve gotten to the point where I believe there is no long term stability at all.

I fear I’ve painted an extreme of the BG instability I experience. My BG variability is relatively stable yet still changeable enough to demand management during a three-hour dental appointment.

It is a situation with more hope even though ignorance mindless rule-following makes matters worse than it should be.

@Lisa_H1

Would your regular doctor back you up here?

I see a PA from the diabetes clinic (same institution as the dental school) this week. I will see if she has any appetite to help. I am not overly-invested in that idea but I will try.