When medical providers don't trust you as a diabetic

Mental and Emotional Wellness
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I appreciate everyone’s response. Your responses range from hiding your glycemic status to the outright objecting to the over-reaction of the providers. I know many of you share my observation that policies should be based on medical facts and this is not being done.

I realize that my circumstance may not be shared by many. The fact that I get my dental work done at a dental school is a special case not shared widely. But a much wider group shares the fact that this issue arises whenever many medical procedures are done.

My idealized position is that diabetics’ glucose control be seen as the actual adversary and the patient and providers can instead join hands and manage the situation together. As it is now, the diabetics and the providers are in tension about who should have power.

I realize that this argument is not easily resolved. Communication is definitely needed and both sides could benefit from learning more. We need to fully appreciate the immense responsibility that providers feel and the medical providers need to update their understanding of modern glycemic control.

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23

I had this thing happen with an emergency room experience that they wanted me to stay in overnight care. They wanted to remove my pump. So putting my foot down, I demanded an endo involved. I explained my treatment plan, we talked about my numbers, we talked about how long I have been doing this and that if there was anyone in this hospital that knew my diabetes, it was me.
So, after spending time with you and knowing how well you can get your point across, this is the perfect place to do it. The reality here is people without diabetes would have work done with a 90 blood sugar and have not eaten. 90 is a perfect place for anyone to be. Maybe having a note from your doctor might help with the next visit.
I have also had to do some major training of professionals how had no real knowledge of singes.
I would push a little here. It is your care and you are helping them with their learning. These people will be moving on the be dentists who will be working with people who have diabetes.
I don’t ever remember my dentist asking if I had eaten or taken insulin. But they do ask,about my A1C.

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24

Thanks for writing about your similar experience, @Sally7. I need to moderate my emotions when this unexpectedly arises. I should assume that issue can crop up in any interaction that I have with medical professionals.

I appreciated your sense that perhaps I should push back when challenged regarding appropriate blood sugar levels during treatment. When I’m challenging policy, however, my leverage seems undermined. I agree with you, 90 seems a perfect blood sugar, whether diabetic or not.

I think the supervising faculty member, in this case, did not expect the patient to display an up-to-the-minute glucose on his watch! Since he was taking comfort in the above 100 policy, this reality challenged his administration. I think he must also have realized that the newer technologies have changed the realities of their notions of safety.

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This seems like an attractive idea. I have my next diabetes appointment soon, at the same academic institution as the dental school.

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You may also want to consider when you talk about Medical Providers if you may be conflating the actual doctor with the institution that employs the doctor if they are not one and the same. If the institution makes and enforces the rules, you may be wasting time by handing such a letter to the doctor. A discussion with the institute and their policy maker(s) may be the start to a quicker resolution.

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I agree with your distinction between medical provider and institution. I disagree, however, that anything to do with changing the policy of an institution would ever resolve quickly! :laughing:

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28

I hope I would handle it like you but it probably depends on my mood and impression of the person.

I would probably question them about the source of their information or experience on the subject.

If they are coming from position of trying to watch out for my well being/safety I would probably remain polite.

If they are instructing me on how I should manage my diabetes I would likely have very little patience for it.

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

Based on my 4 years experience I disagree. Dexcom is wonderful but it is 10-15 minutes behind my finger print numbers.

I asked him how long have you worn a Dexcom in total, he said 1 day.

I remained calm but at least on that subject consider my self the expert.

I suspect part of medical professionals on going education comes from drug reps or others advocating for their products to be used.

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29

Your dental school experience is similar to a hospital experience I had. I experienced a stroke, luckily only affected right-side peripheral vision. Quickly got to ER department in hospital with stroke expertise. They administered clot-busting drug; I recovered my perphieral vision, but they wanted to check me into the main hospital to safely introduce blood-thinner drugs. Admitting doctor interviewed me about being T1D and wrote orders.

But I soon discovered I was not allowed to manage my diabetes, at all, and they did not have any idea whatsoever how to manage my BG levels over the 4-day stay. BG remained at 200-300+. I complained but the doctor in charge refused to improve the orders.

This was my first-ever stay at a hospital where I was not allowed to manage my diabetes. Highly frustrating. Nurses were sympathetic, but unable to help me. I suspect the hospital had been sued and lost, and these draconian procedures were set up with lots of legal input. And I sympathize about having procedures to protect against lawsuits. I just think that should not interfere with competent caregiving.

I like the idea of carrying a letter from my Endo. I do know that all future planned hospitalizations will involve getting pre-approved by the hospital to allow me to manage my BG. Regarding unplanned visits, I think I will request and if necessary demand to talk to an Endo and if necessary, have that Endo talk to my Endo. If they refuse and I am able, I will check myself out and go to a better hospital.

PS At least the above hospital was competent dealing with strokes and things turned out well in that regard.

PPS The staff there had never seen a CGM. They used finger-pricks and dutifully wrote down the numbers, but the orders (written incompetently) did not tell the nurses to take any action, no matter what the results.

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30

Buy the faculty member a copy of the book “Think Like a Pancreas”. It will bring him up to date in terms of his diabetes knowledge. He probably had about 45 minutes of instruction and that was ages ago. NpH and R insulins required strict eating schedules. That’s not true anymore, and with the newer analog insulins, it isn’t necessary.

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This is exactly what worried me when I was admitted to a hospital to treat my stroke last April. Luckily for me, I was on an insulin pump and they would need my permission to disconnect if I was otherwise competent. I refused their offer to take over the insulin treatment and stories like yours confirm that I was right.

I wished that we could share in that task but you saw what they would do. Their chief goal is to avoid hypoglycemia at all costs. Running at 200-300 is malpractice in my book. That makes a person highly vulnerable to hospital infections and impairs normal healing.

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33

This school uses a staff of many faculty members and my student ends up working with a variety of supervising faculty.

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I’m curious how this works (not allowing your to manage your own blood sugar).

What happens if you have your insulin and take shots? Are they going to kick you out or wrestle it from you?

I would be OK with them testing my blood sugar at any time interval they like. I’m also happy to write down all the injections/times for their records.

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35

Crazy!
I don’t think that they will tie me up to remove my CGM or take off my pump against my will if I go into the hospital. They are welcome to test my blood glucose but I’ll inject my own insulin, thank you very much. Any medical intervention against my wishes is assault.

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I have heard stories where Dexcom sensors including transmitter are removed and thrown into hazardous waste bins.

As @Jim10 wrote, “The staff there had never seen a CGM.” there is a lot of ignorance in hospital staff.

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I think we get thrown off by the unexpected. But you can think about your next visit and response. Personally for me changing my level to a little higher wouldn’t phase me. But I don’t mind giving in on that. I do it anyway, whenever I have a doctors, dentist type appointment I like to drop, so instead of being at my preferred 95-105, I prefer to be at least at 125-135 going in. I could reduce basal beforehand, I just have preferred to handle it by increasing my BG level. It’s just easier for me.

Or you can look at your levels when you are at a 100 or above and don’t look at it again that morning so you can say it truthfully, it absolves them and you get your levels you want.

I have never ran into a dentist questioning my BG level. I would think if they had tried to say anything about my BG level, I would go to a different dentist. But I understand the unique issue you have. I probably would just increase to the 100. But if not, I would expand your range so it sounds more impressive to them. Using 70-180, you could go, I maintain a 96% TIR between 70-180 and that is considered excellent control and one of the best controlled type 1’s there is. Frankly I have been at this for __ years and am really good at it. In my case I would throw in, not once have I passed out from low blood sugar, it’s not a problem. Since no one else has said anything to you before, this might not be written in stone. Or you have a newbie that goes by the book. You could ask for a supervisor and talk to them about it and that might work, it might not if it’s actually a set rule. I ran into that with the diabetic educator here once, she is a type 1 herself. But she goes to me you have 2% under 70, we don’t really like 2%, it is acceptable but it would be better if it was a lower percent. I told her to change it to 65 instead of 70 and it would be less than 1 % under 65 and she said under 70 is considered to be low blood sugar and would not budge on that. My endo never says a thing about it, I know I mentioned it to her once about my settings are 65-160. She actually takes notes of those type of things, but she has more wiggle room to make judgements

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38

I don’t think anybody ever told me my blood sugar had to be at a certain level to have a procedure but I can’t really remember now. I always tell all doctors that I’m type 1 etc. and bg fluctuates a lot. I have a pump and dexcom around my waist so I’m not trying to hide anything, lol.

My blood sugar goes all over the place all the time no matter what I do. I remember telling my former dentist who died to be careful when I was getting something done. I reminded him that the last time he did something my blood sugar started crashing from the Novocaine which he did with this little non-needle injection thing that was cool.

But he just looked at me with this weird look and went ahead and injected a lot of it anyway- because I am diabetic I needed more, a lot of doctors have told me that their patients who have d need more pain killers etc. I needed more for a toe surgery I had too.

It all worked out OK though I never dropped really low during any procedure. If I went low I just stopped and took some juice or whatever if I was awake. Fortunately everyone has been very nice whenever I had to do anything like that.

I don’t remember what they told me when I had my colonoscopy or endoscopy, but they just kept an eye on it and things were OK. I remember discussing what I was going to do with my pump basal but I don’t remember what I did now.

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ChrisP wrote (of my hospital experience): “What happens if you have your insulin and take shots? Are they going to kick you out or wrestle it from you?”

In this one case, the nurse demanded my insulin (not my CGM), talking about hospital rules, etc. At that point, I did not know they were incompetent treating T1D. Had I known, I probably would not have given them my insulin, which would have escalated the problem and likely I’d be dealing with a doctor.

I really suspect their procedures were developed after a lawsuit. And if they had been competent with T1D, I’d have been ok with their rules. It’s just that they were not competent at that. Thankfully they dealt with my stroke quite well.

I don’t plan to be back there, but if that happens, I will not give up my insulin and will gladly escalate the discussion until it’s resolved or I check myself out.

Another thread in this forum mentioned hospitals are increasingly only allowing doctors on staff to influence the orders. That to me is a bad idea. If they fear lawsuits and my doctor has access to the facility and requests I manage my own T1D, then they are essentially protected if I screw up. (And I won’t screw up.)

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I understand exactly what the original poster went through . I just experienced the more extreme case. All my doctors are associated with one regional hospital.

I had to have a colonoscopy last month . the five-day long prep for the surgery required going far off of my normal diet . The instructions to me by my endocrinologist, the one who had prescribed my tandem pump with G6 and control IQ, was to turn off control IQ at midnight before, manually set an arbitrary basal rate half my normal and have my BG above 150 mg/dL for the procedure. The prescribed “lowered fiber” diet eliminated the few things I was eating to get my fiber level high enough to have regular bowel movements.

I knew from past procedures that if I weren’t in a pump and above 180, they’d give me insulin whether I wanted it or not and if I hadn’t intervened the last time they would have over-dosed me with double the needed correction if the target were 120 mg/dL.

As the “prep” for the last 6 hours I was supposed to have anything by mouth ending at midnight was clear liquids like regular 7up.

I had to argue with the endo and the gastro for permission to have Control IQ enabled in excercise mode to help keep me in the desired absurdly high range to help keep me above 140. The endo resisted until the diabetes educator had the pump makers trainer discuss it with her. The endo had no understanding of how Control-IQ worked.
I then had to ask what I could do with “nothing by mouth” if my BG dropped using the basal rate she prescribed. I got “permission” to sip apple juice.

I offered to have a pre-procedure meeting with someine from the gastro’s team, to explain if necessary how my pump worked and what could be done to monitor or correct my BG during the procedure if needed. They declined.

The night before the procedure I was up until 2am emptying my bowels. At 3am when I was supposed to be getting a good night’s rest before the 7:30am procedure, I needed to suspend insulin delivery for an hour and sip 8 oz of apple juice over 3 hours to get my BG above 140 and stable. The original directions would have put me in severe hypo, if not a coma.

Now I know that I’m an outlier. I’ve had zero time below range since before I started the pump, and +95% TIR, since I started, and my last A1C was 6.

If I were a poorly controlled with high A1Cs, then the surgical prep goal would have been aspirational. But the protocol I was automatically given seems designed to jeopardize those with diabetes who have been routinely managing their diabetes carefully and effectively, and risk death of those who use the latest medical technology.

It really calls into question whether those following guidelines as if they were gospel understand “first, to do no harm”.

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41

I learned over the years that fasting is my BG friend. At first it was worrisome but I soon discovered that if my basal protocol was appropriate, my glucose level was rock steady at a good level.

The situation that first got my attention was the fasting requirement for some blood tests. Providing that I didn’t snack after dinner the night before, my BG was in range with low variability.

I’ve found that fasting is the best method to quiet any blood sugar chaos if my basal is not disturbed. Infections and basal insulin delivery interruptions are exceptions.

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