Patient Rights vs office policy

I see a local Endo. She is truly unhelpful (cut all basal and bolus by 30%. I take less than 15u total per day, so I’d be in DKA within days.) She hates that I have A1Cs at 5.8 (Too many lows. You’ll wake up low and paralyzed.) Her bedside manner is awful, hurtful. All I really need is someone to write scripts for pump supplies. She has threatened to stop if I don’t get the A1C up to 7. It’s not happening. I get low, but it’s fixable. All my years of T1, I know a bit.

Tried to switch to her partner today. Not allowed. Who is the customer patient? ME! I should have the choice. Just not right. She doesn’t like me and I don’t like her. Don’t I have rights as a patient?

So, looking for another new Endo. Again.

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Get you a good PCP who will handle. That’s what I do. Never had good luck with endos.


I was going to suggest the same thing. I’ve had to change endos this year, too, because my old endo retired. (He thinks his kids and grandkids are more important than ME! :wink:slight_smile:). Tried two - one was “too traditional” for me, the other, though more progressive, is harping on things that are not critical to me – neither are quite willing to accept my last endo’s Dx as T1 or LADA – and neither is interested in testing for it. OTOH, so far, they’d both be willing to “support my habits” - in terms of writing the scripts I need even when it means a fight with my insurance company.

Still… When I had a physical at my PCP’s office, he made the offer to take over being my “prescription pad,” if I’m not happy with one of these guys. He admits that I know more about diabetes and, more specifically, MY diabetes than he ever expects to know, but will let me drive my care plan, as it’s been successful that way, so far. The only reason I haven’t just gone with that plan yet is that I keep hoping that some endo might just know something important that I do not! – Isn’t that why we pay for their “expertise?”


Get yourself a new one. I assume you have been T1 for a while. Eventually, you get things figured out completely for yourself, and the only purpose for an endo is to write you prescriptions.

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Almost every low is fixable faster than most highs. You do know a bit, a good bit about your metabolism. You live with the sum total of many decisions you make, all day, every day. Your ill-mannered endo sees you for maybe 30 minutes four times per year and thinks just because she has a medical credential that she knows better than you.

Do you use a CGM? It’s a good tool to treat hypoglycemia hyper-phobia in the white coat class.

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I love my PCP. Been seeing him for 25+ years. I prescribes all meds…including insulin and test strips. He won’t do pump supplies. Ill try again on that front.

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Nearly 55 years as a T1, so I get it. I have tried a bunch of Endos in the last ten years, including a CDE i thought highly of, but she lost my trust in a blame and shame episode.

Really, really frustrated right now.

Gave up the CGM when Enlite was a total failure for me. Much happier, more relaxed.

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Hi Sue -

Sorry you’re having a hard time with the white coats. If your PCP is willing to prescribe everything but pump supplies, perhaps you can ask him to handle prescriptions on an interim basis while you look for a new Endo. The might not be comfortable taking over forever but even writing a six month prescription for supplies would make it much easier to leave the Endork behind.



If you ever have the inclination and opportunity to try a CGM again, you may feel differently about the Dexcom system. You’re not alone in your antipathy towards the CGM. According to the T1D Exchange, only 9.9% of of its T1D database use CGM. Now I know it’s beyond the economic reach of a large slice of non-users but I think many people like you don’t want a “tool” that adds to their overall burden.


I understand the sentiment, particularly in the context of what started this thread, but that’s a tough indictment of a profession in which there are at least a few excellent practitioners who can discuss the subject of diabetes mellitus in the context of a specific person’s experience, overall health and needs. I do also understand the weird scrip environment we live in, where an endo, any endo, is sometimes needed to check off some Pharm Benefit Mgr’s box. So for the endos who are learning and sharing with their patients, here’s a hat tip to them.


In Australia, one only needs a certificate for subsidised pump supplies (once). That must be done by an endo, and the letter for a new pump must be done by an endo every 4-5 years. Other than that, GPs can do all scripts, thankfully. CGMS are funded personally, and Libre (my choice) doesn’t need a clinician to approve it.

I have had enormous issues with endos over the years, so only see one when it’s time for a new pump. My rheumatologist gives me blood forms for everything under the sun, and posts me my results. I have so much more trust in him than in any endo I’ve ever seen.

Endos are never satisfied. At my last visit I was told I was insulin resistant (on less than 30u a day with an HbA1c of 5.7), because I have a high BMI. I weigh a lot, but am very short, compact and strong. My body fat is not actually higher than most average sized women. I wear average sized clothing. FFS! I train hard 7-8 hours a week!

I wish endos would realise that their role is to assist, not alienate.


You are right. I should not throw them all under the bus. Certainly there are good ones who are able to relate to each patient’s needs on an individual level. And who communicate well, and don’t talk down to them, or chastise them.

Those endos do exist.

Unfortunately, from comments I have seen, and from my many years, those seem to be somewhat hard to find.

I’m sure they’re out there. Just had an appointment with my PCP, and she asked me how my first referral to the endo was. When I told her how unhelpful, dismissive, and rude the Endo was, my doc said: “well, sorry about that. At least I know not to send anyone else to her!”

It’s ridiculous that there is only one endocrinologist in the entire northern half of my state (next closest is a 7 hour drive or $400 flight). And, as my luck would have it, she’s one of the “ADA Orthodoxy” crowd (i.e., “get your A1c up to 7.0!”). Ah well. Here’s to everyone finding one of the good ones…

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My PCP is a great guy. On vacation, he contacted me to say that he agrees with and if I can provide specific information, he will scrip my pump supplies annually.

Considering a Dexcom…once they’re comparable with Android phones.


Dexcom is now compatible with Android phones. I don’t use an Android phone but I remember reading that the compatibility is not with 100% of Android phones.

Glad to read your PCP doctor is kindly helping you with your scrip needs.

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I know I refused to go back to my first endo after 2 visits (he was a jerk and wanted me back on medications that had made me sick before) and my Dr at the time didn’t know that much about Diabetes,. So I switched to an Internist who helped a lot more and prescribed what I needed.

As soon as our group hired a new endo she sent me to her right away. She has been the best!!!
A wonderful Endo that is extremely helpful when needed. It sounds like I hit the jackpot!!!

By the way, at least once you have a good endo they will teach you the tools you need to help control your BG levels…

Ihad just about the exact same problem. One Endo even had the b**ls to say “…it is impossible for someone like you - referring tome - to have such good labs.” Can you get your hands on a CGM? While my health plan wouldn’t cover CGM, I found it so useful from my former health plan that I continued with it,paying out of pocket.Anyway, you can imagine the Endork’s face when I brought out my Dexcom printout showing that my lows were few and not all that drastic. I then switched ENdo’s to a NP CDE - who was great, and gave me the respect I deserved…

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about CGMs I have used the dexcom and while wonderful, I prefer the freestyle libre because it involves less maintenance. You put it on and it lasts for two weeks. You don’t do any finger pricks to calibrate it.

I know that it does not have the low and high alarms and the sharing of results with loved ones and probably other things. But as a step up from finger pricks, it is worth it for me. I can test a 100 times a day for the same price as once a day. I personally have only once had a discrepancy between finger pricks and libre scan. I was 90 on the libre scan and 50 on the finger prick. Otherwise it is always accurate. I sometimes fingerprick and compare - to use up the strips I have before they expire.

I am sorry about the Endo situation. I’ve been there and am now lucky to have a smart cooperative Endo who asks questions and listens and is willing to try things. But I had to give up my beloved smart cooperative nurse in the process :frowning: because they work in teams where I am.

Also, I don’t understand how they can justify refusing that you see a different Endo. That seems so 19th century and a downright refusal of your civil rights (well to me). How about if you just phone up and make an appointment with the other Endo? If the secretary is hesitant and the endos consult on different days, you could say that your schedule no longer suits your old endo’s timetable. I did that once. It worked, but the new one wasn’t much good either LOL. But that was years ago.

whatever happens, best of luck

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I had essentially the same experience, except WITH a CGM: One endo told me that I *must" be “burnt-out type 2” (instead of T1 or LADA) because “a Type 1 can’t have numbers like yours.” The other endo didn’t even consider the Dx, but told me that the CGM must be wrong and wanted 2-3 weeks of manual logs from me to verify that I wasn’t having the lows the CGM said I was not having…

Doctors need to understand that the PATIENT is the center of the healthcare plan and, by necessity, must be a key member of the team. (In fact, I think the question should not be patient rights vs. office policy, but Doctors rights, vs. patient demands!)