Diabetes police and diabetes criminals

Mental and Emotional Wellness
21

I’ve had some doozies. My a1c is consistently between 6-7.0 and I get labeled “uncontrolled” at almost every single doctor. Gyno, GP, Dentist, even at my Endo’s office and they know how hard I work. That’s not a cool label. I know it’s an insurance label. They use it to charge more for appointments, but it really bothers me.

I had an OB who was really strict on me. She wanted my a1c to be 5.4 or below, like lower than most normal pregnant people and would complain about how I didn’t take care of myself, tried to pass me off to a Perinatologist/RE who sent me right back because I didn’t need him. I saw my endocrinologist weekly from 20 weeks on to adjust my basal rates. They said I was fine and my OB was spazzy. I got a CGM to help with quickly dropping lows that popped up with both pregnancies. My OB scared me both times about suspected heart problems because I was letting the babies get too much sugar. They are both perfectly healthy.

My endocrinologist here I’ve seen 3 times and am now transferring to another office. They were trying to get me to raise my a1c to ward off 4% of CGM readings at 60-80. It was ridiculous, especially considering the CGM often takes up to 45 minutes to catch up to whatever glucose treatment was given to treat a low and so the percentage of time is really 1-2% minor low. They also strongly asked me to call them to change rates and when I did this past week they only adjusted my basal rates, even though I’ve been running in auto-mode 90% of the time since I started being seen by them.

I had an endocrinologist in Birmingham that I only saw 2 times. She complained that I wasn’t doing well enough and her fiance stayed awake until his blood glucose came up and he verified a normal level via glucose test when he had a nighttime low. So stayed up for at least a half hour when having a night time low. WTH? Why can I not drink some OJ and go back to sleep if the low was in the 60-70’s? I’m wearing a pump with an auto-stop anyway. And it keeps beeping until the sensor is back to normal. That was not cool at all. Don’t compare patients to your family member with diabetes.

I’ve also had a boss do that. I went low on a trip and had to interrupt a sales appointment because the schedule wasn’t allowing me to eat when/how I normally do. He was furious and said I didn’t take care of myself and his brother would never have gone low during a meeting. So I found a new job and quit. I’m not dealing with someone who doesn’t have diabetes tell me what I’m doing wrong.

I loved my pediatric endocrinologist. I was sad to have moved away from OKC when I turned 22. I’ve loved most of my GPs who tell me I’m knowledgeable. I’ve loved all my dieticians and most of my CDEs. They are fabulous and empathetic and in the trenches knowledgeable.

  • I don’t like when doctors label “uncontrolled.” Because I’m not a teen who is just running high for the hell of it.
  • I don’t like being told a family member or a patient with gestational diabetes does it better than me. YDMV. This is a complicated, individual disease which comes with many grades of difficulty and variance. Also there are multiple kinds of diabetes, don’t think you know it all because of observing someone else. Thank you very much.
  • I don’t like being told to “relax” and run high in order to not experience numbers under 80. That’s just idiotic and is treating the disease for your anxiety or practice benefit…NOT for my long-term health.
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22

I guess I’m lucky because I’ve had a health care team (endo and CDE) that foster patient empowerment. They provide education and advice, but no dictatorial instructions.

I saw my CDE last month. I’ve been with her for over 30 years and have developed a friendship. The conversation drifted into the patient care philosophy of other endos in the organization. Some of them instruct their patients to let her/him make all the care decisions. Changing basals and carb ratios - and almost everything else - is dictated by the endo. My CDE wondered how any patient could live a normal life and gain control of the disease under those circumstances. Amen.

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23

I was so glad to see this thread as I was so annoyed at my last endo appointment a couple of weeks ago. My A1c’s are in the 5s and low 6s for the most part. I do have peaks and valleys with my blood sugar that I try to get some input on at the appointments, but for the most part, I’m usually just dismissed.

I knew I was in for trouble at this appointment when my blood tested at an A1c of 5.4. When he walked into the exam room, he started to scold me and say he can’t help me anymore. He grabs my CGM and started to say I need to share data with him. He wants my A1c at least at 7. I explained to him that I try to stay closer to normal levels and tried to have a discussion, but it was futile. My school of thought with my own health doesn’t seem to matter, and to make matters even worse, I have my doctorate in a biological field so I’m not the idiot he thinks I am. I considered walking out during my scolding, but I needed a prescription.

He then said that his A1c wouldn’t be 5.4, and I realized that’s the issue with some doctors. Not being diabetic, they have no clue. I would love my endo to be a type 1 diabetic, because there’s just a lack of understanding if you don’t live with this 24/7.

The only good thing about this appointment is that I’m moving next month so I’ll never have to see him again. A doctor should not scold any patient regardless of his or her thoughts.

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@drrps3 We all do what we need to do :slight_smile: to stay alive. I’m glad you hung in there, even though the scolding wasn’t at all necessary! I wonder how many physcians, pas, rns, cdes,… know this.

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I feel your pain and anguish @drrps3

Both my General Practitioner and Endo have been on my case for a couple of years about A1C’s being “dangerously low”. The numbers they “reference” are anything much under 6.2.

When they dropped into the 5-ish range they were alarmed, and they flipped out when I turned a sub-5 A1C 6 months ago. My endo told me he’d only ever had one T1 patient with an A1C under 5, and he was obsessed with his low BG and had died alone after a hypoglycemic event.

So much for the pat on the back or “nice work, how do you manage your control?”.

I had blood drawn today and I’m expecting an after hours call later this week from one of the 2 docs expressing horror and hysteria over the latest results :stuck_out_tongue_closed_eyes:

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26

Interesting, you do not get your A1C results during your visit? For the past 2-3 years, my labs are all taken right after I sign in for my appointment and results are available within maximum 1/2 hour after arrival. Gone are the days to have to wait a few days to receive A1C.

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@CJ114 - Haha :joy: :joy: … surely you jest?

This is Canada, they don’t do it that way.

Either you get your blood drawn a good week prior to seeing your doc, and depending on their mood they “might” share the results with you, or you have blood drawn post-appointment, in which case you’ll never hear back unless something is wrong.

In the event of the latter (one or more tests being out of range) they will never disclose over phone what the issue is, rather they’ll send you another requisition and have you do additional blood work.

As often as not there is never any communication between doctor and patient about the actual results.

Even when getting biopsied for possible cancer, the samples are sent away to the “Main lab” in a different city, and despite being promised a contact to advise of results, if it’s negative you’ll never hear anything. Rather sadistic if you ask me

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28

Ok, I see I have fully lost the right to complain about any inefficiencies at my clinic.:zipper_mouth_face:

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29

Yeah, that is kinda a bummer. I have all my labs drawn a few days before my appointment and have them in my chart online the next day. I also get a copy when I see him. And I also to help keep things moving email him a week before with things I’d like to talk about so he has time to research if it’s one of my crazy out of the norm ideas. It helps keep things moving and I get an answer right then verses that line of let me look into it and I’ll get back to you. And thank of course we both forget about it🙁

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30

I see my endo through telemedicine which is great because otherwise the nearest endo is an hour and a half away and they all have 6 month plus wait list for appointments.

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31

Any relationship profits from good communication. Problems may arise, however, when either or both partners are not equally invested in making the relationship work to its fullest advantage. Simplistic, yes, but that’s what I’m seeing in a lot of these responses. Do clinicians have enormous time pressures? Yes. Do patients have valid concerns about not being listened to? Absolutely. So, here’s my piece of the puzzle.

Most of my doctor choices have been driven by my health insurance. I was first diagnosed in a hospital, after being brought in unconscious and spending the night in the emergency room. I was 36 years old and had an infant son. I had no primary physician at the time. Most of my own doctor visits up to that point had been gyn. check-ups and pregnancy visits. The doctor who treated me in the ER wasn’t taking new patients, but a friend of his from medical school was, and he accepted my insurance. Ta-da!! A relationship was born. He was an internist, and the only doctor to treat my diabetes for the next 16 years. I had HMO policies from the first time one was available to me until I retired 5 years ago. So, I’ve always had at least a primary physician and now one or more specialists.

Here’s the communication breakdown:

  1. Internist, mentioned above. Very good communication, but infrequent, though I did see him 3-4 times a year. Wonderful nurses. Easy to reach, until his practice hired a receptionist/gatekeeper. We talked about seeing an endocrinologist, but pump technology wasn’t deep into the market yet in the 80s and 90s.
  2. After moving with my kids back to Georgia, I found a practice not far from where I lived that listed their specialties as internal medicine and pediatrics. Bingo! They had just hired a new doctor, so he became my doctor. He’s a DO, and has been my primary even since. The practice website uses portal technology, so I can now ask questions and/or get information between visits. Doctor #2 has been a good listener, and has, as one specialist put it, allowed me to make some creative treatment decisions. These were based on my own research. I was an academic librarian for 35 years, and I would sometimes come to my appointments with copies of articles from medical journals and ask, “Will this work for me?” My condition was always my go-to if I needed a sample search topic. When we found something that would work AND that my insurance covered, we gave it at least a trial. At that point, I was on MDIs, combining NPH and Regular.
  3. Doctor #2 eventually referred me to an endocrinologist, because the approaches we were using weren’t getting my A1c back where it needed to be, so we decided to go with a pump. The first endo to treat me was affiliated with the local Big Medical School. I saw him on my first visit, and he told me then that I should consider appointments with his PA the same as appointments with him. Omnipod was the new thing in insulin pumps at the time, and said PA was a big proponent and user. Only time I’ve ever been treated by another diabetic. It was my first pump, and I used it until I aged into Medicare. Said PA was also ex-Army, and brooked little to no dissent. In addition, the physician was head of BMS’s endocrinology department – clinical, teaching and administrative duties. Time was always of the essence. The department itself was impossible to get in touch with. They never answered the phone. Communication was negligible. I talked to the tech reps at Insulet more than I did to the endo’s office. After a few years of this, I asked my primary to refer me to someone else, please.
    Doctor #4, my current endo. Both knowledgeable and approachable. I can reach the office by phone or e-mail. I am seen by the doctor or her PA every 90 days. Communication is great. Everyone at the office is a pro, and it shows, and they are almost all very easy to talk to. Their office website uses portal technology; e-mails are checked several times a day, and response rate is good. Handy when you have a problem with a prescription for your medical device and need a fast response. Everyone but the office assistant is unfailingly polite and open to meaningful conversation; the OA is, well, brusque.

It’s been a progression. Have I ever been treated like a criminal? Never by a doctor, but I haven’t been treated exclusively by doctors. There have been some PAs and office assistants that I’ve wanted to smack upside the head, but I only have very rare contact with the last of those.

Now, what has been the upshot for me, health-wise? That’s been a progression, too. Up until two years ago, the best A1c I was getting was around 7.5, sometimes lower, sometimes higher. After Doctor #1, I have never had a doctor who thought that was good enough, and all of them helped me grapple with overnight hypoglycemia. If I could get my A1c down to 5, my doctors would be ecstatic.

So, where am I today? 6.7-6.9, for about the last year an a half. Did something major happen in the interim? Yes, I had all my teeth pulled and got dentures. I had been told by a resident in periodontology at BMS that getting dentures might help make my blood glucose easier to manage, because it would eliminate ongoing gum infections. I relayed this information to my doctors, but the response was kind of tepid. It wasn’t their specialty, so maybe understandable. I made the move to dentures on my own, and my diabetes has gotten better.

Doctors are the experts at treatment options, and they’re the only ones who can prescribe. However, we are the experts at what’s happening to our health. Appointments ought to be conversations between equals. Is it always our fault that they sometimes aren’t? Hell to the No.

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32

I have rarely felt this in 35 years and approximately 140 diabetes appointments. My best tactic to manage this is to lower my expectations. I wish I could write my own Rx’s.

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33

My biggest gripe is the lack of respect for the patient on the part of HCP’s. It seems as though they believe that if your are Dx’d with diabetes (of any type) you MUST be dx’d with 2 co-morbidities: stupid and lazy. I had one Endo tell me (and I quote) that "…it was impossible for someone like me to have such good labs. Fortuntely, I had CG<M printouts (paying for my Dexcom out of pocket) to prove him wrong. I brought 4 months of records. I work very hard and am diligent about my D mgt. I did promise I would bring my Mensa membership card to the next appt. But there wasn’t a next appt, I still had to stay in that practice (health plan) but I could see someone else.

I had been seeing a wonderful CDE there. And she shared with me that the Endo’s were giving her a hard time because I obviously was having too many lows in order to have A1C’s in the mid-5’ for so long. She invited them to our appts, but they didn’t want to meet me. The Endo’s also threatened to take my pump from me, because I was doing so well (that makes no sense).

I have to say I got spoiled living in San Diego in terms of T1D. I went to the big SD TCOYD conferences every year, I also got to attend the T1D special events, got to know Steve Edelman, Bill Polonsky as ell as John Walsh. If it wouldn’t be insurance fraud for me to fly there for my care, I would.

I guess my point is we has PWD’s ,esepecially those who have living and thriving with t1D for decades deserve respect, should have input on the decision making. The above mentioned Endork once took my pump (supposedly for downloading) gave it back to me and I couldn’t get below 150. I checked my settings, he had changed them!

There are times (a lot of them) that I think the only value of some of the HCP’s is Rx’s.

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34

I whole-heartedly agree. I fear, however, that proactive diabetes patients like you and me are few. Clinicians are worn down by people with diabetes who do not manage well. When we walk into the exam room, the doc’s prejudice is almost impossible to cut through. They have been habituated to patients who see scary lows several times per week, live with permanent hyperglycemia, or cycle between those two states.

It’s easy for me to understand that the permanent hyperglycemia group is much easier on the doc’s nerves. I get that psychology but I wish the practitioners would permit themselves to detect and appreciate patients with a high time in range and low glucose variability. Perhaps celebrating that success with this type of patient would alleviate their white-knuckle perception of typical patient glucose management.

Some of us know what we are doing and we’d love to feel respect from the doctor and also share some hard-earned glucose control wisdom. I really think that endocrinologists suffer a jaundiced view of their diabetic patients so much so that they can’t even sense that some of their patients are not like the others.

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I have an idea or two. Create an Endo practice specific patient support group. It would probably be much like the DOC, but in person, and we may know of ways to get around practice and/or health plan roadblocks. Ii know that providing my pump and CGM printed reports assured me that my pump settings wouldn’t be changed. And like you said, HCP’s should enjoy those patients who are doing well, ask for our ways of success. I recall sharing with my beloved Endo in San Diego that one of the tricks I use is to remind me of my experience at my 30th college reunion. Because I took care of myself - I looked great (especially worthwhile cuz I looked better than the “mean girls” group) Yeah it is shallow, but it works and I have good labs as a result. (The end justifies the means?) Anyway, it got to the point with this Endo that he knew I would take the entire day off for my first thing in the morning appt. It was hard to get time off, so I would schedule everything on that Endo appt day. Several times he would call me the evening before. He had looked at his appt schedule and there were some hard to deal with patients. He would ask me to be the last patient, so his day ended on an up note - and I often brought him a macchiatto as well!

His pride in me only motivated me to keep working hard, keep learning, and share what I learned (like in the DOC) with him.

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36

I like you were, am very blessed to live in the San Diego area where are many doctors to choose from. I have had some really great ones over the years here!
And there is a support group at the hospital my doctors are at but I must say, there are not many who attend. And the ones who do are the ones who are working hard/interested in new ideas.
I think many doctors have that mind set that people with diabetes just don’t try. And this is where the lack of communication comes in. I think most people with diabetes want to make it work, they just have so many things blocking it. So if they can have a conversation about what is making it so hard, things might move in a different path. Is it money, time, job, family, fear, lack of training, past experiences and on and on it goes.
I will say, I love the fact that your one doctor wanted you to be the last patient to end on a high note! It is so great to get the acknowledgement of all your hard work. My doctor sees me first thing in the morning(I hate late rush hour travel), so maybe I am a great way to start the day! My last time in, he said he really had nothing to say, suggest or add! And that maybe seeing each other every 3-4 months is kind of useless. Will probably be going to 6-8 soon!
So I guess my frustration with the doctor/patient relationships is really all about communication or the lack of. Sure wish we could have longer with our doctors to be able to open that line of communication. I

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37

I just wanted to add an update. I have finally found a doctor that I really like who does all of the worrying and checking up with none of the judgement. He’s a high risk obstetrician lol. I was SO worried about this doctor because I didn’t want to be judged while hormonal and pregnant, but he is amazing! A bit too overly cautious IMO (appointments every 2 weeks for 9 months seems excessive to me), but that’s okay because he’s such a nice, charming, positive guy that I dont mind seeing him as much, as I normally hate doctors appointments. In fact, everyone at the high risk clinic has impressed me so far, so I can finally say I found a doctor who I approve of, and it came at just the right time. I wish it had happened sooner, but I wouldn’t be me if I hadn’t had those experiences. Yay for being a part of the process!

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38

Alright. I’m gonna post this again. Good advice on how to deal with people who ABSOLUTELY cannot respect personal boundaries.

Click here. Or, here. Or, here.

39

My second pregnancy was after my T1D diagnosis. I suspect that the first one was the reason for it happening in the first place, but this was 30 years ago, and what is known about diabetes has changed a great deal in the interim. At any rate, my experience at the time was that appointments every two weeks were the norm. Hormone fluctuations play havoc with bg maintenance, and toward the end of the pregnancy can be dangerous. This graph corresponds pretty closely with the advice I was given during my diabetic pregnancy.

image

I had two doctors, one to treat the diabetes and one for the pregnancy, and I saw one or the other at least every two weeks, sometimes more frequently. I also had a c-section at 37 weeks, to avoid dealing with the insulin drop-off after that point.

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40

More patients need to start working in the field themselves.