Endo burn-out

1

After 27 years of Type 1 diabetes and countless appointments with many endocrinologists, I’m beginning to doubt whether the result justifies the effort. Every three month’s it’s the same drill: get blood drawn for lab tests, print seven days of CGM curves, then show up for my 15 minutes of face-time with the doctor.

I think that the 15-minute appointment is a joke. If I carefully prepare my list of issues, he rarely has time to address them all. He looks at seven days of glucose numbers but I don’t see how he can even begin to assess the state of my metabolism, much less make any useful recommendations.

When I started on the DexCom CGM, I brought my laptop to show him several key charts and graphs that I was using to inform my day-to-day decisions. He was not interested. In fact, any data that I give him must be printed.

I feel that he’s not making use of all the data available from the pump, CGM, and finger-stick meter. To just look at seven days of CGM curves leaves out a great deal of available data. It’s like looking at an extensive room through a keyhole. What you see is reality but reveals little of the overall truth.

With the economic realities of the modern practice of medicine, there’s no way any doctor could spend the time required to consider a wide swath of diabetic data. Even if he were interested, there’s no way he could give any one patient that kind of attention.

When my doctor starts to make recommendations regarding my pump settings I feel that he’s relying on an incomplete understanding of what’s going on with my metabolic life. In fact, I don’t respect much of what he offers because I don’t feel he’s done his homework!

I’m starting to think that I’d prefer a more aloof practitioner that will just write the needed prescriptions and accept my primary role. After having lived with Type 1 diabetes for so long, I’m beginning to trust my judgment over my doctor’s. I know they have more training but there’s no way they can fully appreciate what it’s like to live with this disease.

Every time I go in now, I’m finding myself more cynical about the whole process. Sometimes I think that he’s resigned himself to treating the pantheon of maladies that plague diabetics and doesn’t believe that diabetics can ever reach “near normal” blood glucose values.

Maybe that’s what bothers me the most. I think he’s given up on creating success stories and has settled for managing the brutal complications that most diabetics face in their lifetime.

This is my fifth endocrinologist in 27 years. I don’t think that my idea of ideal care exists. I’m considering just accepting the reality of it, visit the doc two or three times a year and reconcile with the fact that I am the best doctor for me.

2

Well I have not had diabetes as long but I do share your frustrations. I am so sick and tired of trying to convince a doctor to be interested in me and not diabetic patient 437. Endo visits are like bad dates with someone you thought you would like, just disappointing at times…I dont think they schedule to give that individual time. You are right there is not enough time to even to get to know my name in 15 mins let alone give me in depth treatment for my conditions. I have always came in prepared as you with my list of concerns and everything but leave with no answers. I actually found more information from Googling my symptoms and researching myself than I have from any doctor. Its like this you have to remember doctors are people who are working to make a profit. They give basic knowledge and write prescriptions, thats all…the rest is up to you. After listening to the doctors give me wrong advice nearly killed me, as they do to others often, I stop trusting them more than I trusted myself. For the past few years I have been my own doctor who consults with others…I suggest you do the same

3

Maybe it is the 27 year burnout but I am cynical about the whole process also. I tend to not share my readings with doctors and make sure I erase my meter the morning of an appointment. I go thru the process to get scripts and I don’t really look for answers from them anymore – didn’t get any when I was so why bother now!

4

Rye - Thanks for the reply. I think you’re right. We must trust our own counsel first, then let other “experts” weigh-in. At my next appointment, I think instead of going through the motions, I’m not going to bring any data with me. His judgements on what little data he requires, I don’t respect. Why go through the charade?

5

Kelly - I suspected that many others are as burnt out as me! Thanks for your note.

6

Exactly!!! I decided I may have a gluten allergy that is causing my digestive problems and my body to retain massive fluids so I requested it to be added to my bloodwork. I have been telling these same symptoms that could be linked to the gluten allergy to 2 different doctors and never got an answer. Not to mention there are many type 1 diabetics who also have the gluten allergy. Even if it is not the cause at least I know I am getting closer than just accepting it because they do not want to look into it…I told my endo in my last visit how I go to bed with normal numbers and wake up in the 200’s he said very quickly it was what I was eating. I was like this is not my first rodeo, I know not to eat certain carbs at night. Then I asked do restless sleep cause high numbers then he says, well yeah that could be the problem. If I didnt trust it may be something else and correct him I would think its something I was eating…Trust your own body!!!

7

I look more for “manageability” in doctors. I’d seen a GP for a while before I requested a pump and he was like “great! you need to see the endo” and I could pick from two. I went w/ young/ Indian over the old, white head of the department guy reasoning mostly that she’d be easier to get into b/c she hadn’t been there as long. She had really amazing math skills and was very helpful and generally seemed good, but always keen on not running too low or anything like that. We moved and the big clinic had zero docs in their fancy office, the docs are in the next town but in the wrong direction so I found another one who told me recently “there’s nothing I can tell you”. Afterwards, I was like “damn, I should have gotten a refund…” but BCBS would hunt me down so why bother?

I’m not sure I understand erasing you meter Kelly? What are they going to do?

8

I discovered the gluten by accident when I quit eating bread for 2 months, my problems went away. They started up again when I started eating it. I did not bother to ask for the testing because I knew the doctor I had at the time would dismiss it. I wish I had the money to pay for some of these tests myself and I would just do that!

9

I haven’t been at this long (3 years) & have come to the same conclusion. Been through three endos, which is all there are in my area. I’ve learned more on Tu D than from endos & a CDE. I go to my PCP now. Fortunately, he’s a nice, caring man. His 12 year old was recently diagnosed T1, so he’s keeping up with diabetes ed. All I need are scripts & blood tests & this saves me the frustration of dealing with yet another arrogant endo.

10

I just don’t like to share my readings with them - if it is erased, they can’t see them. I can have 500 good readings & 1 bad and they always zero in on the one bad and lecture about that. I read about people that took their “golden meter” to the doctors. They had a meter with all good readings they shared with their doctor and a “real” one for highs & lows. I just have one meter but won’t share!

11

T1 is such a uniquely self-managed disease, so I don’t expect much. I just want my scrips, so my solution is to go in no more than 2x a year and with those in-office A1C tests, I can avoid going to the lab as well.

12

Rye - I don’t understand how an endo can make any kind of judgment about your overnight numbers with considering the quality, quantity, and timing of any food consumed within four hours of your bedtime. Stress, exercise duration/intensity, and for women the timing of their monthly cycle are just a few factors that need consideration. And you’re right, any allergies to food should also be factored in.

By the way, my daughter eliminated gluten from her diet for the last several months. She tells me that she feels better.

13

Why though? I send them like 20 pages of stuff, all the reports and, most of the time, anything they point out, I have some saga about it. They usually look for trends but I’ve sort of moved in that direction so things are always changing anyway. I don’t see a risk in sending them stuff.

14

Terry, I’ve been there. Completely. Ever since I decided to change my diet to treat my type 1 two years back, I have become more and more frustrated with my doctor. I get the same busy office, 45 minutes waiting time past my appt. only to see the good dr. for 15 minutes and go over last week’s numbers. I too, arrived with 3 weeks of hand-written logs showing my sugars, injecitons, meals, exercise, etc. I want to discuss and analyze. She wanted to prescribe.

I dreaded going, even prolonging appointments as long as possible, until a prescription would have to be renewed. Shortly after I changed my diet I went off the pump and back to injections. I had a really difficult transition, it seemed impossible to figure out the right amount of lantus to take as my basal. My A1C jumped to an all time high of 7.3%.

My husband worried that I was so frustrated, I was in tears on a daily basis, at a loss with what to do, and he actually picked up the phone and called Dr. Bernstein’s office. He talked to Dr. Bernstein himself (who knew!) who told him that all the info to treat myself was in the book… that by paying closer and closer attention and maybe re-reading some chapters, that I would be able to get my numbers back down all by myself. Going to see him was so expensive (travel and dr. costs) that it just wasn’t an option for us. Knowing that my husband talked to him, and that he was confident I could figure it out, inspired me. It motivated me to be my own doctor.

Because my original endo was okay with my higher than desired numbers, I told her I was trying to get pregnant so that I could be referred to the high-risk endocrinologist. It wasn’t a total lie - I do want kids eventually :slight_smile: They held me to better standards and helped me get my numbers down a bit further. It still wasn’t great though. My A1C was in the 6s and I wanted it in the 5s or lower. They had put me on NPH which helped some, but turned out to be a bit erratic.

I eventually had to go back to my original endo because I wasn’t pregnant yet, and she and I came to one simple agreement - that my pre-meal glucose should be 85. This was after I was in tears in her office, practically screaming that SHE’s not the diabetic, and that I want to do whatever I can to have the option of a long, healthy life without diabetes complications. I think the tears did her in. I was stubborn, but not rude. I was desperate.

I also learned from this appointment that she sees very dramatic, horribly controlled diabetics on a daily basis. The nurse there told me just that day that two patients had been in with glucose in the 500s, and one patient was whisked off to the ER with a glucose when she came in of 1300. I didn’t even know that number was possible. I learned the doctors are more concerned about keeping you out of the hospital and out of danger TODAY, not so much long-term. I think the modern diet of “whole grains” and “low fat” so contributes to this poor control. So, me whining about my 150 readings just didn’t quite set the same alarms off for her as it did for me. But, I had to let her know that it was significant to ME. She didn’t comment on my ketogenic diet, just that one simple goal of pre-meal 85 mg/dl. Knowing that we finally had something in common allowed me to work with her further, and now that is all I concentrate on. My last A1C was much better (5.6), and thinking the next one will be even better.

I used to call the office every time I made an adjustment, but now I know how to vary my doses based on my sensitivity, workout schedule, time of the month, etc. We will always have to see doctors… the insurance companies make sure of that, but I think no one will ever be as invested in your own health as you. Use the doctors for what you can, and other books and resources (like this forum!) for making further progress. Thanks for listening :slight_smile:

15

Hi Rye - keep in mind that gluten allergies don’t always show up in lab work. Turns out, every human is irritated by gluten and better off without it. Check out the paleo diet and Dr. Richard Bernstein’s recommended diet for more info.

16

Don – I think that’s what I’m going to do, just see the endo twice per year and get the scripts I need. I don’t mind going to the lab. At least you can keep track of the lipid profiles, liver and kidney numbers, as well as the A1c. I can read the lab reports as well as the doctor can. There’s plenty of info on the internet.

17

I agree Gerri, TuD is a great resource. I’ve learned more here than in any endo office!

18

I have extra curve balls because of the gastropareis and they usually don’t get that. Even when I was sitting there proud of my readings, they managed to find something wrong. Their comments were not trying to help. I got tired of the criticism so just don’t share anything.

19

About gluten–there is no point in taking a test if you haven’t been eating gluten, because it will just show negative. I’ve been told that you need to be on gluten for at least two weeks before getting an accurate test result. I started getting symptoms of Celiac Disease about the same time that I was diagnosed with diabetes (in 1993), but I now realize I must have had Celiac all my life. As it happens, I never had an official test for the Celiac. Some days I feel quite burned out, but even so I try to listen for helpful hints, even from medical folks who seem to be clueless. I figure I can use all the help I can get.

20

Hmm, I do sort of get the sense that they are tired of dealing w/ people w/ the “uncontrolled” (ICD-9…) versions of or perhaps attitudes about diabetes. Stuff like conversations people have at the window where they don’t seem to think of success as an option. I saw one guy very briefly who had a ridiculously pompous attitude but that was a really long time ago. I would rather have strategic conversations about ratios or rates than tactical conversations about “why did you have this low in the am?” “B/C I ran 8 miles in 74 minutes and celebratex with a quart of gin” is as incomprehensible to them as somebody w/ a 1300 BG. Part of me wants to go to the “big diabetes clinic” nearby and see if I can get something more out of it than I do out of my little doc but she wrote BCBS a totally snide letter (after my own heart…) about the test strips. Why mess with that?