How do you use your endocrinologist visit?

Woah woah woah guys, calm down. All this insulin stacking and somebody’s gonna need a snack… :wink:

I’m only about 6 months into the whole “actually trying to manage my disease” game myself and I think my endo has mostly (but not fully) accepted the change that has occured between us.

At this point I do like to have my endo do some data analysis with me, mostly to see if he’s got any unique and interesting suggestions for me. Sometimes he does offer things I hadn’t thought of or maybe wouldn’t have done on my own. For example, a few months ago we jacked my nighttime basals way up – my logic had me thinking that there must be a different issue as there was no way my nighttime basals should need to be higher than my daytime basals, yet they absolutely do. But then sometimes he doesn’t offer me any interesting advice, and just suggests I should eat differently, which I politely ignore :blush:

Other than that I use my endo as a source of scripts, and at this stage, a cheerleader, since he is now very complimentary about my Clarity reports/hard work :stuck_out_tongue:

[Mod EDIT: copied part of this post over to split thread to Night basals: higher or lower than daytime?]

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I’m just wondering why u have so many empty vials around?? Just for this occasion??

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Thank God we finally have a real detective on this affair! Why, @Chris, why all these empty vials? J’accuse…

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Honestly, a few threads on here have made me want to keep the insulin pen vials around, and I was planning on making a light thread by gluing Christmas lights into the vial necks and putting that on our Christmas tree, but I am fundamentally lazy, so this remains an aspiration.

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You should go on…, minute to win it.

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2 posts were merged into an existing topic: Night basals: higher or lower than daytime?

I’m also interested in the amount of substance use in that household … and maybe the two are related. In one picture there’s a decent-sized cocktail, and in the other it looks like a whole pile of pills next to the placemat. (Yeah, @Chris is going to say it’s just the light’s reflection. I’ve heard that one before.)

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If I didn’t have that cocktail do you think I would have made the decision to start stacking vials? Substances have valid purpose baby!

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@Chris, this is a very strong argument.

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Yes, all right, good point. Last month it was because of a very nice cocktail (actually two) that my two-day trip to London for a funeral morphed into a 10-day vacation in Sweden. They were amazing cocktails!

[ETA: Occurs to me that maybe I never went to Sweden. Maybe I was just sleeping off those cocktails in my hotel room.]

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With or without cocktail, stacking empty insulin VIALS is much safer than stacking insulin. Go for 6!

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I have to tell you that I tried for about an hour to get the 6th vial stable, but was not able. It is much harder than I would have thought, considering I got the 5 stack on my second try.

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I have yet to find an Endo that’s worth a damn. There is only one local to me and while he was probably a decent Endo back in the 1970’s I don’t think he’s read any research done in the last 20+ years.
The first time I went to see him he told me I couldn’t possibly have type 1 diabetes because only children get type 1.
The next time I went to see him he recommend I get a stationary bicycle and ride it 30 minutes a day. Now you have to understand that at the time I was riding my bicycle to/from work everyday, which was a bit over 15 miles each way. I also ride my bicycle just about everywhere else, including to his office that day. So I was sitting in front of him wearing bicycle shorts and jersey, with my helmet and water bottle in my lap.
So when he suggested I ride a stationary bike I asked him if that was in addition to the 2 -3 hours a day I spent riding a regular bike and he goes “Oh, you ride a regular bike?”

After that I switched to an Endo up in Tucson AZ, who was about 100 miles away. I went to see him about getting a CGM and Insulin pump because I didn’t feel that I was getting very good control with finger stick testing 4 times a day (my insurance only allows 4 test strips a day) and MDI, plus I was having problems with going low when I exercised (saw a drop from 235 to 60 after 30 minutes of exercise one time)
Anyway, for the first part of the appointment I only got to see his PA. When I mentioned that my daily injection of Lantus would often run out after 20-22 hours and I had to cover the extra time with a Novolog bolus he told me that wasn’t happening because Lantus lasts for 3 days (seriously, no Joke)
When the actual Endo came in he told me he would not prescribe a pump because I only exercised 2 hours a day and you don’t need a pump unless you exercise at least 8 hours a day (wtf??!!??)

The last Endo I went to see told me that according to studies, insulin pumps don’t make any difference over MDI, but she’d give me a prescription for one if I insisted (I did).
She actually seemed like a decent Endo. However, I still had to drive 100 miles to see her, I’d arrive 20-30 minutes early just in case there were any traffic problems and wouldn’t get in to see her until 30 minutes to an hour after my appointment time, then she’d spend 3-4 minutes with me and tell me to come back and see her again in 3 months. If if it was more than 3 months since the last time I’d seen her, she wouldn’t approve refills on the Pump/CGM.
I was wasting 4-5 hours of my time and 200 miles worth of travel to see her for 3 minutes. Seemed a bit of a waste so I talked my primary care doctor into approving the refills, and I don’t bother driving up to Tucson anymore.

None of them could bother to write me a prescription for either glucagon or keto test strips, even though they all said I should have some.

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I really feel bad for many of you. My son’s current endo group is really fantastic. The educators set up training sessions with us before our appointments, when they have funding we get a quick meeting with someone focused on my sons mental state, then we get 20 minutes with the endo, most of which is my son educating them on what he is doing, the rest is spent on discussing the latest research and answering questions. Every other appointment the endo offers suggestions on how to improve his care. The last visit she sat with the Dexcom data and worked with him to adjust his basal’s to get better control. It is really time well spent. I wish everyone who desires such a relationship could see a physician in this way.

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I do everything through my GP. Never had much luck with Endo’s. The last one I went to looked at my numbers and said “your numbers look good, how can I help?” He did comment you test a lot, your going to eventually drive yourself crazy.

In my mind they weren’t really bringing anything to the table.

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@LarissaW, I talk a lot and tell a lot of stories. I like to think it gives context to what my opinions are…so if my opinion is stupid, at least you’ll have context for why it is stupid. :grin:

I was diagnosed at 21. I was living many states away from home on a 6 month internship at the time. I left work one day in a daze and one of my kind coworkers called me and gave me the name of her daughter’s GP. I got in that afternoon and was diagnosed Type 1.5. I was sent home from that appointment with no meter, no gameplan, but with some Metformin!

Another coworker called me that night. A pilot whom I had not flown with (it was a flight internship…I only mention this bc it is actually relevant…not to sound like I am hung up on myself) had been diagnosed Type 2 and lost his flight status for quite a while until he got his A1C down and blood sugar under control. That’s a lot of pressure for a man supporting a family! Anyway, he called me that night, gave me his condolences, and set up a meeting with me that week. He was my Self-Appointed Mentor. He told me to ask the GP to send me to the local three-day diabetes clinic, he told me to ask for a meter, and he taught me how to count carbs, cook, and log food. He was AMAZING. His wife was also Type 2 and also super supportive. He also taught me to do my homework before meeting with doctors and to be my own advocate. I carry that approach with me today. It may not be right for everyone, but it has saved my health and my immediate well-being more than once, unfortunately.

I’ve had seven endos that I can remember. I’ve fired two. I’ve been fired by one crazy one (bc I deviated from her I:C ratio for dinner one night when I ate potatoes and padded my bolus). I hear everything they say…but I evaluate everything they say. I mostly find myself in the position of having more experience than they do and get to tutor them on Dexcom and podding. My current endo asks me a lot of technology questions.

The most important thing for my care is knowing how the endo office works and how to get prescriptions and prior authorizations timely filled. My endo’s office is controlled by the nurses. Each endo has one nurse and that nurse makes or breaks my care. I’ve been working on my relationship with my current endo’s nurse for a few years now. She’s a tough cookie but I’ve finally broken through. Although I was disappointed in my A1C results from my endo visit the other week, I was thrilled with how my interaction with the nurse went. She called me “sweetie” and chatted it up with me like we were old girlfriends!! Prior to that, our only interaction was her rote questioning of whether I bruise easily or have migraines or GI issues. So when I messaged her the other week to ask for an insulin switch and for Rxs for vials and pens (which she used to refuse to do point blank…I had to pick either vials or pens), she sent them both in with a stern warning it might not go through! That’s Progress!

Anyway…endos for adults are slim pickin’s where I live. We have a shortage. However, we have fantastic pediatric endos at the children’s hospital. It seems that T1’s under 18 in our area get fantastic care. Adults…not so much. My endo usually just asks me for help in quietly unionizing the hospital staff. When I pressed him for his opinion on my injection welts, he kept changing the subject until I cornered him on it. He just put his hands on his head, stared at his desk, said, “Yeah…that’s bad” and changed the subject.

I get my best info from FUDders. I hope you have a more progressive relationship with your endo than I do mine. But mine has ended up as a learned behavior after trying to trust past endo’s recommendations with no follow-through on executing the new plan. And when I’m really in a pinch, I pay for consultation with Gary Scheiner’s group. I’ve done that twice now and they’re worth it. They’re all T1D’s who have tried the different therapies they coach about.

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@T1Allison, what an outstanding post!

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Thank you, @Michel!

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I don’t actually see an endocrinologist. I was diagnosed by a DO who specializes in autoimmune diseases (I have several). I originally went to her to handle my other diseases after I moved, and through routine tests she does, we discovered LADA/type 1.5. To make a long story short, I didn’t understand my diagnosis for a while, then there was either miscommunication or just unwillingness on her part to do what I wanted (start insulin therapy ASAP; I was pregnant by then), so I ended up getting my insulin prescriptions from my maternal fetal medicine specialist, who was clueless about type 1.5, so I had to figure everything out by myself. I did go to an endocrinologist after I had my baby, but he was an idiot, so I went back to the DO. She’s truly very up to date on current research, so I value her opinions and the information she brings, but as far as diabetes goes, I just use her primarily for prescriptions. She didn’t even want to start me on basal at first; I went to her NP instead (really, couldn’t get an appointment as quickly with the DO). I still haven’t been bold enough to ask if her if she truly thinks she can cure me (of everything I have), because a lot of what she says and wants to do treatment wise seems to hint at that…unfortunately, care there has gone down significantly since they have become more limited due to insurance and other regulations, so I’m struggling a bit with thinking about switching to a different doctor, but have already had a bad experience going elsewhere.

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Thank you for sharing. I do hope more endos move to your area so there isn’t such a shortage of the pickings…

love this.:clap:
I also love what you had to say about the nurses. I think oftentimes and in many different practices they are the ones running the show. And here’s to more progress with your endo’s nurse!

I’m working with Jenny from their group and she’s PHENOMENAL. Also regarding their prices - from a recent email sent from Gary to his clients:
“Now here’s where my lack of business savvy rears its ugly head. We have a standard set of fees for individual appointments and retainer services, but we are always willing to be flexible. We will NEVER turn anyone away if they are unable to afford our usual rates. In such cases, we will accept whatever the patient considers fair and affordable. We may never get (money) rich doing this, but richness comes in many other forms.”
And this has made me love, appreciate, and respect their practice a million times over.

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