The endo search

Type 1 and LADA
1

I don’t know if I’m looking for advice or just need to vent before I explode. Maybe I need a little of both.

My daughter aged out of the ped endo clinic she’d gone to for 7 yrs. We live in a rural area so seeing an Endo means travel. We’re also limited by a short list of in-network providers. We started in the closest city with an Endo who was supposedly really good with T1s. He was not supportive of pumps/CGMs at all. His goal for A1c was “somewhere around 8, but not below.” Say what? Obviously he wasn’t a good fit.

So on to Endo number 2, also supposedly good with T1s. His list of requirements sent via mail (1st warning sign?) Included 30 days of paper logs. No problem. We’ve always had to provide paper logs. We step off the elevator directly into his waiting room, where 5 (yes 5!) amputees in wheel chairs are the first patients we see. I’m trying to stay positive, so I’m telling myself these people are here because they’re finally getting good care. We wait an hour past our appt time & finally get called back. The endo comes in apologizing for the long wait, spends a couple of minutes looking at the last 3 days of logs, pulls out a calculator & starts tapping on it. He then asks to see the pump & starts deleting/changing settings.

Is this normal for the T1 adults here? In 8.5 yrs of pumping no one has ever touched my daughter’s pump, much less deleted anything on it. She’s very OCD about her devices so I was waiting for the meltdown. It didn’t happen until we got back to car, thank goodness.

The results of the changes:

Target was changed from 120 overnight/80 daytime to 150 overnight/100 daytime. Supposedly this is to keep away all those nasty lows she hasn’t been having. Anything under 80 is a low in his book.

He changed her ISF from 40 overnight/30 daytime to 22. This caused some pretty bad lows the first full day (in the 30s & 40s, which we haven’t seen since we threw away the NPH & started pumping). She changed the ISF back to the previous settings.

He raised her highest basal from 1.175 to 1.6. I’ve mentioned before that my daughter is an odd case. Too much basal causes stubborn highs instead of lows, so the first day she was stuck in the 400s for 4 hours before she lowered the basal & started dropping. She has now changed all settings back to where we started.

I’ve heard the transition from pediatric to adult care can be hard, but I didn’t expect it to be a train wreck. Is it just a stroke of bad luck that we’ve managed to find 2 endos who think A1Cs in the 8s is good control? FWIW her A1cs have never been above 7.5, even during the worst of puberty & PCOS.

Any suggestions for our next try? Surely there has to be an easier way to find a good Endo? I found her Gyn through a search on PCOS diva. So far, I haven’t been able to come up with anything like that for endos. Our primary doesn’t recommend any of the ones nearby us even for T2, so she’s no help.

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I would explode.

Security would be called.

I am typically fairly calm.

■■■■ with my daughter’s pump - yeah - I don’t think so.

I sympathize. This is a concern I have. We also are going to “age out”. Luckily, we do have many choices.

I hope you are able to find a good solution.

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I would suggest to pair up with a Family Doctor to get your scripts filled. Do this now.
Tell the Doc you are in the process of looking for an Endo.

At least know that you can get scripts. Then you are not under the gun for time pressure.

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I think I was so shocked I couldn’t react. I still have a hard time accepting that appt as reality instead of a nightmare. We even scheduled a return appt, which has been cancelled.

I’m worried we won’t find someone who works before we’ve run through our stash of supplies. We have about 2 months of pump sets left. It took 3+ months to get in to this appt.

5

Never, never, never, never.

I am sorry about this. This sounds horrible. I would absolutely never let anyone do that. This should not happen.

You may never find a perfect endo, but if you look hard enough, you can find one that does the minimum you need. If you are persistent and keep looking, you might find one that is really helpful.

Depending on your insurance, you are not locked in to any one endo. Try again with a different one, please.

From my perspective, there are 4 general levels of endos.

  1. Level 1 - They try to change your pump settings or talk diabetic baby-talk to you. With them I am one-and-done. I never return to them. These are horrible.

  2. Level 2 - You don’t learn, but they fill prescriptions and don’t do stupid stuff or treat you like a child. That’s the minimum. It isn’t great, but at least you get your stuff for another year.

  3. Level 3 - You can get prescriptions, and also have a good exchange of information. There is no chastising, only helpful advice and encouragement.

  4. Level 4 - You actually learn. You know more after the visit than before. They don’t talk down to you, they don’t screw with your stuff or chastise you over every low you have had. They don’t try to run your A1C up.

You may never find a 4, but keep trying until you find at least a 3.

What is the general area you live in, a city or a state? There might be some people who could make recommendations.

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I also live in a very rural area and I do not have any access to an endo. If your daughter is comfortable with most of the problem solving aspects of her diabetes then you can do what I eventually did and just go to a regular old Doctor. I found a PA that is okay with writing my prescriptions and works with me when I want a test or to try a new diabetes product. That being said I did go through several frogs before I found a medical professional that I didn’t want to throw back into the pond.

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Texas Panhandle. We’ve seen an Endo in Lubbock & this last winner in Abilene.

Her ped Endo started as a #3, then slowly fell to a 2. We were ok with that because we could get an order for anything we needed. I’m not sure the first guy could even make level 1. This last one still just boggles my mind. I’m not looking for perfection, just someone with a reasonably good understanding of T1 & a decent attitude. Well, those things & a ball park idea of what good management is.

@Tim35, our primary is actually keeping us in insulin right now & she has no problem writing Rx for what we need. Pump & CGM supplies she won’t touch. It’s the same with all the GPs around here.

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Sadly for us, there are more bad endos than truly good ones. I’ve been to 7 and only 2 know what they are doing. And a third one, while not too awful bad technically, has some serious attitude and personal issues. What made us most irritated with him was his constant complaining about my wife’s low A1c numbers, yet she doesn’t suffer from very many lows. Her A1c’s were in the high fours and he’d gripe about it. DUH.

I will cut him some slack though, because he Rx’d my first pump. :slight_smile:

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Both Pianoplayer7008 and docslotnick over on the FUD diabetes site live in Texas. Maybe they know someone in your area.

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Bot in @tiaE’s neck of the woods (or lack thereof), but my latest endo’s in the 3.5/4 range. While I don’t always learn anything or much, he listens to my concerns, then /before/ the next appointment, he reviews the notes so that he can come to the appointment prepared with research to attempt to resolve my issues, etc. He is very progressive in terms of reading a wide array of research (even smaller studies, outside of the mainstream), and is an early adopter of new technologies and medications. [Communicated with his CDE today about an issue, and her response was that they should have access to Fiasp for me to try by the time I have my appointment in February.]

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there’s a “find an endo” feature on the AACE website
https://www.aace.com/

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@MarieB, that’s the first place I checked.

“Your search is showing 0 Endocrinologists with: Diabetes Mellitus Endocrine focus.”

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The essential characteristic of a good endo (and good human beings) is the ability to communicate well. We diabetics come in all shapes, ages, and abilities. The first thing a good endo should do is ask some simple questions about us so that they can calibrate their care to the unique individual that every patient is.

Your nightmare endo seems like a one size fits all provider. He may have had a young adult one time that asked him to directly do the changes on the pump. In my book, he should have first raised the factors that he wanted to change and explain his logic about why he recommends this change. He should never assume it’s OK to grab your daughter’s pump and just start making changes. I see that as rude and inept.

I’m sorry you’re having trouble finding an appropriate endo; I just wanted you to know that your and your daughter’s reactions were legitimate and appropriate. While I have lived with T1D for 34 years, I wasn’t diagnosed until age 30, so I missed that hand-off in care from childhood to young adulthood.

I think the absolute best way mitigate these kinds of poor medical service is for your daughter to become her own expert on her diabetes. Treat any medical doctor as a possible resource but make them explain their perspective in terms that you and your daughter can understand. I now see my endocrinologist as primarily for prescription support. If I run into something I don’t understand, I would hope that they can draw on their extensive education and clinical experience to help guide me. For my diabetes, this rarely happens.

I see my endo as a valued member of my medical care team but s/he needs to clearly understand that s/he works for me and I am the one who will make all the treatment decisions. I may ask her/him for their opinion but they will not decide for me. Your daughter has skin in the game authority that should never give way to a credentialed provider in a white lab coat.

Good luck with your doctor search. Doctor relations is an ongoing topic in the diabetes community.

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NONE of the endos that I’ve seen - past or present, nor the ones that my last (retired) endo recommended appears in the Search.= with ‘Diabetes mellitus’ selected. One appears when I select ‘General Endocrinology’ and even when I select ‘ALL’ my current endo does not come up on the search…

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This is always my advice.

I typically gander at Healthgrades and follow with a web search on the “good” ones you find there to see what people are saying. Believe it or not, Yelp is a good resource to weed out really bad ones.

And as others did, keep changing of you have to. Reach out to the community if you need supplies, and ask the local Medtronic/Tandem/OmniPod representative - they will always give backup supplies.

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You may want to try search without the criteria, then check those with FACE. My endo shows up when I do that.

I used to have a 4 Dr, but retired. So now I have a 3 (mostly).

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@Thas, I think you’ve nailed the problem. I saw an excellent endo for 30 years. He was great at autoimmunity, but knew nothing of diabetes. Even if they’re listed under diabetes, most in our area seem to know little about T1.

My daughter has several T1 friends who attend Texas Tech, from Texas & out of state. She asked who they saw in Lubbock & the girls laughed. They see endos when they’re home on break. One told her she had one visit with a Lubbock Endo. It was so bad she didn’t try again.

I think we may have to go back to the Ft Worth/Dallas area, or maybe consider Austin or Houston.

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Dr Stephen Ponders is in Temple, Texas. Maybe you could contact him for recommendations. Not sure where that is compared to your location…Texas is huge !!!

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Thanks to all for the advice, suggestions & encouragement. I had started thinking maybe we were both overreacting, especially about the pump grabbing.

My goal from dx has always been to teach my daughter to manage on her own. She does a great job, & I’m proud of how knowledgeable she is. Now to teach her how to find good care & someone willing to work with her.

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I sure you were much better behaved in that situation then I would have been.

That Doc’s actions were completely unacceptable.