How do you benefit from your endo visits?

18 years of age.
They said they sometimes let people slide a bit but probably just to give reasonable time to transition. It is very specifically a Children’s Hospital.

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Bummer. :frowning: I have an adult endo in the hopper when we’re ready. Comes highly recommended but it could be hard to get in!

Yale is a “teaching hospital”, yes? Those work a little differently than a doctor in private practice.

I “grew up” as a kid with T1, with stays and visits to pediatric endos at a large Midwestern University Hospital. They had very deep and broad staff and expertise. Any specialist check-up was always in the same system. But if I wasn’t having any issues the visits did not feel particularly productive.

Since then I’ve had a number of different docs in private practice. None have the “depth” of a full University hospital staff by any means. Some felt like a poor match to me, and others felt like a good match. I’ve stuck with the ones who are a good match. In particular my GP is an internist who knows a bit about diabetes but has helped me with a lot of other non-diabetes non-bg issues as I’ve gotten older. Some of those issues he’s helped me with, actually are a little broader than purely medical and have to deal with me handling stress and family friction.

It sounds like your kids GP is a great match to you and Caleb, and I’m not surprised if you feel those visits are far more productive.

I don’t know if Caleb’s GP is a pediatric endo or just an endo. If he’s just pediatric, then at some point Caleb will have to transition to a new GP, but that’s a little ways in the future.

I went through the transition at my Midwest Univesrsity Hospital from pediatric to adult care, and it went pretty poorly for me. I went from pediatric endos who knew T1 and me very well, to a bunch of endos that (to be honest) barely understood T1, much less a college-age T1. That was a good chunk of a century ago, I think there will be more and better options for Caleb’s transition when it comes because docs today are better suited to handling adults with T1 in general.

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Yes, Yale is a teaching hospital. They were great in the beginning, and as you say, gave us access to a large staff of specialists. I just couldn’t justify the trip on a regular basis. I always have in the back of my mind we could go their annually or to Joslin annually if we want something more in depth.

Caleb’s doctor is a pediatric doctor. Caleb will grow out of him although he’s fairly forgiving and sees young adults. There’s a local adult Endo who has been recommended to me - he lives with type 1. He’s someone we will definitely consider as we look forward to that transition.

I’m glad you’ve found what works for you. It can be so hard!

@Lorraine I envy your situation. None of the local GPs would even consider taking on a T1. Actually, considering what I’ve seen of the care T2s get locally, that’s probably a good thing.

The first 6 years we drove 6 hours to a large children’s hospital for care. We could have continued with the endo my daughter saw at dx (only an hour away) but I was not impressed with their lack of interest in teaching us how to care for our daughter. The deciding factor (last straw) was when the endo told my daughter she might consider prescribing a pump “in a few years when you’re in high school.” She was 11. I had no intention of waiting that long. The 6 hour drive was well worth it in the beginning. We were grateful to have a team willing to teach us, & they were very supportive of technology. Sometime during the 2nd year things changed. The waiting room was always packed, & our visits always felt rushed. No time for questions or discussions. We stayed because there was really no place else to go.

The past 2 years we’ve been driving only 4 hours away, to a new satellite clinic affiliated with the same children’s hospital. It’s an improvement over the longer drive, but much less productive. Our visits with the CDE were over Skype. Very impersonal. My daughter graduated in May, turned 19 in June & had her last appt soon after. Their policy is 18 or graduation. We had decided on an Endo affiliated with the hospital where she was treated at dx, but the rudeness of the RN we had to deal with to get medical records transferred etc put my daughter off. She decided she’d rather not have to deal with the RN no matter how good the endo might be. She’ll finally be seeing a new endo next month, & still making the 4 hour trip. He’s highly recommended, & I’ve heard from a couple of other parents of CWDs that he’s very big on education & support for young adults. I’m really hoping he’s a good fit.

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For me, it is getting the omnipod and
Dexcom cgm. They don’t take blood so I don’t get lab results. Instead I email them my lab results taken by my internist when I have my annual physical. Usually it is over a year between visits though because of my work schedule. I have the same experience many of you mentioned. Much of the discussion is reviewing bg numbers and being told my a1c is too low and that I need to eat more carbs. I do like my endo though and an glad for the opportunity of getting the pump and cgm. They’ve made a huge difference. But I struggle with staying in target range, daily.:frowning: I use xdrip+ but I know I need to make a stronger effort to prevent lows.

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Wow. I do feel very fortunate after reading this. I hope this new doctor is great and makes the trip worth it!!!

I don’t see one. I was diagnosed 35 years ago and I have always viewed endocrinologists as well as doctor with some suspicion. In terms of Diabetes that is. I have a hard time really trusting any doctor that does not have T1. How can they possibly know?? Within a year or two Of dx I felt I knew more than any doctor or endo I saw. They just kept giving me tired old formulaes that I never followed. And the dietitians were even more terrible. I always had relatively good control (A1C’s below 7) and I was always told I was doing great and yet I never tamed the roller coaster. In the last year I have discovered the advantages of low carb eating, and read the book by Dr Richard Bernstein. I now have non-diabetic blood sugars and feel great but it makes me wonder why in all those years not a single doctor or endo or dietician ever suggested to reduce carb intake. Now it seems like the absolutely obvious thing to do. And how come none of them ever suggested I’d read that book? Hadn’t they?
So as far as diabetes goes I am self managing and pretty much have been for the last 39 odd years.
I see my doc for prescriptions, is all.

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My endo likes my data. Doesn’t wanna know what I do (LCHF and some intermittent fasting) just that I keep it up. Last time I was at clinic, a nurse I didn’t know asked me if my infusion sites were purulent (she used a different word that will get blocked - it rhymes with “fussy”) and tried asking other questions, saying it was on behalf of “the doctor”. I was shocked and appalled. The nurse had never even reviewed my data. Knew nothing about me. I told her if the doctor wanted to ask me things, she could ask me her self. Over 2h in waiting room for 5 minutes with the doctor. Ugh. But I need the prescriptions for technology and insulin, so…

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that’s pretty much my story. battling out there on your own can be pretty hard, so having a person who i respect and look up to telling me i am doing a good job is priceless.
Last time i walked in there, my A1c had gone slightly up, and with all the stories they tell you in Cardiology classes in meschool, i went in there convinced i would die at 30. :see_no_evil:
he really built me up there, telling how good of a job i am doing, and that was really all i needed.

another advantage my endo has, is that he is on top of the news, gives me the new stuff he thinks i could benefit from (like fiasp, THE BEST) and keeps me away from stuff i dont need.

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Two of my endo’s including my current one are also type ones ( addressing your issue of not trusting doctors who are not type 1) coincidentally they are the two best that I have seen out of about 6 or 7

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This was my experience, too. Except it happened five years ago. I felt a lot of anger toward medical professionals about this. That occurred at year 28 of my diabetes life and I had seen four or five endos by that time. Not a one of them broached the subject of carb limiting.

To be fair, I could have discovered this info myself. In fact, I knew about carb limiting from following protracted debates on TuD at the time. But I didn’t want to do it! Every time I thought about giving up bread, potatoes, and noodles, I couldn’t muster the will to make the commitment! So, I shoulder some of the responsibility for my delay in adopting a carb-limited way of eating.

It was a little weird, however, when my my A1c dropped and my glucose variability plunged, my doctor asked what I was doing to drive this change. When I told her it mostly came from carb-limiting, my comment was met with very little response and a lot of silence. I’m not sure if that response was driven by ignorance or her discomfort with a tactic that was not in the accepted standard of care.

Congrats on realizing early on that the responsibility of your diabetes treatment is mostly yours. Doctors are there to help us but they can’t and don’t know everything. Peer support is a large missing component in most people’s diabetes treatment plan. Good luck going forward!

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Well, ditto, Terry. The only thing you got wrong was the ‘early in’ bit. It took me 35 years! Are you fillowing the Bernstein protocol?

It would be excellent to have an endo who is on top of latest developments. I hope yours knows all about the Bernstein protocol. I am not sure it strictly follows an endochronolgist’s job description but it is pretty much the best way to effectively manage diabetes. Technology and insulin advances definitely help but even with NPH as basal and NovoRapid, I got my levels down to non diabetic levels. But it would be great to discuss technology with my doctor. Last time I saw her she was amazed at my cgm. Hadn’t seen one before :frowning:

If I walked into an endo office and the person in front of me said ‘I am a T1, too’, my attitude would instantly change. That person would know how ■■■■■■ it feels to be 10 (180), and would never ever suggest it is ‘OK’. You are lucky! :slight_smile:

No, I don’t follow Bernstein’s protocol, per se. I know he limits carbs to 30 grams per day, 6 at breakfast and 12 each for lunch and dinner. I don’t closely count my actual daily carb count but I’m likely under 60 or so every day. I only eat two meals per day, a late breakfast and and early dinner. I do best when I can eliminate evening snacking. This routine builds in a daily 16-hour fast when I manage to avoid evening snacks. I’ve found intermittent fasting a potent tactic.

My routine now most closely aligns with Adam Brown’s Bright Spots and Landmines book published this year.

Bernstein was ahead of his time and often maligned and marginalized by his medical peers. Now his ideas have stood the test of time and he’s enjoyed recognition and respect at least from a devoted group of people with diabetes. He is a living testament to the validity of his nutritional beliefs.

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I am only 7 months ish into lc, and do try and follow Bernstein as best as possible. I don’t ‘struictly’ count carbs as I am generally lower than the recommended 6-12-12. I have no carb cravings ever and simply avoid. But I am interested in the book and will download and read, so thanks for that. Apart from completely changing my diabetes control and management the discovery of low carb eating has led to an interest in nutrition generally and I am ever fascinated and intrigued. I am amazed at how wrong accepted standards have got it. I am glad to see a growing awareness and hold the Ancel Keys and ‘the establishment’ responsible.

I concur with most of the replies here, but I thought this part of your description was unfortunate. I don’t see my endo often, maybe once or twice a year, and as much for sort of “life coach” feedback as much as the straight medical evaluation and guidance. But I DO count on my endo to provide knowledge and feedback about new developments such as new insulins. You can get that information on your own of course, but so much better if it’s bundled with the other things you get from your endo.

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I think Pediatric Endocrinologists might not be as on the leading edge of new medications. It seems that often times new medications are first approved for adults. For example, the recent FDA approval of Fiasp is for adults and includes this in the FDA approval statement:
"It is not known if FIASP is safe and effective in children."
With that FDA statement, how many Pediatric Endocrinologists are going to be comfortable prescribing this for their patients if the current medications are working good enough?

This is probably part of it, but I think it’s also that he is a pediatrician first - that’s his primary caseload - and endocrinologist second - well maybe not second, but he’s not dedicated to it like most specialists are. Even so, I was a little surprised. We are usually able to talk about advancements on a current basis.