What purpose does an endo play in your medical care?

I’m just wondering how much value people get from their endo appointments? I haven’t gotten much out of my sessions. Recently I was at a consult, the endo didn’t do much but answer a few questions I had, write me a prescription and review my blood test results (all of which my GP could have done), didn’t even look at my pump reports. And then I was out in less than 10 minutes (I was literally walked out of the consult room) and was billed $300. I wanted to ask her to review my pump reports but it is done so hastily in the past without much thought it’s not even worth the effort. I was told to schedule to see her again in 3 months time and in my head I’m just thinking what for?

I’m so frustrated I don’t get much out of these endo appointments at all and I find them so terribly expensive. I don’t learn anything new and I’ve been through a few endos and they all are pretty much the same. At one point I just stopped going. I only went to see one recently because my pump was due for renewal and it was mandated by the pump company the endo had to sign off. So really i was paying to get some very expensive paperwork done :(. I just feel I’m just throwing money away, its so wasteful. If anything I rather spend the money to see the DE who actually adds some value and spends time to go through my pump reports.

My medical team should have an endo and the recommendation is I see one every 3-6 months… but I really don’t see what role they play. Perhaps I have the wrong endo but she is always fully booked and the previous endos I have had were about the same. My GP here can write me my insulin scripts and do my blood test so I don’t need an endo for that. And I am comfortable making insulin adjustments myself.

So I am curious what purpose your endo plays in your medical care? If you are from Australia, I am particularly interested whether your experience is the same as mine and how much your consults are if you don’t mind sharing.

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Type 1, for 61 yrs, I have never used an endo, BUT I don’t use a pump. My GP looks at my A1c, and writes insulin prescriptions for whatever insulin I request. We never talk about my diabetes. I am very comfortable with that, but I have been treating myself for decades. I do use a Dexcom now. I live in the USA.

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I see a CDE. I am on Medicare, so I see her every 5 months for my CGM. They do an a1c and answer any questions I have. Originally she helped with my basal and bolus doses. I can email the clinic any time.

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I have never gotten anything extremely helpful from an endo. I see them when dexcom requires paperwork from one and avoid them otherwise. I’ve felt like this the entire time I’ve been diabetic (since 2006). I wish I could find a general practitioner that trusted me to make my own dosing decisions and would write me insulin/CGM/pump prescriptions but haven’t been able to yet.

Part of the problem is that endos are too high in demand. They’re always overbooked and always in a rush. This disease is so nuanced I find it difficult to speak to someone who is in a rush about treating it.

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I am in Spain and also need to see the endo to keep my pump. My first endo was really no help at all, on her way to retirement, she knew nothing about pumps and was crap. I didnt have an endo for years-just didnt go, as I was getting nothing out of it. I used my GP until I started going into burnout SInce then, I have had two fabulous endos. My current one got me on the pump and is the head of endocrinology/diabetes at my hospital, really into pushing the tech for better quality of life.
Since everythinng here is socialized, I dont pay for anything, except through taxes. This makes it easier to go. If I were paying 300 euros to go, I would want some personalised service and more than a cursory glance at my pump records.

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@tedos:

I’m in the US and on Medicare … so have to obey some rules that make NO logical sense; I think that as a pump user (I also have CGM) I have to see someone … in my case and endo … and get an A1C every 90 days. As I spend time in two states, that is tricky … particularly with Coronavirus being what it is in the US. In fact, my endo in CA tells me that a video visit is “illegal” if I’m out of state … so in 5 days I have an Appt with a new endo in NM. Based on the fact that his questionnaire didn’t even mention the possibility of a patient having CGM, I’m not optimistic. But, I have to see them to get a prescription in NM because a Medicare Part B insulin script for pump use isn’t transferable … even across town, much less to another state.

As to what I learn … every once in a while, I get a useful suggestion from my endo. However, at one point I had a CDE who was also a T1D … and she was more useful than anyone I’ve ever talked to in my 48 years as a T1D.

In the US, it is sad that medical care is secondary to insurance considerations … and I say that as someone who is lucky enough to have SUPERIOR insurance coverage from the perspective of out-of-pocket expenses.

To say that I occasionally learn something useful from my endo isn’t a ringing endorsement … but she IS more useful that some of my old GPs who used to say: your A1C should be 6.5-7.0 … when mine was 8.5-9.5 … with nod discussion of what tools would allow me to achieve that. As it was an endo that got me first on CGM and then a pump … that has been a life changing event While my numbers are still not great in comparison to many on this forum, TIR of 80-85% and average CGM reading of 130-140 mg/dL is clearly dramatically better than I used to be able to achieve without my high-tech friends.

When I think about it, I probably learn more about T1D management on this forum than I do from those with board-certification …

Stay safe!

John

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This I definitely agree! I have learnt so much and it’s so practical and on point - not some of the BS stuff I sometimes get from people who only know the disease from textbooks but don’t have a clue about what reality is for people with diabetes.

I rang up the other day to my endo’s office to ask a straightforward question about my medication dose that I had forgotten to ask in my last consult (and she had forgotten to tell me), I was told by the receptionist that I am unlikely to get hold of her and need to make an appointment… which was just a polite way of saying she won’t answer your question without a consultation and you will be charged. :unamused:

It’s good that you have found someone that can help! Perhaps my attitude towards endos would be different if I was able to get some value from my consultations even at such a high cost.

I also once had a endo who got me onto the pump and then after I was on it, I realised she knew nothing about pumping! In our consultations, she had a million questions on how my pump works rather helping me with my condition. I stopped going. It seemed like she got me on because that was the “new” thing people were using to manage diabetes and I was young and tech savvy so was a perfect candidate. I don’t regret going on the pump though and think it was a good move, but it would have been nice if she could decipher all the medtronic reports to help me. She never looked at a single one because she didn’t know how to read them… I have since learnt that DE and endos are taught to understand those reports and make use of them. I find it amazing how quickly my DE can understand what I was doing when she looked at the reports.

Being a diabetic for most of my life and with several moves thrown in to complicate matters I have had some of the best endos and some of the worst. The worst case ones I never went back to and the best case ones it was wrenching to leave (such as aging out of pediatrics). Ive had GP’s that haven’t been much good and physicians assistants that have been very helpful with writing scripts and answering questions and looking for answers to my chronic pain and exhaustion.

My current endo is pretty great but his staff is terrible so having to deal with them makes me feel like I’m banging my head into a brick wall (painful and pointless). In your case I would go back to seeing your DE and just reserve visits to the endo for when you need prescriptions or paperwork your DE can’t do. Being too busy to answer your questions makes it no use to go without some other pressing reason.

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My diabetes is a lifelong DIY project. My endo is my drug dealer, period. She writes prescriptions for the medications I want and for the dose I feel I need. For the first few decades, it was an annual visit at my insistence. When I went on Medicare and a Dexcom CGM, Medicare made it clear that in order to have the CGM expense covered by Medicare a visit was needed every 180 days. They claimed these unnecessary additional useless visits would save them money. Government logic at its best. I wish I could donate these visits to my superb endo to a patient that could benefit from them; alas I am just one of those patients that wastes my time and clogs up my endos schedule with useless visits.

On the bright side, visiting my local clinic to see GP has become a pleasure since COVID. No more wasting 20+ minutes in a waiting room making out the same useless forms each visit followed by being weighed and blood pressure taken. The wasteful pomp and ceremony has finally been eliminated. - Thank you COVID.

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Yes! This is all I want from an Endo! But that’s a very personal choice All doctors, including endos, come in different flavors and personalities. It sounds like yours is not a good fit for you.

Personally, I don’t like being told what to do by someone who had never lived with or experienced this, and has no idea what the day to day life is. And especially not by someone who is certified by a board I don’t particularly agree with. In the US, the AMA is controlled by politics just like everything else, and highly leans on prescription meds as a megical cure. It’s more “treat the symptoms”, than a wholistic approach.
If you follow their prescribed regiment that their dosing guidelines give, then your data should present as a model patient. If you’re struggling, or have had numbers, you’re defined as “non-compliant”. We do have a different classification of doctors here, though, called DO (doctor of osteopathic medicine), which is my personal preference for doctors. DOs tend to treat the root cause of the ailments, include alternative and homeopathicmedicines alongside traditional prescriptions, and are much more likely to teach lifestyle choices target than dictate a routine.

I no longer see an Endo. There is only one Endo anywhere remotely close to, and that’s a 3.5 your drive away. And each visit left me frustrated and angry. It was everything I hate about doctors!

But then I fi6nd myself a DO Internist (doctor specializing in internal medicine) within my county, who is basically willing to write any prescriptions I want to manage my diabetes… So long as I’m able to self-manage well, because she’s unable to give me specialized advice on diabetes. This is a perfect arrangement for me! For the first time ever, I’m happy to go talk to my doctor. I like her!

It sounds like you actually do want a doctor to advise you, though. If you’re not getting what you need from your medical team, then you need to shop around. Your doctors work for you. You’re paying them! Fire the one you’re displeased with and find one you’re happy to work with.

I don’t know if it’s normal in other countries, but in the US most doctors belong to a virtual “Patient Portal”, which gives you access to all your records. You can see your chart notes, visit summary, all your medications,… And my personal favorite, all your lab results! The patient portal also facilitates communication between Doctor and patient. You can message them directly without trying to play the telephone game with intermediaries.

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I am. Type2, see an amazing CDE. She works under an FNP ,and 3 endos. I can call or email and she always gets back to me. I saw the endo last year, he said I was lucky I had no complications after , now 28 years. He diagnosed my Hashimotos,also. My. D.O. Is my PCP and she also is excellent. My CDE visit is 60 min. My PCP is 20. I have enough time to get everything taken care of. Nancy50

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Well I expect the doctor to be adding value. At the moment I don’t even see what role they play in my treatment. I can understand seeing one when I was first diagnosed where they explain the in and outs and getting you onto insulin. A GP probably doesn’t have this knowledge. But I’ve passed that stage and it seems that their consults are just ticking the box to say I’ve seen one.

It’s not easy to find a good specialist. It’s not like there is a website with all the listings and reviews - not here anyway. You really only find one via word of mouth and if you are in luck they are close by. I did a google on Endocronologist and basically not much showed up.

Nope not in Australia. If I go from one doctor to another, the surgery would have to get the old doctor to send over the files. And they may be able to get the lab results if they are subscribed to the pathology that I go to but in don’t think there is a centralised database for it. I usually bring a copy with me if I’m seeing a new doctor.

And the other thing is, my GP, the one I see for flu and other issues, has the authority to write me prescription for my insulin. I don’t need to visit an endo for it. CGMS is not funded by insurance or Medicare so there is no requirement for an endo visit besides a pump renewal or the thinking “you are a diabetic and should be seeing an endo”. When i go to get my eyes checked, the optom would ask me when my last visit to the endo was, same with my GP so in my mind it is expected that because I’m a diabetic I should be seeing one - Rightly or wrongly.

Thinking about it more, I expect an endo to help me get my hb1ac down and guide me to maintain good diabetic control. But I don’t seem to get this support from mine or from any of the endos I’ve seen to date. My DE seems to be doing all that.

To me, a good CDE is more important than an endo. The fact that she is responsive is great! It does sound like you have found a good one!

I am required to see a Doc for bureaucratic purposes - they fill out the paperwork so I can drive a car and fill out prescriptions so that I can get insulin.

They also order kidney lab test and eye exams that I can’t perform myself.

Other than that, they don’t do anything of value. Its not that they don’t try, they just don’t have the ability/time. They give a 2nd opinion on what I’m doing, and there’s some value in that occasionally. Now and then, there’s a Doc with descent data analysis.

Seeing a Doc consumes my resources, it does not contribute resources.

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Is this a normal doctor or a specialist endo you are referring to?

Specialist. Although, perhaps a normal Doc would be better. They know that they don’t know everything (about 'betes) and they are cheaper.

There are exceptions to every rule, though. Did I mention to you about the Australian paramedics that reached out on FB who were asking VERY detailed and introspective/practical questions about diabetes in order to help us better during your fires? I was incredibly impressed. They genuinely gave a ■■■■ and wanted to help people.

I tend to think about my experience with the Docs as one in which I help them learn things so that they become better providers for the patient community. But, sometimes they help me. Its a partnership.

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It’s normal in the US to be required to see a doctor, any doctor really, for bureaucratic purposes. Both because a lot of stuff that’s available over-the-counter in other countries requires a prescription in the US (like modern insulin, oral diabetes medicine, and sometimes the delivery devices), and because our insurance companies like to make us jump through hoops, otherwise they’ll find an excuse to deny coverage for our life-saving tools and medicines. Singer states add their own flavor of hassle. Like @mohe0001 , I had drivers licence trouble because Ohio gave me a medical restrictions card as a teenager getting my learner’s permit. It required me to submit paperwork from my doctor every 3 months that I was responsible enough with my Diabetes to not be a threat on the road. Except, I wasn’t able to get my license right away, so stopped submitting the forms when my permit expired… And Ohio responded by suspending a license I didn’t even have. So I wasn’t able to actually get a driver’s license later when I was able to take drivers ed. What a nightmare!

The catch is, insurance typically doesn’t care what sort of doctor (and sometimes other types of licensed provider, like a CDE or Nurse Practitioner) you see. Most diabetics don’t KNOW they don’t have to see an Endo, though. Also, it’s really up to their GP how comfortable they are handling the Diabetes diagnosis. Most GPs have a sort of shotgun medical baseline. I don’t mean that as a negative thing, but we’re only capable of holding so much information. GPs generally hold onto a little bit of a lot of different things, but are most familiar with common medical complaints. They’re most likely going to refer a patient with higher needs to someone specialized in that particular field. But they don’t HAVE to. If you’re lucky enough to find a GP who’s comfortable with diabetes, they might do everything you need and still satisfy the bureaucratic :poop:.

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My endo is not the issue, its the system. I have to see someone that can prescribe insulin in the US. Most other places in the world I can just go to the pharmacy and pick it up without a prescription. Medicare also requires periodic visits in order to have them pay for my Dexcom CGM. Anyone with a license to perform those 2 functions is all I need, so I really don’t care if the endo is any good or not as I manage my own diabetes.

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That describes me in spades. For the last 37 years I’ve consulted with an endocrinologist every quarter. Except for a period I only went once per year as I rebelled at the idea of seeing someone who gave me little value.

At the 28-year mark, I finally took ownership of my diabetes and I made it my responsibility to learn everything I could about how my glucose metabolism works. At some point in the last nine years I finally realized that my personal knowledge about glucose control and tactics, including diet, exceeded the endos’ by orders of magnitude.

This realization at first left me angry but then my perception softened as I think doctors are also victims of a system that demoralizes them, too. So that led me to my current perception that doctors for me are primarily prescription writers.

The biggest strength of the diabetes clinic practice I see now is that they have a strong back-office that handles all the communication malfunctions of the diabetes supply companies and the payers. I verbally praise the medical assistants at every clinic visit because they are the unsung heroes in my quest to get my diabetes supplies in the correct quantity and on time.

If I want Medicare (US) to pay for my pump, CGM, and insulin supplies, I’m required to see a doctor every 90 days. I don’t seek or need any glucose management advice from the doctor. The good doctors recognize the superior knowledge I exercise and usually just tell me to keep doing what I’ve been doing. The less perceptive ones try to give me unsolicited and under-informed advice. I just ignore it while I keep my eye on the prize: their signature on an Rx order!

I’m less judgmental about all the various rules I must dance to now as I realize that these rules are made for a population and cannot be customized for me. Many people benefit from these rules and I shouldn’t inject jaded remarks into the situation because it doesn’t do anyone any good.

If left to my own devices, I would see an endo once per year or as needed. A diabetes educator or a nurse practitioner might be able to give me some good tips but I’ve already lived and learned most aspects of glucose management and my body of knowledge overwhelms theirs in depth and breadth. I do think, however that CDEs and NPs can deliver a lot of value to new patients and those newly awoken to the need for better management.

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@CJ114 I’m sorry for my confusing words. I only quoted you because I was agreeing whole-heartedly with your comment, but the “your” I was addressing was the OP, not you.

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I have an endo as my primary care dr, but I almost never see him. I generally see my diabetic nurse practitioner.
She understands the ins and outs of glycemic control and is on top of the new tech and all that.
I only see my endo when something new or weird happens, which is rare.

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