What purpose does an endo play in your medical care?

I see an endo every 3 months. The main reason is I want to have a CGM and if I ever decide I want a pump I probably need the endo to help me get it.

While my endo does advise me I like that I cam following the regime I believe works best and they are allowing that. I take the insulin, meds, etc… I believe work best for me.

I also really like getting my labs every 3 months to monitor things or see the results of things we try. My endo will sometimes order extra labs if I express and interest.

If my GP could do CGM/Pump I might switch.

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I have to see an endo every 3 months for the Medicare requirement, before MediCare it was every 6 month for blood work. I see her mainly just to get my prescriptions written for what I want and Medicare to pay for it. But we have been doing telehealth visits, it is brief and that is fine. I have the ability to send her a message or request through MyChart and she responds pretty quickly to any questions or prescription requests.

I have good control so I really don’t expect input from her and actually wouldn’t want any on Bg control. She orders blood work as needed.

I now have a CDE I see twice a year for the last couple of years. She’s a type 1 and works out of the hospital here. I only keep seeing her so she is familiar with me and if I end up in the hospital she has the knowledge to direct anyone on what needs to be done and they will listen to her. We have been doing telehealth visits too now. My endo is on another island so she wouldn’t be a physical presence at the hospital. She had been visiting our island once a month.

My second endo I had was a type 1 and kept up on all the latest and used to test equipment for companies. That was great! But I moved…

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Wow thats fantastic, that’s so cool. I didn’t know that. This just proves wonderful people still exist in this world :smiley:!

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My endo supervises my CDE. I see the endo every six months and my CDE every six months.

what odes the endo do? He refers me to other doctors when needed, he has hospital privileges and he interfaces with other doctors when needed. I have 16 different doctors, so that happens a lot.

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Agree! When I was diagnosed with cancer, my endo was involved to advocate for me managing own insulin dosing, and help with adjustments during chemo. Unfortunately she has retired, but have found another, almost as great.

Handling prescriptions is also a big concern, so a good staff to handle that is important. When I propose changes, such as trying Afrezza, my endos have been supportive.

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haha it’s the sad reality. That just shows that the process is broken. Whoever defined these rules may have had good intent, but when practically comes into play, everything falls apart.

Thank you everyone for sharing your experiences. It has helped me put a few things into perspective. I was actually a bit surprised that there are a number of you in the same boat as me who doesn’t quite get any value from an endo, I thought I was one of a few but the responses gave me a feeling its actually more than “a few”.

For those who has found good support with your specialist, keep at it! I feel they are hard to come by.

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Endocrinologists are booked with too many patients and they do not like this any more than patients…they are also given low status treatment by other practices and they are (generally) not paid nearly enough. Note: I am not an Endo!

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I have to disagree here. Given my endo recently charged me AUD $300 for a 10 minute consultation, I think they are paid generously. At least in Australia.

Actually here they seem to be in extreme high demand and there is a shortage of them.

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After 15 years on R/N I was fighting to see an endo specialist. I was very unhappy with my regimen, and for some time I had been hearing inklings about another treatment—the Lantus/Novolog regimen; another random T1 I ran into at a party was on it and told me about it. I wanted to learn more, but our medical coverage was through a university HMO and they basically didn’t DO specialists. Instead, I got several years of YDFLNCA: “You’re Doing Fine Let’s Not Change Anything.” Which is doctorese for “Your disease is really complicated and I’m just a GP and don’t want to mess with things I don’t know enough about.” When a career change meant we finally were on employer-based BCBS, we picked a PCP practice with a sub-specialty in diabetes and linked into Joslin. My first endo appointment there, I experienced YDFLNCA being flipped to “You’re not doing too bad considering your regimen doesn’t make any goddamned sense” (pretty much an actual quote), and they instantly switched me to the analog regimen that Changed. My. Life.

Since then, I’ve had another endo at Joslin who nudged me into trying pump therapy, and who later certified my charts as qualifying me for a CGM, and my current endo who has been very open to trying new things, including having me try Jardiance off-label, which has also made a huge difference. She’s also been really helpful and supportive when I’ve had to go in for surgery, putting me in direct touch with the hospital’s type 1 specialist, and has been very accessible by email when I’ve had things come up in between regular visits.

Soooo… Maybe I’m an outlier, but I’m generally VERY well disposed toward the endos I’ve had. Getting off that outmoded R/N regimen was almost literally like being released from prison—still a signal moment in my life with T1. Right now I feel like I have things so under control that, yeah, my visits are mostly just about scrip renewals. But a lot of that is largely thanks to help I’ve received from her.

I DO agree, though, that I’ve learned far more about the practical, granular details of how to do better with T1 from interacting with other T1s. Important to realize: there was NOTHING like this before the Interwebs. If you were dx’d as an adult (I was 28) you were pretty much on your own. I was dx’d fifteen years before I ever met another T1, and that encounter was more informative than anything I’d ever got from my GPs up to that point. So the DOC has made a huge difference for all of us, to an extent you might not appreciate if you were dx’d in the Internet age. Pre-bolusing, other ways of optimizing your use and management of CGM, a million other things that other T1s can tell you about from their day-to-day experience. So my own story is maybe more a history of how much has changed and evolved. My first encounter with the old version of TUD, as a matter of fact, was also a kind of “coming in from the wilderness” experience not unlike my first appointment with a specialist. At last, someone who understands me!

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I made an appointment with an endo when I first suspected I was showing obvious symptoms of diabetes. That was over 25 years ago and I still go to him 3 or 4 times a year.

During the first five years he guided me through the progression from Metformin to injecting insulin as well as prescribing drugs for high cholesterol, high blood pressure, and ED drugs when that became necessary. When One of the blood pressure pills, which was effectively keeping my BPunder control, began to generate unwanted enzymes in my blood test, he took me off and substituted another prescription.

My urologist at one point prescribed testosterone replacement, but after six months, my Endo noticed my PSA starting to rise and recommended I phase out of TRT. At my appointments, we discuss all my concerns, if any, and new medicationS/treatments coming on the market and if appropriate for me. My appointments have never ended prior to all my concerns/ questions being addressed. On several occasions he has called me at night following a blood test to discuss certain results that were unduly out of normal range. I have occasionally e-mailed him with questions and have always received a response within an hour or two.

Diabetes is a hormonal issue and Endos specialize in hormonal problems so I feel more comfortable Seeing a hormonal specialist. Under my Medicare Advantage plan my visits cost $10 so why not.

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In the US, still on private insurance… I make all the decisions about my care and my endo is only useful for one thing, and that is occasionally telling me about a new product coming out. (Like she was the first one to tell about the G6 before it came out). Other than that, my visits serve only one purpose, and that is to satisfy her so that she will refill my prescriptions). So in other words, a very expensive social call. It is difficult to find primary care physicians that will deal with pumps and CGM’s in my experience, otherwise I wouldn’t bother.

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Wow, reading the replies you received I’m somewhat in shock. I have been seeing my Endo every 3 months for near 40 years. And, I doubt I’d still be here if it weren’t for him. 6-7 years ago I started pump therapy, 3-4 years ago CGM. Every visit we review the stats, the A1C, the TIR, discuss things that can be changed and improved. Our time together is never rushed, each visit is usually 1-2 hours long. Decades ago when I fought to get the A1C as close as possible to 7.0 he helped me in reviews of diet, exercise, and overall life style. Stern but always helpful. The past 4 years I haven’t had an A1C higher than 6.6 and my TIR is constantly 80%-85%. I’m in my 53rd year of dealing with this monster. A good Endo will provide insight, suggestions, and guidance on how to live with T1. They’ll share news about technology changes and how they might be helpful. A good Endo is worth their weight in gold!

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I feel so fortunate to have an incredible endocrinologist. The biggest issue I had was that when I started with that practice, he wasn’t taking new patients. Because of an emergency situation (infected site), I saw him and asked if he would be my endo from then on. Here’s what makes him great: he’s immediately responsive - If I email him with any question, I can be sure to get a response within 48 hours. 2. He and his staff provide 24 hour daily coverage - they have access to all my records, so when I have a situation I haven’t dealt with before, whatever doc is on-call is able to access my information. 3. He keeps up on the absolute latest in diabetes developments. He always recommends the newest smartest way to for me to take care of my diabetes. 4. His website is chock full of information. He even has sample appeal letters to get coverage when it is denied. 5. He and his staff know the rules about the insurances and will give their pt a contact number if nothing is moving along. I am on Medicare and its been a long fascinating journey. CVS manages my RX coverage and the drugstore staff kept submitting my pump paperwork to part D rather than part B.* 6. I think it makes a huge difference that my endocrinologist has been a type 1 since he was 8 years old. I had another endo at Johns Hopkins, also a type 1, who was not as helpful as who I go to now. In fact, my current endo is the one who suggested the various websites and blogs I go to, which is actually the place I get the best information from other type ones.

The only issues I generally have is because someone on staff didn’t follow up as they needed to, or followed up and the DME supplier or CVS didn’t follow up quickly enough.

  • (After a year of explaining to the pharmacist to bill “B” for insulin, giving them copies of the regs, giving them copies of the CMS guidance, it finally took me getting pissed off at the CVS staff for them to have a tech take an entire morning following up on how to submit the insulin claims correctly. I haven’t had to pay for my insulin since then. And remarkably, the tech was the daughter of the more junior pharmacist. Her own daughter found out the issues but this pharmacist was still billing incorrectly right up to a few months ago! CVS makes more money when they bill us directly for a copay, so that may have to do with the slowness of the corrective action.)
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I have seen an endo for most of my 50 years. But I have also seen a PA and a NP at times. I like most of us have had some really, really bad ones. But I must say, I have been very, very lucky and have had great ones more than bad ones. And the bad ones, after whining for a couple visits, I make the change.
I was seeing my current endo every 3-4 months but this last go around we agreed that 6 months was good unless I have any issues.
But he is always open to emails, downloads of equipment if I’m having issues, so I am never without connect. I do find a visit with a CDE gives me more time but really only have those appointments when I switch equipment. So when I went from Medtronic to Tandem, I had a longer visit with my CDE and the pump trainer. But at this point in my diabetes career, my endo just confirms what I’m doing is correct and writes prescriptions. But he is very current on new research and has never said no to us trying something different. We did Afreeza which many doctors don’t even talk about. And we tried a type 2 injectable when many don’t think outside the normal type 1 box. And he is always up to date on current research. So when I ask about something, he knows about it. Very sweet, that I don’t have to educate him!
But for me the key is finding someone who works for you. There are some who don’t like my doctor, but we work well together. I hope you can find someone who fits your needs! We all need someone in our corner!

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One doesn’t need to see an Endo for medicare, etc. Just an M.D. who can be a general practitioner.

John

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I am in the US (Greenville, SC). I have had type 1 diabetes since 2016 and started using a tandem pump and CGM within the first 6 months of diagnosis. I have an excellent diabetic educator plus an excellent endocrinologist. The cost of my endo visits is about $300, previously covered by insurance, and now by Medicare plus Part G supplement. My Tandem pump information that I upload on T:connect is shared with my DE and my Endo. It is reviewed in detail by the person I am seeing at the time. My Endo orders labs on a regular basis and reviews them at my appointments. In order to get all my diabetic supplies covered by Medicare, I have to see my Endo every 3 months. I am completely happy with my arrangement. Jane

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I am in Canada which for the last century or so has had universal health care, so cost is not a factor in evaluating options within health care. (As a senior living on my pension I pay no monthly fees for my medicare and all visits to doctor, specialist or hospital as well as medications, therapy, glasses, hearing aids and batteries etc are free. While I was still working I paid about $60 a month for medicare and had to cover part of the cost of prescriptions.)
After my type 2 diagnosis in 1998 I was referred to the diabetes clinic at a local hospital and went through a week of boot camp including an evaluation by an endo. The endo gave me some useful information and a metformin prescription. After a couple of subsequent visits to the endo I gave up on him because all he wanted was to recruit me for drug trials that would enrich him and put me at risk for complications.
Since then I have settled for the excellent care I get from my GP and the occasional consultation with a dietitian. That said I have been able to manage my diabetes through healthy eating and daily walking, and if I didn’t and had to rely on a barrage of medications it would have been a different story.

I had a general practice charge me $250 for a 10 min phone consult to renew a BP med.