Managing type 1 without an endocrinologist

Hello, is there anyone here who is on a pump and cgm that manages diabetes through a primary care physician instead of an endocrinologist?

I’m attempting to make this jump as no endocrinologist has ever had the time to actually help me with anything and I’m sick of the constant struggle (back and forth for days to get prescriptions updated, sitting in the waiting room for hours while the doctor runs late, no appointments ever available, having to hold their staff’s hands through filling out pump paperwork/accessing my pump data, etc.).

My primary care physician is ok with this since I’m in range 85% of the time at this point. She wrote out insulin prescriptions with no issue. The endocrinologist’s office then called to say that insurance wouldn’t allow me to stay on the pump/cgm without seeing them three times a year. (United healthcare is my insurance)

Do you know if that’s often the case? Can’t the primary care review my numbers and run a1c’s as needed?

I believe that you can be seen by someone as low in the totem pole as a nurse practitioner. .

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I’ve been using my PCP for about twenty years. I’ve had no coverage issues.

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I also just see my primary care. She’s an Internist and was the first I’ve found willing to write my scripts, since I can’t stand the one and only Endo near me.

Your insurance doesn’t care what type of doctor you see, they just need to know who to pester to jump through their hoops. So long as your PC is feeding them the info they request, you’re golden.

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As a kid and very young adult I saw nobody but endos for a good long time.

Then I graduated from college, I lost any meaningful insurance coverage (pre existing condition), and did without any doctor (paying for insulin and strips out of pocket) for almost 15 years.

Then I got hooked up with good insurance again. For about 15 years my PCP (an internal medicine doctor but not an endo) worked with me pretty well, and he was confident enough to move me from MDI on R+N to MDI on Analog insulins. I loved working with him and he was my go to guy for a variety of non-diabetic conditions I had in those years too. He was great but when I asked about maybe a pump he immediately ducked out and said I’d have to see an endo for that…

But then he retired from the profession (he became a park ranger believe it or not!) and my new PCP in the same practice made it perfectly clear he wouldn’t help me with my diabetes stuff no way no how and I had to see an endo.

So for past 3 or so years I’m seeing a real endo again, at a large diabetes-focused practice. The practice is large enough they have experts on staff to deal with diabetes technology and insurance paperwork for technology like pumps and CGM’s. That staffing and expertise with the insurance paperwork is really key and I cannot see how a non-endo PCP would have the staff to keep up with that.

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This sounds suspicious. Can you check your insurance documents, or call and ask?

Medicare requires doctors notes every 3 months, but haven’t heard anyone say it had to be endo.

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I agree. This doesn’t sound right.
But, I’ve seen some unusual changes in protocol during covid.
Sometimes I think they are short on cash and change the rules.

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Try an internal medicine doc. I’ve had one before and seemed pretty decently up to date. However my nurse practitioner is really good. She is up on everything new and spends more time that I need on suggesting changes etc

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The only useful thing a doctor does for my diabetes is write scripts. After 49 years, I don’t think there is a lot of info they can give me about daily D management.

I’ve been getting all my scripts from non-endos the past year. It’s been much easier.

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Thank you for weighing in everyone!

It did end up being fishy info from the endo. I called my insurance’s benefits help line and they confirmed the only requirement for coverage of durable medical equipment (including both the pump and cgm) with my plan is a diagnosis.

I’m really not surprised the endo’s office lied to me about this (and I do think they lied - there’s no way they’d not know what the insurance companies they deal with all day require). I’m glad to be rid of them.

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I’m not on Medicare, but I’ve read posts that say Medicare has strict rules about pump and supplies. Must see doctor every 90 days, and doctor must submit specific notes regarding your treatment. You might find other posts on this, or you could start a new one, or others can comment here.

@Terry4 may have details specific to Medicare, although may vary by state.

Once you know the rules, some doctors seem to have good staff/procedures that make it painless, others describe the experience as a constant PITA.

Here is older post on medicare/doctors notes.

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The Medicare requirement of a visit every 90 days is real. That visit does not have to be with an endocrinologist, but it does have to be with someone who knows (or is willing to learn) the paperwork required. My PCP didn’t have or want to learn about pumps / cgms but had no problem writing (and maintaining) a referral to a diabetes clinic at a local hospital. The clinic I use does not have an endo, but does have very knowledgeable staff that handle all the necessary paperwork and provide assistance with my pump / cgm settings.

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You can be seen by any licensed medical doctor. I see a family practitioner twice a year and United Healthcare pays for my omnipods.

John

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I only had an endo when I first got started on pump back in 1993. I moved out of state in '96 and have only seen Internist as PCP and now see nurse practitioner. If you need a lot of support on pump functions, ask PCP to write recommendation for a diabetes educator. I don’t need any pump support since I’ve done it for so long. I don’t use CGM, I chased too many alarms and tested more on Minimed Enlite CGM than non CGM.

I use the Dexcom G6 CGM. Before each Endo visit (during Covid-19 times, via web conference), I upload recent readings and give her office access so her Medicare “notes” are based on facts. Easy to do and not a big deal.

Regarding Endo vs PCP - I trust my PCP, but he is not able to keep up with the latest diabetes-focused technology, and I am more comfortable with my Endo in that regard.

Regarding burden of paperwork on doctor’s office staff by insurance, in particular Medicare, I suspect Tim12 is right: “staffing and expertise with the insurance paperwork is really key and I cannot see how a non-endo PCP would have the staff to keep up with that”. But if your PCP is willing and able, and you trust him/her, then go for it.

I agree with the above- you could also supplement with a diabetes health coach who can help thru the sticky things that an MD of any color couldn’t help with.

Ed - You might try Dexcom. I went from 9 times/day on Enlites/Guardians to averaging 4 per day with the G6.

I have used both a NP and a PA for many, many years and was very happy with both. Of course both had an endo overseeing them but I never saw the endo. There was never a need to.