Not a law, I think My GP’s in the past decade either didn’t want the perceived legal risk of having written a prescription, or they didn’t want to assume the medical responsibility to adjust my doses if they did.
(Of course I have been adjusting my own doses for 40 years now)
This shift seems to have happened in the past decade. About 15 years ago my GP at the same practice was confident enough, he shifted me from R+N to Humalog+Lantus.
Since then I’ve visited other GPS as PCPs (insurance changes)and they let me know right up front they want nothing to do with prescribing insulin.
Thanks for the explanation Tim. I guess I shouldn’t be so surprised, since it seem like everything is changing. I remember when if I needed to see a specialist, I just made an appointment, Now I need a referral and end up sometimes waiting months to get an appointment.
I am just getting old. I remember when doctors made house calls and just left a bill.
Get/understand your c-peptide results. The number is a surrogate measurement for your insulin production. It may not be “zero” but if it is low, even low-normal, you should probably be on injections. I find it works best for me to send a message to the Dr a few days prior to the visit. I can take my time to say things in the best way and ensure I cover all my concerns. It also gives the Dr time to consider your questions. Don’t be afraid/embarrassed to come out and say “I’m concerned about…” or “I’m afraid of…”. I bring a printout of my questions to the visit to remind me to get them all addressed and I don’t leave until I’m OK with the answers.
When I asked for slow-release insulin, my endo gave me rules for finding the right dose (“if your morning reading is >x, increase by y units”) and a clear point at which I should call (“if the rules lead you to increase the dose beyond x units, call”). This was helpful and empowering.
I’ve used both the alarm-enabled Libre 2 and the Dexcom G6. The G6 “feels” like it’s engineered better but I have found no practical difference in use. The (US) Libre 2 I used as recent as 3 months ago required touching a reader to the sensor and it would not otherwise push data to the reader. It would not work with any phone. It would “alarm” without the touch, though (e.g. in the middle of the night).
I hope to get the Dexcom as I’ve worn a demo one in the past and I loved it compared to the Libre 2. Unfortunately, my insurance won’t approve the Dexcom until I’m on insulin which I’m hoping to start on Tuesday. Though I am nervous because I do have days where my BG is normal but that’s with me essentially eating no carbs. I’ve found I’ve been afraid to eat food due to the spike in my BG. This isn’t sustainable for me personally. I appreciate your input!
@mag1819 Prior to this diagnosis, your experience with doctors was probably pretty perfunctory. “I’m sick, make it better” or “I need this form filled out, so I’m involuntarily at your mercy until you do.”. From this point forward, your relationship with them is going to change. Diabetes is unique from other conditions in that it’s largely self-managed and the patient has to constantly make treatment decisions.
There’s a period with MUCH to learn from them, but after that, they essentially become facilitators because they control the prescription pad. You’ve got to learn to advocate for yourself and what you need. They just don’t have much time allotted to spend with patients, so I suggest you go in with a written agenda. Make a list! Write down what questions you have, as well as whatever it is you need/want from them. If you think you’ll need to justify yourself, then write that down as well. Keep it concise, though!
It is entirely possible that you’re in holding pattern until you can get in with a specialist, though. @Tim12 is right in that insulin isn’t in most GP’s wheelhouse. It depends on what their interests are, and if they bothered to learn much endocrinology.
I only see an internist, not an Endo. The only Endo on the entire Western Slope of Colorado is awful (at best I had a really bad experience with them). My internist GP happily writes all my diabetic prescriptions, though. I started seeing her about 5 years ago. The only condition is that I have to be well self-managed. She told (threatened?) me from the get-go that I’ll have to go back to the Endo if I need more intensive care than she can provide.
Overall I’m THRILLED that she’s not an Endo. She’s awesome enough to have some insights I might have otherwise not considered and make good suggestions, and she’s just ignorant enough to respect my experience and do whatever I ask of her. But I’ve got 32 years of that experience. Someone new might definitely be better off in the hands off an endocrinology team.
Since you’re interested in preserving beta cells, you should definitely check out clinicaltrials.gov There’s a lot of promising/successful research going on with exactly that goal, and they’re recruiting those who’s are recently diagnosed. There’s always some risk involved with clinicals trials, but it’s a great way to be amongst the first to receive beneficial treatments if you’re comfortable with the risk.
Many docs will not prescribe outside their area of expertise. Internists will send you to a psychiatrist for psych meds, a gynecologist for such issues
. That is what I really like about my doc I pick the specialist and she goes along with it. A few times she tried to manage an illness herself and was not great at it. She is a cancer specialist and I had her for many years. I do argue with her about certain meds but ultimately I go to a specialist to resolve the issues. If I can not get an appt to get a refill she will do refills.
When you do start, don’t automatically accept the 50% rule of thumb the many endos and others push. I can’t count how many times I was told my basal insulin had to be about half of total insulin. I’m at about 20% based on basal testing, even less than back when I was on MDI. Bolus depends on carb intake, percentage basal depends on carbs and any fixed proportion of basal just doesn’t make sense.
Good luck. The learning curve is steep, but things will get better.
I remember those days too, then going through the hell process of getting referrals to some useless specialist until my endocrinologist asked me why I was making life so hard on myself. She reminded me that I am on Medicare and I can go to any hospital or specialist I need without any referral as long as they accept Medicare patients. That was the real game-changer for me. Now when I need something, especially a specialist, I just research the best specialists in Boston, make sure they accept Medicare and book an appointment.
They still need a PCP on record, basically as a repository for all my medical records so I do have a local PCP who is a pediatrician. I guess in my mid 70’s I am still young at heart. When I book a specialist, they ask me for my PCP, I give them my PCP name and address, and voila my specialized appointment is booked. I do carry a Medex Bronze plan which for $2700 per year covers me everywhere in the world 100%, and is worth its weight in Gold.
I was also started on insulin when I showed up at the ER with DKA. There was no conversation. When I got to my room the nurse came in and gave me 20 units of regular insulin.
I woke up feeling better. But they were only checking my sugar with Venus blood draws every few hours.
I’ve been on insulin ever since.
My Nurse practitioner does all my diabetes scripts. She is also very on top of new treatments and tech.
She only does diabetes. I will see my endo once in a while but I think my NP has a good handle on it.
@Marilyn6 Medicare doesn’t require a referral. But some specialists that belong in specific medical groups might want you to have a referral to see them. I think that more likely happens when they are backed up with patients within the group already. And any advantage plan insurance has a tendency to require it.
Libre versus Dexcom; I use both as I use the Libre to scan while I’m swimming, the Dexcom is far superior because you can calibrate it. I ended up turning off the alerts on the Libre2 because even at it’s lowest setting, because of it being off in readings, it was always alerting. It goes back into my purse after swimming. Given that I am a firm believer in the LIbre, just not instead of the Dexcom if you have a choice. But the Libre is easier to get covered and cheaper if you have to pay for it yourself. An invaluable tool over just fingersticking, if you need to dose insulin though, fingersticking is still needed in my view because 20-30 points off makes a difference in dosing… And while I poohed the low alert, if it is a choice over not having an alert it could be a critical add for some.
You are now where I was just about one year ago. I was diagnosed as LADA with glucose spikes up to 180 when I went to my endocrinologist and asked to be put on insulin. He first said that he thought my control was still very good and I did not need insulin yet, but I was able to persuade him to put me on a basal insulin. I requested Levemir after reading about some possible links between Lantus and breast cancer (why take any chances?). I started with 2 units in the morning and 2 units at night and gradually increased by 1 unit in the morning every 3 days until I found I stayed mostly in my preferred range of 70 to 140, which required 6U in the morning and 2U at night. I eat a low carb diet. If I ate a standard American diet, I would likely also require bolus insulin. Just in the last month, however, I have had to increase to 7U in the morning and 3 at night. I went on vacation to St John and started noticing higher glucose after returning to the cold in NH. Weather related?? I’m hoping my glucose levels will settle back down and I can go back to 6U/2U, but it might just be progression of the disease. I also have a prescription for Humalog (rapid acting) in case I eat some high carb food inadvertently or get sick. I have had to use it on about 4 occasions in the past year. I have a regular Humalog Kwikpen, but would rather have the junior version that lets you inject in 1/2 units rather than whole units. Based on my diet and still having some functioning beta cells, half units would be better for more precise dosage. Regarding CGMs, I have used both the Medtronic Guardian Connect and the Libre. I actually love the Libre. The Guardian drove me crazy with night time alarms and calibration/couldn’t connect alarms. I could not turn the alarms off and I could not get a decent nights sleep. For whatever reason, I just do not get low glucose levels. The lowest I have ever measured is 64 after exercise and that was once in the past year. I rarely go below 80. So I do not need low alarms and i scan regularly and am very attentive to my diet so I don’t need high alarms either. Maybe in the future, I will need to bolus and then hi/low alarms will be needed. One more bit of info: I have had my C-peptide checked 3 times. The results were 0.8, 1.3, and 1.4. (Normal range 0.8 to something like 4.5). So even though my diabetes has gotten worse over time, my C-peptide has gone up. The last test was last month, after I had to increase my insulin dosage. Doesn’t make sense. The 0.8 was at diagnosis when my gad65 was off the charts (>250). I definitely encourage you to ask your doctor for insulin. Good luck!
If you want to go on an OmniPod, please call Insulet Corporation. Explain your situation, and they will be able to help you get started. I have been on the Pod since 2009, and I have not regretted that decision for a single day. I expect that they will start you with the DASH system, and their materials to learn how to use the system are clearly written. Also ask if Insulet has a OmniPod representative/trainer in your area. They are wonderful about helping people start with the Pod. Good luck, and know that we all are here for you if you need any help or advice.
I was diagnosed LADA ten months ago. On Tresiba basal coupled with once weekly Ozempic (off label for type 1) and metformin. I eat a low carb diet. I initially was on a libre, but I called Dexcom directly and they helped me get a Dexcom under Durable Medical Equipment, not under my pharmacy benefits. I find the Dexcom to be a superior device with more accurate readings that I can also receive on my Apple Watch.
My first endo never mentioned Ozempic at all, ( i am not overweight and do not have metabolic issues), but my new Endo thought it would help and it really has.
What I’ve learned over these last 10 months- it’s a journey and a lot to take in and learn. Don’t be afraid to ask questions and keep notes. I found I could detect patterns and find solutions (especially with exercise) when I wrote it down.
Still learning, and I understand what works for one is not universal. The struggle is real
You really can call them at any time. Of course, you will not be able to USE the Pods until you have a prescription for the insulin and instructions from your doctor on how much medication you will need, but Insulet can send you a starter kit to let you become familiar with the Pod and the whole system. Then when you go in to your doctor or endocrinologist, you can let him/her know that you have contacted Insulet and are ready to begin with the Pod. You have a right to choose whatever delivery system you want to use, so being familiar with the system of your choice should make your transition to insulin all that much easier. As I said, once you contact Insulet, also ask if they have a representative or Diabetic Educator in your area that may be able to give your hands-on instruction on using insulin and the Pod.
Yes, you have a learning curve ahead of you, but you will do just fine. The more you know and learn, the more in control and comfortable you will be.
I know that once on insulin, a person needs to see an endo. However, when switching to Medicare and having problems with getting a new pump, my endo and CDE were of no help, but my family practice doctor took care of the issue. Likewise, it is my family practice doctor who is working to help me get lyumjev. Oh, and the endo is highly respected and an author of published research articles.
Hey guys! An update:
I saw my endo and had a BG of 230 in her office and she could have cared less. I was crying in her office telling her I felt awful and she did nothing. I then called a different endo who got me in the next day and when I got to the office he told me “I’m extremely worried about you and you will be in the hospital in a few weeks in DKA if we don’t do something today”. He got me started on a basal insulin and a bolus as needed with a sliding scale. He confirmed LADA and I had an education course to show me how to do injections. He did labs to check C-peptide. I’m already feeling so much better and my BGs have never been so stable! I’ll be continuing with this endo and I go back in 6 weeks to talk about getting on Dexcom and possible pump therapy.
Good for you for getting in with a new endo and getting proper treatment. Now that you are on insulin you should qualify no problem for dexcom coverage. Good luck!
