Hi Karen. I seem to make a little insulin during the hours you list (noon to 4:00 PM). When I’m on the pump, MM522, I turn the basal down quite low. The problem for me is that if I turn the pump to zero basal, the tubing gets clogged at the point that it enters the reservoir. When on MDI, I take 5 units of Levemir at 9 PM, 1 1/2 at 900 AM, another 1 1/2 at 2:30 PM. That means that there is very little Levemir on board during those hours.
Well, so anyway, maybe you’re making a little insulin during those hours as well? I figured out the “problem” some years ago, but never mentioned it to an Endo (I’ve had three). My most recent Endo brought it up himself after checking my records for the last year or more, saying that in fact I must be making insulin during those hours. As I understand the Joslin studies, that’s a good thing!
After 44 years of Type1, I cannot imagine I am producing any insulin, but have never been tested to see. I see the endo at end of May, but I know if I question anything about my diet, insulin dosages, etc, he will send me to the CDE and I am really not interested in doing that.
Kick him to the curb? You (or Blue Cross, Aetna or whoever…) are gonna pay him like $2-300 to tell you to go to the CDE if you have substantive questions, about the stuff where the rubber meets the road and you don’t want that? I’m not sure I’d accept that. I know it’s logistically complicated to change but it sounds like you are at a point where you need a more supportive doctor patient relationship. I dunno if you can swap docs at the same clinic or not but that might be an option. I wouldn’t think that he’d want a patient needing help but it sounds like he’s sort of got a schtick that doesn’t sound like it’s giving you what you want.
I’m not an expert on the CDE process, I know some people like them a lot but I’ve only seen them like twice since 1984.
I haven’t had any tests beyond C-Peptide, etc., that I needed to qualify for my pump. It’s just that the idea of my making insulin during those hours explains why I have to avoid adding any basal insulin at that time. Even so, any exercise during those hours will send me low. (I’ve had diabetes for about 18 years.)
My experience is that endos almost universally toss aside questions about diet, dosing and everday management. They want to get to the real important stuff, like writing prescriptions and doing tests. You know, all that stuff that makes real money!
What you might do next visit is simply ask what your last c-peptide was. Most endos “should” annually or so test you for that, they may never tell you the value. If your c-peptide is not Zero, then you are still producing trace levels of insulin. But also, even though you are on a pump and your basal comes from a “rapid” insulin like Humalog/Novolog, it doesn’t just dissappear. It has a duration of action of upwards of 5 hours and it’s tail lasts even longer. And remember, if you bolused for lunch, that also tails off during the afternoon. Even though you turn off your basal, you will still have insulin tailing off in your body for several hours.
In my view, we are all unique. If you suspend your basal and it works, then you don’t need an endo or a CDE to confirm that it works. It just works.
What you might do next visit is simply ask what your last c-peptide was. Most endos “should” annually or so test you for that, they may never tell you the value.
100% disagree.
Running c-peptides over and over again on someone who is obviously a T1 and being treated like a T1, would be an example of wasteful overtesting.
To make matters even more confusing, turning in a C-peptide that was "too high" might (at some point) cause an insurance company to yank pump supplies etc. It's bad enough that anyone has to run a gauntlet of hard-to-interpret tests to prove they could benefit from a pump in the first place.
Nobody should have to prove (much less repeatedly prove) that they're any type to get appropriate care.
You may well be right, for a long-term T1, this may not be routine. However, I think many endos use the c-peptide to track the progression in T1s. I have been having them on a regular basis. And you are right, the whole c-peptide hurdle for pumping is problematic.
But never running a c-peptide on a diabetic diagnosed 30 years ago is a recipe for not understanding a patient properly.
I’m on medicare but no one told me that. My prescriptions are written by the endo once yearly and I see him twice yearly. No problems.
I’ve not heard about endos testing C-peptide annually. Some never test it at all. I think your doctor is unusual in doing this regularly.
Well, I guess based on my experience, I would have to concur that my doctors have been “unusual” to say the least.
I’m all for using lab tests that are useful. But C-peptide seems about a million times less useful than just talking with the patient and looking at doses and bg test results.
Sometimes docs like lab tests because they don’t trust their patients or this “newfangled home bg testing”. IMHO this kind of doc is not a good choice (distrusts patients and/or doesn’t believe in value of home bg testing.)
At best, C-Peptide is just a hoop to jump through on the way to insulin or a pump, and IMHO it isn’t actually helping the medical process, it’s more done to satisfy the insurance process.
The concept of "progression" in classic T1 is a bit of a misnomer. i.e. patient shows up in the ER in DKA. Waiting for a C-Peptide to treat there could prove fatal. Maybe in LADA it can be useful although I'd rather have docs look at the bazillion other obvious indications (e.g. "geeze she's 25 and lost 30 pounds in the past month and now underweight and peeing all the time, maybe she's not T2 after all"). I'm kinda old-school and not a big believer in many lab tests (although home bg testing, I'm a super huge fan of!)
Please understand, I was not diagnosed in the ER in DKA. There are many LADAs who don’t have a sudden onset. And I do not have absolute insulin deficiency and hope to never have absolute deficiency. My condition is apparently progressing over a period of years. And it has been my understanding that T1s that retain some c-peptide/insulin production are able to maintain “easier” control. I do think that information is of value beyond justifying a pump.
changed my afternoon basal at 00.00 to a longer duration as I was still having lows and today was a good day.
My new quote :if it works, it just works 
Don
After yesterday’s high bloodsugars, I am not a fan of my pump, but I hated shots, but think you can get good results with shots.
I did see the endo recently and he made some suggestions to my pump settings as I have horrific lows late afternoon, well his suggestions helped that but how I have horrific highs, so I am tweaking.
My A1C was awful, sooooooooo…not a happy camper right now. I trust the pump, but I think the sites fail me more and more due to scar tissue.
Karen
Shoot, I am on narcotics and it’s not this hard to get refills!
That is part of my new “rant” script whenever I call Blue Cross “Ok Sherlock, do you think it got better? Yes or NO!!?”
This makes me feel very fortunate to have the Endo I have. His reply to me, regarding my treatment, was “I am here to provide you with the tools to manage your health care, I can help you but cannot treat you except to give you the knowledge and the tools. It’s up to you to treat your diabetes”. All Endos should have this same philosophy!!!
DO realize that the Freestyle Navigator IS available in Germany, not in the USA??
My aunt became ill while on vacation in Thailand and was taken to a hospital. They gave her tests, determined she had an infection, and gave her medication, all for $72. She said the hospital was clean and lovely, the nurses and doctors were polite and thorough, it was the best experience she’s ever had in a hospital. So it isn’t just Europe that has our system beat.
If someone is willing to pay OOP then local availability does not matter. I know US residents who source their Navigators from Israel. Do you know what percentage of German T1s has an insurance-paid-for CGM compared to the US?