For a long time, I created detailed 2 week BG records with everything I ate and did in order to prepare for an endo appointment. There were different motivations for doing this, but one of them was to protect myself from getting my drivers license taken away and have really detailed data in case they did yank my license and I had to appear in front of the state medical court.
Now that stuff is all over because state law was changed.
I’m kinda at a loss for what I’m required to bring to a Doc appointment. I adjusted my numbers so that insulin dosages are perfect about a month ago in preparation.
I don’t really want to collect detailed data anymore.
Can I get away with not bringing any BG records to an apt? I haven’t done it. Apt is on the 3rd. I’m exceedingly busy and have neither the time nor the interest in putting in weeks of preparation for this apt.
The endo I have been seeing wants blood and urine labs prior to the appointment. My pump gets downloaded by staff and I do a one off share code from Dexcom Clarity. I don’t do any logs of meals, exercise, insulin use.
I don’t think a primary care Doc will have access to any software to download data. But, you give me hope that this will work out. I think the worst thing that they could do to me is refuse to write prescriptions. I don’t know if they would do something like that. I had had Docs threaten to do that before if I didn’t do this thing for them or that thing. But, this a nice guy and I doubt he would be that extreme.
You can certainly share your Dexcom Clarity software with your doctor. He can download the professional version if he wishes to do a deep dive into your numbers or just use the regular share and he sees the same you see. I don’t bring anything to my visits, my endo just looks at the various indexes in my clarity reports.
For my CGM data, my doctor’s office through NYU has access to the Dexcom site. I ignore requests to bring data as they can access or print it themselves. If they don’t have access - you should check - and if possible, go to the site that collects your data and print it out.
I get all my bloodwork done before I come to the office. I verify ahead of time that there is an order in for tests, with a little reminder that I get a more comprehensive set of tests than they usually order, then get the work done a few days in advance, although NYU gets tests done in one day, and I get the result as soon as they are available.
I don’t take many extra meds and NYU’s Epic system has them all listed, but you might want to write them down it is not already in their system, and you won’t remember them.
I dress in clothing amenable to an office visit, e.g., easy off/on shoes, track pants or board shorts, t-shirt or tank top, and hoodie.
I normally have supplies with me anyway, so glucose packets for low blood sugar, plus pen and meter.
Sometimes it is faster, better, and cheaper to just do your own bloodwork through UltaLabs, Quest Diagnostics, or one of the many other places you can order and pay online and then just go have your blood drawn locally. That allows you to get the tests you want and need. Many clinics and doctor’s offices are stingy on ordering necessary blood tests because internal or insurance policies restrict them. Since reasonable diabetic control requires the management of blood glucose, cholesterol, and atherosclerosis as they all work together, most doctors and clinics do not carefully monitor all three areas. The more our diabetic population ages, the more we will hear about the importance of controlling APOb and other indices rather than we have reasonable BG control, but oh well, we will all die from heart conditions.
PS, it will cost you less, if your time has any value, to order your own A1C than the time you spend calling your doctor’s office for it.
Too late of course since it’s done, but most diabetics do not bring data to endo appointments. Endos ask their patient to go to the lab for an HbA1c before the appointment and the more professional ones ask for the standard “complete” blood panel and various other things (somehow someone asked for a Thyroid on me, an aging white male; whatever, typo, assisto?)
Then the endo expostulates, or not, depending on the HbA1c.
I try to learn what my endo can understand. I do tend to flood them with information, but after a couple of visits and asking, explicitly, what they find useful I have worked out what my latest endo wants (I think).
I have CGM and AndroidAPS data with full (sort of) carb intake. “2 week BG records” is really all my endo wants; no carb info (which, indeed, would be total crap since I don’t write it down.)
The CGMs give them that (the 2 weeks), but I don’t share my CGM information in a way that they find accessible (like, it’s mine.) So my endo gets my printout and is curiously happy with it because the bottom line, my HbA1c, pretty much tells him he has done his job.
One approach that works is to buy the HbA1c blood test kits from WalFoo and use them two months then one before the appointment (there are two tests in each kit, they don’t last). That way you know what to expect.
If your HbA1c decreases expect to be feted as the best patient they ever had. When it increases expect to visit the headmaster. Meanwhile the HbA1c really does inform us much more than it informs our endos; it’s a test we can do regularly and it doesn’t lie, unlike all those CGMs we keep getting sold. This allows us to make an informed decision.
When an endo sits down with someone who has a “low” HbA1c (endo “low”, not us “low”) they relax and you can talk with them about all sorts of things (they have to spend 30 minutes doing it, but stick to diabetes to spend your money well).
This is true, before I got an endo (doctor who it trained in the function of the endocrine system) my PCP said, “Let’s do a thyroid test.” Guess what I was hypothyroid.
I didn’t realize it but I was experiencing symptoms for some time - I would chill easily especially when walking past open top freezers in the grocery store. Also, I had thinning nails.
My endo watches my thyroid levels as closely as he does my glucose regulation.
My usual blood tests are for thyroid function, liver, lipid panel, fBG, HbA1c and those concerning kidney functions. Along with blood test he orders urinalysis. These tests are ordered for each quarterly visit.
Because of some odd results that have been trending on kidney issues with an eGFR in the high nineties we decided that I should see a nephrologist.
I share my data with my doctor. They already know all about my medical condition, I don’t se why my cgm data is any different. It makes my visits easier too. I get wanting to keep it private, but is it really private anyway. I don’t know I mean once someone knows you are diabetic, the glucose numbers just sort of support that diagnosis.
Luckily my thyroid has been steady with no issues, type 1 does not run-in my family, but thyroid issues do.
I think autoimmune diseases suggest our immune systems are whack. So having a second or third is almost expected.
I was diagnosed with eczema early on in my type 1 dx but it hasn’t come back since. I also developed a strong allergy to shellfish and tree pollen after my diagnosis.
It’s difficult to tease those things apart.
Diabetes is a package of issues.
My endo has a URI which accesses NightScout directly; this is all my CGM data, my current pump profile and, before I went full closed loop a few days ago, the carb intake that I supplied to my pump.
I’m not objecting to sharing my data with my docs; I always do that on the basis that they need it to do their jobs and they are governed by US medical confidentiality laws. @mohe0001’s point about the widely reported California expectations that docs notify the DMV of unsafe drivers is valid, though that has apparently stopped. I’ve also lived in the UK and I was not able to get a driver license without pre-approval by a third party doctor chosen by the state so I sympathize very much.
Part of the AndroidAPS exam (objective 3) apparently requires an answer that says you should not disclose your use of AndroidAPS to a doctor (I passed it a while back and I’m a hacker so I wasn’t much troubled by the task). My US, Oregon, endo knows what AndroidAPS is and knows I use it.
Rather my objection is to handing over my data to Dexcom, or, for that matter, Insulet (since I use the Omnipod Dash). They don’t pay me for that data and they don’t pay anyone. Like FaceBook, Reddit, Twitter and, indeed, this forum, Dexcom and Insulet acquire vast amounts of data directly applicable to their business model and directly applicable to diabetes research. But they sit on it; it’s paid for by diabetics and governments across the planet yet somehow it becomes their property without any payment to us?
For those who are socially conscious humans there is the Open Humans project which can be directly enabled in AndroidAPS:
I’m reserving judgement but while I do so I’m not sharing data I own with anyone who is not directly employed by me for a relevant task.
This isn’t about FOSS or the equivalent for other copyrightable works; copyright remains with the authors except for those of us who deliberately put our work into the public domain (doing so is actually quite difficult). This is about copyright; my data, whether it is my BG, my posts or my DNA, is (c) John Bowler.
It’s no problem with regard to health care professionals, or at least not a big problem; ethical rules have been laid down for medical research for many years. It is a problem with regard to Dexcom, Insulet and, most likely, Abbott though I’ve not had any experience with them.
The antibody test will detect Hashimoto’s and (maybe) Graves’ (it’s not clear the antibodies are the same) well before a TSH shows any problem. The test is also very significant; a reported 18x probability of getting Hashimoto’s which pretty much swamps all the other risk factors (this seems to apply to everybody). Hashimoto’s is an autoimmune disorder.
It seems to me that TSH is closing the stable door yet TPO is justifiable. TSH is probably pretty cheap since the insurance companies will pay for it as preventative; the details of what the lab billed seem to have disappeared off their web site (my insurance company paid for the negotiated price of everything because I have just met my OOPMax). That said I believe it is ACA-8294759, billed for $19.80 and negotiated to $9.00.
So it’s really cheap, given than an HbA1c came in at $50/$30(to 1DP), so no point in not doing it, right? But think about this; if you do enough really cheap tests you can make a lot of money.
Where is the TPO test, where is the antibody test? @Luis3 made my point:
I didn’t realize it but I was experiencing symptoms for some time
The TSH test is symptomatic, the TPO test, the antibody test, tells us human beings that it might happen. The cost effective approach (for T1s, and maybe everyone) is to do TPO tests then do TSH tests. The profitable approach, when profit is the motive, is just do do TSH tests as often as possible. Close the stable door after you find it is open.
I share my pump and Dexcom data with my endocrinologist. She is able to review all my data and typically her assistant prints what she wants and then she reviews it with me at every appointment which is every 3 months. I either get my HbA1c at the lab or she does a finger stick test in the office, typically an alternating schedule for where. The appointment would be pointless without reviewing my blood glucose values.
My primary care doctor pretends I don’t have diabetes because she knows nothing about treating patients with Type 1. She literally doesn’t bring it up at all except to maybe ask if I’m still seeing an endo.
California has always had this law, but it isn’t as horrible as you might think. They will only report you if you are losing consciousness or having seizure, whether from glucose control or not. Police and Fire already do that and have done for more than 25 years.
I was reported to the DMV from an ER doctor because I was having pancreatitis. That was not making me pass out or anything, it was just severe pain. I told him I was having a hard time driving to the hospital because I was in pain.
I don’t know if he misunderstood or if he does that as a rule.
I brought my medical record to the DMV and showed them the doctors notes, and it was dismissed. I don’t like sharing this stuff with the DMV, but back 20 years ago we had to, in order to be allowed to drive, and we had to reinitiate it every year and get a doctor to sign off that we are not going to pass out while driving.
They dropped or reformulated the question so that I can honestly reply “no” to the question.
I currently hold a license in California and Washington, and Washington doesn’t ask the same question as California.
Basically “ do you have a condition that might make you lose consciousness “ and I can say no because that has not happened to me in a very long time thanks to cgm.