Hi everyone!
I’ve been a T1 since 1999 and I’ve only just now been able to afford to get a pump. I’m waiting for a Dexcom CGM to come, but, in the meantime, I’m just using my TSlim X2 pump. My endocrinologist started me off taking way less insulin than I need. We got hold of him once and he adjusted it. But, I’m still not getting enough. The thing is, I can’t hardly ever seem to get in touch with him. I’m averaging 220 with my high today around 340. Some days are better than others, but, I know how to change settings, but I’m not supposed to change them before consulting him, but with it so close to the holiday, I dunno if I’ll hear from him, and the nurse at the doctor office said she can’t do anything. I’m only partly posting here to vent, but has anyone had any similar situations? How did you deal with it? Thanks!
They always do this.
Sounds familiar
I would have felt better having you start on the CGM, rather than the pump.
Vent away. Supplies are going to be slow because of Christmas & Covid.
Its been a problem for me, personally.
Could you hold off and not make significant tech changes until after the holidays?
I would’ve rather started with both, but, the supplies company I’m working with told me that I didn’t meet my deductible and I’d have to pay for it all out of pocket. But, then my insurance company told me that I did meet my deductible when I bought the pump. Now I’m waiting for them to approve the claim. I could just not use the pump at all until I get the CGM, but, I’m, also getting used to how it works, so I dunno. It took my doc a month to get my information to Tandem, and then I thought I’d be getting the Dexcom going with that, but turns out I had to go through it twice, once with tandem and once with dexcom, to get my insurance on board. I just want to get the CGM started, but, well, it might be a few weeks, or next week, before that happens. It’s all just frustrating. My AIC was 5.5 in June. Partly because I was having too many lows, but I can’t stand being high because I’m not all that used to it. This is going to blow over, but it’s just…UGH!
I’m like you, Jake. A lot of us are like that on this website.
Your in a tight spot. Its hard because of the holidays.
I think that this is prob the safest thing to do. But, if you can tolerate running a little high, there is value in only changing one technology at a time.
I, personally, could not tolerate running into the 300’s and would prefer to be on syringe insulin over that.
Since you, like me, are prob pretty hyperglycemia adverse, you need to be super careful about those pump settings without a CGM (especially because of the covid stuff - you can’t have a diabetic LOW BG emergency now). Be careful, man, whatever you decide. I’m a litte superstitious about the holidays and medical emergencies, so I won’t advise you to change those pump settings until either after the new year, or you have a CGM and a weeks worth of data. 
Well thank you for listening! I really appreciate it. I may just hop off of the pump until I either hear from the doctor or I get my CGM. My basal’s been way too low and last night I woke up at 2 a.m. with it at 286. I was able to get it down a bit but I’ve been riding around 250 since 9:30. It’s not fun. I wouldn’t want to crash super low and that’s the other concern if I did go back to shots. But, I dunno. I’m thinking that may be the better option because I’ve gone 20 some years now on shots, I think I can handle another few weeks to get to the CGM and have that ready to help make it all as seamless as it should be!
I won’t tell you to disregard what your doctor tells you.
I set up my own pump and adjusted the insulin on my own before I even called my doctor.
My doctor had som suggestions to change my carb ratio and sensitivity but left most of that up to me because I know my body better than anyone else.
Clearly you need more insulin if. You are over 200. You should at least be blousing to correct that
If it’s chronic then you need to slowly increase your basal rates, but the best way to do that is find a new doctor.
Just increase your basal. You can run temp rates until you are able to talk with the doc. I do temps all the time, I haven’t changed the overall settings for ages.
That’s miserable.
If you post your pump settings, we can help…just to double check.
I’m back on syringe after many years and its going just fine (partly because my pump settings were so messed up - syringe insulin has felt like a relief).
Yeah, what I ended up doing was taking a lower amount of lantus to go along with the basal he’s got me on. The doctor wasn’t in the office yesterday. The woman helping me with Tandum has been trying every day to get hold of him, and I’ve called his office at least twice in the last two days. I don’t know what the deal is, but, it’s been rough. Since they want to get some data, I didn’t want to turn off the pump entirely, but I will let him know the amount of Lantus I’ve been using as well. I should get my CGM soon. Going to bug my insurance folks again and see if they’re making any progress on approving the payment.
If I understand you correctly, you’re trying to transition to the pump from a multiple daily injection (MDI) regimen that was volatile with swinging glucose levels. I sense the missing ingredient in this effort is the knowledge needed to set up and then adjust pump settings to home in on your optimal insulin needs.
If it was me in your situation, with an unresponsive doctor, I would switch back to your more familiar MDI protocol and back off a little on your dosing. In other words, maybe take a unit or two less of your long-acting insulin and bump up your insulin sensitivity factor (correction ratio) making it less aggressive. For example if your ISF was 1:30 (1 unit drops BG 30 mg/dL) then set it to 1:35 or 1:40.
Even though you do not have your CGM yet, you do have a fingerstick meter. Is that right? If you want to learn about how your body’s glucose metabolism works, then liberally use your meter and keep a hand-written log of the results.
Have you read any books about using insulin? Think Like a Pancreas by Scheiner, Using Insulin and Pumping Insulin by Walsh, and Sugar Surfing by Ponder are all worthwhile books to dig into. While all our modern diabetes technology is wonderful, real long term success using the tech is dependent on your human software.
I understand that you are a T1D. Is your doctor’s practice primarily T2D? If this is true, then he may not be conversant in T1D dosing techniques. T2D is a different disease and requires different tactics. Perhaps your doctor’s non-response is because of a lack of confidence to offer detailed settings advice.
My personal opinion is that it’s an unusual doctor who will provide the close daily feedback needed to get a patient well started on a pump. Even once per week advice is not nearly enough. When I sensed this non-support early in my diabetes career, I decided that my knowledge was paramount and these moment to moment diabetes decisions were best left to me.
Once you gain the needed knowledge, you then gain incredible insight to your unique metabolism. A CGM is fundamental to this effort but many well-timed fingersticks can help a lot while you wait for the bureaucracy to grant you a CGM.
Good luck! Investing time and effort into your diabetes knowledge will pay you valuable dividends over your life. I’ve personally sensed that my knowledge of my glucose metabolism has left my endocrinologists far behind. I’m sometimes a bit shocked at how much my endos don’t know. But then I realize that we diabetics live with our diabetes 24/7/365 and endos are only on the job part-time.
Thank you for the thoughtful and detailed response.
I’ve read Think Like a Pancreas but it’s been a good two or three years since I did. I’ve been checking my BS at least 11 times a day. I use a Livongo meter partly because I can use as many strips as I want with the meter per month, just about. So, I have been checking a lot more here recently.
I’m not sure what my doctor’s primary practice is. He has his main practice in a different state, and is only near me once a month for a week or so. But, he’s the only endo near me. So, yeah.
I’ve got a good batch of records that shows I’m consistently higher than I should be. I’m taking a hybrid approach at this point where I’m using the pump and injections. But, if I don’t hear from my doc today I may turn off the pump until I do, or until the CGM comes and take some of your suggestions on dosing. Thanks again!
Also, I may read the other books you mentioned and part of the trouble is that I’ve been handling my blood sugar levels myself for so long without anyone’s assistance. I’ve had more lows than I should be having, which is why I wanted to get on the pump/CGM. But, it IS a lifelong commitment. I was awful at checking my blood sugar for the longest time until I realized how bad that was for me. It took a long while to realize it, but, now I probably check too much. I’d rather do that then not enough!
@Jakewriter1, congrats on your frequent fingersticks. Keeping a handwritten log will give you insights you may not otherwise see.
In order to do well on a pump, you need to be able to detect a need to change a setting and make that change when it’s needed. Diabetes is dynamic, not static. Here’s are some items where your knowledge needs proficiency.
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Temporary basal rates
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Extended boluses
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Combination boluses (some now, some later)
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Testing and setting basal rates (good for defeating dawn phenomena, if needed)
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Insulin sensitivity factors, also known as correction ratios (ISF can vary through the day)
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Insulin to carb ratios (also can vary through the day)
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Understanding IOB, insulin on board
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Insulin duration
It could help you while you’re trying to make these adjustments, as you’re learning, to limit your carbohydrate intake. For example, instead of bowl of oatmeal with fruit in the morning, eat bacon and eggs without juice, toast or potatoes. Or a cheese omelette with salsa or veggies if you don’t fancy meat.
@Jakewriter1 I’m the opposite of you really, pump wise, I use my pump for my basal and a syringe for bolusing. Eventually, I’d like to get back to just using the pump, but I’ve been doing this for a few years now. I was having trouble with absorption and this was the best way to handle it.
I wanted to mention, you could reach out to the author of “Think Like a Pancreas,” as he has a practice which works remotely. I “bolded” some text so it would stand out better for you.
Type 1 Diabetes Services
Our team of diabetes educators has passion for helping other adults with diabetes. We know that diabetes doesn’t take breaks or vacations, so we make ourselves available to you above-and-beyond the usual call of duty. Need help preparing for a surgical procedure? We’ll guide you. Having lows during a new type of workout? We’ll offer specific adjustments. Not sure which pump to choose? We’ll direct you to the most helpful information. In virtually all cases, we respond to your questions and concerns within hours, not days or weeks.
Since 1995, Integrated Diabetes Services has helped thousands of adults with type 1 diabetes to do the following:
Tighten A1c levels
Prevent/minimize hypoglycemia
Fine-tune insulin doses (including pump settings)
Transition to pump therapy
Optimize use of continuous glucose monitoring
Utilization of Hybrid Closed Loop Systems
Avoid serious long-term complications
Manage blood sugar during sports/exercise
Improve carb-counting proficiency
Lose unwanted weight
Minimize after-meal blood sugar spikes
Deal effectively with challenges to daily control
Educate partners and caregivers
… and much more!
I have found that my Endo will change my settings whenever I see her and when I use it things get worse. I now make all adjustments myself using the Walsh guidelines to start. I use the tandem X2 with basil adjustments. Good luck!
BRILLIANT!!!
Perfect medium between the two options!!!
When I switched it was done in one day as I recall, took my basal the night before, then started pump with reduced basal on the pump at first. It went very smoothly, I was worried about it. I had a few pump training sessions first and cde and endo set up the pump settings and adjusted them during the transition. .
You’re probably better off working with a diabetic nurse.
John
I transitioned from basal-bolus MDI to a pump about 10 yrs ago, under the guidance of Joslin. Hoo boy were they incremental about it. Which makes sense, up to a point. A pump is not a one-shot dose of Lantus and you can get into trouble. Which is why these days they shouldn’t even be sold without a CGM as part of the deal, and they weren’t standard-issue back then. So I felt much more dependent on the guidance than I would now. But after about 3 weeks of that I eventually just had to take control and start adjusting my basals myself. That’s when I started getting results in line with my pre-pump numbers only without quite so many hypos to get there.
Lessons learned:
- All MDs fear the hypo more than the hyper.
- Even endo specialists see way more T2s than T1s, and can be hyper cautious around insulin delivery systems just out of lack of experience. That goes triple if you’re dealing with a GP, which was all I had for the first 20 yrs (see YDFLNCA in the acronyms glossary)
- If you’re reasonably careful (lots of finger sticks, alas, since you don’t have a CGM), you should be able to get it better dialed in on your own, and once you do the results should speak for themselves when you finally get back in touch with your endo. They really can’t expect you to just be on hold for that long given the numbers you’re reporting.
- The advice of setting temp basals experimentally and adjusting your settings accordingly seems like a great way to do it.
It’s like learning to fly a plane: yes, you can crash and burn but eventually you do have to take over the controls and fly solo.
I have been on a pump for 15 yrs. now and have never really had a endocrinologist to mention. I have a a1c of 6 and work 10hr shifts every day. I feel you could raise your basil by 1 tenth across the day and see how that does for a few days. If good then watch times of higher bg and adjust in those times by 1 tenth. Do this before adjusting you carb ratio. Doctors are good but they arent avalible as you may need. Ive been type 1 for 53 years so i have good background.