Hi my name is Brian and I’m trying to help my wife figure the best route for her diabetes management.
She is 47 years old and 3 years ago she started Keto because of weight issues and was diagnosed as Type 2. Her A1C at the time was in the 10-11 range from what I can remember. She was put on metformin and over the next year and a half she lost 75 lbs, lowered her A1C to 5.5 and was off all meds. Fast forward to last years checkup she was shocked that her A1C had climbed back up in the 10’s. Nothing changed food wise, she still was eating around 10 carbs total a day just like she had been doing. She eats clean unprocessed foods the best she can.
Her Doctor referred her to an Endo which put her on Trulicity (full dose) and Toujeo at 16 units per day. Which increased until she was taking 24 units. She was also taking some pill 30 minutes before a meal but it didn’t help either. Over the last 8 months we have been fighting to get her numbers under control (lots of high events followed by lows in the 40’s that would wake her up in the middle of the night. She’d have weeks of 90% in target followed by weeks of 5% in target with most of her BG numbers being close to 300, no matter how she ate. I’ve watched here go down hill on how she feels and what’s happening to her (hair is thinning, tired all the time, thirsty constantly and of course peeing all night long).
Her current Endo wouldn’t make changes and so the struggle continued until we finally had enough and found a new Endo. We saw him this past Friday, he listened to all of our concerns and made some changes. He said to stop the Trulicity because it looks like she’s not making any insulin on her own (she get’s her labs back today). He tested for GAD and lot’s of other things I can’t remember. Also stopped the pill she was taking. He did say that he thought she was LADA and not a true T2. He put her on Humalog 4x daily as well as lowered her Toujeo to 15 units. He mentioned that she might want to look into getting a pump. She’s a teacher and can’t step out of her room to give shots as needed. She also doesn’t eat lunch very often and will have a snack in the afternoon (low carb) and then eat supper 2-3 hours later (12-24 carbs).
So I’ve been researching options for her and what we came up with was either the Tandem TslimX2 with Dexcom or the OmniPod Dash (I know right now she’d have to manually adjust doses until they get their new software, etc. out).
She is currently taking 35 shots a week and wants to get away from that by switching to a pump.
She’s not apposed to having tubing and would like something that can keep her closer to her target numbers. She currently has the Libre freestyle and is trying to switch to Dexcom.
So there you go, kinda quick run down of what we are dealing with.
I’ve been reading so many reviews, etc on the T slim that it’s information overload. LOL
The tubeless Omnipod is a relatively new addition to the pump options. When I started pumping around 30 years ago a tubed pump was the only choice. I’m used to it, and while it does snag on a doorknob every now and then it’s not a big deal. Going tubeless may be a deal breaker for some. Omnipod lets you try out a “dummy pod.” I checked one or once - nothing actually inserts into the skin and you don’t get a PDM (controller) to try so unless things have changed you get a feel for how it looks and feels on your skin. Tslim has a simulator you can try, and I believe they have a loaner pump - I don’t know any of the details.
I’m glad the two of you have found a new endo, one who listens to concerns and is working with you to make adjustments. It may take a while to see how the changes sink in so don’t get discouraged - much of diabetes is changing, observing and adjusting, with at least a few days of observing.
Pumps are great, and not having to step out to take a shot is terrific. Just keep in mind that while a loop such as Control IQ can adjust for lows and highs it can take some time to get good settings in place for it to work as it’s supposed to. Personally I’m a fan of knowing how to do things “old school” just in case. So IMHO if she does get the pump it would be good to spend some time using it manually before adding on Control IQ. You can use Dexcom’s CGM as a stand alone - showing you your numbers and whether they’re rising or falling, and you can adjust on your own. Then once you’re comfortable step up to CIQ. Think of it as a process.
Your doctor will put you in touch with reps who can answer detailed questions about the devices. If you decide on one, let the reps do the legwork of verifying insurance coverage, co-pays, etc. - it can be daunting to try yourself.
Wishing you the best - keep us posted.
I agree, being able to do it old school is key, just in case. She can’t leave the kids unattended, even if it’s just to step out for a shot. A pump makes sense in this situation for her.
She just got her bloodwork back and her Fasting Glucose was 233.
Waiting on the C-Peptide, GAD and whatever else he ordered to come back.
She’s been hanging around the BG of 180 all morning after her lab work and finally taking her shots. She had her second Humalog about an hour ago. Oh and that’s not having anything to eat today…Yet.
Hello @aftrshok welcome to Type One Nation. The school will need to accommodate your wife. This may be in the form of a classroom aid that is there in case your wife needs to correct, or some other way to cover the class - even if your wife gets low and needs 15 minutes to recover. Lows need to be treated immediately, even more so than a high. Just some thoughts.
You’ve gotten great advice from Dorie (of course!), so I’ll just put in a plug for the Omnipod with Dexcom combo, which is what we use. We are eagerly awaiting Omnipod’s version of the software that does what Tandem’s Control IQ does, but for us, the Omnipod just did a better job of consistently getting the insulin into my daughter’s body. And unless that’s happening, the best hybrid closed-loop algorithm on the planet is no use.
We like some other stuff about Omnipod better, too, though: tubeless, waterproof, cleaner display, and a more intuitive (for us) interface.
Omnipod’s PDM is a locked-down cellphone: lighter and thinner than Tandem’s pump, in no small part because Tandem’s pump is also holding the insulin cartridge, whereas Omnipod’s PDM is just the remote control. The insulin for a pod is in the pod, which is also the pump mechanism itself, which is on your skin directly. That’s the whole “tubeless” part. So that’s one trade off: the site can be smaller and the pump bulkier (Tandem) or the pump can be smaller and the site bulkier (Omnipod).
Happy to answer questions if you have them, and congratulations on firing that first endo and finding someone you can have more confidence in!
Seconding Joe, who also always gives great advice. The ADA was enacted for a reason, and your wife is entitled to reasonable accommodations the same way a student in her classroom would be. That said, people with diabetes (sometimes abbreviated “PWD,” in case you haven’t seen that yet, or have but didn’t yet know what it meant — there IS a lot to learn, and information overload is totally to be expected!) successfully hold all kinds of jobs these days, and accommodating diabetes in the classroom is readily doable. She needs to be able to check her sugar, take insulin, have juice or snacks or water, use the restroom, and otherwise tend to managing her blood sugar at any time, wherever she is. Just like people without diabetes have a pancreas to tend to it for them at any time, wherever they are.
Oh, and yes, old-school skills are wise to acquire no matter what technology she adds in the future. When stuff breaks and the power goes out, syringes will still work, and she’ll need to know how much to give herself!
I couldn’t agree more and she just called to tell me she talked to her principal and he told her to do whatever she needs to do. He also asked if there is anything they need to do in case of a low event, etc. She’s always having to use the restroom but can’t get someone to cover her class. Hopefully that will change after talking to him about her condition.
I think there is a lot of abbreviations that I’ve seen and didn’t know what they meant but I’m learning.
My wife has been so frustrated over the last 8 months with her BG and Endo that it’s maddening. I got to the point that I was really really concerned about her health, still am but at least we seem to be on the right path and with someone who will make the necessary changes based on her numbers, etc.
I’m still doing my research on either the OmniPod or Tandem. I’m getting all the info I can so she can make the best informed decision of what’s best for her. I’m an IT Manager so the tech side pumps fascinates me. I’d be trying to really dial in my BG all the time if I had one, I’m not diabetic. Which leads me to say this about diabetics, I really admire the ones who actually try to improve their health and understand how hard it is to do. I’m not talking about the PWD’s that just eat whatever and randomly shoot up insulin.
Thanks for the welcome!!! My reply above talks a little about her conversation with her principal.
My wife does does and does for everyone, even at the expense of herself. I told her it’s time to take care of herself (she does but doing for everyone else takes it toll) and I will be there to help, comfort, support her in any way she needs.
The product reps are the way to start. They can arrange for your wife to actually hold each of their products in her hands (as well as get her a dummy pod to wear and the Tandem simulator app to play with, as Dorie mentioned), and walk you through whatever the financials would be based on your insurance. In our experience, the reps are very good at getting you the information you need to make an informed decision.
Definitely let us know how it goes. This is a terrific, supportive community, and we’re all here to learn from each other. So, welcome. We’re sorry you’re having to deal with all this, but we’re glad you’re here!
We’ve reached out to both Tandem and Insulet and are awaiting return calls from them.
I’m glad I found this site, it’s been extremely helpful in my research.
One question though, I see people post that are probably my age who just found out a few years ago or maybe 10 years ago that they are T1D. I take it that they are actually 1.5’s or LADA? That’s what I’m gathering based on my reading over the last year and what my wife’s endo hinted at.
you can get diagnosed with T1D from birth to death. T1D is NOT age dependent. There are T1’s diagnosed well into their 70’s. Very old information would have you believe that T1 is a disease only children can be diagnosed with - while common to be diagnosed as children, it is not the rule.
I think a lot of great teachers all have that in common. It is perfectly OK to ask for certain accommodations. I hope she can ask for what she needs for the good of everyone! at the very least a carb source (sugar soda or glucose tabs or gel) is something she needs to have on her person for emergencies. The nurse should have glucagon, Colleagues should be informed. I have had T1 for 42 years, I consider myself an expert in insulin and I still have lows and highs, my current 90 day meter log shows 41 mg/dl low (urgent low) and 285 mg/dl high. Once you are insulin dependent (once you noo longer make most of your own insulin) lows and highs are common. I have a low at least 6 times a week and an urgent low about 1x if not a few times per month.
Just in the last 3 weeks she’s had a high BG reading of 385 (with tons of 250+'s) and 5 low BG’s with 42 being the lowest…always at 4-5am on the lows. And that’s even with eating less than 5 carbs in a meal. At least she wakes up when she has those lows. It really scares her that she won’t wake up.
Brian @aftrshok , the “only children or juveniles” teaching has been debunked years ago. Your wife is in the “perfect age” to be diagnosed with autoimmune [or TypeOne] diabetes - more than 50 percent of newly diagnosed are in the 20 y/o to 50 y/o age range.
I’m not a licensed medical provider and only offer my tips and observations based on what I learned while my living successfully with diabetes during seven decades. An insulin pump will not solve your wife’s issues without her first going back to the basics of diabetes management - on the other hand, a continuous glucose monitor could be a tremendous asset.
With a good diabetologist - often an endocrinologist, her insulin management should begin with the basics observing and learning the intricate balance between total food intake, effects of all activities, and the quantity and type of insulin to effect a proper body glucose level. I firmly believe that a nutrient-filled healthy diet rather than a “special diet” [other than limiting carbohydrate intensive foods] is not needed. In some cases a “special” may do her more harm
In insulin management, “Total Carbohydrate” food intake takes precedence over “Net Carbs”. Both the US FDA and American Diabetes Association have publish papers debunking advertising hype of net-carb theory when it is applied to diabetes management, especially T1D.
She’s been using a Libre Freestyle for around a year now. We have tracked her BG with trying to narrow down what was causing all the spikes and lows before this recent change in meds. It’s been a lot to take in. She’s always gone by Total Carbs when she tracks her meals and not Net Carbs, even when she first started doing Keto almost 4 years ago. So when I say she’s had 5 carbs at a meal, it is TC. I’m finally getting her to eat more carbs and not such a restrictive diet like she did on Keto. I think Keto helped her get her weight off though.
She walks about 8 miles during the day teaching and then walks about 3 on the treadmill when she gets home in the evening. We’ve not noticed any drop in BG after exercise like some people experience.
The ADA was enacted for a reason, and your wife is entitled to reasonable accommodations the same way a student in her classroom would be. That said, people with diabetes (sometimes abbreviated “PWD,” in case you haven’t seen that yet, or have but didn’t yet know what it meant — there IS a lot to learn, and information overload is totally to be expected!) successfully hold all kinds of jobs these days, and accommodating diabetes in the classroom is readily doable. She needs to be able to check her sugar, take insulin, have juice or snacks or water, use the restroom, and otherwise tend to managing her blood sugar at any time, wherever she is. Just like people without diabetes have a pancreas to tend to it for them at any time, wherever they are. 