My a1c hovers right around 5.0 on mdi. No pump. No Cgm. No hypos. I really wish I was this good at something else instead.
I have a dear friend who is long-time T1 and has achieved an HbA1c of 5% using MDI and a CGM. The CGM is really used to protect her against lows as she is hypounaware. But for her, the key is carb restriction. And the major source of blood sugar variation is from the dietary carbs that we eat. If you were willing to experiment with less carbs that might make all the difference.
That being said, there might be another option. Going untethered. You could start a regime of taking a basal insulin such as Lantus or Levemir and set your pump basal to zero. Then you could actually take off your pump for periods during the day without worrying about basal delivery. You just have to be careful that you give the pump adequate time to deliver scheduled insulin before removal and you need to manually make sure you don't stack insulin.
Fascinating.
Thanks for this. I always hover around 6.4-6.8 on the pump....getting to 5 seems near impossible. I've had T1 for 27 years so maybe it's possible that I have no active beta cells left? I really can't imagine getting it to 5 without constant hypos. I appreciate the feedback and will definitely be experimenting!
Hi csb49, Thank you so much for this overview! I am very inspired by your A1C!! It was super hard just to get into the mid-6s so imagining myself at 5 seems almost impossible. I think you said you've had T1 for 3 years...I'm going on 27 years...possibly I have no active beta cells left! Also my endo did a test to check for insulin resistance and it turns out I do have a low-moderate amount of that. Also, my period wreaks HAVOC on my body and insulin requirements. And with exercise I often feel I am shuttling from extreme lows to extreme highs. Sigh. I think going mostly low-carb is key. Your reply gives me a lot to think about! The yoga teacher training I am attending has all meals included (locally prepared food) and it looks absolutely delicious. I haven't looked into local pharmacies yet but your point about US prescriptions is very important. I was just planning on bringing extra insulin and my prescription if I needed it but maybe it's a good idea to contact some pharmacies there just in case. Funny, about 10 years ago I spent 3 months trekking through east Africa and I did NO PLANNING. I just brought a rucksack of insulin and stowed it in various refrigerators until I needed it. Everything went smoothly and I didn't even have any pump problems. I guess now that I'm older and wiser I feel like I need to do a little more planning this time. Thanks again for your reply!
Hi Terrie,
Thank you for this thoughtful response. I really appreciate it. The tip about only injecting 7.5 or less units into one area is something I hadn't considered. Since my Lantus injection would probably be about 10-11 units once per day, I'll need to cut it in half. The CGM definitely makes everything easier although I'll probably set a timer on my phone for keeping track of when to test and also "active insulin" or "insulin on board" that is usually tracked by the pump. Come to think of it, I wonder if there's an app for that? Hm. Thanks again for your comment.
Hi RichardR,
I'm kind of nervous to try Afrezza but it's a good suggestion. I bet my insurance doesn't cover it. I think I'd have to read up on the possible side effects before starting....let me know if you check it out!
Hi angievan,
This was my experience in the past as well....wondering if there is something I can do this time to stay in the 6s....folks here that manage to get into the 5s are amazing. I'm blaming my broken beta cells.
For me, the whole key is the low carb diet. I couldn't either have an A1C in the low 5s or avoid hypoglycemia without it. Not sure what your diet is like... but I can tell you that I'd be describing the same exact situation you are describing if I was eating more carbohydrates.
Hi iJohn,
Thanks so much for this thoughtful response to my post. Funny, I was just wondering if there was an app for this exact question- how much insulin is still on-board? With my Tandem t:slim, I can always see the IOB on my home screen and it helps me make dosing decisions. I'm thinking that with a CGM and MDI, I would really miss that information. Do you know of anyone that has made an app for this? Would be interesting to be able to track it some way, maybe using my iPhone. I wrote to another poster in this thread about a trip I took 10 years ago to east Africa. On that trip, I was using a Medtronic pump, no CGM and a rucksack of insulin that I carted around and stored in safe refrigerators. My back-up then was a bunch of Lantus and syringes. I suppose my back-up this time will be my pump. Besides not wanting to be tethered to something while I'm learning handstands in Costa Rica, I didn't want to add all of those pump supplies to my luggage. I might just have to deal with the MDI once I'm there...or deal with extra baggage with the pump. I guess I need to do more research. Thanks again for your comment!
Funny, I met with a nutritionist last week who also mentioned going lower-carb- to avoid hypos. I've been vegetarian/vegan for awhile so low-carb is difficult for me. Lately I've expanded to a more pescatarian diet. If I could just get over my issues with meat, I'd probably do a lot better on low-carb. I was reading Bernstein's book and his low-carb approach just seems so severe to me. Do you eat extreme low carb? Or are we talking limiting to a certain number of grams per day?
I don't consider my diet extreme low carb-- but I generally only eat any appreciable amount of carbohydrates with 1 meal of the day., sometimes 2. And when I do I only eat any significant carbohydrates I limit them to a very few specific sources from which I know exactly what to expect. Probably generally eat less then 50g/day. Sometimes maybe as much as 70-80, maybe more on special occasions... sometimes close to zero, other than what few and insignificant ones might be found in vegetables. Actually I guess it sounds pretty extreme when I actually type it out.
I get most of my calories from meat and other protein-- I could not do the vegetarian thing and balance getting enough calories (many of which would have to come from carbs) and control-- just couldn't
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I'd say I definitely eat 60-80 per day...I'm going to try to bump down to <50. I have a list of veggie proteins from my nutritionist that should help. And of course the occasional fish.
I've been T1 for 26 years. I've never been on the pump because I see less advantage until they come out with Ultra Rapid Insulin for it. I'm experimenting lately with Injecting Lantus twice daily at half the dose each time. I'm finding Lantus doesn't truly last 24 hours evenly, for me at least. It's a little early in the experiment, but it seems to be improving things so far. I think Lantus twice daily at the exact same times (say Midnight and Noon) with Afrezza and CGM would be better than a Pump with Non-Ultra-Rapid insulin. Read the posts on here by MikeP regarding Afrezza. His blood sugars are flat lining after meals with ZERO Hypos. Afrezza is the new magic weapon for Type 1's. I think it effects Type 1's better than Type 2's.
In the US Healthcare system, absolutely. It's nonsensical, but just the way it is over here.
I wanted to add some more ideas. I was diagnosed in 1987 so we have the same level of experience with the nature of T1. Like you I have no active beta cells left. I have no c-peptide result to verify that. I just derive that from the steep rise after forgetting my insulin injection once in a while - 90 to 300 mg/dl and more in a short period of time is no problem. With the old Acctrapid (Regular) I always had post meal spikes of 220 mg/dl. Mostly because in my work schedule there is no time to wait for the insulin to unfold its activity. With NovoLog (or NovoRapid as it is called in Germany) this changed significantly - even more after adding Levemir. Before this change I was sure that below 6 would be hard to achieve. Still I think that I am in a cluster of T1 diabetics with some advantages at hand:
I am below normal weight and my muscles respond really well to activity. This means my insulin receptors are very sensitive to insulin. Thus my sensitivity is -50 mg/dl per one unit of NovoLog. My carb intake per day varies but on average I eat 100g of carbs per day. In contrast to your eating pattern I will eat 40 to 50g in one meal if I like to do so. I am not afraid to inject huge dosages. In my experience my NovoLog is now fast enough to even catch a glass of orange juice right after the injection. Here my insulin sensitivity really pays out. As a software developer my activity level while working is very good to predict. This makes it more likely that I can successfully use experience from the past to improve my handling skills for meals: failures in the past are the fundament for success in the future :-)
While many of these things cannot be changed I would still like to point the following out: if one of your problems is reduced sensitivity to insulin then adding a low dosage of Metformin might overcome this issue. Metformin will moderate / reduce the continuous glucose release of the liver. Less glucose in circulation > higher effectiveness of insulin > with less glucose available the cells usually react with insulin receptor up-regulation making the receptor more sensitive to the insulin molecule. Sport might have the same effect but the effort to get there is much higher. In contrary the sport might even give the liver the incentive to release more glucose per hour before you have built up enough muscle mass to compensate that. It is a balancing act and thus I think that Metformin might have more immediate and causal results. I think you will need your doctor's support to add the diagnosis codes for insulin resistance to get this additional treatment.
On the carb consumption I tend to eat carbs that are easier to digest (potatoes, rice, pasta, bread). With lots of vegetables I will absorb their carbs over longer periods of time. Thus they are hard to handle with my quick acting NovoLog. With a pump I could use dual waves but on the pen this is too complicated. For example I will eat pasta (uncooked these are 100g of noodles). These are around 74g of carbs. For that I will inject 74/6 = 12.5 units NovoLog. This is a high load of insulin. It could potentially lower my glucose level by 12.5 x -50 = -625 mg/dl - according to my sensitivity. But surprise the result of this bold approach is: a) no spike at the 2 hour mark, b) tendency to scratch below 90 at the 4 hour mark. This way it is easier for me to handle than eating slow absorbing carbs that are hard to predict. Again, this is my individual response and just food for thought.
Before this all sounds too picture perfect: please take a look here. It is a struggle and it needs attention, care and permanent adjustments...
Hi RichardR,
Wow that is exciting. Flat-lining after meals? It seems I can only flat-line when eating things that are 0 carb and I mean ZERO. Will def look into Afrezza. Does splitting the Lantus affect Dawn Phenom? I have a really bad DP and when I was on once-a-day Lantus before I would have hypos all day from too much Lantus then spike to 250 around 330AM/4AM. Nightmare.
@ iJohn wrote: Have you considered what you might do if you switch to MDI and you feel it is not working for you? Do you have a backup "plan B" for that? It seems like something to at least think about before you are in Costa Rica. At the very least consider trying out the switch to MDI for a week or two before traveling just to give you time to settle in and be sure it's working for you.
I wholeheartedly agree with conducting a trial before you head off to Costa Rica where your resources for dealing with unexpected negative results will be far fewer.
Also, I am wondering about the whole premise of your MDI v. pump question. Certainly there are those on MDI who have achieved excellent A1C results, but your experience is what matters. It seems as though you are getting good results with pump therapy. Are there other alternatives for you to consider?
As someone who has done everything from (very basic) yoga, to intense exercising in rainforest hikes, sailing, white water rafting, biking and scuba diving, I have always found a way to accommodate my pump. Sometimes that means disconnecting for 1 - 2 hours, other times, that means using a spibelt to keep the pump as close to my body as possible. I am very certain that I couldn't have done these things without the dosing flexibility offered by a pump.
I view my pump as a tool to help me live my life with as few modifications as possible.
Have a great trip
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I think we're pretty different. The easy carbs you mention: potatoes, rice, pasta, bread...send me shooting up to 300+ very quickly after eating them. For that reason, I try to avoid most of those foods...except bread....because I love bread. But I know when I eat bread I'm going to be super-bolusing and correcting later. As for Metformin, yes, I know about Metformin and I'm on Metformin, 500 Extended Release 2x per day. It did increase my insulin sensitivity somewhat but is nothing to write home about (for me personally). I maybe take 5-10 units less per day since starting it. I am thinking of increasing my dose with my doctor. I think maybe we have different body types and metabolisms. But thanks so much for your input!!!! I appreciate all the ideas.