Hello all! I have been type 1 since 2014 and my A1c’s have been in the low to mid 5’s consistently (no honeymoon period since tests showed I had absolutely no beta cells). I have always been on a low carb diet, but about a few months ago I stopped eating anything with sucralose in it and replaced it with monk fruit. At first my numbers were going low a lot during the day except for my morning number. Please note that I always have had higher morning readings (Dawn Phenomenon), but not usually higher than 150’s (and I would bring it down quickly with a shot of Novolog). NOW (on an even lower carb diet), my morning readings have been 200-260 (yikes!), but the rest of the day my numbers are in the low 100’s or 90’s with some lows. I thought it was the Somogyi effect (always having night sweats), so I lowered my night time Levemir to 7 units (taking 8u in the a.m.). My numbers went even higher (260’s). So, of course, I went in the other direction and increased night time Levemir from 8u to 10u and next morning number was 98 (yay!), but next two morning numbers were again ~200 (crap!). I am 5’6" and only weigh 112 pounds, so feel like I am already taking a lot more insulin than others my size (especially since I am on a very low carb diet). Has anyone ever had this issue? If so, did you figure out how to stop it? I do not want to go on a pump, so I prefer to handle this “manually”. I am 48 years old, so wondering if perhaps I am having some hormonal changes (starting menopause perhaps). Just frustrated to eat baked chicken and a salad for dinner with a number around 100 before going to bed, only to wake up to a number in the 200’s! I joke that maybe I am sleepwalking to Dunkin Donuts or something!:)))) thanks!
hi @krit138, welcome back to the forum. just a quick opinion, this is very hard to do without a pump because your actual basal insulin requirements will vary throughout the day and night, and the best you can do with a shot is a constant basal rate across the same timespan.
Also, even in ketosis, you need that insulin or your blood sugar will go up. also and this may be unrelated, if you are dehydrated, your blood sugar will be very difficult ot predict.
the right amount of basal is what keeps you from rising or falling, it doesn’t matter what that number is.
cheers good luck!,
Hi @krit138 and welcome back to The Forum - it is a long time since we’ve seen you post.
Change, change, CHANGE. Yes, you had a nice long run, four years of being able to effectively manage your diabetes, BUT … The human body, especially with autoimmune diabetes, is continually changing and it could be hormones. It may be time for you to totally review your insulin regimen, coupled with your food-intake, and activity levels. I note that your AVERAGE BG, based on your lower 5’s HbA1c, is less than 95 mg/dl over a 90 day period, 24 hours every day, so you may be experiencing some hypo events of which you are unaware.
One thing that you might want to try [I’m NOT a medical doctor, but I have 60++ years managing my diabetes] is extended fasting for 18 hour periods on days/nights of your “usual” activity, use only your background [Levemir] insulin, and check your BG every 2 or 3 hours and see how close you are to your desired target. Keep good notes and if you find yourself going too low, eat and then try doing the same “validation” on another day after adjusting your Levemir dose. If your BG goes too high, it may mean that you need to increase your Levemir.
I understand what you are saying about using a pump - I resisted using a pump for 47 years; but now, after accepting a pump just over 15 years ago, I am able to micromanage my diabetes management.
hi Joe! I do drink quite a bit of water, so don’t think I am dehydrated. I do realize that a pump would be helpful, but I just prefer manual shots (I am stubborn I guess:))) I have been able to get my numbers under control when I first got diagnosed (my numbers were all over the place) and again when I started experiencing DP, so I will try again. Thanks for the input!
Hi Dennis! over the 6 years since I was diagnosed, I had issues now and then, but I was able to figure out how to fix them fairly quickly. I do test my bg a lot throughout the day, so that has helped me keep my numbers on track (very few lows and very few highs until recently). I definitely feel when any lows are coming on and I get them up before they go too low. (I also have a “diabetes cat” who seems to wake me up if I go low in my sleep and he hasn’t done that lately). So now I am high in a.m. only and then normal to low throughout the day. I have always been good with same amount of Levemir in a.m. as p.m., but now with 10u pm and 8u am, I am still high in morning, but going low throughout the day. Arg! Guess I will try decreasing my morning dose a bit and see if that works (at least for my day numbers)…still have to fix that morning high. I will try your fasting suggestion and see what happens (won’t be easy…get really nervous fasting). thanks!!!
Although pumps are considered the best tool for managing Type 1 - especially when used jointly with a CGM - not everyone wants one and some people keep great control on injections. Your A1C in the 5s is excellent - not to mention admirable - but many doctors like their patients to stay in the 6s - maybe even on the higher end if they suffer from hypoglycemic unawareness. That may not be an issue for you, but if your A1C heads to the 6s don’t panic - talk with your doctor and see if s/he is okay with that range and can put you at ease about being there.
Even so, you obviously want to get those BGs more predictable, as they were before. A few thoughts come to mind of things you could look into.
- Since you said it might be hormonal it might be good to check in with your ObGyn or perhaps see your PCP for physical if you’re due for one. They may be able to pinpoint what’s going on and develop a treatment plan that might help level things out.
- A consult with a nutritionist might be worth looking into. You’ve been on keto for a while and obviously know what you’re doing. I find that familiarity sometimes makes me a bit neglectful because I stop being consciously aware of my choices and slip up without realizing it. So you could be doing something subconscious that you’re not aware of, and a review with your dietitian may reveal something. Not accusing - just a suggestion.
- I do find that I have to change some of my basal rates in the spring and in the fall - something about the weather apparently. “Tweaking” is much more precise with a pump than with injections. We managed before pumps came out, although your numbers may not get quite where you want them.
- Everyone is feeling stressed given the situation with Covid-19 - I handle stress very well but have discovered I’ve let some things slip. If you’ve had to change your routine as many people have, or are simply wondering what’s down the road, that could result in erratic blood sugars as well. Learning good stress management is key so experiment to find what works for you if you think that could be a factor.
Wishing you the best. Keep us posted on how things go.
Hello wadawabbit! My endocrinologist is always asking me if I want to go on the pump and I am always telling him “no, thank you”. I do realize that it would make things easier, but I just don’t want to have to have something attached to me 24/7. I also don’t trust them and that will make me paranoid all the time. I wore a CGM for 1 week and I hardly slept because I was constantly worried it would fall out (I move A LOT in my sleep). My doctor knows how strict I am with my bg’s, so he has been happy with my lower A1c’s (he is also fine if they are higher, but knows I work extremely hard to keep them in the more normal range). I have blood work in a few weeks, so I will see how these very high morning numbers affected my A1c.
Thank you for all those tips! I am very strict with my diet, so I don’t think that is the problem. Like I posted earlier, the only change I made is getting rid of all sucralose containing foods and now only use monk fruit as a sweetener whenever I eat anything “sweet”. I stick with mostly meat, only small amounts of berries for fruit, and low carb vegetables only (with nuts and/or cheese as a snack). I eat keto ice cream as my only “dessert” (doesn’t even require any Novolog when I eat that).
I haven’t seen any changes in my numbers with seasons, but I live in FL so there isn’t much of a change in the weather from month to month.
My life hasn’t changed much due to covid-19 since I am still working (work in an R&D lab, so cannot work from home). I am always stressed, so the virus hasn’t made me more (or less stressed).
This all happened “out of the blue”…went from great numbers to horrible morning numbers in a flash (no gradual incline), so it was startling. I will have to see what my hormones are up to (besides having night sweats every night, I feel hot all day long too. Thought they were hot flashes, but hot flashes are only supposed to last a few minutes).
So, I will keep everyone updated on how things go. Hopefully I can get this figured out sooner than later. thank you!!!
I understand. I don’t want to push you to pump - Lord knows my doctor talked to me about it for at least a couple of years before I took the plunge. I’ve never looked back, but that’s just me.
To address a couple of your concerns though - yes, you would be attached 24/7, which people adjust to, to varying degrees. There is one called Omnipod which is tubeless and uses a remote control rather than buttons. Pumps have to conform to strict performance standards, which I’m sure you appreciate in your line of work. I’ve been pumping for 20 years and have never had one go haywire and say deliver too much insulin. And if I somehow forget that I bolused and start to double up, I can stop it quickly and eat some carbs to cover any excess. I’ve found user error is the cause of most pump problems. I do have pens as a backup but have never used them due to a pump issue.
I’m a “rotisserie sleeper” and move around a lot myself, but that has not pulled out my infusion set or my CGM. The tape will start to lift off I leave them in too long (I sometimes try to get a few extra days) but as long as I press the tape securely and remove any air bubbles they stay secure. Some people do find they need something extra and use skin tac or medical tape over it. If the CGM were to come out - or if somehow it lost contact because you were sleeping on it the wrong way - you’d get an alert.
I just thought I would share that in the albeit unlikely case you ever thought “hmmm🤔… - maybe I’ll take a look.”
Wishing you the best in solving your mystery, and thank you for your front line work!
I know that my endocrinologist is REALLY going to be pushing the pump on me now with this problem, but I will have to stand firm. I have looked into a pump before, but I have several reasons to not want to go that route. 1) don’t want a constant reminder of being a type 1 diabetic 2) paranoia (like I stated before) 3) since I am a hot sleeper (and I roll around a lot), I don’t wear pajamas, so where would I put the pump? 4) call me strange, but I like doing the manual injections…I feel more in control 5) I work with dangerous chemicals/explosives and would be afraid of bringing a pump into the lab when I am working (I don’t even like to bring my phone in there).
I do understand the benefits of wearing a pump and if I absolutely cannot get that morning number down with manual injections, I will reconsider. thanks so much for all your advice!
Definitely go with what is best for you - peace of mind is a big part of that so if you prefer injections by all means stick with them (I couldn’t resist that pun). We managed for years - decades - before pumps came out, after all.
So the key will be determining what’s causing your symptoms and highs. Hopefully you and your doctor will be able to get to the cause and find a solution that fixes the symptoms and gets your numbers back in line. Keep us posted, and stay well my friend.
Just a possible explanation for your high night time readings: Did you increase your supper protein when you started Keto diet? Many people don’t understand that Keto diets is that something like 45% of the calories convert from proteins to carbs to fille the need. These happen very slowly since it’s a conversion process, and may result in higher levels during the night.
Hi tedquick,
No, I didn’t change the amount of protein I eat for dinner. The only change I made for dinner was to get rid of the Carb Smart ice cream I ate for dessert since I quit eating anything containing sucralose. Other than that, my dinners haven’t changed.
I did just do the “check your bg in the middle of the night” thing Friday night (number at bedtime was 96. Number halfway through night was 95, BUT for the first time in weeks, my number was only 120 when I got up instead of in the 200’s (go figure)). I didn’t check my number halfway through last night and woke up with bg of 200. Wtf???
@krit138 Most people, not all people but most people need more basal between 2 am and 9 am. You are on a basal that can’t be adjusted between those hours so you will have not enough basal and be high, or too much basal and then you’ll be low.
My guess for why it was better the time you were testing at night is around sleep patterns. My normal pattern is I need more basal after 2 am. If I have an interruption this temporarily goes away. For example, On weeks when I am traveling out of my time zone that goes away. For me if my sleep pattern is interrupted, that early morning insulin thing is also interrupted. Then it goes back once I get back on my normal schedule. Good luck.
@krit138 - have you ever considered testing your blood ketone levels to have an understanding of what level of ketosis you are in? Being in strict nutritional ketosis can have interesting hormonal effects, particularly for T1Ds. The presence of ketones in general can stimulate hepatic gluconeogenesis and since your insulin levels are lower at night, that can have a compounding effect on your BG, particularly with rising cortisol levels in the morning.
I’ve spent a good deal of time experimenting with varying degrees of ketosis and the most stable BGs I achieve are when my ketone levels stay between 0.2 - 0.8 mmol. This seems to bring a good balance between competing hormonal effects from ketosis and the benefits of being low carb.
Hello Cameronforbes, I haven’t tested my ketone levels lately, but I will definitely have to try that. I still haven’t had any luck with adjusting my basal insulin (went up +3 units at night for a total of 11u Lev in pm and number still 200 when I get up (with 90’s in middle of night). Frustrating when you increase your insulin and the morning number stays the same. Problem now is 200 in am, but lows during the day, so don’t want to try going up any more. I will get some new ketone test strips and see where my levels are at. thanks!
Hi joe, I have always had the dawn phenomenon, but high morning numbers were never this high (highest would be 160, but normally in the 140’s). Alarming that they all of a sudden are hitting 200’s. I tried testing again Sunday night and my number was 121 before bed, 99 at 4a.m. and then 200 at 8. So that time the interruption of sleep didn’t change my high in the a.m. Last night I gave myself 11u Levemir (up from my normal 8u) and went low before bed (58), so had to eat some peanut butter to get my number up before going to sleep. This morning my number was 140, so better than the 200’s, but I cannot keep the Lev. at 11u if it will make me go low before going to bed. I also once again woke up drenched with sweat and having a massive headache (which I have been experiencing every morning which was why I thought I was going low during my sleep, but my mid-night bg readings have been in the 90s, so lows are not the case). thanks!
Hi again @krit138. You said things started changing sometime after you switched to monk fruit. It may be coincidence, but I wonder if something in that particular sweetener is affecting you? I’m sure you’ve studied it and know far more than I, but a which Google search did that - while monk fruit did not affect blood sugar (I assume they mean in a pure version) some monk fruit may contain other sweeteners - the irony!
Just something to research if you haven’t already.
I get it. This is the difficulty. This exact thing is why I don’t use long acting insulin. Sorry you are having trouble.
Hello wadawabbit, when I first went off all sucralose and switched to monk fruit, all my numbers went down (sucralose always affected my bg’s but of course was better than real sugar). I now have to give myself less Novolog whenever I have a meal. Now I am not eating too much monk fruit at all (I was eating keto pancakes every Friday night (with monk fruit) and adding monk fruit/erythritol to my espresso, but not now)…the only monk fruit I am eating is with Rebel Ice Cream (keto ice cream). That has monk fruit and erythritol. I have done testing to see how much it affected my bg’s and it hasn’t done anything at all to them (no rise after eating the ice cream).
I’m reading all the suggestions and they’re helpful. My daughter has this issue. She goes to bed in range I split her doses she gets a shot at 8 pm and another at about 330 am but by 330 she has gone up . Its very frustrating she’ll be fine for a couple weeks then back to the madness