I'm all over the place and don't know what to do

Type 1 and LADA
1

It’s taking a lot for me to post this and get so personal about my control, but here it goes. This will be long, so sorry in advance:

I have been really struggling with good control lately. I’ve been on Tresiba for about 1 1/2 months now, and I’m at 17u which is more than I was on Lantus (15 to 16u of that). I’ve been averaging at about 170 daily I feel like, although some days (very few) are perfect and my average is better with no lows.

However; I do well on Tresiba (great morning numbers between 78-100) and steady numbers under 180 throughout the day, but ONLY for the first I’d say 4-5 days on a new dose. I thought I had hit my perfect basal at 17u at night. But now I’m right back to higher numbers.

When I start a new dose of Tresiba, like when I bumped it to 17u, my numbers were steady, my carb to insulin ratio with Novolog went down (1:15 to 20g) and I felt great. But as days go on, I’m having to pump in more Novolog to cover meals (1:5-10g) , and I’ll go to bed with a normal blood sugar (117 for example) and end up 226 in the am for no reason!

I don’t know what’s happening!

Is it possible that the more insulin I take, both basal and bolus, is causing resistance? Maybe insulin is circulating in my system causing this? I read someone post something similar in a comment, and I can’t for the life of me find that thread.

I’ve tried a low carb diet, which hasn’t worked at all and seems to send me high, and I stay high. (but maybe I’ll try it again and again with different foods). I’ve tried cutting animal protein and introducing more carbs (sticking to vegetarian eating) which works for a week, then I’m right back to where I am. I don’t have a set exercise routine but I am active. Days that I clean or run errands don’t seem to make any difference in stability of my numbers.

I’m honestly at a loss at what to do. I see my doc in a week, but I’m not even sure what to say there.
I use mysugr app and my A1C is going to be around 7.7 which is a bummer, but I know I haven’t had a handle on this for a few months, although I’m trying. I’ve never had an A1C above 7, ever. Most of them around 6.7.

I haven’t been sick this month, but previously kept catching colds which didn’t help in gaining back good control. I’m just burnt out at this point, but I’m trying my best to figure it out on my own.

Here is an example of 3 days back to back of my numbers which might help give you an idea. I’ve never been a steady line type diabetic. It was like this on Lantus, but with greater ups and then crashes, and I was about to split dose or increase it, because it seemed to just stop doing it’s job. Then I switched to Tresiba.

Day 1:
-78
-165
-91
-128
-97
-81
-118
-176
-141
-210 (corrected & ate)
-113 (after meal, had ONE bite of chocolate which usually never nudges me if I’m at this)
-240 (had to correct again)

Day 2: (the most steady I’ve been; no over 200’s)
-121
-103
-86
-141 (before lunch)
-82 (after lunch)
-128
-150
-194
-127
-117

Day 3 (next day-all over the place and no idea why!):
-123 (3am)
-138 (4am)
-182 (11am)
-226 (11:30am)
(I don’t understand this climb???)
-151
-124 (before lunch)
-210 (after lunch), at the SAME thing as yesterday, same amount of insulin)
-125
-84
-64
-141
-188
-79 (didnt correct a number like this and had a bit of a climb)
-169 (corrected with 1 unit)
-139

I check so often. I can’t afford a CGM or Freestyle Libre, although I have definitely looked into them. And I’m on MDI. Can’t afford a pump either; insurance won’t cover one.

So I’m trying my best with the tools I have. I’m just at a loss. More days than not, I look like day # 3 but with way more 200’s in the evening before bed. Sometimes I’m cruising between 150 and 200-something all day. I was truly hoping that switching to Tresiba would give me more steady numbers, but that hasn’t been the case for me. I do pre-bolus and sometimes it works, others it doesn’t.

And let’s not forget that the days leading up to my menstrual cycle, and during, all bets are off and I’m all over the place too. Hormones are NOT helping me either.

I am getting bloodwork done and getting tested for other auto-immune, thyroid, hormones, etc. to rule anything out that might be messing with my control, so we will see.

Maybe this doesn’t look so bad to others, maybe it looks horrible.
The months leading up to switching to Tresiba though, I had so many days filled with so many highs that I just couldn’t deal. No clue what caused even more resistance back then; it’s all starting to jumble together.

Honestly, I’ve been at this by myself for so long without much guidance from doctors. They look at my A1C, and say I’m doing great. Last visit 8 months ago (job changes, etc. put me off from being able to get in sooner) my A1C was 7, and all I got was a letter not even from my doc, but the nurse practitioner saying: “We’re not going to change your medications at this time, just keep checking your sugar”
That isn’t helpful. Diabetes control is so much more than just insulin adjustments first of all! And I explained to the doc that I already test up to 15x a day, sometimes more. :confused:

I first saw an endo when I was diagnosed, but he moved away so I’ve only been seeing a PCP since then and that was 6 years ago. I honestly feel like I would get the best advice from those who live with T1D so here I am.

Any positive feedback is greatly appreciated! Maybe there are some tips I can take that will help me out, or at least some insight to know that I’m not alone. Either way, thanks for reading!

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I don’t have the full answer for you but a few ideas that might help.

Number 1 is see if you can get a Libre somehow. They have some discount programs for us who pay cash for Libre. The discount I used gets it down to $65 for reader and $75 for 3 sensors (each lasts 10 days). The pharmacist at my local Walgreens was able to get those discounts for me from Abbott.

Number 2 is more of an anecdote from when I was off the rails and fiddling with basal etc to try to bring night and morning BG down. I posted my problem and somebody replied “What are you eating???”. That was enough for me to get back to more careful carb counting, avoiding fast carbs, avoiding large portions, etc which made it easier to get BG back where I wanted it to be.

Hope that helps…getting a way to track BG (CGM) and adjusting food intake to what I csll “controllable types and portions” of carbs are my 2 suggestions.

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3

I was having similar issues with my BG’s and you seem to be having some dawn phenomenon (Day 3 for instance). I decided to split my dose of Tresiba to see if it got rid of the dawn phenomenon and it usually does, however on the days it doesn’t stop it I will spend the rest of the day chasing highs so I am still working on that.

The thing that sets me up for my best days is waking up with a BG in the 80’s or thereabouts. If I am in the low 100’s when I wake up that usually requires immediate fast acting insulin to prevent a high in the next hour or two. Have you read any of the books that some people on this site recommend like “Think like a pancreas” or Dr. Bernstein’s “Diabetes Solution”?

Have you considered eating the same ting at the same time each day for a while (for instance; An omelette with whatever carb you are partial to at a set time in the morning, but do it for every meal) doing this for a while may help you see a trend more easily.

I hope you get some answers from the tests you are having run because it does sound like there is something going on. Have you had any weight gain? If I gain any weight even just a pound or two my Tresiba dose has to go up with it. I the tests come back negative for anything serious then you may want to talk to your Dr. about going on Metformin. I am thinking about going on it myself for those days when my BG’s just won’t cooperate.

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Thank you! I have definitely looked into a libre, and have read so many posts about being able to get discounts! Unfortunately, even just $75 a month for the sensors would be too much right now. Paying off student loans doesn’t leave a lot of extra for spending sadly. I use so many test strips though. But I pay $45 a month for 200 strips. Maybe soon I can budget for one, I’m hoping at least! I know it would be helpful!

As for eating; that’s the one thing I’ve been on top of 100%. I never eat large portions, or have a ton of carbs in a meal (usually just one carb choice at 40g lately). I’ve been tinkering down my carbs to 15g per meal, because I want better control. I’m still playing around with food, so I’m hoping once I find my true balance, maybe that will help!

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Thanks for responding! I haven’t! I really need to order them from amazon; I keep meaning to but also keep forgetting. Thanks for the reminder, I’ll be doing that today!
As for eating the same thing day after day; I’ve done it. It does help on some days, but honestly I can’t eat the same things every day. I don’t want to be so restrictive with food in that way. I want some variety! So I’m playing around with having the same amount of carbs, maybe that will help. Weight gain; I haven’t had any. I’m a steady 120lbs and have stayed that way since after diagnosis - it never fluctuates.
I’ve also thought about metformin as well if it is brought up. I just figured I’d have to have more resistance to try it? I don’t want to end up with tons of low blood sugar, but I’m also not that familiar with it so we’ll see.

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I’ve been having my insulin requirements and blood sugar values spontaneously jump around for the last 52 years, and the reason is that more factors go into determining the blood sugar than just diet, insulin, and exercise. Countless hormonal and other physiological changes which you can’t measure or anticipate are going on in the body all the time, and all of these influence what your blood sugar levels are going to be. I always eat exactly the same amount and kind of food at the same times every day, and I can go for two weeks waking up every morning between 40 mg/% and 80 mg/%, and then I’ll wake up one morning with a blood sugar of 380 mg/%, for no assignable reason. Sometimes I have reason to suspect it was a bad dream, but how can I anticipate that happening to avoid the morning high?

A university lecture often raises my blood sugar by 80 mg/%, and if the stress of public performance can have that much influence, then that means that emotions are a huge component of the blood sugar profile, and there is no way ever to anticipate how the body is going to react to feelings.

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I’m sorry to hear that, but at the same time it makes me feel better. I often see many people post their lovely, steady graphs, and it can get me down. I do know that emotionally, I get stressed easily which doesn’t help my numbers. I seem to do a lot better on happier days but dealing with depression doesn’t make it all that easy, all the time. Thanks for posting! Makes me feel like I’m not alone in the craziness of BS swings!

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@daisy707 I am certainly not an expert, but is it possible you are having a low during the night and then a rebound high thereafter? My Tresiba dose at first was 80% of my old Lantus dose. Over time (8 months or so) I ended up using the same dose. I also dosed the Tresiba in the am so the spike, even though it’s small, would hit during the day and not at night. I too used to wake up with 2 & 300 BGs after going to bed in the low 100s.

Regarding the Libre, if you have a friend who uses a Dexcom , they can get a FREE Libre Reader and 3 or 4 sensors as a trial. They need an RX and an old Dexcom transmitter number. I have the 800 number to call, and will pm it when I get home later tonight.

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I had to do some public speaking last night and it jumped my BG from 130 to 199 in a half hour so I definitely see this in me as well.

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I don’t think so! I often check at least once, maybe twice during the night if I go to the bathroom. Tresiba seems to be pretty steady overnight which is the one plus I’ve had since Lantus (it was a guaranteed low with Lantus almost every night). So usually, my blood sugar is fine. It will be something like 120 when I go to bed, 120 during the night, but morning for the past couple days is when it starts going up. I’m guessing dawn phenom like other people have said. I’ve never dealt with that so I’m unsure! I’m going to experiment tonight and see if a snack helps. I looked back over my logs and it seems like if I have a snack right before bed with a shot, I’m perfect number wise in the am!

As for a friend with a Dexcom; I don’t know any Type 1’s in real life, so that’s a no go. All my T1D friends are online! lol

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If you can get the Rx from your doctor, I have extra transmitter serial numbers that you can have

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Do you have a regular exercise routine? I find if I miss a few days walking, treadmill or the neighborhood, my BGs will trend upward. I don’t walk for very long, often 40 minutes or less. It’s the everydayness of it that I find important.

I’ll often exercise when a post-meal BG starts to trend up. I know you don’t have a CGM, but I think you could fingerstick identify the best time to exercise after a meal.

I find if I fast, even just missing one meal, my insulin sensitivity goes up. When I fast for a medical procedure, my blood sugar usually falls right into my zone.

I tried Tresiba (I’m a long time pump user.) and found I couldn’t find a dose that gave me a good wake up number without driving the late afternoon too low. If I ever need to go MDI, I’ll likely use Tresiba.

Do you ever use a food scale to calculate your insulin dose? I don’t usually use it, but I find it helps during times like you describe.

Also adding some strength training will help you add a little muscle, a larger user of circulating glucose.

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You are too kind! I really appreciate the help! I plan to talk to my doc about it when I see her. I’ll get back to you on that offer! :slight_smile:

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@Terry4 I don’t really! I did months back, but I kept catching colds and just didn’t have the energy anymore for a structure routine. I do a little yoga here and there through the week and I find that helps! but it’s impossible to really do something every single day for me. However, when I was on a schedule routine I had some of the same issues (on Lantus then), but also had so many lows. I just can’t figure out a balance. :confused: And no to the food scale, I don’t think I would ever use one. I’ve had good control before without, I’m just not sure what’s been happening lately. sigh.

15

I have major problems controlling my BGL if I am inactive or stressed when I have been physically inactive for a few days.

There are not many posts on glycogen reserves stored in your liver and mussels but I know this is one of my major problems why I find It hard to keep my BGL from being in the high range when I am inactive, e;g doing book work.

My insulin sensitivity decreases quickly if I am inactive for a few days and I can be using three times as much insulin after three days of book work. Also dawn phenomenon is only a problem for me if I have been inactive for a few days.

I too was prescribed Lantus when I was first diagnosed 10 years ago but found a change to Levemir gave me much better control.

There is a saying “Your Diabetes May Very” (YDMV) but I say “Your Diabetes MUST VARY” because you are an individual with completely different genetics.

Keep good records but remember stress and inactivity can play a big part in how your insulin works.

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Just a thought…I am still trying to figure things out too…but I noticed in your numbers that you seem to trend higher in the afternoon. Do you eat a meal with more protein and fat than at other times for this meal? I know for me, that the protein and fat will impact my bg later.

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@newbeach I try to be active daily! I don’t have to full on exercise to have an impact in BG, but just cleaning or folding laundry really helps! So obviously, I do those things on a daily basis. If I’m sick and unable to move around much, I do find that I’m higher all day long, not just a few spikes. I’m starting to increase my yoga since it’s calming as well, hoping that will give me a boost for more even #s

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@yeagen I have tried it both ways! I have been eating primarily vegetarian, again, and just having a little bit of normal sausage in the morning. So no; no large amounts of fat or protein. I’ve tried low carb with all animal protein & fat, with no luck. Too much of it makes me sick anyway. I’m not sure what’s causing my spikes honestly. Definitely a question for my doc! I’m wondering if Tresiba is wearing thin on me until I take my shot at 11 pm. I’m just not sure.

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It’s interesting that shortly after the development of insulin in 1922 it was described as a triumph that would allow diabetics to consume a normal amount of carbohydrates. And yet now, more and more patients are turning to a low carbohydrate diet as the only way to control the disease. Similarly, when long-lasting insulin was developed by Hagedorn in the 1930s, the discovery was celebrated because it would finally permit diabetics to inject insulin just once a day. Now, of course, that ‘triumph’ is gone as well.

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I reread your original post Daisy707 and my results are very similar to yours on an inactive day but I struggle to keep BGL out of the Hypo range on very physical hard working days and say to my Doctor “I am not working hard enough if I don’t have a Hypo of 2.8mmol/L (50 mg/dL). He is not impressed but I always know when I have reached this level and I have never reached a level where I could not self treat. My HbA1c is always under 7 but rarely under 6.5

I have had one trial with the FreeStyle Libre which put me out of pocket by over $200. The sensors in Australia cost me $100 each which I can not afford as they only gave 14 days of results for each sensor.

I also found that the scanner when used as a meter gave varying results when compared to the results of my other meters when my BGL were unstable; e.g , after eating , injecting Bolus insulin and exercise. Although this is a common problem when comparing the results of different meters, I found the readings from the Libre when used as a meter were the most variable.

However I did find the results from the Libre very useful. I now will never do a Bolus correction under 4hr before bed as the graphs showed that I can go into the low hypo range between 2 and 4 hrs after the injection. I also found out that a high protein meal before bed did not work for me as BGL would rise gradually through the night even if I had increased my Basal PM split (Levemir). I am a person that can not eat fat and eat very little red meat.

If the sensors do become subsidized in Australia, I would definitely use them to confirm how BGL are trending but not on a continuous basis, mainly because of cost but I know what my meter readings are telling me even if they don’t give the same readings. The readings given by the Libre when used as a meter can be so variable at times, that I would not use it to change insulin injections or do corrections.

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