Newly diganosed and mystified

Newly Diagnosed
1

Hi,

This is a bit long, thanks to anyone in advance for reading. I was diagnosed with T1D in July. I’m still trying to figure out a good basal insulin level and the right carb ratios for bolusing. One issue I’m having, for which I can’t find much info when searching the net, is a glucose rise or spike four or more hours after finishing a meal. For example, last night I finished dinner around 7:20. One hour later my glucose level (I use a CGM) was 160, then over the next two hours it went down to 90. I thought “ok, doin pretty good.” Then it shoots up, at one point very rapidly (two arrows up), so that four hours after eating it was 236. Why am I spiking this much four hours after eating (this is not the first time, just one example of a common trend I can’t figure out how to fix or why it’s happening)?

Also, I’ve beein trying lowering my basal and upping my boluses because I keep risking hypos overnight as well as going up over 180 after eating. So yesterday I took 11 u. of Lantus, down from 12 a few days prior, which was down from 13 a few days prior to that. So I think, “ok, I’ll correct this 236 with 0.5 u. of short-acting,” which in the past has always made me go hypo overnight, but I thought with less basal it wouldn’t. Wrong again. At 2:30 I was down to 77 (not hypo yet but it was trending downward so I had 8 grams of sugar).

I really don’t understand these numbers relative to what I am doing and what I’ve been told to expect (e.g. a spike only two hours after eating; short-acting insulin only taking glucose levels down 50 mg/dL per 1 unit.; etc.).

What is possibly causing these very late spikes/rises in blood sugar, and why can’t I correct even just with 0.5 u. without going hypo?

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Hi @BKN480. A couple of thoughts come to my mind - since you’re new I suggest you call your doctor to discuss:
Sometimes people find that fatty foods cause a delayed rise in blood sugar. Not to criticize or critique your food choices, just putting that out there. There is also a factor called the glycemic index: despite their carb count, some foods cause a spike followed by a fall, while others cause a gentle rise that levels out. Your nutritionist should be able to give you guidance.
As for the drops after a small bolus, you may be stacking your insulin. It looks like you waited a couple of hours before taking some additional insulin, but it may be the insulin you had on board hadn’t finished its work, as it were. You might discuss with your doctor the possibility of changing your insulin duration, or they may have you wait a little longer before correcting. My doctor told me to wait 3 hours - I trained myself to not look at my numbers over that time, and to wait if I got an alert. To my pleasant surprise, it worked! That’s me though - again, until you have more experience you should run things by your endo.

1 Like
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Thanks for the reply. I’m pretty sure it’s not a fat issue. I’m vegan and eat hardly any processed food. I cook my own dinner every night with whole foods. I had some vegan mayo on a basically no-fat sandwich (w/ homemade bun and homemade seitan), plus some carrot sticks, half an orange, and half a kiwi. Also, I took the extra (mere 0.5 unit) short-acting insulin when my glucose spiked, which was 4 hours after I finished eating. I’ve looked a fair amount into the whole glycemic index thing - can’t seem to glean any reason for my late spikes from that. But anyway thanks again for the reply, it really is appreciated!

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hi @BKN480 welcome to Type One Nation. 2 thoughts come to mind. it is really common to still make a little insulin, especially right after diagnosis, which can be intermittent and frustrating. the reason it can be frustrating is that you may be able to correct a high blood sugar with a extremely small dose of insulin on Tuesday, and on Thursday it might now work at all. The first year or so for an adult T1 diagnosis can be like this. Basically there is no “right basal” if you are sometimes making insulin and there is not right bolus either. This is time where you can watch trends and correct for highs and lows but you won’t have exact outcomes all the time.

the other thing is you have to be aware that your liver can be (possibly) dumping sugar into your bloodstream. The general job would be to release stored sugar when your blood sugar is too low. The way we see this is sometimes an unexplained spike in sugar hours after a meal. If you have low to moderate fat intake… then it’s probably not that, but the spike is coming from somewhere. Your liver can also dump sugar from adrenaline and so things like panic attacks or even mild anxiety, or even physical strain can cause a sharp increase.in some people

best bet is work closely with the endo and observe what’s happening. just be aware that the rules are changing as you slowly stop making insulin. they may want to check basic adrenaline function as well.

I hope you find the forum helpful. cheers and good luck.

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Thanks I appreciate it. The liver dumping glucose is something we (my spouse and I) have been thinking is a possibility, but it’s just weird that the spike last night for example was shooting up rapidly, but maybe the liver can dump glucose that quickly.

I’ll have to talk w/ my endo but I don’t have a lot of confidence in her ability or willingness to understand what is really going on in my particular case in particular instances (kind of goes along w/ my lack of faith in doctors in general, unfortunately).

Also, I’ve had both my cortisol levels tested (very slightly elevated, doc said not an issue), and my adrenocorticotropic hormone tested, and the results were in the middle of the normal range.

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You are doing everything right @BKN480. And that’s a good thing. Treating type 1 is as much an art as it is a science - maybe more so.

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Thanks for that. I was pretty optimistic at the beginning. But repeated efforts trying my best to keep it under 180 and repeatedly not having that work is pretty depressing and demoralizing. But one can’t do anything but keep trying…

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It’s a challenge and unfortunately there’s no way around it.
As for your doctor, I hope you are able to get beyond your overall mistrust and find someone who works well with you. The trust and comfort factors are important, and if you don’t feel she is listening to you you’re well within your right to shop around.
I think I’ve only had one endo who was not part of a group practice - I chose him based on location and thankfully it was a good relationship. The rest have been group practices, which is nice because someone can cover for “your” doctor if necessary, and though it may be awkward you can switch. I like to all questions so having a doctor who is willing to listen and explain is much better for me than someone who simply says “Do this.” I hope you’re able to find one who is a good fit.
PS - I admire your food choices. I don’t enjoy coming but have been trying to eat Mediterranean style. For the most part​:wink::wink::wink: - I still enjoy pizza or a good burger, I’m not going to lie!

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Thanks for your response! Yeah finding a good doc who not only listens but can understand what kind of practical advice and treatment to provide is so valuable. They’re out there but rare. And the disease itself places limitations on EVERYONE’s knowledge and understanding (the vagaries of the body and all). I love breads and I love baking. I hope I don’t have to significantly limit what I eat, but right now I’ve found nothing that keeps my glucose levels within range other than super low-carb foods (which, yay for nuts, (and tofu!) at least).

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@BKN480 Hi Becky, and welcome to the JDRF TypeOneNation Forum! I, like most members here, am not a licensed medical professional, so my suggestions are just bits of “diabetes wisdom” gleaned from many decades living with diabetes.

First, I’ll “second” what @Joe wrote about your body probably still making some insulin, and about your liver dumping glucose. This “liver dumping” can be extreme if your body senses that it is being starved - your body might be noticing the drop in carbohydrate intake these last three months and is trying to make its own correction.

On another front, Lantus is not strictly a basal or background insulin - although when it was first released I found it wonderful. Lantus is know to have a “peak period” about 6 hours after injection before it levels itself off and becomes a true “background insulin”; in some people, this boost in effectiveness can be significant. It is possible this might be a factor in your 2:30 77 mg/dl BGL. You may be able to confirm what Lantus is doing in you body by skipping a meal, take your usual Lantus, and follow BGL with your CGM. If you see a significant drop in BGL, you and your doctor might consider taking Lantus at some time other than evening.

Insulin Sensitivity; in my old-age, I’ve found that one unit of Humalog [Rapid-Acting insulin] will drop my BGL 70 - 80 md/dl rather than the “normal” 50 mg/dl.

Becky, I like your intensity with which you are managing your diabetes - you didn’t write a “long” posting, you wrote what you observed and and had important factors so we could understand. I don’t want to sound pessimistic, but you may find that “a good basal level” for you will always be evasive - mine changes with the seasons. After years of studying diabetes, and diabetes management, I’ve found the one constant is change - what appears to be perfect today [basal rates, and carb ratios] may not even be close next month. I suggest that you focus first on living life well, and figuring how to keep diabetes “managed” to allow yourself to live a full life.

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Your supportive and informative thoughts are much appreciated. I had read Lantus can cause hypos overnight, so I’ve been taking it in the morning; however I didn’t know it had a peak and that it therefore wasn’t considered a basal insulin. I was on Humulin-N in the beginning (one injection in monring, one injection at night), though I didn’t have a CGM then and so don’t know how exactly that fared relative to Lantus.

Are there insulins you’ve found that you like better than others?

Thanks also for providing realistic expectations regarding what kinds/how much insulin is right. I am realizing through direct experience how much management is involved on a daily basis with T1D, and I’m trying to psychologically prepare myself for this always, to some extent, being the case, and not get too disheartened. If my late post-prandial highs are due to liver glucose dumping, hopefully that means this issue will ease up and disappear at some point. And I’m also really hoping my diet needn’t become too restrictive - so far I have not found it to be the case that I can “eat what I want” as long as I take the “correct amount” of insulin.

I appreciate especially your final thoughts in the last sentence. More experience will hopefully lead to me being more at ease managing this disease. Thanks again!

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Hi Becky @BKN480, you are welcome to my thoughts; just keep in mind that I do make mistakes, and that I have lived, as some might say, a bit too freely with my diabetes management. I’ve been know to experiment with different methods, sometimes at the doctor’s suggestion, and at other times after consultation with knowledgable doctors.

I currently [16 years] have used an insulin pump with Rapid-Acting insulin [experimented with Ultra Rapid when at a doctor’s request], so I don’t have personal experience with some of the new background/basal insulin formulations; I have used NPH, Humulin-N/Novolin-N, and Lantus - each of these progressively better than the earlier. I began using Lantus the month it was approved by FDA, and found that, for me, it was a true background insulin that provided level management for about 24 hours - without any peaks. People have said that Tresiba [insulin degludec] is a true background insulin, without peaks - but that it can remain active in the body for well over a day, close to two days. I haven’t experimented with this.

For the psychologic part of diabetes, I have tried to look at my management in the bigger picture - i.e., not letting one “bad day” get me down, but rather use what I learn from that day to make my future more positive. My wife [we’ve been married 54 years - after my 10 years of not managing diabetes well], keeps reminding me of this when I mention, usually during supper some diabetes frustration, or major accomplishment, by her saying to me, forget about it because next week will completely change.

Your CGM can be your dearest and closest friend, listen to her! And, once again, look at the whole picture while using hour-by-hour, and day-by-day close analysis to help you make specific adjustments - such as a carb ratio for a particular period of the day. Set reasonable goals for yourself, while remembering that you are human. Life is to be lived, and enjoyed.

As for restrictive diet. In 1957, I was given what I call a “starvation diet” which would deprive me of eating well - one of my enjoyments in life. I have grown, through trial-and-error to the point where I eat what I see, and want, at that time. In retirement for 10 years, prior to the last 7 months, we would go out to eat a couple of evenings every week and only rarely would I hesitate to order something on the menu. I’d taste, guess carbs, fat, etc. and shoot-up accordingly - then make a 10 PM correction for under-guessing carbs. I worked full-time from January 1960 until July 4, 2010 and during those years often traveled for work, which necessitated taking all meals in restaurants. Somehow, even with a like for good foods, I maintained a BMI of about 20.

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I listened to a Juicebox podcast this morning discussing how both protein and fat have slower rise rates and how to bolus for that type of meal. I’m not sure if this was the cause but it happens to me a lot. If you’re interested, the number of the podcast is episode 263. This podcast has helped me so much with managing my diabetes.

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Thanks for that! Looks like the podcast and his website are infromative, I’ll definitely check them out…

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Thanks again for all the info. Yeah my husband tells me the same thing - aren’t we lucky to have such wise and supportive partners!

I’ve wanted to throw my CGM through a window on multiple occassions. But I recognize how lucky I am to have access to this tool, and also just to these various forms of insulin.

I was glad after my diagnosis to learn that diet needn’t be restrictive (as I’d heard it was, I guess based on old guidelines, like you say). Hopefully with time I’ll know how to bolus for whatever I want. For ex., another difficulty I’m having is if I want a “high carb” meal for dinner (which just includes what to me is a reasonable amount of bread, maybe some tomatoes and/or beans in the mix) I have to take a ton of insulin (like 8 units), but taking it all up front makes me go dramatically hypo (which then follows with “corrections” that actually shoot my glucose sky high, even trying to be conservative in my corrections). So I’ve tried taking some of the insulin prior to meal, then the rest and hour or so later. But again, haven’t yet found a strategy that is more or less reliable.

Anyway, thanks again for your thoughts and advice, it’s really appreciated!!

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Hi @BKN480!
I have recently had this issue. My solution is to check my blood sugar numbers before I eat. If they are less than 120, I inject my insulin after I eat - as soon as my numbers move upward. I do a lot of scanning during and after the meal and when my glucose numbers rise -even if it is 1 pt. I inject my insulin. If my blood sugar is over 120 before dinner, I take my insulin before I eat.

I also eat my food in a certain order: veggies first, then protein, finally carbs. This slows the sugar spike. My kids have picked up on this and just think I am saving the best food in my plate for last. :grin:

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Hi Courtney, thanks for the suggestions! That sounds like a good strategy. I try to eat my higher glycemic foods later in the meal as well, and also try not to eat too fast. I’ve recently been lowering my dosage of Lantus and that has helped me be more stable and less prone to going hypo. We’re all in an intensive science experiment w/ our bodies - hopefully we glean a bit more as we go along, and at least now I know I’m not so unusual in this daily struggle/guessing/management regime… :slight_smile:

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There’s also an option to do an extended bolus of insulin - it may take some trial and error to determine the time period.

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Cool, thanks! Looking into this it seems this method is used w/ a pump, which I don’t have, but maybe one can try approximating it w/ multiple (2-3) injections…

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If you get your basal right first, then finding the right carb bolus is easier. If my daughter (the type 1 D in our family) is regularly rising that long after meal insulin, in a not high fat meal, it generally means her basal needs to go up. For her, .5 units for every 50 points she goes up is a good starting point. There are official basal testing instructions you can find online too. You are doing well and it will get better!