I am glad to be here and am looking forward to finding a community that can help my wife and I navigate this new arena.
We just brought our young son home from the hospital a few days ago after he went into bad DKA last Sunday. It was a very emotional and difficult week for us but we got him home.
So this is very early and we still have much to learn about our son and his body. A lot to process.
But here is my first question. Is it possible that a particular body may actually need a higher BGL to function properly??
The past few days he has hovered in the upper 200s and even some low 400s (no real trace of Ketones and we measured too soon after a meal). So let’s call it upper 200s. He has been great. No symptoms. Great appetite. Drinking his water. Getting his insulin.
This morning, he woke up with BGL of 204. Did the math and based off of the formula we use for him he did not need any insulin. His target range is 70-130. But he just kept getting more tired on the way to church. He had a snack on the way. And then just wanted to sleep. We came home and he was complaining of a bad headache. I checked his levels and he was at 187. His headache did not go away. He had a few bites of food and then wanted to rest and fell asleep very quickly.
Since we have had him home he has not been under the upper 200s. But on those days he has functioned like his normal self at upper 200s.
Is it possible for a particular body to need higher blood sugar levels to function normally?
I hope that all makes sense. I thank you all in advance for any help that you can provide. And I look forward to being a part of this community. Thanks so much!
hi @AGSJunior and welcome to the Type One Nation forum. we are either diabetics or caring for someone with diabetes here, so we can’t give medical advice, but we do share what’s worked for us.
70-130 sounds very tight for pediatric control, it is close to the recommended range for adults with type 1.
Sit tight because most kids who are newly diagnosed will start making their own insulin again and he may need little to no insulin for a little while. you give it based on blood sugar.
regarding the question, if I kept my blood sugar between 200-300 for a month… then being at or below 100 would feel weird. This is especially important for people who cant detect when they are low. I have to say that pretty much all people with automatic control over their blood sugar would be 70-100, and no it doesn’t vary too much.
Headaches, for me, are often signs of dehydration, at or at about 180 mg/dl, kidneys will stress and he will urinate more. it is easy to be dehydrated with elevated blood sugar. The most typical “feeling” associated with low blood sugar are feelings very much like anxiety… shakiness, fast heartbeat, sweating, tingling or numbness in the face or hands. If my blood sugar swings wildly… for me a 40 then if I overtreat and go to 200+ then I might get a headache form that.
Please consider getting the book “Think Like a Pancreas” it is a goldmine of information for the newly diagnosed. I hope you have access to a pediatric endocrinologist and a adviser like a Certified Diabetes Educator (CDE) they are very helpful the first year dealing with your new normal.
The JDRF may have a chapter close to where you live, please go to T1D Resources - JDRF and check out all of the links.
Pleas keep asking questions we are always here for you and your family.
Thanks Joe for the reply. I am glad to know there are people like you and the rest of the community that are ready to respond.
So first thing. My son woke up from his nap and was feeling much better. He was alert and responsive and just felt good. I checked levels and he was at 253. Heading into the upper 200s like I said he had been.
Joe, you said if kept levels high for a month and then dropped lower, you would feel weird. We have no idea how long our son’s levels have been high or what those numbers were. That is why I am wondering if he is still wanting to function better at a higher BCL number. I guess we will get to know his body more as we move through this process.
Joe, you said “automatic control”. Are you talking about using a CGM with an insulin pump? If not, what did you mean?
Thanks again for the info!
I meant people who don’t have diabetes have blood sugars between 70-100 mg/dl all the time. You can use his meter to check yourself and see!
He just got diagnosed, it’s likely his blood sugar has been high a long time. It may be distressing to get back to a more normal range 80-100 and when he does it’s very likely he will feel shakey.
The endo will give you a strategy but we all try for normal range blood sugars to avoid long term complications. When “honeymoon “ starts (very likely he will make insulin for a few weeks, this is called “honeymoon” ) his blood sugar will go to 70 and stay there. Do not panic.
@AGSJunior I do have a pump and a CGM. I find these tools very helpful. It’s important to learn how to do manual shots because pumps break and manual shots are required learning. The feedback insulin pumps such as Omnipod, T’slim and Medtronic use the CGM to try to control blood sugar by increasing and decreasing insulin. This tech is not without its own drawbacks and challenges. I was on shots many years before I decided to pump, but I would recommend taking a look and reading up on all the technology. Just don’t try to do it all tonight.
Welcome to the forum, @AGSJunior . I switched doctors several years ago. My numbers (fingersticks at the time) had been in the 200s so he recommended some changes to bring them down. His recommendations worked, but I called him because I felt shaky, one of the ways I feel when my numbers are low - even though they were in the 180s. He told me my body had been used to running higher but I would adjust, and sure enough I did. It will take a bit of time but he will learn what his “new normal” feels like.
I second the recommendation of Think Like a Pancreas. The author - Gary Scheiner - has diabetes and works in the field so has a unique personal perspective that is particularly helpful. I first read it a couple of years ago and found it enlightening, and I’m nearing 60 years on insulin (diagnosed at age 3 and doing well).
@AGSJunior Hello Albert, and welcome to the JDRF TypeOneNation Community Forum! You have already received some sound information from both @Joe and Dorie so I won’t repeat.
There isn’t any “needs to be” relative to any age or class of person with diabetes - we are each unique and have our own needs. You didn’t mention your son’s age or his customary activity level, but if he is anything like my kids or grandkids, I’d gather he is very active and IF so, if his BGL began too low he may unknowingly drop below a “safe” level. As a contrast, when I was about age 70, the doctor who was assisting me advised that I INcrease my HbA1c by 3/4 of a percentage point. Meaning old folks "need to be" higher?
I certainly hope that the 70-130 target range you mention is for “before meal” and not for an entire day - for before meal, “the 70” sounds lower than I like to be.
Keep up the good work that you and your wife are doing, ask questions and learn, but don’t try to compare your sone with other PwD - every one of us is unique.
Hi Albert -
First off, I’m sorry to hear that you, your son, and the rest of your family are now a part of the “tribe.” But I am encouraged that you’re reaching out for advice and help and I promise you - it does get a little easier to manage for sure as time goes on! Never easy, but much easier. And I know folks all over who are living long, full, AND HAPPY lives with type 1.
While I’m not a doctor or medical professional, I have lived with type 1 almost 30 years (diagnosed when I was 7) and so I’m happy to add to the great comments received so far, if it’s helpful to you guys.
Like a few others have shared, it doesn’t surprise me that your son seems to feel “normal” in the 200s. When you hang out for a while at a particular level, your body gets accustomed to that range and anything lower can make you feel “low” even when you’re not (headaches, cranky, hungry, sleepy, etc.) I’d say it definitely makes sense to discuss your son’s range with his doctor/team, because maybe 70-130 is a little too low - or too low at certain times of day (like bedtime, before gym class or recess, etc.) - but I don’t think it will be the case that he’s “made to be” in the 200s. Over time, no one really is and that’s where you can see those long-term complications creep up (not now, but 10-20 years in the future). I’d keep working with his team to bring his numbers down a little into a better long-term range and I suspect he’ll start to feel more “normal” at 150 than he does now at 250.
That first year especially is TOUGH, so you guys are doing great! Keep asking questions, learning, and working with his doctor team. You and your wife CAN DO THIS!!!
@LaurenN Welcome Lauren to the JDRF TypeOneNation Community Forum!
Your first post was quite informative and hopefully helpful for Albert. Please keep on reading and offering tips and suggestions for all us “learners”; with over 65 years as a “member of the Tribe”, I’m still learning.
My blood sugar rides high too, so I can relate with that. For short amounts of time after diagnosis high sugar is fine! But not forever! There’s plenty of people in my family that never grew out of the, “high-riding phase” as I like to call it. For some it’s not a phase! They just feel better with high blood sugar. This is honestly quite common. For my specific case, I gradually got it lower and lower and we even upped my nightly insulin by one just to keep it a bit lower because I was always around 200, now I’m in the very high one hundred range and going lower! I feel tired with lower blood sugar than that but gradually I feel better as it gets lower and lower. Remember, you DO NOT want to drop it fast, this only my specific case and I am newly diagnosed and only 15, so take this all with a grain of salt, hope this helped!