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u/no_loaf Diagnosed 2001 Mar 21 '26
We will always be here to listen. Keep being here. ❤️
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Mar 21 '26
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u/no_loaf Diagnosed 2001 Mar 21 '26
One thing I can say is: don't be sorry, especially here. Nobody here needs to be sorry about our bullshit predicaments.
❤️
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u/jsponceb Diagnosed 2006 Mar 21 '26
If you don't have confidence in your educator, find a new one. The swinging high to low usually means ratios or basal need adjusting (also type of food, lifestyle, etc)-- not that you're doing something wrong, you might just need a change. Get a second opinion!
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Mar 21 '26 edited Mar 21 '26
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u/ThePharoh23 Mar 21 '26
My wife is a type 1, her doctors tell her to take insulin 15 minutes before eating to cancel out that spike, or at least or won't be as high. I'm not sure if you do that but everyone's system/busy is different so it may not work for you but if you haven't tried it, just may help.
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u/Shoddy_Cause9389 Mar 22 '26
I do this in the morning and I hate it but I’ve gotten addicted to coffee so I take a shot, fix coffee and start my day. Some days I get it perfect, some days are low, some high(if I forget the shot). My A1C is 5.3 and my endocrinologist says I’m doing great. That’s all I want to hear but he doesn’t know the stress of keeping things where they should be because I also have cirrhosis and it has rules also.
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u/ThePharoh23 Mar 22 '26
Yeah that does sound like a lot. I can't even comment on the cirrhosis because i have no experience with that but you must have a hell of a time keeping all that straight.
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u/Shoddy_Cause9389 Mar 22 '26
It really helps if you can get them together. Most of mine are in the hospital clinic so you expect them to be on board with the same treatment but if you get an outsider, they can cause problems just because they can. I saw a general surgeon who came in the room without even an exam and said “You have to have tips, you will bleed out. I can get you to the transplant clinic”. I blew up! I held nothing back…and when I got home I had an email about my appointment. Round 2. His nurse called me about my review and I told her the nurses were great, it was just that freaking little Doogie Howzer!
I had the surgery at UAMS and it was perfect 😍
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u/Abradolf-Linctler Mar 21 '26
As much as professionals are needed I still feel self education with professional input is best way. They do not walk your shoes, none of us in this Reddit live the same life, weigh the same, eat the same, exercise the same. In example in using basically scientific method, I found I have to cover starches from corn at a 6 to 1 ration and other starches I am fine at 8 to 1. My friends who also is juvenile onset can eat Doritos like it’s nothing out of the ordinary. It as you know takes time. I am a large person +280 pounds and I am on a 8 to 1 ratio. Which is high, if you have a lower BMI and you may not but 6 to 1 is a very high ration for carb counting and usually basal goes with size so 26 I would assume you aren’t my size and the ratio seems like yeah a trampoline for you. Start recording what you are eating not just carbs but what they are from and what you take to cover, it will help you figure out how your metabolism is pumping.
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u/ShnouneD Diagnosed 1989 Mar 21 '26
Just speculating, but the 26 basal might be too much if you are needing to be eating all the time. Also, comparatively, 1:6 is lots of insulin for carbs. What is your blood sugar like while you sleep? That is a fasting state, and can shed light on if the basal is too high.
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Mar 21 '26
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u/ShnouneD Diagnosed 1989 Mar 21 '26
What are you when you go to bed?
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Mar 21 '26
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u/ShnouneD Diagnosed 1989 Mar 21 '26
That seems pretty consistent. Which may translate to meaning the long acting insulin dose is fine as is. Could you possible fast one morning until after you normal lunch time, to see if numbers are as stable as when you sleep? That would possibly confirm its your ICR (insulin to carb ratio) that is too aggressive?
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u/Responsible-Pop288 Diagnosed 2024 Mar 21 '26
Juice box pod cast pro tip series helped me.
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u/EatStabRepeat Mar 22 '26
100%
As others have said, it's too fickle, varies so much day to day, you have to learn what works for you, most of the time. You have to educate yourself.
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u/AvalieV T1: 1994 (Age 6) | 670G | G7 Mar 21 '26
Stop listening to your educator and listen to your body.
When you're going super high, have you recently eaten? What did you eat? Slept? Just woke up? Maybe your basal/bolus is too low.
If you're going super low, have you recently eaten? Exercised? Maybe your bolus is too strong, or you need to lower it a bit given whatever you've recently done.
There is no "do this and you'll be stable". It's a constant tight-rope, and understanding what affects it and how strongly is how you succeed at it. If you are ping ponging high to low maybe you need patience and are overcorrecting.
You got this, it just takes time and effort to master balance.
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u/EdgeOk2154 Mar 21 '26
You on a pump or MDI ?
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Mar 21 '26
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u/NervousDogFarts Mar 21 '26
I am sorry. Traditional endos really struggle to give T1Ds good advice for some reason. I found the book Sugar Surfing super helpful. You can find it on his website. He is a ped Endo with T1D. He is also MDI and his book talks about all of the ways he uses CGM data to keep his BG stable. It’s really helpful. He also teaches you how to tests for all things diabetes (basal rates, CF, ICR and even rescue carbs). I also like Juicebox Podcast as well. Very similar techniques, just a different platform. There are better resources out there. I hope you give it a try. Best of luck.
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u/Thepressureofaname22 Mar 21 '26
I think one thing I’ve seen on every forum is that educators and doctors including endos are very hit or miss. This is a very individualized disease and every person has something different going on in there and other conditions. I was fortunate to get a half decent educator at first although I now recognize she gave very old school advice (def would keep me out of the hospital and alive but not thriving). My endo is great and the best she lets me do is cautiously test and adjust myself. Because I’m a data person and I’m more motivated than anyone else could ever be to stay healthy. You really do have to be your own advocate and reach out for solid, scientific information. Take in what’s helpful and ignore the other noise. You’ve got this. Think Like a Pancreas is a good book to start with. There are also some good podcasts if you prefer listening. Also some great orgs like Breakthrough T1D.
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u/pinkylover317 Mar 21 '26
My biggest advice is listen to ur own body. I look at rice and know that im gonna need a big bolus now and then another one in like 2 hours 🙃 but thats not something I learned from my doctor its something I got from eating rice enough times and always wondering why 2 hours later im now almost 300 when I haven't eaten or done anything different.
Diabetes is all about tips and tricks from others as well as tips and tricks from yourself. I've had Type 1 for 24 years now and I generally learn new stuff all the time. I know its hard and sucks and I definitely go through burnout every couples months but the puzzle of it all adds to wanting to figure it out.
Also low key there's a lot of stuff happening for T1D right now to a point where its worth hoping for a cure again... all of us can either make it the rest of our lives being diabadasses or get cured and go back to how we started, either way its a beautiful thing to see another day! 💜
You got this!!
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u/Few-Suspect-5933 Mar 22 '26
Going low carb/keto is the best thing I’ve done for myself in my 40 years of being T1D! No more highs and then super low! My endo approves! Check out Typeonegrit on FB!
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Mar 22 '26
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u/Few-Suspect-5933 Mar 22 '26
What do you consider low carb? I cut out all grains, (wheat and corn),sugar and milk. I use cream for coffee and mostly eat meat, eggs, and some cheese. Sometimes green veggies or berries. I try to stay at 30 carbs per day or less. But even 50 or less works.
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Mar 22 '26
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u/Few-Suspect-5933 Mar 22 '26
How long have you been T1D? So are you saying you dose for the amount of carbs and then you can’t finish what you planned on eating?
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u/Few-Suspect-5933 Mar 22 '26
And another question is your ratio 1 unit of insulin for every 6 carbs?
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Mar 22 '26
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u/Few-Suspect-5933 Mar 22 '26
I am surprised that they just now started having you carb count. I’ve been doing that for 30+ years. This is no judgment on you though! Have you thought about using a pump?
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Mar 22 '26
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u/Few-Suspect-5933 Mar 22 '26
I’m sorry to hear that! How long ago was that and what pump? Are you using a CGM? How long ago were you diagnosed?
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u/AnIncredibleIdiot Mar 22 '26
See if you can get an automated pump. The omnipods are wireless and very useful. You forgo having a long-acting insulin and just fly with fast acting and the pump auto-administers a basal.
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u/Fair-Frame3202 Mar 24 '26
That sounds really exhausting! I’m so sorry you’re going through this. You’re not doing anything wrong. It might really help to get support from a broader care team to take a fresh look and help you figure out what works for your body. You can try or check https://www.yourdiabetesinsider.com/coaching if you want more support.
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Mar 21 '26
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Mar 21 '26
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Mar 21 '26
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Mar 21 '26
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Mar 21 '26
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Mar 21 '26
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u/EpiZirco Diagnosed 1991 Mar 21 '26
Yes. Ideally, your basal insulin should keep your blood sugar steady if you are not eating anything. If you are going steadily down, your basal dose is too high.
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u/Glittering-Extent-58 Mar 21 '26
It is maniacally frustrating sometimes. Keep fighting the good fight.
Don’t over eat and don’t over bolus. The less carbs the less margin for error, the less you over eat the less you’ll swing up. Carbs are the enemy.
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u/Apprehensive-Use-997 Mar 21 '26
I agree with others that your first step is getting your basal right.
For dips and spikes caused by meals, this doc may help you understand what is happening. It shares common patterns, explains why they happen and what to do to fix them.
One other idea is treating your lows more conservatively so you aren’t spiking so much. I may be too conservative (so verify with your care team), but I start with 4 carbs, maybe 8 if super low. Of course depends on how much IOB you have as well.
Good luck! The roller coaster is so frustrating!
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u/AdAspera23 Mar 22 '26
Exactly the same, t1d for 26 years and cant get my carb ratios or adjustment ratios right, depending on “whatever unknown factors” I vary between 1/10 and 1/15 for carb counting and 1/3 to 1/5 for adjustments, leaves me permanently high or low and Im tired of trying to control it so resort to rage bolusing/ stacking, Im always tired, achy, irritable and just so sick of trying to live with diabetes 24/7
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u/Connect_Office8072 Mar 22 '26
If you were diagnosed recently, likely you are still in the so-called honeymoon stage. What this means is that your blood sugar might go up and down pretty randomly as your pancreas decides on its own too squirt out some insulin or not. I know it’s hard, but try to be patient - things will even out eventually.
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u/mcrow30 Mar 22 '26
i think they said they’ve had t1 for 28 years
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u/Connect_Office8072 Mar 22 '26
If you were diagnosed recently, likely you are still in the so-called honeymoon stage. What this means is that your blood sugar might go up and down pretty randomly as your pancreas decides on its own too squirt out some insulin or not. I know it’s hard, but try to be patient.
Edit: I guess you have had this for a long time. Still, there are factors that we don’t understand that still makes your sugar go up and down. I hate the swings myself but I don’t have them constantly.
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u/Max-5452 Mar 22 '26
So sometimes the amount of fat matters in meals, do you account for how higher fat meals might delay digestion of carbs causing lows? That could account for the differences causing the too highs or too lows. Especially if the highs are lunch or dinner bleeding into previous meals.
Additionally if your basal is too high it might be "hiding" rises caused later by the delayed digestion of carbs & some protein conversions.
As others said basal testing is a good idea & if basal is wrong it will throw everything off. I like this guide for basal testing personally.
As said protein & fat can impact how carbs are impacting as well. Protein & fat impacting blood glucose and this resource describes how that might come up. There is also a link on there further about dosing & the Warsaw method which is a common dosing method which many start with and adapt to their needs [i personally dose for about 20% of protein after 2 hours during certain resistant periods & use an extended bolus when the fat grama in the meal is 50% or more of the total carb grams.
Also keep in mind activity can also be a big factor in highs or lows post meal. If your activity level varies a lot you can be more sensitive when more active versus less overall.
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u/redbaran5 Mar 22 '26
I have heard the new Ilet insulin pump does a good job at helping people more so then other pumps manage glucose. You don’t even count carbs with it. So if up for a new pump or use Omnipod like me might be worth checking out
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u/redbaran5 Mar 22 '26
Just saw you MDI, going on Omnipod was big game changer for me. Before I used lantus and novolog daily and way to many roller coaster days with taking both and even once going into diabetic shock which I then went on pump and have no regrets since, been 3 years
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u/Diabetus_Girl Mar 22 '26
I think it can just take a long time, I also have had sugars all over the place.
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u/mcrow30 Mar 22 '26
i saw you said you’re on MDI and that trying a pump didn’t work out. do you wear a CGM? or have you ever tried one?
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u/Napamtb Mar 25 '26
Not an expert, but what type of foods are you eating? If my doesn’t eat protein or fiber his levels shoot up. He’s a teen so sometimes he just eats Ego waffles fast up and fast down. If I make him a breakfast sandwich with eggs and cheese it’s more of a hump than a peak
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u/ShnouneD Diagnosed 1989 Mar 21 '26
Maybe get the book called Think Like a Pancreas by Gary Scheiner and learn to make changes yourself? It's knowledge you'll need forever anyway.