I have been a T1 diabetic for eight years. But in all these years, this particular subject has somehow alluded me. My doctors have never mentioned it, but from what I am reading online, it can be pretty dangerous. So my question is this. Are ketones something that I should be concerned about? Or is that just something the Internet is making up to scare me?
Ketones exist. You should not have them. Ketones are bad.
Every once in a while someone reports running ketones without having high blood sugar, which has always confused me.
Why? Are you running ketones?
Not sure. I have never tested for them. Which might be bad for me. But like I said, my doctors have never mentioned this so I didnāt ever think about it. But based on what I have read online I might need to. As I mentioned elsewhere, p I have brittle diabetes, and I become very high quite often. I will hit 250 easily every other day. But when I go to correct it, then Iām thrown straight down into a state of low blood sugar. Itās just an extra thing to check. I just need to make sure that Iām OK. Iāve been noticing lately that my stomach hurts at different times. Not upset just a dull pain. And itās usually when Iām high. So I want to cross this out of the list of potential problems.
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Never worried about them but thatās just how it goes for me. If high, I drink water and work to get it down .
Ok but if itās that simple Laura, why such a big fuss? The info I read said it could be pretty life threatening. Doesnāt appear too bad if just drinking water will fix it. Plus I am assuming I need a prescription to get a ketone kit?
Ketones are a by-product of our bodies burning fat. If blood sugar is normal or near normal, ketones usually arenāt dangerous. However, for most diabetics (and all T1s), when there isnāt enough insulin present to function, the body starts burning fat for fuel. The resulting combination of ketones plus very high blood glucose creates a condition called diabetic ketoacidosis which, if not immediately treated, can cause major damage and even death. Sometimes, especially if your blood sugar isnāt still going up, you can flush the ketones out by drinking water. But if you canāt bring your blood sugar down and it keeps going up, it becomes an emergency.
As for testing, you donāt need a prescription for test strips for ketones.
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Itās a problem and can be a huge risk. It can take from a few hours to ?? to happen. I first found out about it online too. But itās also a way a lot of type 1ās first find out they are type 1ās.
It happens because of a lack of insulin. Some people seem to be more prone than others. It happens at higher BG numbers. But not because of being at a high number, but because a high BG level signifies you arenāt getting enough insulin so it could happen. I was misdiagnosed at first so it was never mentioned to me as a risk. And since we can make insulin as a type 1/LADA for years our risks arenāt that high at the beginning.
But the problem happens when you donāt make or take any insulin or enough insulin. A common reason would be pump failure. If you are on MDI and a long lasting insulin, itās not as likely to happen either, but it still can if there is a lack of enough insulin.
Iāve included some information on it! One article says to watch above 300, another above 250. It can happen at a lower level too, but thatās just not as common. The important thing to remember is to watch for the symptoms and seek help immediately if you get them!
There are urine test strips, cheap but not as accurate that you can pick up at any drug store. There are actual meters that are very accurate that you can just buy and as a type 1 my insurance covered it with a prescription.
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On the other side, something else thatās not always mentioned to youā¦
Itās always very important to carry a quick fix for low blood sugar near you at all times. Many of us use things like gummy bears, skittles etc to carry with us.
Our blood sugar can just decide to drop at times. Plus I know with me any form of exercise can set off a drop. Like once I decided to take a picture and kept walking for a better one and my blood sugar started dropping and I didnāt have anything with me. Itās best to have it in a pocket etc at all times, just in case!
But another thing thatās not commonly mentioned either is to keep a Glucagon Kit on hand. A Glucagon kit is something in case you pass out or become dangerously low. Baqsimi is a nasal spray thatās a convienent form to have now. You do need a script for one and my insurance did/does cover it.
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As posted elsewhere I have had diabetes 54 years now. Now my high symptoms (over 350) are muscle aches. But I am also super sensitive to insulin and unless my pod has been failing for a long time, I usually plummet fast.One thing I was told was to not exercise during those times, and drink a lot of water. So essentially I do that. Your mileage may very as they say. Everyone is different.
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Itās a good idea to test for ketones when you have a lingering high BG, for peace of mind and just in case. This meter is good, tests for glucose and / or ketones. Test strips are readily available on Amazon.
In 10 years Iāve never had ketones at concerning levels, but I still test when needed. Iāve read enough scary stories about how quickly they can develop and donāt want to risk it.
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Hey thanks so much for the info everybody. As I said I have been at a loss about ketones. Appreciate the clarity.
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Yeah, if your running high, then your a candidate for ketone testing. You should have a prescription. Ketone strips are cheap and easy to test - you just pee on the strip.
in general, ketones are gonna result from you running a sustained blood sugar of 250.
If you hit 250 after a meal here and there, thatās not a problem. That happens to everyone. I ate a chipotle burrito yesterday and thatās a situation where I might hit 250 for 4 hours after I ate it until correction insulin brings me down.
If I ran 250 for 24 or 48 hours, then I would check ketones. If I was running ketones, I would call the emergency nurse line and consider going into the ER.
Both of these pieces of advice hit the mark for me. I am like you, I can drop easily from a high if I take extra insulin, so I am conservative in my doses/corrections, and just ride things out. I try to stay under 180 but frequently my meal spikes go to 200 or 250. Itās either b/c the carbs I ate are getting into my system faster than the insulin, or I guessed wrong and didnāt dose enough insulin. Either way, I am not there for long, I drink water, take any correction dose I think is appropriate, exercise if I can a bit, and things drop within an hour, maybe two. I try my best to avoid them, but have never worried about ketones. I would worry only if you are high for long periods of time, more than a day or two, and insulin for some reason isnāt working. That is just me.
The key, from my understanding, is that ketones are an issue not when your glucose is too high, but when it is too high AND you do not have enough insulin in your body to bring that high down within a day or so. Again, that is purely my own experience and understanding. I too have been confused about the hullabaloo, but I just try my best, Iām high fairly frequently after a meal despite that, but I exercise all the time and my muscles really only give me pain if I go too low, especially for more than 30 or so minutes (which rarely happens nowadays), or like someone else said, if I get up over 300 for a couple hours (fortunately, rare). I hope that helps.
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@Jup30 I wanted to ask, did you get diagnosed as part of being hospitalized or did your doctor catch the diabetes before the side effects of not having insulin, like DKA, got serious?
I ask because being hospitalized is a convenient time for diabetes education. Not being hospitalized means your PCP and Endo need to make sure you are getting that education. Maybe DKA slipped through the cracks but I want to make sure you still have someone doing education on your care team.
You need to educate yourself too, like youāve done by asking this question. Some docs recommend reading the ADA Standards of Care. DKA gets mentioned a couple of times but hereās the important bit.
The book Think Like a Pancreas is also a good read.
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Spdif I mentioned my backstory somewhere else. But to answer your question I will repost it here.
I was diagnosed T1 about 8 years ago. Literally over Christmas my grandfather passed away and so at the funeral some friends of my family( they didnāt know my grandfather) came to show support. And the dad walked up to me and as he shook my hand the first thing out of his mouth was ā man you have lost a lot of weight!ā That took my family by surprise and then after the funeral we went and ate the meal that was prepared for the family. And on my way home I went out of my head and had my first episode of serious hyperglycemia. But I came out of it at home surprisingly. We talked with my PCP that night. He told us to pick up a glucose monitor and let him know the results. I was 542. This also happened on a Saturday night so we had to wait until Monday to go see him. He Just made me stay off of carbs until we had the appointment. The progression of my diabetes had been so gradual that no one had noticed. I was was peeing a lot. Was thirsty all the time. But it was so gradual that I was oblivious to problems. And I had lost a lot of weight. I am currently about 125 pounds and that is a perfect amount for me. At the diagnosis I weighed 95 pounds. Diabetes was eating me alive. Within a few hours of my first insulin dose I started feeling better. I couldnāt believe how much pain I was in. My PCP did help me with a lot of educational things In those early days. But I have often times been left on my own to figure things out. There seems to always be something new to learn and or explore. And the problem with diabetes as I suppose is true with other diseases is that while it is a common disease, it cannot be treated the same way across all effected people. So while there are commonalities, it has to be personalized. Itās been a challenging 8 years with itās highs and lows (no pun intended) and that is pretty much it. Self care. Self education. That is what it is really all about. So far this forum has been a great resource. Thanks again to everyone.
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Sounds like youāre over-correcting, which often just sets you up for an up-and-down roller-coaster. Pull back on your correction factor a little. It may take longer to come down (frustrating for impatient types like me!), but you might find you come down and level out in range rather than keep going down into low territory.
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I was covered by HMOs for the first 20 yrs after dx, and theyāre notorious about not doing referrals to outside specialists. PCPs are ok for Type 2āitās much more common and usually covered by āMetformin-diet-and-exerise-come-back-in-six-months.ā But insulin therapy is a whole different ballgame, and they tend to be hyper-cautious and not all that well informed about the latest protocols and devices. Clearly yours has not been very helpful if they havenāt even informed you about ketoacidosis, which is what you DIE of if youāre undiagnosed, or go without insulin for an extended length of time. I would see if you can get a referral to a genuine endocrinologist.
That said, I can also attest that Iāve learned FAR more from other T1s on this site and a few others than I ever did even from my endo. But having a knowledgable MD you can discuss your therapy and results with is pretty important, especially early on.
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My apologies, I tried but failed to find your dx story. Thank you for being willing to post it again. My experience with doctor appointments is I only get 15 minutes of their time if Iām pushy and part of that is going to be wasted because the doctor hasnāt read my chart until they walk in the room. That makes me want to say please ask your PCP if they recommend any endocrinologists in your area. Also ask about a certified diabetic educator, aka CDCES. After 8 years talking to a CDE might be hard because you know a lot of what they will tell you and more importantly already figured out how to apply it. Wading through what you already know is worth it to learn what you donāt know.
TCOYD is another great resource I just got an email from today saying they are doing a livestream of their conference this Saturday 8/17/2024. ONE 2024: VIRTUAL - Watch Live Sessions
My bad. In these 8 years I was mostly seen by my PCP. But due to an insurance change I made two years ago I was finally referred to an endocrinologist. I meant to say that in the above message. You are right about PCPs not being willing to do so. So out of 8 years I have only been seen by a specialist for two. So I am finally on a track that is going well for me. And while I know that everyone has a different standard for what their A1C should be, and this is not intended to guilt trip anyone, I do want to share the results of my blood work yesterday. A grand 6.9 A1C. My endo is happy with a 7. But I personally want it lower. Also an extra note about when I was diagnosed that I forgot to mention, my A1C was an insane 18.3. I was on my way to an early grave.
I have always wondered about a diabetes educator but I have never had one. Will look into that. And the livestream. Thanks for the info.
I shared my story in the feed Apocalyptic question - #26 by Jup30
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TCOYD = āTaking Control of Your Diabetesā in case anyone else is wondering. I had to google it b/c they donāt spell it out on their homepage or logo (itās actually in the pageās <title> tag, but with a lot of tabs open I couldnāt see it). Thanks to text messaging a lot of acronyms are supposed to go without saying and sometimes itās fun to figure them out (I guessed āTaking Care of Your Diabetesā) But when itās the name of your organization itās a copywriting no-no that raises my inner copyeditorās hackles! /rant
Looks like a fun site though, thanks for the link!
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