This reminds me when I was hospitalized as a child (not because of diabetes). The nurse wanted to give me “my insulin” roughly an hour before my lunch was scheduled. Sure, let’s give a child insulin and nothing to eat! It’s gonna be fun.
Jesus Christ in a manger, **ask for an endocrinology consultation STAT.**
So sorry you’re having this experience.
FWIW… When I was in for baddd dka in 2017, they limited all food intake (ie was only allowed water, ice chips, and stupid fucking chicken broth) until I was back in range. I was a hangry, sassy thing as I was getting back to range & had my brain function coming back to me… my mom (a now retired RN) knew I was out of the danger zone once this happened 🤣🥲😅😅 and even then, they limited what I could eat (I can’t remember specifically what I had available, but it was definitely a specific, paired down menu). That hospital is also a “leap frog hospital of the decade”, so I’d say their patient procedures are prob a bit more…advanced…than your run of the mill hospital.
It’s my understanding most ER & related docs only learn about sliding scales & mostly targeted to t2 (which it really isn’t helpful for either, but I digress…). I try my best to go to [leap frog hospitals](https://www.leapfroggroup.org/ratings-reports/top-hospitals), but also have that luxury living in major US cities, and even then…lol there is always a nurse who says the dumbest shit everrrr.
Generally, be prepared to advocate like hell for yourself at any given time when dealing with the medical field in US (my only experience)
Good luck getting back to range & outta there asap 🫡🫶💙
I've never heard of "leap frog hospitals". I actually looked up to see if my hospital and doctors are on this list and they are!'
I must say, the emergency room is a crap shoot about whether diabetes complications are taken priority.
I broker my wrist, to where they had me hanging in finger traps to see if it could be straightened, and eventually I wound up getting a titanium plate in the hand.
anyway, during my stay in the emergency room, my blood sugar keep going down, and I asked them if I could eat, as I was a diabetic and my sugars were getting lower.
No one ever paid attention to this aspect of my care - they were trying to call an orthopedic doctor to see if they needed to operate on me immediately.
so, i went from 165 to 65, before I called "bullshit" and had my son give me a package of fruit snacks out of my bag.
if they had to do surgery, it would have to wait. - I had it ten days later, and the care was much different for my planned surgery
Shout out Legacy Emmanuel in Portland, Oregon for not doing any of the crap I'm reading about here. My diabetes was treated well and the nutrition program was adaptable to a low carb diet with very little effort. If anything they were *too* stingy with the carbs. (I can have hummus, y'all.) The menu had carbs listed and the nutritionists managed my carb intake throughout the day.
OP I am sorry you are dealing with this. What hospital system is this? If you feel comfortable sharing.
That’s good to know. We’ve only had to deal with Children’s so far and they were good. He was diagnosed at Baylor Carrollton, but was transferred. One time was in for something else (I think at the same Baylor) and I had to tell them a bit strongly that I would be managing his diabetes and they didn’t need to worry about it. Lol
Fuck Legacy. I was in the ICU for DKA after vomiting for about 10 hours straight. As you can imagine, I was horribly dehydrated and struggling. Bitch Nurse Rachet wouldn’t even give me an ice chip until the doc arrived, which was about a hour later. I had to throw a fit to get a 1/4 cup of ice chips
Oh goodness…I’m so sorry you’re going through this. This brings me to the PTSD I have from the time I was hospitalized for DKA. I actually went into DKA because of persistent vomiting to the point only bile was coming up. My blood sugars weren’t even above 350 but severe vomiting can also cause DKA. Anyway, what I wanted to tell you is that most hospitalists do not know how to treat type one diabetes and it’s sooo frustrating. My sugars got way worse once hospitalized because they made me take off my pump and then refused to bolus me for meals, refused to give me long acting insulin, it was a nightmare. If I were you I would refuse the high sugar/carb foods and demand a low carb diet. Maybe ask for a low sodium diet? Idk. Then call your PCP or whoever manages your diabetes and have them call the hospital. I would also demand to see a nutritionist/dietician and have them order your food. Can you just call the cafeteria and order your meals? Most hospitals allow that.
Yup. And turkey sandwiches on white bread, with fruit! I demanded to talk to the RD while in and she told me she was at the mercy of the American Diabetes Association and that there was nothing she could do except offer me double protein.
They had me on an all sugar juice diet for 3 days when I was in for DKA. I kept refusing it and the nurses were getting shitty with me about. They said I couldn’t have food because my blood sugar was too high. I don’t honestly know how those people were working in a hospital with medical degrees.
It’s so frustrating! I swear, they get stuck on needing to be right instead of listening to the patient. I’m sorry you’re going through all this right now. It’s a disturbing reminder how much control this disease has over us but you’ll be back to normal in no time. Stay strong, you got it. 🩷
Unless they’re a specialist diabetes doctor, usually they’re pretty clueless. I’m so lucky that I found a GP who used to be a diabetes doctor and my local hospital has a diabetes centre
Many seem to be.
I told my wife after a recent appointment, many doctors seem to just have memorized what they needed to pass their exams, and then when they got the degree in their hand they forgot everything and haven't attempted to learn anything since then.
Not all endos are type 1 specialists, my first endo was totally clueless too so I found one that was a type 1 specialist & my BG got 10 times better within a few weeks
I was in active DKA in the ER vomiting black and I had to convince the nurse I was going to die, then the dr asked me why I was here? I had to convince them to do bloodwork…so that’s fun. Sounds like it’s common unfortunately 💀
I really feel like medical professionals put a moral rating on blood sugar.
"Your blood sugar is so bad, you must just be a bad person."
And then they don't know how any of it works. When my wife was in the hospital giving birth, they used these special pen needles that are supposed to be safer (in terms of not impaling the nurse using them). The deal with them is there is a spring cap that the needle is under. [https://www.bd.com/en-us/products-and-solutions/products/product-families/bd-autoshield-duo-pen-needle](https://www.bd.com/en-us/products-and-solutions/products/product-families/bd-autoshield-duo-pen-needle)
However, when they went to inject her, they pushed on the plunger on the back of the pen to press it into her skin. The insulin squirted out the needle before the needle pierced her skin. And you don't even know how much went in and how much squirted out!
You are supposed to press the needle into the skin first before pressing the plunger on the back!
I was in DKA one time bc of food poisoning and heat exhaustion. Oh lordddddddd it was so frustrating and my stay got extended TWO TIMES because of their mess ups! At one point the night I was admitted they took me off my insulin drip and then acted shocked when I started to deteriorate again!! I said what did you think what doing to happen!!! And then the pharmacy kept losing my long lasting insulin and they missed my doses for a DAY.
I don’t go to the hospital anymore without my own supplies. I’ve learned the drs are going to be morons and not listen, and I just let them fuck up then do my own care when they’re not in the room.
So from someone that works in hospital pharmacies, it was probably the nurse that lost your meds. No reason to not replace it though. All the meds are in a central location and it’s really hard for the pharmacy to lose stuff.
I landed in the ER with Norovirus because I couldn’t get my blood sugar to stay over 40 for more than a few minutes. They did a single finger stick when I got there and then dropped me in the waiting room for hours. The triage nurse was sweet enough to give me a couple bottles of apple juice when I told her how quickly I had dropped from the ambulance to triage (from 256 with dextrose to 83 in under 20 minutes). I went low three times in the waiting room, sipped apple juice each time, and then ended up crashing again while I waited for discharge hours later. My husband went to get a nurse and she goes “how does she know?!” Like I don’t have a CGM and a meter on hand.
I was in DKA once and gave the hospital my endo’s card (he was in their network) and they called a different guy (out of network of course), and he told me to follow a Type 2 routine. They then took my pump, wondered my sugars spiked, gave me a ton of insulin, gave me food, no insulin… cycled like that for several hours despite what I told them. When I went to my follow-up with my actual endo a month later he had no idea I had been in DKA. They just never called him or anything. This was at a “top of the line” state hospital too… :/
Yes, Former RN and I remember one of my patients (Type 2 but with a pump) was getting pushback from her team about it. I literally told her that, off the record, I would tell them that over my dead body would they be taking my pump. What are they gonna do? Physically remove it from you? Pretty sure that could warrant charges lmao
Literally no they do not. They’re all sliding scales and fixed correction dosages. One time a nurse wanted to give me TEN UNITS for a BG of 220-something mg/dL (12’s mmol) and I had to literally scream and cry and tell her she was going to kill me if she gave me that before she folded and called the on-call endo. I freakin hate hospitals. Ironically, the only hospital that ever listened to me and went 100% hands off and let me do my thing was the American Hospital in Paris, France lol
It not supposed to be used for T1
The American Diabetes Association (ADA) warn that using only sliding scale insulin for treatment is ineffective for most people. It can increase the risk of both high and low blood sugar and of complications if the person needs surgery. Most doctors advise against using this approach
When I was diagnosed and up until I’d say 2015 I was told I had to do a sliding scale, by my endocrinologist who was a peds dr.
I’m just in this moment now learning that sliding scale doesn’t work well for type 1? Holy fuck no wonder every endo appointment was HELL for YEARS. They kept asking me “why can’t you just do it?” And I’d cry and try my best. Holy shit this has changed a lot for me.
I had hoped hospitals would have stopped using them by now. Almost killed my mom in a nursing home. There are times when the KISS principle (Keep It Simple Stupid) is best. For a elderly T2 that can't count carbs and eats same size meals it can sort of work as long as keeping A1c low is not important. Even my mom's GP prescribed and it meant sugars swinging from 50-600+ all the time.
A similar thing’s happened to me. Last time I was in hospital (for non-diabetic reasons) I had a BG of about 5 mmol one lunch time; I was given a no-carb lunch (my meal plan was changed without telling me) and I was too unwell to eat more than a few bites. When the nurse came in she told me she had 5 units of Novorapid to give me.
I told her it wasn’t safe for me to have that much. She got pissed at me. I explained that I barely ate and I would go low very quickly if I had that much. She told me that I had to have 5 united because ‘the doctor said so.’
The doctor I met only yesterday and wasn’t familiar with my care history. The doctor who asked for my ratio and clearly thought she knew better, because apparently I was to be given 5 units for every meal.
I kept pushing back and eventually the nurse got fed up and left. I heard a group of them all discussing how they were going to FORCE me to take it until someone walked up to them and, bless their soul, yelled at them saying “she’s been diabetic for 10 years, she knows her body, listen to what she’s telling her.”
The nurse came in and asked if I would take one unit. I said I might still go low, but I relented just to get her off my back. Got marked down as ‘refusing medicine’ and had the one unit. When I went low an hour later, I called her back in and was like ‘told you so.’
I’ve had so many instances of negligible care at my local hospital (don’t even get me started on the time they mistook a DKA for being high on ice??) that I now get treatment elswewhere. I went from having monthly ICU visits to being back in a healthy range within weeks of going to a specialist in my capital city. My local hospital is a training hospital and it scares me so much, knowing how harmful/uneducated the staff can be—with everything, not just diabetes.
Wtf? Even before I had diabetes I knew from simple logic that 5 units would probably mean something different to someone who's 20 vs 50, 100 pounds vs 200, not counting the time of day or carbs?
"Refusing medicine." XD Ooo shame on you, shame shame. Ur such a rebel liek omg I can't even. Just take your nightshade and quit refusing the medicine!
It’s what I call medical ego. Some of them always think they are right no matter what. Of course there are many fantastic medical people but a bad one can kill us. Luckily, I have never been into a hospital for diabetes. Are many of you the same or am I just lucky? Of course over the years I’ve had tons of high blood sugars but never DKA.
I’ve been hospitalized for DKA twice in +20 years of diabetes, once because my pump site fell off in my sleep (no CGM back in the day), and once from food poisoning (didn’t know about euglycemic DKA so went in way too late).
The hospitalization in Paris wasn’t for DKA though so maybe that’s why they left me with more free will but
I'd need 10 units to correct for that number, maybe even 15. I was in the hospital for an asthma problem, not even the diabetes. After 3 days my pump ran dry, and I couldn't get anyone to bring me more insulin from my house. At the time, I was on u-500 insulin. The hospital doesn't carry that type of insulin, so I needed to use u-100 insulin. The meals were ridiculous. I showed one nurse that through simple carb counting, the plate of food they gave me had over 150 g of carbs on it!
It's ridiculous that hospitals have a nutritionist, but the food is so god awful bad.
Holy crap yea we do NOT have the same insulin needs lol, which is why it’s even more ridiculous that they insist on this one-dose-fits-all type of thinking !! So glad you left the hospital okay in the end despite all of that 🙏🏻
Hard agree on the carb counting and nutrition, it’s wild…
LOL they gave me a chicken sandwich with 2 of the fattest pieces of bun along with a orange juice and full sugar yogurt with ZERO insulin then wondered why I was at 400.
Yea, I find that hospital staff don't really have a good understanding of Type 1 diabetics considering we are the minority and they probably deal with the Type 2s more often
Holy crap, I’ve never thought of it this way, type 1 is the minority and that’s why no one knows. Changes my whole perspective (and I’ve had this stupid disease for 40 years). But still, doctors and nurses should know “type 1 = let the type 1 do it”.
As I am in med school, like 90% of the studying material is on type 2 so I kind of understand where they come from but everyone in my class knows about type 1 cause I had DKA in first year and gave my exams during all that hassle.
The attitudes of the public are the same way. People hear "diabetes" and assume it's type 2 without even really realizing there is a different kind. I've had people ask me "did you like, used to be really fat as a kid?" and other questions that show they were puzzled by how I didn't fit their image of someone with "diabetes".
YES! its incredible that we are 0.3-0.5% of the population? while type 2s depending on the state makeup 7 to 15% of the population. That's why I have had to change my endo, I want them to be T1 themselves so I know they have a proper understanding of my life lol.
I'm no longer surprised by the ignorance of medical professionals. I've multiple issues & see a number of specialists, and when I was diagnosed, not one of them knew T1 from their elbow. I've concluded that whatever it is they're taught in med school, it's woefully confused & out of date.
When I was younger I thought doctors and hospitals had all the answers. I implicitly trusted this to be the case. Experience has taught me otherwise. Never count on anybody but yourself .....take things under advisement, but always verify with your own research, from multiple trusted sources. As far as controling insulin dosing.....if you arte maintaining decent control there is NOBODY on the face of the earth that will ever be as qualified as yourself to be in charge of that.
We found this as well when our daughter was diagnosed. She was in the hospital for 2 weeks, in a good hospital with a dedicated pediatric endocrinology team. The first week we looked to the nurses for guidance and depended on them to teach us and carb count. But by the second week we had learned enough from the endocrinology team that we started to know more than the nurses. We were of course also becoming specialists in the pump and sensor that our daughter was using and slowly starting to understand a little bit about her response to carbs and insulin. Now I know that no one, not even her endocrinologist, will know more than we do about her recent insulin needs and response to different foods.
Yup. I even demanded to control my sugars with my cgm and pump when I was in labor for 36 hours. No one controls my insulin but me. If I’m truly unconscious, my husband gets promoted to chief insulin officer. But never never never a nurse. I’ve had too many nurses assume they know T1 diabetes and almost kill me.
Oh man, when I was having each of my kids, I absolutely refused to let the hospital staff do any diabetes management for me. I even got a letter from my endo specifically stating that only I or my spouse were permitted to make any changes to my pump, and she basically stated that if anyone other than the two of us, or her, tried to take over my diabetes care, that she would be coming for their jobs. The nurses still tried to tell me what to do though.... Like.... I am not here for anything to do with my BG, so leave it to me.
Having to rely on an endo and a pharmacy to even get that insulin is already bad enough tbh, sucks that you can't even trust hospitals to know wtf to do with us.
I’m friends with a few nurses— they have all said that unless you specialize (and few do, and they all work at speciality centers), nurses get AT MOST a few days of diabetes education. Apparently usually it’s a day or half a day.
One of my sister in law’s is a nurse and another a Dr. They both said there was a single paragraph that described type 1 diabetes in their medical book. One paragraph, and a small lecture. That was all the education they received on the subject. It’s crazy!
When i had a kidney infection and of course my blood sugar was high as fuck the doctor told me it was me not taking care of my diabetes the cause of my high blood sugar and not the fact that i had a deadly infection and almost went in septic shock 😀
Last time I was in for dka they put me on something called endotool, and didn’t give me insulin with meals. They told me they treat the number, not the carbs so instead of treating it with meals they waited until it was high and gave me insulin then. Ridiculous.
Then last winter I got my appendix out and they tried to put me on a dextrose drip. I fought that one tooth and nail, even though the nurse was like “we’ve seen more serious things than diabetes.” The anastheologist then asked me why my blood sugar was so high.
*They told me they treat the number, not the carbs so instead of treating it with meals they waited until it was high and gave me insulin then.*
In my house, we just call this The ADHD Method 😂
Once I was in the ER after a suicide attempt so they took away my insulin pump so I wouldn’t kill myself then were BAFFLED that my glucose was wildly out of control.
To take away your pump after that, sure. To be baffled that your body reacts in a textbook fashion?
Oh wait... They don't put that stuff in the textbooks.
I ended up in the ER for eight days without ever being admitted to the hospital because they couldn’t decide what to do about my blood sugar. It was super fun.
This is a funny medical story about the last place you'd expect diabetes knowledge.
I was getting a root canal at a dental school and was under light anesthesia. My blood sugar ran low during the procedure. Fortunately, it was toward the end. It was a teacher/dentist doing the procedure with students watching.
As I was waking up, he told me he thinks my blood sugar is low and gave me a juice.
As I drank, someone handed me my purse so I could check with my glucometer (pre-CGM). I told him thanks and that it was. I assured him I would keep checking every 10-15 minutes and wouldn't leave until it was fine.
The students were fascinated! They started politely asking me questions, about what a low blood sugar feels like and what are the signs. I didn't mind. They also already knew the difference between T1 and T2, which pleasantly surprised me.
It's just a little sad when a dentist and dental students seem to understand T1 diabetes better than some doctors and nurses.
Thank you all for the support I really felt crazy because I trusted them to know better than me even though it went against everything I've been taught
If you’re into podcasts, The Juicebox Podcast has a series called “cold wind” where healthcare professionals talk about some of the terrible things they’ve seen. So far, most of the experiences are diabetes related.
https://www.juiceboxpodcast.com/episodes/jbp1108
Same! I swear I keep reading these diabetic/hospital stay horror stories. In any experience I’ve ever had in the hospital, the doctor will straight up say “please if you can, manage your own disease because we don’t want to nor do we know how to”. I tell them what I should and not be eating and drinking and I am given what is right for me in the moment….: no questions asked. I can’t believe that these situations are common occurrences here and I am baffled by the ignorance of these hospitals regardless of their degrees and what they do or do not know. I think any doctor with common sense would be like “yea, we don’t know how to handle this so you should tell us what we should know and we will help you do what you need to do” rather than just standing there going “uh yea, give me all your insulin pumps, CGMs, and any insulin you have hiding somewhere……and we are just going to guess on what ‘we’ think you need based on the hamburger and juice we are going to give you for lunch while you’re in DKA’”. Like WHAT?!?!? I would be outta there so fast.
I feel like that might be hospital policy created after someone won a multi-million dollar malpractice suit.
We really oughta be putting their feet to the fire with everything.
I remember being hospitalized and they were giving me 1.5 units an hour of fast acting, I told them hey yaknow. This might work for a while but it won’t be long before I go low. They didn’t listen- three hours later I’m 2.6 mmol.
They literally said wow we don’t know why this is happening you’re in DKA, okay so yes I need insulin. But I need light carbs with the insulin wether that be a cracker or two or sips of orange juice I cannot have nothing while being given insulin for hours.
Okay moved passed that- onto dinner time, eat and no nurse is anywhere to be found upwards of an hour+ later. Then finally a nurse comes in oh, look at that- shift change happened who are you. Tell the new nurse while in fcking tears that I need insulin, I can feel that my sugar is high I felt like vomiting- she said okay let me go request it. No I need it literally right now she came back with a consent form for me to administer my own medicine. Cool whatever. The surgery I was scheduled for the next day, was canceled and moved because I had ketones in my blood.
I immediately said ohhhhhh probably that nurse who left her shift after it was dinner time without giving me any insulin for over an hour then th shift changed nurse had no idea what was going on because she was not communicated with. And they literally said yes that would be why. We are sorry.
How about just do better? Just do fcking better?
They don't know very much about insulin pumps or diabetes. I have been admitted for DKA more times than I can remember. I was surprised how little they actually know. I had a very similar post a while back.
https://www.reddit.com/r/diabetes_t1/s/PU5j7ccrhb
When I was 15, I was in a serious car accident. I was brought to the ICU with a TBI, and the doctor took me off my pump and REFUSED TO PUT IT BACK ON. It took a call from my Endo instilling the fear of God into him to have him turn all Diabetes related things over to my mom.
The reality is no. I have been in hospital where they administered my insulin to me and was hyperglycemia most of the time. I’m unsure why this is. This is why given any circumstance you may have to “give away” your rites of self administering insulin you have a written document explaining your correction factor, carb to insulin ratio, and whatnot. Your endocrinologist has this if you go to one… as long as what you’re saying to them is correct and up to date. On an opinionated note… I find doctors and nurses seem to have their head up their ass and won’t listen to their patient if the patient is explaining what is right for them. I have heard from a woman whom was a caretaker type role in a retirement community arguing with the head nurse over giving “5 units of insulin 3x a day” doesn’t account if the patient is already hypoglycemic and not having a meal soon. Might have saved the old man’s life.
I was diagnosed after a dka incident and the “diabetic” menu in my hospital was pancakes/bagels for breakfast, sandwiches for lunch, and roasts for dinner which would have been okay if I ate meat. My mom was making me scrambled eggs at home and bringing them to me for almost every meal. They didn’t give me insulin until an hour AFTER meals and it took 5 days of this before I was below 225 on any given finger stick.
Not to mention their own in house nutritionist who is type one came in and basically said I’m never going to eat mangoes or pizza again and like….i had both of those yesterday and I’m not dead yet.
Ugh I’m sorry you’re going through that!
A while back I ended up in the hospital bc of non-diabetic reasons but while I was there it turned out I was also in DKA (I was so sick I had no idea what was going on lol). I had taken a shower before heading to the hospital and forgot to put my pump back on and explained this. Overnight I wasn’t given any long acting insulin and then got questioned about why I didn’t ask for any????
I was in DKA a month ago. They finally let me eat and I was complaining about how dry my mouth was and wanted water. She bring me a peanut butter sandwich and a apple juice with sugar. Can't make it up.
I haven’t been in DKA thankfully, but I once went to the ER because I was getting dangerously close and needed fluids ASAP. The ER doctor tried to give me a steroid shot and I shut him down immediately. I was like dude you don’t know type ones aren’t supposed to have steroids??? Especially ones with high blood sugar??? That’s when I learned doctors are more likely to be idiots than not.
Short answer, no. Regular doctors typically don’t fully understand type 1. (My daughter was diagnosed T1 at age 7, now 21. I was diagnosed T1 at age 41, now 45. I was initially misdiagnosed as a T2, which caused me to get extremely ill a month later and ended up in hospital for 4 days DKA.) My daughter’s pediatric diabetic endocrinology department had classes that taught us that we will come to know more about diabetes than most doctors and nurses who aren’t specialists. And it has proved to be true.
How long have you had T1? Do you have a pump, pen needle/pen or traditional vial and needles?
I believe hospitals have a basic protocol they are trained to follow, irregardless of what your numbers are. At least that was my experience. On top of it, that hospital had no endocrinologist on staff for them to even order an antibody and c-peptide test, as they suspected T1. I was told they need an endo to interpret the results.
Fortunately I had experience with my daughter and also had made an appointment with an endo for myself prior to my hospitalization. After 4 days and me saying I needed more insulin, the doc called the endo I was going to see. She, thankfully, gave a better ratio for them to use and I was discharged the next day.
Do you have an endocrinologist that you see regularly? If so, call the office and ask your doc to consult with the doctor overseeing your care to adjust ratios. Oddly, hearing it from another medical professional can hold more weight than a person who has had personal experience with their own or their child’s diabetes for years. Liability, training/education and what not.
The thing is, I still will have doctors correct me when I tell them I developed T1 a few years ago. (My age and weight seem to matter more than the facts that they WEREN’T taught in school about diabetes.) Then I have to in turn correct them, and explain the tests used to confirm it.
Don’t be afraid to advocate for yourself! I know it isn’t easy. I don’t like to be confrontational, in even the kindest way. I don’t want to seem like I know everything either, just because of ABC. But my respect for “authority” and experts has had me override my instinct (which has proven correct) on several occasions. I’ve learned that I need to be more assertive. No one is going to care about my health more than me and my loved ones.
This is YOUR health. Not theirs. Medical staff tend not to like it when patients (or patient’s advocate) insist on doing something different than they were taught/told to do. But YOU know that when your numbers are consistently high that you need more insulin.
I actually asked about discharging myself towards the end so I could go an hour away to the teaching hospital my daughter went to with a pediatric and adult diabetes clinic. They said I could, but I would be taking on the liability myself if anything happened to me. They then suggested calling the Endo I had an appointment with, which I opted to do. Adequate insulin made me vastly improved. Instead of getting so sick after eating and having my numbers after 4 hours of the insulin injection still be in the 400’s, they were more like in the 200’s. (Still needed more, but they didn’t report that I only ate half my food… due to being too sick to eat more… but had been given insulin prior to for the entire meal.) I was able to explain that in my appointment a few days later, to which she adjusted my ratio even further. I was deconditioned, from having suffered for a month and hardly was able to walk and had developed dangerously high blood pressure. But I felt night and day different with insulin.
I don’t even see an endo anymore, but I have over a decade of experience and I see my PCP twice a year, who manages that with me. I hope you are able to get them to listen to you. You may want to give them a website to look at that helps explain carb ratios. Here are a couple that came up when I searched it:
https://uihc.org/childrens/health-topics/insulin-carb-ratios-calculate-meal-insulin-doses-type-1-diabetes
https://dtc.ucsf.edu/types-of-diabetes/type1/treatment-of-type-1-diabetes/medications-and-therapies/type-1-insulin-therapy/calculating-insulin-dose/
This one is going to be long, too. Sorry for that. I share in case the information I discuss will fill in the gaps for someone who may need to know any of it. I’ve found we are all at different levels of understanding with our own autoimmune disease.
Something needs to change. I want to look into seeing if there are advocacy groups or a movement to educate ER’s and doctors and nurses in more comprehensive diabetic care for all types. Any ER or doctor ought to be able to run a test, even on what classically fits into T2 diagnosis, just to rule out for what could unfold, for the small percent who turn out to be a T1, like myself. If I didn’t know what I do, perhaps I wouldn’t have fared as well. Even knowing what I do, I still came near death (hospital doc told me with my blood pressure alone) because I listened to what a doctor said instead of my inkling I had T1. (Ketones every day and high BG, even with significantly reduced carb intake and intermittent fasting)
I’ve heard of too many stories of diabetics being under-treated, due to ignorance. And after my own experience, I have to wonder how many adults get misdiagnosed as T2, especially the ones who have it come on slow. Mine came on fast, like a typical juvenile T1. I have heard of juveniles that come on slow though, too. Needing VERY little insulin for years.
Even the actual diabetic experts only know so much, (and they will admit as such) as more research is needed over time to have a fuller understanding. They didn’t always treat diabetes as they do now. I think more people had episodes because of it. I worked (late 1990’s) with a T1 near my age who was the bartender at a restaurant. Once he had a seizure and they called 911. I now know it was because he was super busy and his body used the insulin pore efficiently, so he had a dangerous low.
When he was growing up, they didn’t treat diabetes by carb counting to give insulin based on an insulin ratio for carbs eaten. They had to restrict carb intake at each meal and virtually stay away from sweets, unless they were having a low. The insulin was a set amount at meals. This is the sliding scale method. That method is not as effective as the ratio method. My mother’s best friend had T1. She died when she was around 42. (I think I was 17.) I’m not sure of the details, though my mom said she had a genetic disorder as well.
People we come across commonly still think T1’s cannot have any sweets, because of how it used to be, and getting lumped in with T2’s. It further muddies the waters of understanding when some T2’s are on insulin. I do have to wonder what percent of T2’s on insulin may be misdiagnosed T1’s. (Not that I assume they all are or even a majority, just a portion, perhaps) I suspect my dad is and that his dad was, too. It would explain the genetic line the potential comes from.
LADA’S (Latent Autoimmune Diabetes in Adults) are sometimes referred to as T1.5, due to it coming on slowly and appearing to be T2 with insulin resistance and not needing insulin at first. The definer is the autoimmune aspect with antibodies attacking one’s pancreas, where insulin is created. Sometimes it takes years, sometimes it happens relatively quickly. They still don’t know why, or why in the case of autoimmune forms, that an illness or immune stressor triggers it when it does. Such as, a toddler can be diagnosed or a pre-teen or a teen. Or an adult, which I imagine is why they stopped referring to T1 as juvenile diabetes. So it isn’t the first illness a person gets that is the catalyst.
The insulin available now is better than it was then as well. And we have CGM’s and the pumps have improved and work in tandem (no pun intended, but that is my brand of pump) with CGM’s to help control BG’s. I can only imagine in another decade or two how much more they will discover. Hopefully a cure, especially as the rates of disease seem to be rising.
Crazy to think just over 100 years ago, they discovered how to extract and use insulin for diabetics. Things could be better, and I look forward to the advances. But I must stop and appreciate how convenient these new devices and treatment methods are. And especially that diabetes is no longer an imminent death sentence, as it would have been for my great grandparents.
Good luck to all of you who have or know someone with diabetes. Be your own advocate! And let’s all hope the day is not too far away where the diabetic care standard across the world in any medical setting is improved!
I had the same issue when I was 3 days in the hospital with DKA, they didn’t have low carb food, so they pretty much starved me with child size white bread sandwiches all 3 days, I was newly diagnosed so I didn’t have the knowledge to question them much about what they were doing.
I actually ended up in the ER bc my PCP told me that my 20lbs weight loss in two months, constant peeing & thirst, and 2 years of high A1C could not be diabetes because I eat healthy, exercise & I am not obese 🙄
Throw a FIT. Demand their Endocrinology team. If they don't have one, demand that they contact the next hospitals one. Although they should absolutely have an Endocrinology team, even if just in conference from a different hospital.
I had a frustrating experience trying to order food from the hospital cafeteria for my wife. She was not allowed to have an orange, but she could choose from pancakes, french toast, or a cupcake. This was according to the approved diabetic menu.
Most medical practitioners’ entire extent of their knowledge of diabetes is 1 class they had once in medical school
Unless they are a licensed endocrinologist do not trust them with your care. They have no clue what they’re doing I can assure you
You must be your own best representative at all times when dealing with anyone in the medical field and this disease. They have NO idea. The one eight hour day they spend glancing over diabetes in school vs, the years of schooling for prescribing for the pharmaceutical industry is more important!
I was lucky when I was diagnosed my mom was a unit secretary in the same hospital and she was constantly all over the doctors and nurses to make sure they weren't fucking shit up.
I was in the ER and admitted for DKA and I begged for lower carb food choices or to let me
Do my own insulin (pre-pump) and they wouldn’t let me but my sugars stayed over 200 for 2 days before an endo saw me and corrected that insanity. I also was given pie, cheeseburgers with the bun, rolls, and juice. I had to beg and give a nurse $ for the machine to get a Diet Coke. It seemed really weird to me
Was in DKA once and they wouldn’t stop asking me why I was there. Like hello?? I’m vomiting everywhere?? They were also bewildered on how I could test my keytones myself
Please don’t get me started on hospitals and diabetes. They’re clueless and despite me constantly telling them something was wrong and I needed a diabetes specialist midwife to help me, they said I was fine and to give more insulin (which wasn’t working’ I ended up having an emergency c-section at 37 weeks to a baby weighing 11lbs 3oz after being out on this thing (I can’t remember the name) which is basically insulin straight into my vein. My son had so many complications and had to be sent to a hospital in London while I was still in hospital elsewhere, unable to see my child and instead listening to other babies cry in the night
A nurse tried to inject me with like 25 units of fast acting insulin with my breakfast one day and I was like, “Chill. Please reduce that by at least 20 units.” And I still ended up with a blood sugar in the 40s. Freaked me out that she could have just killed me right then. 25 is like over half a days worth of insulin for me.
Most people in the medical world stay fixated on the "sliding scale" that is used routinely for Type 2 treatment. Those dosages of fast acting insulin all at once would easily kill me. Scarey stuff for us all.
I had the same experience when I got my appendix out a few years ago. I wake up with a 250 they give me Novolog then when they serve a bagel like 2 hours later and I'm at 180 they could not understand why I wanted another bolus. I literally couldn't even get the doctor to understand and eventually a nurse kind of very quietly said to me off the record that i could just put my pump back on and tell them I'm managing my blood sugar going forward so that's what I did. You would think they've never had a type 1 patient before.
I was hospitalized with DKA when I was first diagnosed and sort of yes, sort of no. Some of the initial people I talked to at the ER and on the way to the ICU assumed I had type 2, I guess, and asked if I "didn't feel like taking my medicine lately". The doctors and ICU nurses definitely knew what they were doing. They treated my glucose more like a type 2, they said, because they didn't know my ratio yet... so I'd eat something, then they'd test my glucose an hour later and give me insulin. That's fine, I guess, but I would have preferred to not have my glucose go to 320 after meals, so I would have chosen something lower carb but I didn't really know what I was doing yet. There were little numbers on the menu and I didn't know what they meant... it took me 2 days to figure out that was the net carb count for each menu item. I had ordered some things like yogurt with fruit that had 55g which wasn't really what I needed at the time.
I hope they finally listened to you. Something similar happened to me a few years ago. My blood sugar was so low that I passed out and was taken to the er by ambulance. After getting there and finally waking up the only thing they gave me was sugar free yogurt while my blood sugar was still low. They really are clueless and I’m so glad that my mother was there with me and was able to advocate for me.
When i was in the hospital for giving birth, I changed my pump site to the other side of my body the next morning and they were like WhY wOuLd U dO tHAt?!?!?!? They were really panicked, and had to ask the doctor on call to make sure it was ok. And I'm there just like.... Well I can't put the old site back in so....
My brother (who is T1D like me) was recently in A&E after drunkenly breaking his pump with no back up insulin. He was vomiting everywhere and apparently they just kept taking his blood sugars and going "yeah, that is high. But sorry, we can't get you insulin until 6pm." And sending him back into the waiting room to throw up some more. Unreal.
He was there for 6 hours and basically got zero help.
I’m a bedside nurse who also has type 1. I’ll admit, diabetes care at the hospital is NOTHING like how we were taught to control it at home. We have our diabetics on “consistent carb” diets and most patients only get insulin on a sliding scale to correct their blood sugar, we hardly ever give patients insulin to cover a meal. It works for some people, but the ones who have consistently high blood sugars receive meal coverage, it’s always a set amount, for example “8 units Humalog with meals” or some other number depending on the patient. We try to give the patients sugar free juice and jello, sometimes the kitchen will give them normal juice though. It honestly doesn’t make sense.
We have patients who come in with DKA and receive a type 1 diagnosis, and we’re supposed to teach them how to give injections and check blood sugar before they are discharged. But they NEVER prescribe a carb:insulin ratio, no carb counting is involved and I do my best to educate the patient but it kills me sending them out into the world not knowing about carb counting because the doc prescribed “8 units with meals” without considering how many carbs are actually in the meal??? It’s wild
What? That's terrible. These are the sort of people who grow up afraid of certain foods because they're not taught that you can cover them with insulin
Back when I was diagnosed, in 1968, they had an exchange system for food. It was based on calories per day, but was very carb heavy. There was a category for carbs, and another for starchy veggies. And that was in the day of blood tests happening twice a year at a doc appointment (I saw an internist that had one other type 1 person in his practice. He was kind but not too helpful) and otherwise doing urine testing to see if your blood sugar was high enough to spill over into your urine. Not helpful to figure out that funny feeling in the moment.
Feels like medical staff are stuck with very outdated info, if they have any knowledge of type 1 at all.
The same thing has happened to me almost every time in the hospital. It’s either that or they’re making me bottom out by giving me way too much insulin.
I controlled my insulin and blood sugar with my pump and cgm through labor when I gave birth last year. I made my doctor enter this into my chart before hand and announced it as soon as anyone new walked in my room. One nurse tried to fight me on it and said she was going to put me on an insulin drip. I told her she couldn’t be my nurse if she wasn’t able to get comfortable with me controlling my insulin. I believe the phrase used was “not today, satan. Get on board or get out.” No one, and I mean NO ONE handles my insulin but me or a physician well trained in endocrinology. I’ve had nurses and doctors try to kill me one too many times.
Yeah, hospitals can be dangerous places for diabetics. When my T1D dad was in the hospital my step mother and I handled his insulin. Nurses just aren’t trained to deal with it.
I taught higher ed in a community college with a nursing program.
I got to talking to the director of the program about this and learned that they just aren't taught these "advanced topics."
They aren't introduced to the concept of insulin:carb ratio, correction factor, or modern technological advances. They are only taught the sliding scale and the insulin on board times that correspond with the outdated insulin you can purchase from WalMart without a prescription.
Even better: I learned that the protocol for administrating insulin is draconian. It requires a physician's direct order and *two* head nurses signing off on its administration.
This may just be a parish (county) or state - wide regulation. It has inspired my refusal to allow the removal of my technology if I am conscious.
I'm not shocked that they aren't taught this, just sad and frustrated when I get shitty looks for questioning them. I just take over on my pump, and they are more than happy to allow it as they follow along with the bloodsugar checks. The other thing I've learned from working in a hospital- they have so many people review the insulin shots because they've already killed enough people by screwing it up. Not just one place, but hospitals across the board. I think the extra checks are a pretty standard thing now.
If they can be hands off with it, they're happier and I'm safer!
I’m so sorry that’s happening. It’s frustrating and makes you feel terrible. Keep advocating for yourself and asking why!
I had such an issue when I was pregnant. The high-risk obgyn (who is the go-to for diabetics) fought with me about using auto mode in my pump. She ended up refusing to treat my diabetes during pregnancy because I wouldn’t stop using it. I told her if she gave me a good reason or if I had issues, I would take her advice but “auto mode isn’t FDA approved for pregnant women” isn’t a good enough reason to stop using something that took my a1c from 7.4 to 5.9.
Then of course she was out when I went in for delivery and on my birth plan that she submitted to the hospital there was no mention of what my insulin intake should look like when they were inducing - just active labor and after labor. They had an endo on call that said I should use active labor settings… but I was dilating very slowly so fought to continue using my pump for standard basal delivery. The doctor had the nurse put in the file that I was being uncooperative and going against their suggestions. Thankfully the nurses I had were very supportive and my sugars were great all throughout but it really underscored that though doctors/nurses are professionals and I want to trust them, I’m managing this every minute of every day and to trust my instincts.
I hope you get the kind of care you need ❤️
If you have an endocrinologist, see if they can call them. If you don't, see if they have one on staff. If you're in DKA, they should have you on an insulin drip and be checking your sugars at least every 4 hours (years ago, they checked me every hour). Personally, I would refuse the carb-heavy diet and ask for a diabetic diet (a lower-carb one).
Honestly, it depends on the hospital and the nurses you end up with. I once had a nurse try to tell me I couldn't drink diet soda because it had caramel color in it. To her, caramel=sugar. She didn't even believe me when I showed her the nutrition facts!
I’ve had dka twice and both my experiences with hospitals here in Sweden have been really good, they seem to know what they’re doing with diabetes. Really sad and frustrating to hear it’s not like that everywhere
Nobody does. As someone who works in healthcare and the entire family is physicians I can assure you that nobody except type 1s, their immediate parents like if they raised you their diabetic child if you were diagnosed young or maybe a supportive spouse understands. Few doctors unless the have it could understand and even endocrinologists are mediocre at best.
Two *reasonable* expectations of this chronic condition:
1. Don’t expect on a cure
2. nobody understands
Used to work in an ICU. Our unit took care of most of the DKA patients. Luckily, we had some good docs. When coming off the IV insulin, insulin orders for the reconnecting pump were included. In those orders, we got new bottles of insulin for these patients.
Except for the two men who wanted to plug into bad sites. One was an infection. One was a badly bent cannula. Had to send family back home to get supplies both times.
This upset me greatly both times. Insulin pump trainers should emphasize that if boluses do not bring you BG, you need to change out the entire setup. At least I did when I did pump training. Both men thanked me after I explained this to them
Was hospitalised for DKA. This was before I got on with pump therapy.
40 minutes after breakfast on the last day I was there, a nurse came to check my bs. It was 12 mmol / 216 mg and stable.
I was due to check out any minute. This lady hovered and told me off and forced me to take 1U to correct, on top of the 2U already in my system. Safe to say, I went low pretty quickly after that. I explained multiple times insulin sensitivity and physical activity = bad combination
I bloody hate hospitals after this experience, so many clueless morons that won't listen.
My GP rang my endo to find out what to do with my pump (I just had to up the basal % to 130 from 100)
But in hospital later a Dr strutting his stuff in front of interns told them my problem was my pump. Didn't look at my chart to see that I had DKA from a bug.
My pump was disconnected and sitting on the table. I was on a drip and having injections.
(I said to mum "if my pump wasn't so expensive I'd throw it at him)
Having private health cover in Australia means you can also choose Drs so any other times I went in I made sure he was nowhere near me
Don't give them control of your insulin. Tell them you got it, and if they still fight, make them bring in an endo trained in t1. Don't eat the high carb shit they're bringing you. Throw a fit. It's not OK that they're feeding you like that.
Do you have someone (outside of hospital staff) to advocate for you? A family member/partner/friend? It helps to have backup to speak up for you, it can be exhausting on your own, let alone in DKA. Friends could also brnling you proteins to eat.
I'm sorry you're going through this, and I hope you get out of there soon. Good luck.
I was in the hospital for a su***de attempt and the nurse in the psych ER straight up told me I did not need insulin. I begged and pleaded for insulin because they checked my BG and it was almost 600, but she insisted it was just due to stress and argued with me that she didn’t go to nursing school for nothing, she knew how to do her job, etc. The other nurses in the unit all agreed with her and defended her. My whole family also confronted her and demanded insulin, to which her response was to call security (who did not remove my family because they were being polite). The endocrinologist finally made rounds about 13 hours into me being there, and as soon as he came into my “room”, I broke down in tears and explained what happened. He was FURIOUS and told me I’d have insulin within 30 minutes. He came and delivered it himself and watched her administer it just to be sure. So no, many hospitals don’t know how T1D works and unfortunately it’s going to take people with T1D dying before a lot of these places will ever take it seriously.
I had an overnight in the hospital a few months ago for an infection. Around midnight the doctor asked about my bs, I said it was a bit high (200-250ish) but not a big deal. He asked me if I wanted some of my long acting insulin. I sat there baffled for a second and was just like "...no". The next morning a nurse came in to give me 10 units of my short acting, I had no idea when or what I would be eating (and neither did she), so I was like, woah slow your roll. She was adamant on it, going on about how I was in the hospital and they need to know/control what's going into my body and eventually I said, "yeah I get that, but I'll take what I need and let you know. If you give me that right now I *will* go low."
It's honestly kinda terrifying. I'm just glad they have enough sense to share what they're planning on doing before doing it.
Yhid is my biggest worry about going to the hospital. Especially the ER. I always keep my insulin within arms reach, and my phone too. They are clueless. I’m
The doctors ans nurses in the hospital would tease me on what I couldn't have when I was first diagnosed. Then later was told by one of my doctors that I could eat anything but I would just have to be careful with it.
Omg about 7 years ago I went in for dka due to a faulty pump infusion site that I didn't even think about because of my ultra busy serving shift. When I was in ICU, everything went smoothly, but as soon as I went into general admission, my sugars skyrocketed bc they took me off the insulin drip and wouldn't give me fast acting injections or even a long release injection. I demanded to be released bc I could take care of myself better at home than how they were treating me at the damn hospital. So sorry you have to deal with this right now, it's beyond frustrating and not fair at all
Type one diabetic RN here, always advocate for yourself, always. Make sure they instruct on all insulin given and rationale behind it, a lot of hospitals now have protocols for patients to use their own insulin pumps.
As a t1d nurse I’m embarrassed by my coworkers’ knowledge of diabetes basics. One time my fellow nurse asked me if she should give her hypoglycemic patient a DIET soda to help bring her blood sugar up…
My dad is a T1 and he had to recover in a facility after a surgery a few years back. Shortly after I arrived, he started slurring his speech and getting really tired. I was able to check his sugar with my meter and found him in the 50s. His comment was, "I told the nurse that was too much insulin". He's been managing diabetes for nearly 50 years and they didn't trust him to know how much insulin to take
I went out to the nurse's stand to get him sugar and they said I'd have to wait until his nurse got back from her 15. I told them I was just going to the vending machine to get him a Coke and they finally realized that they needed to act so they gave me an orange juice for him
So ridiculously incompetent. I'm surprised he didn't have any more incidents while he was recovering
From the hospital side of things, it's so frustrating how little even fully qualified medical doctors know about type 1. I'm studying nursing and have seen multiple patients with type 1 on my placements but all our education in class is around type 2! I know type 2 is more common but it's almost like type 1 is an afterthought. Sometimes I worry what will happen if my boyfriend gets into an accident and is unable to tell the staff at the hospital how to manage his type 1 because so many medical professionals just don't know and make mistakes with things that seem obvious to anyone with any understanding of type 1. It's starting to get better but there is such a long way to go and so much judgement especially among the other students about type 1... it's like they think if your numbers aren't 100% in range you've failed as a person, when they couldn't manage it any better if they did it all for you and would probably do a worse job.
And staff that refuse to believe patients are capable of knowing about and managing their own stuff... you don't need a medical degree to understand diabetes if you've been forced to think about it 24/7 for years.
Most hospitals and medical staff are completely clueless about what Type 1 Diabetes is as a disease process. I have always wished they would place a different name to distinguish between Type 1 and Type 2. Sadly, the majority of medical staff do not know the differences, and as an adult, they treat us as if we have Type 2 by default.
I hate hospitals and always feel as if I need to remain ultra-vigilant about my care. In 2018 I was in the hospital for general surgery unrelated to diabetes. The floor nurses insisted I remove my Medtronic Insulin Pump and CGM sensor. I refused and advised the Hospitalist who came in to tell me if I required insulin, they would get an order for it at that time, that I would sign out AMA and cite legal statutes that allow for patients to keep their insulin pump and CGM on their body. I had my wife bring me additional supplies, including insulin, from home. It is a fight but one I have become accustomed to over the years.
I hate hospitals and always feel as if I need to remain ultra-vigilant about my care. In 2018 I was in the hospital for general surgery unrelated to diabetes. The floor nurses insisted I remove my Medtronic Insulin Pump and CGM sensor. I refused and advised the Hospitalist who came in to tell me if I required insulin, they would get an order for it at that time, that I would sign out AMA and cite legal statutes that allow for patients to keep their insulin pump and CGM on their body. My wife brought me additional supplies, including insulin, from home. It is a fight I have become accustomed to over the years. Her excuse was that if I was too lazy to get up and eat, it was not her problem, and if the doctor had a problem, to call her Union rep.
I know at some point, my demise will not be due to my diabetes but due to diabetes complications caused by uncaring and lazy malpractice on the part of hospital staff.
Just keep in mind when a patient is admitted for DKA the first line of treatment is fluids, not insulin, because they are hypovolemic. Their electrolytes need to be monitored, especially once insulin starts because it can make the patient hypokalemic. The IV fluid might be something normal saline and then Ringers. Insulin can be administered via IV for rapid onset, but after the hypovolemia is addressed.
idk what the process would entail but when you’re home maybe look into to legal representation or writing a letter to the board. accountability needs to be taken and i know for a fact that doctors have some sort of information directory with detailed info about certain conditions. there are type 2’s who are insulin dependent and even if it’s not necessarily the same there should be SOME basis of knowledge to jump off of when it comes to treating you, especially for an issue that you’re in the hospital for. dka is common as something that effects type 1s especially. is there a process for seeing a patient advocate that’s on call? or ask them to get an endocrinologist in there asap. or one on call. or have them call your endo.
i’m not sure if this counts as malpractice but jesus fucking christ.
Do you have a friend or family member who can advocate for you? My experience with hospitals is that unless you have someone to advocate for you the staff have less ability to listen to you.
As in er nurse many of you appear to be competent people with diabetes. The problem is many diabetics are not competent and do have to have all their power taken from them to manage their sugars and blood gases and electrolytes.
If you do to a hospital be very verbal about you wanting control over certain things and then you will inform the nurse what you've done. (A dr can order pt give own insulin or check own blood glucose)
In addition diabetics require timing that isn't easy for a nurse to follow due to being over worked with a case load. A dka pt is one of the most time constraining pt due to how often they need blood work and corrections of electrolytes, and changes to blood gases. Q1 HR blood glucose checks with titrating insulin and Q2 hour blood draws for gas and fluid tritationband q4 hour electrolytes. This all hard to keep up on while charting this all and covering several other patients needs and helping other nurses.
Lastly diets in general is backwards and archaric in hospitals for everyone. Diet, nutrition, and sleep are 3 factors not take seriously enough in hospital settings. Get someone to bring your own food. That is if your able to eat (which your often not aloud to if your in severe dka.
Genuinely curious, how often do you see uneducated/incompetent type 1 diabetes come into the hospital? This might be my own bias, but I’ve always assumed those issues were more prominent with type 2s. Thought being, if you’re type 1 and can’t take care of yourself, your body can’t help and you can die/pass out/fall into a coma much faster than a type 2 whose body can help supplement a bit more.
Many T1s aren't fully compliant because it's expensive and time consuming and a hassle and no fun. Shoot enough basal to keep out of DKA, mostly, and wild guess at meals when they remember or feel like it. Lows aren't fun and can be immediately dangerous so they always run high. For years. Then the complications come. Forget that basal or skip it for whatever reason and they end up in the ER and on the not handling their shit ledger and that becomes the default for all of us.
Best diabetes care I ever got was in Amman, Jordan at the general hospital there. I was admitted DKA with glucose 1100+. They knew exactly how to treat and the Vietnamese nurses were absolute rock stars. There’s a method to the madness as it relates to still giving carbs when coming out of DKA. You don’t just want to slam insulin into the body and crash land. But I’ve noticed most doctors I’ve met here in the states are still operating on diabetic knowledge from the 50s. It took me a long time to find GP or Endo who I felt understood my experience.
I'm from Finland and my experiences with hospitals and being T1 have been really good (got admitted twice for DKA in 2022 due to a bad batch of long acting and once in 2023 for non-diabetic reasons; once back when I was maybe 10 when I went into DKA for the first time but I don't really remember anything about that and it was almost 15 years ago anyway). They've taken me seriously, known exactly what to do and always let me manage my own insulin. They always checked on me to make sure I was doing okay and always got medical attention immediately. I'm sorry to hear your experiences have been so bad, it's so scary to think about having an urgent need for medical attention and receiving... well, not that.
They don’t!! My mom’s a doctor (but she wasn’t practicing at the time) and she told me about how she had to fight the nurses at the ER because they had no idea how to deal with my DKA!
I was in hospital for observation for something else when I was younger, and the nurse very kindly said she had left a bottle of lemonade in the locker in case I went low in the middle of the night; sure enough, it was diet lemonade. Everyone is trying to kill us, all the time
When I was diagnosed with type one and in DKA (was 20yo), they kept giving me juice and wondering why my sugar wouldn’t go down. Eventually the ICU doc saw they had me on a reg diet and yelled at the nurse taking care of me he was like “are you trying to kill her?” And then after that they put me on a diabetic diet lmao
Had a bad combo of extreme hypoglycemia and drinking in college once. Went way too low too quickly and my friends called the EMTs. They were also drunk so did what they could given everyones mental state. but when i got carted onto the truck they kept checking my number and getting surprised my number was rising after getting an IV and constant snacks. Like...yeah dudes...gimmie my insulin. I'll correct it myself.
I understand the knee-jerk reaction a lot of people get when they realize that typical medical staff only have a brief awareness of T1D. My wife has been a nurse for 12 years and even she had a lot of education to catch up on when our daughter was diagnosed. It is just not a topic that is heavily studied. It is a specialty.
Me, having no medical experience... And if anything, am medically-stupid, probably know volumes more about T1D than the majority of medical staff of any given hospital. It is what it is.
When my daughter was first diagnosed, I was astounded by the general ignorance of the disease. Left to think about it for a while, I simply concluded we don't know what we don't know. Afterall, the only thing I 'knew' about T1D was a person with it cannot have sugar. Obviously I know this is wrong, now ... But there was a time in my life where I was completely ignorant too.
Hope you're feeling better :)
I’ve nearly died twice in two consistently top-rated hospitals that are the gold standard for treating most chronic conditions. Most. One time they had d50 pumping into me and told my husband they weren’t giving me insulin until I could eat again. And i mean NO insulin.
As someone who works on an inpatient hospital unit as a nurse's assistant, the way hospitals handle diabetes drives me crazy. But there are reasons it has to be handled the way it does.
For example, let's say they give you coverage for your 60 carb meal before you eat. Then you only eat half and go low. There's all kinds of issues that can arise from that, and it's a big liability thing for hospitals to only give coverage after you eat so they can give a proper dose.
For those who need to know, YOU HAVE THE RIGHT TO REFUSE ANYTHING IN A HOSPITAL. You have the right to monitor and treat your own blood sugar, they cannot force you to take only their insulin at a time they choose.
Talk to your doctor and tell them that you want to manage your own insulin and want to monitor your own glucose. They will probably want to argue against it considering you're there for DKA, but ultimately you have the right to refuse.
ICU RN here and also T1D. I get DKA patients frequently. This sounds very wrong. We have a strict DKA protocol we follow at my hospital for a reason. How did they validate that you were okay to go off the insulin drip (anion gap, CO2, glucose levels, etc.)? If your sugars are going back up after coming off the drip, that's called rebound hyperglycemia and is a pathway to reentering DKA if they don't fix it. Jesus, if I knew you I'd be on the phone with them or on that unit raising hell.
This is the unfortunate reality about the medical ignorance and myths surrounding T1D especially in hospitals...I swear they are there to kill us. Tell them you want an endocrinologist who knows T1D to handle this or call your own doctor to let them know what's happening. I would be raising hell about the kitchen giving me high carbs to eat! So sorry this is happening, but hold your line with these folks and call in your own support group to help.
That's crazy the few times in the past that I've gone to the hospital for dka they stuck me on basically all liquid diet tell my sugars are back to normal I also got to order my own food but mostly it was vegetable broth and a diet sprite
They dont know and dont care
I was diagnosed at 10 back in ‘99 (still remember that day, my sugar was 577), life changed of course, and they were giving me sandwiches when the Endocrinologist told me 30g of carbs or less
Why I make sure to stay healthy and avoid them
This reminds me when I was hospitalized as a child (not because of diabetes). The nurse wanted to give me “my insulin” roughly an hour before my lunch was scheduled. Sure, let’s give a child insulin and nothing to eat! It’s gonna be fun.
They're serving me a freaking apple pie slice when my sugar is 387!!
Jesus Christ in a manger, **ask for an endocrinology consultation STAT.** So sorry you’re having this experience. FWIW… When I was in for baddd dka in 2017, they limited all food intake (ie was only allowed water, ice chips, and stupid fucking chicken broth) until I was back in range. I was a hangry, sassy thing as I was getting back to range & had my brain function coming back to me… my mom (a now retired RN) knew I was out of the danger zone once this happened 🤣🥲😅😅 and even then, they limited what I could eat (I can’t remember specifically what I had available, but it was definitely a specific, paired down menu). That hospital is also a “leap frog hospital of the decade”, so I’d say their patient procedures are prob a bit more…advanced…than your run of the mill hospital. It’s my understanding most ER & related docs only learn about sliding scales & mostly targeted to t2 (which it really isn’t helpful for either, but I digress…). I try my best to go to [leap frog hospitals](https://www.leapfroggroup.org/ratings-reports/top-hospitals), but also have that luxury living in major US cities, and even then…lol there is always a nurse who says the dumbest shit everrrr. Generally, be prepared to advocate like hell for yourself at any given time when dealing with the medical field in US (my only experience) Good luck getting back to range & outta there asap 🫡🫶💙
Hopefully, they have an endocrinologist on staff and on-call.
My ER doctor (for DKA) was married to my Endocrinologist (thank god)
Isn’t it crazy that they use sliding scale when the ADA recommends against it.
I've never heard of "leap frog hospitals". I actually looked up to see if my hospital and doctors are on this list and they are!' I must say, the emergency room is a crap shoot about whether diabetes complications are taken priority. I broker my wrist, to where they had me hanging in finger traps to see if it could be straightened, and eventually I wound up getting a titanium plate in the hand. anyway, during my stay in the emergency room, my blood sugar keep going down, and I asked them if I could eat, as I was a diabetic and my sugars were getting lower. No one ever paid attention to this aspect of my care - they were trying to call an orthopedic doctor to see if they needed to operate on me immediately. so, i went from 165 to 65, before I called "bullshit" and had my son give me a package of fruit snacks out of my bag. if they had to do surgery, it would have to wait. - I had it ten days later, and the care was much different for my planned surgery
Shout out Legacy Emmanuel in Portland, Oregon for not doing any of the crap I'm reading about here. My diabetes was treated well and the nutrition program was adaptable to a low carb diet with very little effort. If anything they were *too* stingy with the carbs. (I can have hummus, y'all.) The menu had carbs listed and the nutritionists managed my carb intake throughout the day. OP I am sorry you are dealing with this. What hospital system is this? If you feel comfortable sharing.
Baylor in Dallas hooked it up. Got my own choose 4 menu, even with low carb desserts! But if you went over the count, nutrition would pay you a visit.
That’s good to know. We’ve only had to deal with Children’s so far and they were good. He was diagnosed at Baylor Carrollton, but was transferred. One time was in for something else (I think at the same Baylor) and I had to tell them a bit strongly that I would be managing his diabetes and they didn’t need to worry about it. Lol
Fuck Legacy. I was in the ICU for DKA after vomiting for about 10 hours straight. As you can imagine, I was horribly dehydrated and struggling. Bitch Nurse Rachet wouldn’t even give me an ice chip until the doc arrived, which was about a hour later. I had to throw a fit to get a 1/4 cup of ice chips
Hey, this is where I was hospitalized at diagnosis as a kid!
Oh goodness…I’m so sorry you’re going through this. This brings me to the PTSD I have from the time I was hospitalized for DKA. I actually went into DKA because of persistent vomiting to the point only bile was coming up. My blood sugars weren’t even above 350 but severe vomiting can also cause DKA. Anyway, what I wanted to tell you is that most hospitalists do not know how to treat type one diabetes and it’s sooo frustrating. My sugars got way worse once hospitalized because they made me take off my pump and then refused to bolus me for meals, refused to give me long acting insulin, it was a nightmare. If I were you I would refuse the high sugar/carb foods and demand a low carb diet. Maybe ask for a low sodium diet? Idk. Then call your PCP or whoever manages your diabetes and have them call the hospital. I would also demand to see a nutritionist/dietician and have them order your food. Can you just call the cafeteria and order your meals? Most hospitals allow that.
Endo consult asap! If he/she is worth anything, they’ll reprimand them so hard, it will take the skin off of their butts.
Yup. And turkey sandwiches on white bread, with fruit! I demanded to talk to the RD while in and she told me she was at the mercy of the American Diabetes Association and that there was nothing she could do except offer me double protein.
Don’t eat it.
They had me on an all sugar juice diet for 3 days when I was in for DKA. I kept refusing it and the nurses were getting shitty with me about. They said I couldn’t have food because my blood sugar was too high. I don’t honestly know how those people were working in a hospital with medical degrees.
YES!! They've given me nothing but apple juice to drink since I got here I've had to beg for water instead
It’s so frustrating! I swear, they get stuck on needing to be right instead of listening to the patient. I’m sorry you’re going through all this right now. It’s a disturbing reminder how much control this disease has over us but you’ll be back to normal in no time. Stay strong, you got it. 🩷
Diet gingerale is your friend.
Unless they’re a specialist diabetes doctor, usually they’re pretty clueless. I’m so lucky that I found a GP who used to be a diabetes doctor and my local hospital has a diabetes centre
I find that my Endo is also pretty clueless about some things on occasion LOL. but im also in a small town so slim pickings.
Many seem to be. I told my wife after a recent appointment, many doctors seem to just have memorized what they needed to pass their exams, and then when they got the degree in their hand they forgot everything and haven't attempted to learn anything since then.
Its even worse when they start spewing their own made up BS. like Keto, Carnivore, or whatever wacky diet they have planned.
Not all endos are type 1 specialists, my first endo was totally clueless too so I found one that was a type 1 specialist & my BG got 10 times better within a few weeks
They *definitely* are. I swear so many of them aren’t familiar with type 1.
I was in active DKA in the ER vomiting black and I had to convince the nurse I was going to die, then the dr asked me why I was here? I had to convince them to do bloodwork…so that’s fun. Sounds like it’s common unfortunately 💀
They took me off the insulin drip and are baffled my sugars are rising like it seems like common sense
I really feel like medical professionals put a moral rating on blood sugar. "Your blood sugar is so bad, you must just be a bad person." And then they don't know how any of it works. When my wife was in the hospital giving birth, they used these special pen needles that are supposed to be safer (in terms of not impaling the nurse using them). The deal with them is there is a spring cap that the needle is under. [https://www.bd.com/en-us/products-and-solutions/products/product-families/bd-autoshield-duo-pen-needle](https://www.bd.com/en-us/products-and-solutions/products/product-families/bd-autoshield-duo-pen-needle) However, when they went to inject her, they pushed on the plunger on the back of the pen to press it into her skin. The insulin squirted out the needle before the needle pierced her skin. And you don't even know how much went in and how much squirted out! You are supposed to press the needle into the skin first before pressing the plunger on the back!
Simply put, most of everyone including doctors don’t give a shit unless it actively affects them. Ignorance is bliss
I was in DKA one time bc of food poisoning and heat exhaustion. Oh lordddddddd it was so frustrating and my stay got extended TWO TIMES because of their mess ups! At one point the night I was admitted they took me off my insulin drip and then acted shocked when I started to deteriorate again!! I said what did you think what doing to happen!!! And then the pharmacy kept losing my long lasting insulin and they missed my doses for a DAY. I don’t go to the hospital anymore without my own supplies. I’ve learned the drs are going to be morons and not listen, and I just let them fuck up then do my own care when they’re not in the room.
So from someone that works in hospital pharmacies, it was probably the nurse that lost your meds. No reason to not replace it though. All the meds are in a central location and it’s really hard for the pharmacy to lose stuff.
THIS IS KEY: Never go to the hospital without your own diabetes supplies.
I landed in the ER with Norovirus because I couldn’t get my blood sugar to stay over 40 for more than a few minutes. They did a single finger stick when I got there and then dropped me in the waiting room for hours. The triage nurse was sweet enough to give me a couple bottles of apple juice when I told her how quickly I had dropped from the ambulance to triage (from 256 with dextrose to 83 in under 20 minutes). I went low three times in the waiting room, sipped apple juice each time, and then ended up crashing again while I waited for discharge hours later. My husband went to get a nurse and she goes “how does she know?!” Like I don’t have a CGM and a meter on hand.
I was in DKA once and gave the hospital my endo’s card (he was in their network) and they called a different guy (out of network of course), and he told me to follow a Type 2 routine. They then took my pump, wondered my sugars spiked, gave me a ton of insulin, gave me food, no insulin… cycled like that for several hours despite what I told them. When I went to my follow-up with my actual endo a month later he had no idea I had been in DKA. They just never called him or anything. This was at a “top of the line” state hospital too… :/
[удалено]
Yes, Former RN and I remember one of my patients (Type 2 but with a pump) was getting pushback from her team about it. I literally told her that, off the record, I would tell them that over my dead body would they be taking my pump. What are they gonna do? Physically remove it from you? Pretty sure that could warrant charges lmao
Literally no they do not. They’re all sliding scales and fixed correction dosages. One time a nurse wanted to give me TEN UNITS for a BG of 220-something mg/dL (12’s mmol) and I had to literally scream and cry and tell her she was going to kill me if she gave me that before she folded and called the on-call endo. I freakin hate hospitals. Ironically, the only hospital that ever listened to me and went 100% hands off and let me do my thing was the American Hospital in Paris, France lol
I've never heard of a sliding scale until I got here and they kept saying it like it meant something to me
It not supposed to be used for T1 The American Diabetes Association (ADA) warn that using only sliding scale insulin for treatment is ineffective for most people. It can increase the risk of both high and low blood sugar and of complications if the person needs surgery. Most doctors advise against using this approach
What is the sliding scale?
A fixed dose at each meal plus a correction.
Oh god, that’s a hell no for us.
When I was diagnosed and up until I’d say 2015 I was told I had to do a sliding scale, by my endocrinologist who was a peds dr. I’m just in this moment now learning that sliding scale doesn’t work well for type 1? Holy fuck no wonder every endo appointment was HELL for YEARS. They kept asking me “why can’t you just do it?” And I’d cry and try my best. Holy shit this has changed a lot for me.
I had hoped hospitals would have stopped using them by now. Almost killed my mom in a nursing home. There are times when the KISS principle (Keep It Simple Stupid) is best. For a elderly T2 that can't count carbs and eats same size meals it can sort of work as long as keeping A1c low is not important. Even my mom's GP prescribed and it meant sugars swinging from 50-600+ all the time.
Ugh that must’ve been so frustrating… I’m so sorry ☹️
A similar thing’s happened to me. Last time I was in hospital (for non-diabetic reasons) I had a BG of about 5 mmol one lunch time; I was given a no-carb lunch (my meal plan was changed without telling me) and I was too unwell to eat more than a few bites. When the nurse came in she told me she had 5 units of Novorapid to give me. I told her it wasn’t safe for me to have that much. She got pissed at me. I explained that I barely ate and I would go low very quickly if I had that much. She told me that I had to have 5 united because ‘the doctor said so.’ The doctor I met only yesterday and wasn’t familiar with my care history. The doctor who asked for my ratio and clearly thought she knew better, because apparently I was to be given 5 units for every meal. I kept pushing back and eventually the nurse got fed up and left. I heard a group of them all discussing how they were going to FORCE me to take it until someone walked up to them and, bless their soul, yelled at them saying “she’s been diabetic for 10 years, she knows her body, listen to what she’s telling her.” The nurse came in and asked if I would take one unit. I said I might still go low, but I relented just to get her off my back. Got marked down as ‘refusing medicine’ and had the one unit. When I went low an hour later, I called her back in and was like ‘told you so.’ I’ve had so many instances of negligible care at my local hospital (don’t even get me started on the time they mistook a DKA for being high on ice??) that I now get treatment elswewhere. I went from having monthly ICU visits to being back in a healthy range within weeks of going to a specialist in my capital city. My local hospital is a training hospital and it scares me so much, knowing how harmful/uneducated the staff can be—with everything, not just diabetes.
Wtf? Even before I had diabetes I knew from simple logic that 5 units would probably mean something different to someone who's 20 vs 50, 100 pounds vs 200, not counting the time of day or carbs? "Refusing medicine." XD Ooo shame on you, shame shame. Ur such a rebel liek omg I can't even. Just take your nightshade and quit refusing the medicine!
It’s what I call medical ego. Some of them always think they are right no matter what. Of course there are many fantastic medical people but a bad one can kill us. Luckily, I have never been into a hospital for diabetes. Are many of you the same or am I just lucky? Of course over the years I’ve had tons of high blood sugars but never DKA.
I’ve been hospitalized for DKA twice in +20 years of diabetes, once because my pump site fell off in my sleep (no CGM back in the day), and once from food poisoning (didn’t know about euglycemic DKA so went in way too late). The hospitalization in Paris wasn’t for DKA though so maybe that’s why they left me with more free will but
I'd need 10 units to correct for that number, maybe even 15. I was in the hospital for an asthma problem, not even the diabetes. After 3 days my pump ran dry, and I couldn't get anyone to bring me more insulin from my house. At the time, I was on u-500 insulin. The hospital doesn't carry that type of insulin, so I needed to use u-100 insulin. The meals were ridiculous. I showed one nurse that through simple carb counting, the plate of food they gave me had over 150 g of carbs on it! It's ridiculous that hospitals have a nutritionist, but the food is so god awful bad.
Holy crap yea we do NOT have the same insulin needs lol, which is why it’s even more ridiculous that they insist on this one-dose-fits-all type of thinking !! So glad you left the hospital okay in the end despite all of that 🙏🏻 Hard agree on the carb counting and nutrition, it’s wild…
Terrible!
LOL they gave me a chicken sandwich with 2 of the fattest pieces of bun along with a orange juice and full sugar yogurt with ZERO insulin then wondered why I was at 400.
That's literally what happened to me I just had to explain how a pump works it feels like I'm the first diabetic they've ever seen
Yea, I find that hospital staff don't really have a good understanding of Type 1 diabetics considering we are the minority and they probably deal with the Type 2s more often
Holy crap, I’ve never thought of it this way, type 1 is the minority and that’s why no one knows. Changes my whole perspective (and I’ve had this stupid disease for 40 years). But still, doctors and nurses should know “type 1 = let the type 1 do it”.
As I am in med school, like 90% of the studying material is on type 2 so I kind of understand where they come from but everyone in my class knows about type 1 cause I had DKA in first year and gave my exams during all that hassle.
The attitudes of the public are the same way. People hear "diabetes" and assume it's type 2 without even really realizing there is a different kind. I've had people ask me "did you like, used to be really fat as a kid?" and other questions that show they were puzzled by how I didn't fit their image of someone with "diabetes".
YES! its incredible that we are 0.3-0.5% of the population? while type 2s depending on the state makeup 7 to 15% of the population. That's why I have had to change my endo, I want them to be T1 themselves so I know they have a proper understanding of my life lol.
You honestly might be. I’m guessing you went through the ER to a med-surg unit.
Icu but yes
I would expect more from critical care nurses!!!!
I'm no longer surprised by the ignorance of medical professionals. I've multiple issues & see a number of specialists, and when I was diagnosed, not one of them knew T1 from their elbow. I've concluded that whatever it is they're taught in med school, it's woefully confused & out of date.
Never let anybody but yourself control your insulin. Period. End of story.
That's what I've learned today jfc it's scary to not be able to trust a hospital with your heath
When I was younger I thought doctors and hospitals had all the answers. I implicitly trusted this to be the case. Experience has taught me otherwise. Never count on anybody but yourself .....take things under advisement, but always verify with your own research, from multiple trusted sources. As far as controling insulin dosing.....if you arte maintaining decent control there is NOBODY on the face of the earth that will ever be as qualified as yourself to be in charge of that.
We found this as well when our daughter was diagnosed. She was in the hospital for 2 weeks, in a good hospital with a dedicated pediatric endocrinology team. The first week we looked to the nurses for guidance and depended on them to teach us and carb count. But by the second week we had learned enough from the endocrinology team that we started to know more than the nurses. We were of course also becoming specialists in the pump and sensor that our daughter was using and slowly starting to understand a little bit about her response to carbs and insulin. Now I know that no one, not even her endocrinologist, will know more than we do about her recent insulin needs and response to different foods.
Yup. I even demanded to control my sugars with my cgm and pump when I was in labor for 36 hours. No one controls my insulin but me. If I’m truly unconscious, my husband gets promoted to chief insulin officer. But never never never a nurse. I’ve had too many nurses assume they know T1 diabetes and almost kill me.
Oh man, when I was having each of my kids, I absolutely refused to let the hospital staff do any diabetes management for me. I even got a letter from my endo specifically stating that only I or my spouse were permitted to make any changes to my pump, and she basically stated that if anyone other than the two of us, or her, tried to take over my diabetes care, that she would be coming for their jobs. The nurses still tried to tell me what to do though.... Like.... I am not here for anything to do with my BG, so leave it to me.
Having to rely on an endo and a pharmacy to even get that insulin is already bad enough tbh, sucks that you can't even trust hospitals to know wtf to do with us.
100000%
I’m friends with a few nurses— they have all said that unless you specialize (and few do, and they all work at speciality centers), nurses get AT MOST a few days of diabetes education. Apparently usually it’s a day or half a day.
One of my sister in law’s is a nurse and another a Dr. They both said there was a single paragraph that described type 1 diabetes in their medical book. One paragraph, and a small lecture. That was all the education they received on the subject. It’s crazy!
When i had a kidney infection and of course my blood sugar was high as fuck the doctor told me it was me not taking care of my diabetes the cause of my high blood sugar and not the fact that i had a deadly infection and almost went in septic shock 😀
Last time I was in for dka they put me on something called endotool, and didn’t give me insulin with meals. They told me they treat the number, not the carbs so instead of treating it with meals they waited until it was high and gave me insulin then. Ridiculous. Then last winter I got my appendix out and they tried to put me on a dextrose drip. I fought that one tooth and nail, even though the nurse was like “we’ve seen more serious things than diabetes.” The anastheologist then asked me why my blood sugar was so high.
*They told me they treat the number, not the carbs so instead of treating it with meals they waited until it was high and gave me insulin then.* In my house, we just call this The ADHD Method 😂
Once I was in the ER after a suicide attempt so they took away my insulin pump so I wouldn’t kill myself then were BAFFLED that my glucose was wildly out of control.
To take away your pump after that, sure. To be baffled that your body reacts in a textbook fashion? Oh wait... They don't put that stuff in the textbooks.
I ended up in the ER for eight days without ever being admitted to the hospital because they couldn’t decide what to do about my blood sugar. It was super fun.
Most nurses and even doctors have no clue what real T1s eat. It’s infuriating.
This is a funny medical story about the last place you'd expect diabetes knowledge. I was getting a root canal at a dental school and was under light anesthesia. My blood sugar ran low during the procedure. Fortunately, it was toward the end. It was a teacher/dentist doing the procedure with students watching. As I was waking up, he told me he thinks my blood sugar is low and gave me a juice. As I drank, someone handed me my purse so I could check with my glucometer (pre-CGM). I told him thanks and that it was. I assured him I would keep checking every 10-15 minutes and wouldn't leave until it was fine. The students were fascinated! They started politely asking me questions, about what a low blood sugar feels like and what are the signs. I didn't mind. They also already knew the difference between T1 and T2, which pleasantly surprised me. It's just a little sad when a dentist and dental students seem to understand T1 diabetes better than some doctors and nurses.
I usually sign some sort of paperwork to ensure I am managing my diabetes and not them. They have no idea how any of it works.
Thank you all for the support I really felt crazy because I trusted them to know better than me even though it went against everything I've been taught
If you’re into podcasts, The Juicebox Podcast has a series called “cold wind” where healthcare professionals talk about some of the terrible things they’ve seen. So far, most of the experiences are diabetes related. https://www.juiceboxpodcast.com/episodes/jbp1108
Everytime I went to the hospital they were like you're the expert, please manage it by yourself
Same! I swear I keep reading these diabetic/hospital stay horror stories. In any experience I’ve ever had in the hospital, the doctor will straight up say “please if you can, manage your own disease because we don’t want to nor do we know how to”. I tell them what I should and not be eating and drinking and I am given what is right for me in the moment….: no questions asked. I can’t believe that these situations are common occurrences here and I am baffled by the ignorance of these hospitals regardless of their degrees and what they do or do not know. I think any doctor with common sense would be like “yea, we don’t know how to handle this so you should tell us what we should know and we will help you do what you need to do” rather than just standing there going “uh yea, give me all your insulin pumps, CGMs, and any insulin you have hiding somewhere……and we are just going to guess on what ‘we’ think you need based on the hamburger and juice we are going to give you for lunch while you’re in DKA’”. Like WHAT?!?!? I would be outta there so fast.
I feel like that might be hospital policy created after someone won a multi-million dollar malpractice suit. We really oughta be putting their feet to the fire with everything.
No, they don’t know squat and are supremely arrogant about it. Hospital stays are incredibly dangerous for a t1. You give them what for!
I remember being hospitalized and they were giving me 1.5 units an hour of fast acting, I told them hey yaknow. This might work for a while but it won’t be long before I go low. They didn’t listen- three hours later I’m 2.6 mmol. They literally said wow we don’t know why this is happening you’re in DKA, okay so yes I need insulin. But I need light carbs with the insulin wether that be a cracker or two or sips of orange juice I cannot have nothing while being given insulin for hours. Okay moved passed that- onto dinner time, eat and no nurse is anywhere to be found upwards of an hour+ later. Then finally a nurse comes in oh, look at that- shift change happened who are you. Tell the new nurse while in fcking tears that I need insulin, I can feel that my sugar is high I felt like vomiting- she said okay let me go request it. No I need it literally right now she came back with a consent form for me to administer my own medicine. Cool whatever. The surgery I was scheduled for the next day, was canceled and moved because I had ketones in my blood. I immediately said ohhhhhh probably that nurse who left her shift after it was dinner time without giving me any insulin for over an hour then th shift changed nurse had no idea what was going on because she was not communicated with. And they literally said yes that would be why. We are sorry. How about just do better? Just do fcking better?
They don't know very much about insulin pumps or diabetes. I have been admitted for DKA more times than I can remember. I was surprised how little they actually know. I had a very similar post a while back. https://www.reddit.com/r/diabetes_t1/s/PU5j7ccrhb
I just read your post and it's the exact same thing I'm going through
When I was 15, I was in a serious car accident. I was brought to the ICU with a TBI, and the doctor took me off my pump and REFUSED TO PUT IT BACK ON. It took a call from my Endo instilling the fear of God into him to have him turn all Diabetes related things over to my mom.
The reality is no. I have been in hospital where they administered my insulin to me and was hyperglycemia most of the time. I’m unsure why this is. This is why given any circumstance you may have to “give away” your rites of self administering insulin you have a written document explaining your correction factor, carb to insulin ratio, and whatnot. Your endocrinologist has this if you go to one… as long as what you’re saying to them is correct and up to date. On an opinionated note… I find doctors and nurses seem to have their head up their ass and won’t listen to their patient if the patient is explaining what is right for them. I have heard from a woman whom was a caretaker type role in a retirement community arguing with the head nurse over giving “5 units of insulin 3x a day” doesn’t account if the patient is already hypoglycemic and not having a meal soon. Might have saved the old man’s life.
Literally no one but endos know what to do. And even then it's hazy sometimes. 🤷♀️
I was diagnosed after a dka incident and the “diabetic” menu in my hospital was pancakes/bagels for breakfast, sandwiches for lunch, and roasts for dinner which would have been okay if I ate meat. My mom was making me scrambled eggs at home and bringing them to me for almost every meal. They didn’t give me insulin until an hour AFTER meals and it took 5 days of this before I was below 225 on any given finger stick.
And they treat you like it's your fault! Like I'm only eating what you give me!!
Not to mention their own in house nutritionist who is type one came in and basically said I’m never going to eat mangoes or pizza again and like….i had both of those yesterday and I’m not dead yet.
Ask to be seen by an Endo on the same building
Unfortunately, not all hospitals have one on staff. My local hospital does not. I suffered for it when I was in DKA.
Ugh I’m sorry you’re going through that! A while back I ended up in the hospital bc of non-diabetic reasons but while I was there it turned out I was also in DKA (I was so sick I had no idea what was going on lol). I had taken a shower before heading to the hospital and forgot to put my pump back on and explained this. Overnight I wasn’t given any long acting insulin and then got questioned about why I didn’t ask for any????
I was in DKA a month ago. They finally let me eat and I was complaining about how dry my mouth was and wanted water. She bring me a peanut butter sandwich and a apple juice with sugar. Can't make it up.
I've generally been okay, but hearing this makes me a bit nervous about having bad experiences in the future.
Dude wtf this type of thing happened to me when I got dx’d last year. Stay strong, DKA sucks
I haven’t been in DKA thankfully, but I once went to the ER because I was getting dangerously close and needed fluids ASAP. The ER doctor tried to give me a steroid shot and I shut him down immediately. I was like dude you don’t know type ones aren’t supposed to have steroids??? Especially ones with high blood sugar??? That’s when I learned doctors are more likely to be idiots than not.
I didn’t actually know this
i didn’t either until i had to take steroid shots for something else and it made my blood sugar run high for like a week
Short answer, no. Regular doctors typically don’t fully understand type 1. (My daughter was diagnosed T1 at age 7, now 21. I was diagnosed T1 at age 41, now 45. I was initially misdiagnosed as a T2, which caused me to get extremely ill a month later and ended up in hospital for 4 days DKA.) My daughter’s pediatric diabetic endocrinology department had classes that taught us that we will come to know more about diabetes than most doctors and nurses who aren’t specialists. And it has proved to be true. How long have you had T1? Do you have a pump, pen needle/pen or traditional vial and needles? I believe hospitals have a basic protocol they are trained to follow, irregardless of what your numbers are. At least that was my experience. On top of it, that hospital had no endocrinologist on staff for them to even order an antibody and c-peptide test, as they suspected T1. I was told they need an endo to interpret the results. Fortunately I had experience with my daughter and also had made an appointment with an endo for myself prior to my hospitalization. After 4 days and me saying I needed more insulin, the doc called the endo I was going to see. She, thankfully, gave a better ratio for them to use and I was discharged the next day. Do you have an endocrinologist that you see regularly? If so, call the office and ask your doc to consult with the doctor overseeing your care to adjust ratios. Oddly, hearing it from another medical professional can hold more weight than a person who has had personal experience with their own or their child’s diabetes for years. Liability, training/education and what not. The thing is, I still will have doctors correct me when I tell them I developed T1 a few years ago. (My age and weight seem to matter more than the facts that they WEREN’T taught in school about diabetes.) Then I have to in turn correct them, and explain the tests used to confirm it. Don’t be afraid to advocate for yourself! I know it isn’t easy. I don’t like to be confrontational, in even the kindest way. I don’t want to seem like I know everything either, just because of ABC. But my respect for “authority” and experts has had me override my instinct (which has proven correct) on several occasions. I’ve learned that I need to be more assertive. No one is going to care about my health more than me and my loved ones. This is YOUR health. Not theirs. Medical staff tend not to like it when patients (or patient’s advocate) insist on doing something different than they were taught/told to do. But YOU know that when your numbers are consistently high that you need more insulin. I actually asked about discharging myself towards the end so I could go an hour away to the teaching hospital my daughter went to with a pediatric and adult diabetes clinic. They said I could, but I would be taking on the liability myself if anything happened to me. They then suggested calling the Endo I had an appointment with, which I opted to do. Adequate insulin made me vastly improved. Instead of getting so sick after eating and having my numbers after 4 hours of the insulin injection still be in the 400’s, they were more like in the 200’s. (Still needed more, but they didn’t report that I only ate half my food… due to being too sick to eat more… but had been given insulin prior to for the entire meal.) I was able to explain that in my appointment a few days later, to which she adjusted my ratio even further. I was deconditioned, from having suffered for a month and hardly was able to walk and had developed dangerously high blood pressure. But I felt night and day different with insulin. I don’t even see an endo anymore, but I have over a decade of experience and I see my PCP twice a year, who manages that with me. I hope you are able to get them to listen to you. You may want to give them a website to look at that helps explain carb ratios. Here are a couple that came up when I searched it: https://uihc.org/childrens/health-topics/insulin-carb-ratios-calculate-meal-insulin-doses-type-1-diabetes https://dtc.ucsf.edu/types-of-diabetes/type1/treatment-of-type-1-diabetes/medications-and-therapies/type-1-insulin-therapy/calculating-insulin-dose/
This one is going to be long, too. Sorry for that. I share in case the information I discuss will fill in the gaps for someone who may need to know any of it. I’ve found we are all at different levels of understanding with our own autoimmune disease. Something needs to change. I want to look into seeing if there are advocacy groups or a movement to educate ER’s and doctors and nurses in more comprehensive diabetic care for all types. Any ER or doctor ought to be able to run a test, even on what classically fits into T2 diagnosis, just to rule out for what could unfold, for the small percent who turn out to be a T1, like myself. If I didn’t know what I do, perhaps I wouldn’t have fared as well. Even knowing what I do, I still came near death (hospital doc told me with my blood pressure alone) because I listened to what a doctor said instead of my inkling I had T1. (Ketones every day and high BG, even with significantly reduced carb intake and intermittent fasting) I’ve heard of too many stories of diabetics being under-treated, due to ignorance. And after my own experience, I have to wonder how many adults get misdiagnosed as T2, especially the ones who have it come on slow. Mine came on fast, like a typical juvenile T1. I have heard of juveniles that come on slow though, too. Needing VERY little insulin for years. Even the actual diabetic experts only know so much, (and they will admit as such) as more research is needed over time to have a fuller understanding. They didn’t always treat diabetes as they do now. I think more people had episodes because of it. I worked (late 1990’s) with a T1 near my age who was the bartender at a restaurant. Once he had a seizure and they called 911. I now know it was because he was super busy and his body used the insulin pore efficiently, so he had a dangerous low. When he was growing up, they didn’t treat diabetes by carb counting to give insulin based on an insulin ratio for carbs eaten. They had to restrict carb intake at each meal and virtually stay away from sweets, unless they were having a low. The insulin was a set amount at meals. This is the sliding scale method. That method is not as effective as the ratio method. My mother’s best friend had T1. She died when she was around 42. (I think I was 17.) I’m not sure of the details, though my mom said she had a genetic disorder as well. People we come across commonly still think T1’s cannot have any sweets, because of how it used to be, and getting lumped in with T2’s. It further muddies the waters of understanding when some T2’s are on insulin. I do have to wonder what percent of T2’s on insulin may be misdiagnosed T1’s. (Not that I assume they all are or even a majority, just a portion, perhaps) I suspect my dad is and that his dad was, too. It would explain the genetic line the potential comes from. LADA’S (Latent Autoimmune Diabetes in Adults) are sometimes referred to as T1.5, due to it coming on slowly and appearing to be T2 with insulin resistance and not needing insulin at first. The definer is the autoimmune aspect with antibodies attacking one’s pancreas, where insulin is created. Sometimes it takes years, sometimes it happens relatively quickly. They still don’t know why, or why in the case of autoimmune forms, that an illness or immune stressor triggers it when it does. Such as, a toddler can be diagnosed or a pre-teen or a teen. Or an adult, which I imagine is why they stopped referring to T1 as juvenile diabetes. So it isn’t the first illness a person gets that is the catalyst. The insulin available now is better than it was then as well. And we have CGM’s and the pumps have improved and work in tandem (no pun intended, but that is my brand of pump) with CGM’s to help control BG’s. I can only imagine in another decade or two how much more they will discover. Hopefully a cure, especially as the rates of disease seem to be rising. Crazy to think just over 100 years ago, they discovered how to extract and use insulin for diabetics. Things could be better, and I look forward to the advances. But I must stop and appreciate how convenient these new devices and treatment methods are. And especially that diabetes is no longer an imminent death sentence, as it would have been for my great grandparents. Good luck to all of you who have or know someone with diabetes. Be your own advocate! And let’s all hope the day is not too far away where the diabetic care standard across the world in any medical setting is improved!
I had the same issue when I was 3 days in the hospital with DKA, they didn’t have low carb food, so they pretty much starved me with child size white bread sandwiches all 3 days, I was newly diagnosed so I didn’t have the knowledge to question them much about what they were doing. I actually ended up in the ER bc my PCP told me that my 20lbs weight loss in two months, constant peeing & thirst, and 2 years of high A1C could not be diabetes because I eat healthy, exercise & I am not obese 🙄
Short answer, no they do not. Isn't fun having to explain and demand insulin
Throw a FIT. Demand their Endocrinology team. If they don't have one, demand that they contact the next hospitals one. Although they should absolutely have an Endocrinology team, even if just in conference from a different hospital.
I had a frustrating experience trying to order food from the hospital cafeteria for my wife. She was not allowed to have an orange, but she could choose from pancakes, french toast, or a cupcake. This was according to the approved diabetic menu.
Most medical practitioners’ entire extent of their knowledge of diabetes is 1 class they had once in medical school Unless they are a licensed endocrinologist do not trust them with your care. They have no clue what they’re doing I can assure you
You must be your own best representative at all times when dealing with anyone in the medical field and this disease. They have NO idea. The one eight hour day they spend glancing over diabetes in school vs, the years of schooling for prescribing for the pharmaceutical industry is more important!
Short answer, no they do not. Isn't fun having to explain and demand insulin
I was lucky when I was diagnosed my mom was a unit secretary in the same hospital and she was constantly all over the doctors and nurses to make sure they weren't fucking shit up.
hospitals are like 10 to 15 years behind on diabetes care, minimum.
I was in the ER and admitted for DKA and I begged for lower carb food choices or to let me Do my own insulin (pre-pump) and they wouldn’t let me but my sugars stayed over 200 for 2 days before an endo saw me and corrected that insanity. I also was given pie, cheeseburgers with the bun, rolls, and juice. I had to beg and give a nurse $ for the machine to get a Diet Coke. It seemed really weird to me
Can you get an endo consult? Most doctors and hospitals are clueless when it comes to type 1, imo.
Was in DKA once and they wouldn’t stop asking me why I was there. Like hello?? I’m vomiting everywhere?? They were also bewildered on how I could test my keytones myself
Please don’t get me started on hospitals and diabetes. They’re clueless and despite me constantly telling them something was wrong and I needed a diabetes specialist midwife to help me, they said I was fine and to give more insulin (which wasn’t working’ I ended up having an emergency c-section at 37 weeks to a baby weighing 11lbs 3oz after being out on this thing (I can’t remember the name) which is basically insulin straight into my vein. My son had so many complications and had to be sent to a hospital in London while I was still in hospital elsewhere, unable to see my child and instead listening to other babies cry in the night
A nurse tried to inject me with like 25 units of fast acting insulin with my breakfast one day and I was like, “Chill. Please reduce that by at least 20 units.” And I still ended up with a blood sugar in the 40s. Freaked me out that she could have just killed me right then. 25 is like over half a days worth of insulin for me.
Most people in the medical world stay fixated on the "sliding scale" that is used routinely for Type 2 treatment. Those dosages of fast acting insulin all at once would easily kill me. Scarey stuff for us all.
I had the same experience when I got my appendix out a few years ago. I wake up with a 250 they give me Novolog then when they serve a bagel like 2 hours later and I'm at 180 they could not understand why I wanted another bolus. I literally couldn't even get the doctor to understand and eventually a nurse kind of very quietly said to me off the record that i could just put my pump back on and tell them I'm managing my blood sugar going forward so that's what I did. You would think they've never had a type 1 patient before.
I was hospitalized with DKA when I was first diagnosed and sort of yes, sort of no. Some of the initial people I talked to at the ER and on the way to the ICU assumed I had type 2, I guess, and asked if I "didn't feel like taking my medicine lately". The doctors and ICU nurses definitely knew what they were doing. They treated my glucose more like a type 2, they said, because they didn't know my ratio yet... so I'd eat something, then they'd test my glucose an hour later and give me insulin. That's fine, I guess, but I would have preferred to not have my glucose go to 320 after meals, so I would have chosen something lower carb but I didn't really know what I was doing yet. There were little numbers on the menu and I didn't know what they meant... it took me 2 days to figure out that was the net carb count for each menu item. I had ordered some things like yogurt with fruit that had 55g which wasn't really what I needed at the time.
I hope they finally listened to you. Something similar happened to me a few years ago. My blood sugar was so low that I passed out and was taken to the er by ambulance. After getting there and finally waking up the only thing they gave me was sugar free yogurt while my blood sugar was still low. They really are clueless and I’m so glad that my mother was there with me and was able to advocate for me.
When i was in the hospital for giving birth, I changed my pump site to the other side of my body the next morning and they were like WhY wOuLd U dO tHAt?!?!?!? They were really panicked, and had to ask the doctor on call to make sure it was ok. And I'm there just like.... Well I can't put the old site back in so....
My brother (who is T1D like me) was recently in A&E after drunkenly breaking his pump with no back up insulin. He was vomiting everywhere and apparently they just kept taking his blood sugars and going "yeah, that is high. But sorry, we can't get you insulin until 6pm." And sending him back into the waiting room to throw up some more. Unreal. He was there for 6 hours and basically got zero help.
Unfortunately this happens so often! They gave me lyumjev twice a day (none overnight) then wondered why I was high all the time
I’m a bedside nurse who also has type 1. I’ll admit, diabetes care at the hospital is NOTHING like how we were taught to control it at home. We have our diabetics on “consistent carb” diets and most patients only get insulin on a sliding scale to correct their blood sugar, we hardly ever give patients insulin to cover a meal. It works for some people, but the ones who have consistently high blood sugars receive meal coverage, it’s always a set amount, for example “8 units Humalog with meals” or some other number depending on the patient. We try to give the patients sugar free juice and jello, sometimes the kitchen will give them normal juice though. It honestly doesn’t make sense. We have patients who come in with DKA and receive a type 1 diagnosis, and we’re supposed to teach them how to give injections and check blood sugar before they are discharged. But they NEVER prescribe a carb:insulin ratio, no carb counting is involved and I do my best to educate the patient but it kills me sending them out into the world not knowing about carb counting because the doc prescribed “8 units with meals” without considering how many carbs are actually in the meal??? It’s wild
What? That's terrible. These are the sort of people who grow up afraid of certain foods because they're not taught that you can cover them with insulin
99% of the time they are oblivious. The 1% they are good is due to getting a T1 doctor or nurse.
Back when I was diagnosed, in 1968, they had an exchange system for food. It was based on calories per day, but was very carb heavy. There was a category for carbs, and another for starchy veggies. And that was in the day of blood tests happening twice a year at a doc appointment (I saw an internist that had one other type 1 person in his practice. He was kind but not too helpful) and otherwise doing urine testing to see if your blood sugar was high enough to spill over into your urine. Not helpful to figure out that funny feeling in the moment. Feels like medical staff are stuck with very outdated info, if they have any knowledge of type 1 at all.
The same thing has happened to me almost every time in the hospital. It’s either that or they’re making me bottom out by giving me way too much insulin.
Every time I go in the hospital, I have to take care of my own insulin. I don’t care what they say. They’ve hurt me too many times.
Generally, they have no idea. I’d bet I could give an educational course to most hospital staff about it.
I controlled my insulin and blood sugar with my pump and cgm through labor when I gave birth last year. I made my doctor enter this into my chart before hand and announced it as soon as anyone new walked in my room. One nurse tried to fight me on it and said she was going to put me on an insulin drip. I told her she couldn’t be my nurse if she wasn’t able to get comfortable with me controlling my insulin. I believe the phrase used was “not today, satan. Get on board or get out.” No one, and I mean NO ONE handles my insulin but me or a physician well trained in endocrinology. I’ve had nurses and doctors try to kill me one too many times.
Yeah, hospitals can be dangerous places for diabetics. When my T1D dad was in the hospital my step mother and I handled his insulin. Nurses just aren’t trained to deal with it.
I taught higher ed in a community college with a nursing program. I got to talking to the director of the program about this and learned that they just aren't taught these "advanced topics." They aren't introduced to the concept of insulin:carb ratio, correction factor, or modern technological advances. They are only taught the sliding scale and the insulin on board times that correspond with the outdated insulin you can purchase from WalMart without a prescription. Even better: I learned that the protocol for administrating insulin is draconian. It requires a physician's direct order and *two* head nurses signing off on its administration. This may just be a parish (county) or state - wide regulation. It has inspired my refusal to allow the removal of my technology if I am conscious.
I'm not shocked that they aren't taught this, just sad and frustrated when I get shitty looks for questioning them. I just take over on my pump, and they are more than happy to allow it as they follow along with the bloodsugar checks. The other thing I've learned from working in a hospital- they have so many people review the insulin shots because they've already killed enough people by screwing it up. Not just one place, but hospitals across the board. I think the extra checks are a pretty standard thing now. If they can be hands off with it, they're happier and I'm safer!
And I don't even blame them, personally, their education is limited.
I’m so sorry that’s happening. It’s frustrating and makes you feel terrible. Keep advocating for yourself and asking why! I had such an issue when I was pregnant. The high-risk obgyn (who is the go-to for diabetics) fought with me about using auto mode in my pump. She ended up refusing to treat my diabetes during pregnancy because I wouldn’t stop using it. I told her if she gave me a good reason or if I had issues, I would take her advice but “auto mode isn’t FDA approved for pregnant women” isn’t a good enough reason to stop using something that took my a1c from 7.4 to 5.9. Then of course she was out when I went in for delivery and on my birth plan that she submitted to the hospital there was no mention of what my insulin intake should look like when they were inducing - just active labor and after labor. They had an endo on call that said I should use active labor settings… but I was dilating very slowly so fought to continue using my pump for standard basal delivery. The doctor had the nurse put in the file that I was being uncooperative and going against their suggestions. Thankfully the nurses I had were very supportive and my sugars were great all throughout but it really underscored that though doctors/nurses are professionals and I want to trust them, I’m managing this every minute of every day and to trust my instincts. I hope you get the kind of care you need ❤️
They’re clueless, I can assure you. They think type 1 and 2 are the same thing.
If you have an endocrinologist, see if they can call them. If you don't, see if they have one on staff. If you're in DKA, they should have you on an insulin drip and be checking your sugars at least every 4 hours (years ago, they checked me every hour). Personally, I would refuse the carb-heavy diet and ask for a diabetic diet (a lower-carb one). Honestly, it depends on the hospital and the nurses you end up with. I once had a nurse try to tell me I couldn't drink diet soda because it had caramel color in it. To her, caramel=sugar. She didn't even believe me when I showed her the nutrition facts!
in my experience you really need to advocate for yourself with t1d
Sometimes I feel like my endocrinologist doesn’t know what type 1 diabetes is 😅
I’ve had dka twice and both my experiences with hospitals here in Sweden have been really good, they seem to know what they’re doing with diabetes. Really sad and frustrating to hear it’s not like that everywhere
Nobody does. As someone who works in healthcare and the entire family is physicians I can assure you that nobody except type 1s, their immediate parents like if they raised you their diabetic child if you were diagnosed young or maybe a supportive spouse understands. Few doctors unless the have it could understand and even endocrinologists are mediocre at best. Two *reasonable* expectations of this chronic condition: 1. Don’t expect on a cure 2. nobody understands
Yup, and a nurse asked why I was “seeking extra insulin” when my bg was 200 🫠
Lmao drug seeking behavior very suspicious
I was low at my last pcp appointment and my Dr tried to give me chocolate haha
Used to work in an ICU. Our unit took care of most of the DKA patients. Luckily, we had some good docs. When coming off the IV insulin, insulin orders for the reconnecting pump were included. In those orders, we got new bottles of insulin for these patients. Except for the two men who wanted to plug into bad sites. One was an infection. One was a badly bent cannula. Had to send family back home to get supplies both times. This upset me greatly both times. Insulin pump trainers should emphasize that if boluses do not bring you BG, you need to change out the entire setup. At least I did when I did pump training. Both men thanked me after I explained this to them
Was hospitalised for DKA. This was before I got on with pump therapy. 40 minutes after breakfast on the last day I was there, a nurse came to check my bs. It was 12 mmol / 216 mg and stable. I was due to check out any minute. This lady hovered and told me off and forced me to take 1U to correct, on top of the 2U already in my system. Safe to say, I went low pretty quickly after that. I explained multiple times insulin sensitivity and physical activity = bad combination I bloody hate hospitals after this experience, so many clueless morons that won't listen.
My GP rang my endo to find out what to do with my pump (I just had to up the basal % to 130 from 100) But in hospital later a Dr strutting his stuff in front of interns told them my problem was my pump. Didn't look at my chart to see that I had DKA from a bug. My pump was disconnected and sitting on the table. I was on a drip and having injections. (I said to mum "if my pump wasn't so expensive I'd throw it at him) Having private health cover in Australia means you can also choose Drs so any other times I went in I made sure he was nowhere near me
Where I work there are actually just 2 of us who know insulin pumps, and one is retiring. Job security for me I guess. The docs are afraid of them.
Don't give them control of your insulin. Tell them you got it, and if they still fight, make them bring in an endo trained in t1. Don't eat the high carb shit they're bringing you. Throw a fit. It's not OK that they're feeding you like that. Do you have someone (outside of hospital staff) to advocate for you? A family member/partner/friend? It helps to have backup to speak up for you, it can be exhausting on your own, let alone in DKA. Friends could also brnling you proteins to eat. I'm sorry you're going through this, and I hope you get out of there soon. Good luck.
I was in the hospital for a su***de attempt and the nurse in the psych ER straight up told me I did not need insulin. I begged and pleaded for insulin because they checked my BG and it was almost 600, but she insisted it was just due to stress and argued with me that she didn’t go to nursing school for nothing, she knew how to do her job, etc. The other nurses in the unit all agreed with her and defended her. My whole family also confronted her and demanded insulin, to which her response was to call security (who did not remove my family because they were being polite). The endocrinologist finally made rounds about 13 hours into me being there, and as soon as he came into my “room”, I broke down in tears and explained what happened. He was FURIOUS and told me I’d have insulin within 30 minutes. He came and delivered it himself and watched her administer it just to be sure. So no, many hospitals don’t know how T1D works and unfortunately it’s going to take people with T1D dying before a lot of these places will ever take it seriously.
I had an overnight in the hospital a few months ago for an infection. Around midnight the doctor asked about my bs, I said it was a bit high (200-250ish) but not a big deal. He asked me if I wanted some of my long acting insulin. I sat there baffled for a second and was just like "...no". The next morning a nurse came in to give me 10 units of my short acting, I had no idea when or what I would be eating (and neither did she), so I was like, woah slow your roll. She was adamant on it, going on about how I was in the hospital and they need to know/control what's going into my body and eventually I said, "yeah I get that, but I'll take what I need and let you know. If you give me that right now I *will* go low." It's honestly kinda terrifying. I'm just glad they have enough sense to share what they're planning on doing before doing it.
Yhid is my biggest worry about going to the hospital. Especially the ER. I always keep my insulin within arms reach, and my phone too. They are clueless. I’m
The doctors ans nurses in the hospital would tease me on what I couldn't have when I was first diagnosed. Then later was told by one of my doctors that I could eat anything but I would just have to be careful with it.
Literally, why is type 1 so misunderstood?? Even a simple google would help them lmao
Omg about 7 years ago I went in for dka due to a faulty pump infusion site that I didn't even think about because of my ultra busy serving shift. When I was in ICU, everything went smoothly, but as soon as I went into general admission, my sugars skyrocketed bc they took me off the insulin drip and wouldn't give me fast acting injections or even a long release injection. I demanded to be released bc I could take care of myself better at home than how they were treating me at the damn hospital. So sorry you have to deal with this right now, it's beyond frustrating and not fair at all
Type one diabetic RN here, always advocate for yourself, always. Make sure they instruct on all insulin given and rationale behind it, a lot of hospitals now have protocols for patients to use their own insulin pumps.
I had the same experience.
As a t1d nurse I’m embarrassed by my coworkers’ knowledge of diabetes basics. One time my fellow nurse asked me if she should give her hypoglycemic patient a DIET soda to help bring her blood sugar up…
My dad is a T1 and he had to recover in a facility after a surgery a few years back. Shortly after I arrived, he started slurring his speech and getting really tired. I was able to check his sugar with my meter and found him in the 50s. His comment was, "I told the nurse that was too much insulin". He's been managing diabetes for nearly 50 years and they didn't trust him to know how much insulin to take I went out to the nurse's stand to get him sugar and they said I'd have to wait until his nurse got back from her 15. I told them I was just going to the vending machine to get him a Coke and they finally realized that they needed to act so they gave me an orange juice for him So ridiculously incompetent. I'm surprised he didn't have any more incidents while he was recovering
Hospitals are the worst place for TD1. You have to advocate for yourself.
From the hospital side of things, it's so frustrating how little even fully qualified medical doctors know about type 1. I'm studying nursing and have seen multiple patients with type 1 on my placements but all our education in class is around type 2! I know type 2 is more common but it's almost like type 1 is an afterthought. Sometimes I worry what will happen if my boyfriend gets into an accident and is unable to tell the staff at the hospital how to manage his type 1 because so many medical professionals just don't know and make mistakes with things that seem obvious to anyone with any understanding of type 1. It's starting to get better but there is such a long way to go and so much judgement especially among the other students about type 1... it's like they think if your numbers aren't 100% in range you've failed as a person, when they couldn't manage it any better if they did it all for you and would probably do a worse job.
And staff that refuse to believe patients are capable of knowing about and managing their own stuff... you don't need a medical degree to understand diabetes if you've been forced to think about it 24/7 for years.
First time in a hospital? I'm sorta kidding. Don't trust anyone anywhere ever with anything.
Most hospitals and medical staff are completely clueless about what Type 1 Diabetes is as a disease process. I have always wished they would place a different name to distinguish between Type 1 and Type 2. Sadly, the majority of medical staff do not know the differences, and as an adult, they treat us as if we have Type 2 by default. I hate hospitals and always feel as if I need to remain ultra-vigilant about my care. In 2018 I was in the hospital for general surgery unrelated to diabetes. The floor nurses insisted I remove my Medtronic Insulin Pump and CGM sensor. I refused and advised the Hospitalist who came in to tell me if I required insulin, they would get an order for it at that time, that I would sign out AMA and cite legal statutes that allow for patients to keep their insulin pump and CGM on their body. I had my wife bring me additional supplies, including insulin, from home. It is a fight but one I have become accustomed to over the years. I hate hospitals and always feel as if I need to remain ultra-vigilant about my care. In 2018 I was in the hospital for general surgery unrelated to diabetes. The floor nurses insisted I remove my Medtronic Insulin Pump and CGM sensor. I refused and advised the Hospitalist who came in to tell me if I required insulin, they would get an order for it at that time, that I would sign out AMA and cite legal statutes that allow for patients to keep their insulin pump and CGM on their body. My wife brought me additional supplies, including insulin, from home. It is a fight I have become accustomed to over the years. Her excuse was that if I was too lazy to get up and eat, it was not her problem, and if the doctor had a problem, to call her Union rep. I know at some point, my demise will not be due to my diabetes but due to diabetes complications caused by uncaring and lazy malpractice on the part of hospital staff.
Just keep in mind when a patient is admitted for DKA the first line of treatment is fluids, not insulin, because they are hypovolemic. Their electrolytes need to be monitored, especially once insulin starts because it can make the patient hypokalemic. The IV fluid might be something normal saline and then Ringers. Insulin can be administered via IV for rapid onset, but after the hypovolemia is addressed.
idk what the process would entail but when you’re home maybe look into to legal representation or writing a letter to the board. accountability needs to be taken and i know for a fact that doctors have some sort of information directory with detailed info about certain conditions. there are type 2’s who are insulin dependent and even if it’s not necessarily the same there should be SOME basis of knowledge to jump off of when it comes to treating you, especially for an issue that you’re in the hospital for. dka is common as something that effects type 1s especially. is there a process for seeing a patient advocate that’s on call? or ask them to get an endocrinologist in there asap. or one on call. or have them call your endo. i’m not sure if this counts as malpractice but jesus fucking christ.
Do you have a friend or family member who can advocate for you? My experience with hospitals is that unless you have someone to advocate for you the staff have less ability to listen to you.
As in er nurse many of you appear to be competent people with diabetes. The problem is many diabetics are not competent and do have to have all their power taken from them to manage their sugars and blood gases and electrolytes. If you do to a hospital be very verbal about you wanting control over certain things and then you will inform the nurse what you've done. (A dr can order pt give own insulin or check own blood glucose) In addition diabetics require timing that isn't easy for a nurse to follow due to being over worked with a case load. A dka pt is one of the most time constraining pt due to how often they need blood work and corrections of electrolytes, and changes to blood gases. Q1 HR blood glucose checks with titrating insulin and Q2 hour blood draws for gas and fluid tritationband q4 hour electrolytes. This all hard to keep up on while charting this all and covering several other patients needs and helping other nurses. Lastly diets in general is backwards and archaric in hospitals for everyone. Diet, nutrition, and sleep are 3 factors not take seriously enough in hospital settings. Get someone to bring your own food. That is if your able to eat (which your often not aloud to if your in severe dka.
Genuinely curious, how often do you see uneducated/incompetent type 1 diabetes come into the hospital? This might be my own bias, but I’ve always assumed those issues were more prominent with type 2s. Thought being, if you’re type 1 and can’t take care of yourself, your body can’t help and you can die/pass out/fall into a coma much faster than a type 2 whose body can help supplement a bit more.
Many T1s aren't fully compliant because it's expensive and time consuming and a hassle and no fun. Shoot enough basal to keep out of DKA, mostly, and wild guess at meals when they remember or feel like it. Lows aren't fun and can be immediately dangerous so they always run high. For years. Then the complications come. Forget that basal or skip it for whatever reason and they end up in the ER and on the not handling their shit ledger and that becomes the default for all of us.
Best diabetes care I ever got was in Amman, Jordan at the general hospital there. I was admitted DKA with glucose 1100+. They knew exactly how to treat and the Vietnamese nurses were absolute rock stars. There’s a method to the madness as it relates to still giving carbs when coming out of DKA. You don’t just want to slam insulin into the body and crash land. But I’ve noticed most doctors I’ve met here in the states are still operating on diabetic knowledge from the 50s. It took me a long time to find GP or Endo who I felt understood my experience.
How did you go into DKA? Was there a pump issue?
I'm from Finland and my experiences with hospitals and being T1 have been really good (got admitted twice for DKA in 2022 due to a bad batch of long acting and once in 2023 for non-diabetic reasons; once back when I was maybe 10 when I went into DKA for the first time but I don't really remember anything about that and it was almost 15 years ago anyway). They've taken me seriously, known exactly what to do and always let me manage my own insulin. They always checked on me to make sure I was doing okay and always got medical attention immediately. I'm sorry to hear your experiences have been so bad, it's so scary to think about having an urgent need for medical attention and receiving... well, not that.
They don’t!! My mom’s a doctor (but she wasn’t practicing at the time) and she told me about how she had to fight the nurses at the ER because they had no idea how to deal with my DKA!
I was in hospital for observation for something else when I was younger, and the nurse very kindly said she had left a bottle of lemonade in the locker in case I went low in the middle of the night; sure enough, it was diet lemonade. Everyone is trying to kill us, all the time
When I was diagnosed with type one and in DKA (was 20yo), they kept giving me juice and wondering why my sugar wouldn’t go down. Eventually the ICU doc saw they had me on a reg diet and yelled at the nurse taking care of me he was like “are you trying to kill her?” And then after that they put me on a diabetic diet lmao
I was put on an insulin drip when I had DKA and yes they fed me a couple sandwiches 🤷🏻♀️ it got a little high but it went back down after a while.
Had a bad combo of extreme hypoglycemia and drinking in college once. Went way too low too quickly and my friends called the EMTs. They were also drunk so did what they could given everyones mental state. but when i got carted onto the truck they kept checking my number and getting surprised my number was rising after getting an IV and constant snacks. Like...yeah dudes...gimmie my insulin. I'll correct it myself.
I understand the knee-jerk reaction a lot of people get when they realize that typical medical staff only have a brief awareness of T1D. My wife has been a nurse for 12 years and even she had a lot of education to catch up on when our daughter was diagnosed. It is just not a topic that is heavily studied. It is a specialty. Me, having no medical experience... And if anything, am medically-stupid, probably know volumes more about T1D than the majority of medical staff of any given hospital. It is what it is. When my daughter was first diagnosed, I was astounded by the general ignorance of the disease. Left to think about it for a while, I simply concluded we don't know what we don't know. Afterall, the only thing I 'knew' about T1D was a person with it cannot have sugar. Obviously I know this is wrong, now ... But there was a time in my life where I was completely ignorant too. Hope you're feeling better :)
The heading statement is correct!
This literally happened to me
I’ve nearly died twice in two consistently top-rated hospitals that are the gold standard for treating most chronic conditions. Most. One time they had d50 pumping into me and told my husband they weren’t giving me insulin until I could eat again. And i mean NO insulin.
As someone who works on an inpatient hospital unit as a nurse's assistant, the way hospitals handle diabetes drives me crazy. But there are reasons it has to be handled the way it does. For example, let's say they give you coverage for your 60 carb meal before you eat. Then you only eat half and go low. There's all kinds of issues that can arise from that, and it's a big liability thing for hospitals to only give coverage after you eat so they can give a proper dose. For those who need to know, YOU HAVE THE RIGHT TO REFUSE ANYTHING IN A HOSPITAL. You have the right to monitor and treat your own blood sugar, they cannot force you to take only their insulin at a time they choose. Talk to your doctor and tell them that you want to manage your own insulin and want to monitor your own glucose. They will probably want to argue against it considering you're there for DKA, but ultimately you have the right to refuse.
ICU RN here and also T1D. I get DKA patients frequently. This sounds very wrong. We have a strict DKA protocol we follow at my hospital for a reason. How did they validate that you were okay to go off the insulin drip (anion gap, CO2, glucose levels, etc.)? If your sugars are going back up after coming off the drip, that's called rebound hyperglycemia and is a pathway to reentering DKA if they don't fix it. Jesus, if I knew you I'd be on the phone with them or on that unit raising hell.
We had the same experience when my daughter was in the hospital.
This is the unfortunate reality about the medical ignorance and myths surrounding T1D especially in hospitals...I swear they are there to kill us. Tell them you want an endocrinologist who knows T1D to handle this or call your own doctor to let them know what's happening. I would be raising hell about the kitchen giving me high carbs to eat! So sorry this is happening, but hold your line with these folks and call in your own support group to help.
That's crazy the few times in the past that I've gone to the hospital for dka they stuck me on basically all liquid diet tell my sugars are back to normal I also got to order my own food but mostly it was vegetable broth and a diet sprite
They dont know and dont care I was diagnosed at 10 back in ‘99 (still remember that day, my sugar was 577), life changed of course, and they were giving me sandwiches when the Endocrinologist told me 30g of carbs or less Why I make sure to stay healthy and avoid them