Been a T1D for 19 years , in the beginning of last year I had an issue with EDKA because I wanted to “ eat healthier “ and ended up using less insulin ! Was unaware you can be in DKA from perfect blood sugars and was gas lighted from doctors multiple times telling me I was just dehydrated !!! After
Currently going through something similar to this and I am worried. Newly pregnant (6w2d) and the last 4 days I have felt extremely awful. I went to the OB yesterday where they confirmed baby was fine, and ER today because the abdominal pain was unbearable. My ketones were high (>150 mg/dl) and they said it’s because I’m dehydrated and gave me iv fluid then sent me home in the same condition I arrived. The only thing is, nobody has been able to explain my “diabetes” or what type, so I’m categorized as controlled type 2.
Edit note*** I have been “diabetic” since the age of 7 (first “diagnosis”), I am 23 now.
I'm sorry this is happening you. Get well soon.
Have you ever been tested for MODY?
I have not, but it has been mentioned along with LADA (which didn’t make much sense to me given the onset age). My (relatively new) endo wants me to get bloodwork done when my sugar hits 55 but labcorp requires an appointment and by the time im at 55 I’m in the floor. I have insulin resistance (current level is 70) with severe hypoglycemia, and hypoglycemia related seizures. Doctors act like their lost with me.
Huh, that sounds awful.
I have to keep an emergency glucagon at all times, versus insulin I’m just very tired and scared that one day will be too late.
Well I can understand why you feel that way.
Many people on T1D sub may disagree with me, but I have always thought that T1D is generally more manageable than your condition, or a severe reactive hypoglycemia that comes with seizures.
I read a study years a go that was about a T2D who had previously been diagnosed with some kind of epilepsy, but when they started using CGM, it turned out that the seizures were caused by reactive hypoglycemia. 👀
Hey long time diabetic here (23 years im 26) and I have been in the ICU about 100+ times for dka and edka before. There was about 1 or 2 out of the countless times I was in dka that it turned out to be edka and it made me feel hopeless to learn about it from a doctor. I have ran my sugars to 87.2 mmol/L before and know that high blood sugar=dka but when I went once I was faced with multiple nurses seeing the horrific state I was in and so confused about my sugars. When they confirmed I was in dka I had multiple student nurses come to my bedside and wake me up just to study me or learn how I knew I was in dka. I became a local celebrity in the hospital and had a crowd of nurses and docs just asking questions on how I knew it was dka. I responded every time angrily saying "I have been in it
Thank you so much ! I really appreciate it ! After 19 years I’ve never had any complications until recently so I never really saw a “ bad part “ to diabetes ! I guess I never really got a chance to fully accept it and why I’m having such a hard part with it mentally now 🥲 I don’t know any other diabetics so it’s a breath of fresh air knowing others know how I’m feeling !
This group is good for that and has a lot of good people in it. Do your own research and ask questions to people that have been in similar scenarios! But I am gonna say you should stick to medical professionals when it comes to say insulin doses (bolus or basil) things like that should be dealt with in a controlled manner or by yourself because you know your body
Thank you ! I’m in the process of looking for a new endo ! Feeling like I’m not getting the communication or even attention for my concerns sadly !
I barely know my endo 😂😂 but I just went off of what was taught to me at the beginning of my diagnosis Carb counting and correction which isnt so bad to do
I remember my first scary hospital stay with diabetes. I felt helpless and ignored, just like you. Even now, I check my ketones too often and worry constantly. Sharing my story helps me feel less alone.
Definitely! I feel like a lot of people don’t talk about the mental health related part about having diabetes and just the pretty CGM ✨
I've been in EDKA a few times. Mostly as a result of not having my minimal amount of carbs that I can possibly squeak by with for longer than 4 days in a row (50).
I now view sweet garbage foods as a necessary evil that needs to be eaten.
The lowest blood sugar that I've tripped into early EDKA has been 115 with moderate ketones. And a breath that tasted like acetone. 🤢 🤮
Which ended up triggering an adrenal crisis as well.
Time before that was when I had a paratoid gland infection that also triggered an adrenal crisis and the iv antibiotics put me off of food.
It’s definitely harder when your sick ! I try to drink Gatorade or have some pretzels as carbs especially when not fully eating / no appetite ! I’m not sure yet what my minimal is but I’m definitely trying to atleast keep my total insulin above 50 units total daily 🥲
I had two EuDKA before + almost a third one, but then I noticed something was wrong and checked my ketones, so I managed to avoid the doctors with taking carbs, electrolytes, insulin and drinking lots of water.
All three times I had EUDKA, it happened after similar triggers, I had similar symptoms and I felt that something was off every time. If you went to the ER, you must have felt sick too.
What I'm trying to say is that if you pay attention, your body will let you know when something is wrong. Don't force what triggered it, trust your body and you have a very good chance that everything will be fine.
By the way, I'm also after a 2 weeks long flu, feeling still unwell. I was about writing 'wow, what a coincidence again', but it's flu season.🤧😱
I’m glad to hear and hopefully this will ease my anxiety ! I’ve definitely been trying to eat more carbs , give insulin and stay hydrated ! But anxiety makes it 100x worse ! Especially recovering from the flu 🙃
I also check my ketones more often when I'm sick. I get a slight fever almost immediately when I get the flu or other URIs, and it feels very similar to EuDKA. 😑
I remember facing something similar in my own journey with diabetes. I felt healthy until everything fell apart and no one believed how bad it was. I kept telling myself to stay strong while fear kept rising. When I read your story it reminds me that this path can feel lonely but it does not mean we are alone. Your strength is real even when it feels invisible. You deserve a team that listens.
Thank you ! I’m glad I’m finally feeling validated and reassured ! It takes a big toll on your mental when nobody around you truly understands what it’s like having diabetes !
Thank you for posting about this!!!
Because you may have just helped me to figure out something that's been happening on & offfor the last few years, that no one on my medical team seems to be able to figure out (and that keeps making me feel like dogpoo, every time it occurs!).
I'd never heard of EDKA before, but it's ticking a lot of the symptoms of what i've dealt with, too.
So I have something I can bring to my medical team, research-paper wise, that we can maybe look through.
So THANK YOU, OP!
I'm so sorry I don't have any good ideas or any help, but thanks for the name of this!💖💗💝
Hope you’re able to figure everything out 🫶
Thanks! I'm reading up more on it, and will be talking to my nurses later today.
I really do appreciate the post, because i've been trying to figure out what's happening for so long, and i keep getting, "I don't know, I haven't seen anything like this before" from almost everyone on my team.
So again, thanks for pointing me at something I can follow up with them to check!
Well. I’ve been diabetic for 30 years and TIL. I used to wake up with ketones all the time with normal bg. We just referred to it as “starvation ketones” and to monitor bg while flushing hydration until ketones were no longer present.
This explains the time I was admitted with “mild DKA,” it was probably to some extent EDKA.
They were wrong regardless. I had a bowel obstruction and hadn’t really eaten anything substantive in the past 5 days. I’m still annoyed with them as I was admitted as such by surgeons who then waited 8 days before operating which then contributed to the massive saddle PE that required open heart surgery to save my life.
It’s been 5 years and they’re lucky I was too doped up or I’d shake my fist so angrily at them.
Health care is scary ! But glad you were able to get everything figured out !
This happened to me twice while eating lower carbs but also on Jardiance. Kicked me to the hospital both times. Just putting that out there for people who are unaware that going low carb to control blood sugars while on an SGLT2 inhibitor can be bad news.
I had a very similar thing happen, I don't know how to advise other than making sure you bolus at least 2/3 meals so making sure you have some carbs in some form as you need insulin even if your bloods are good
Thank you ! Definitely been giving insulin all day ! Just stressing myself out unfortunately ☹️
I totally get it I have been diabetic since I was 3 I'm 24 now, diabetes can feel like an uphill battle but you're not alone, I'm sorry things are so tough for you rn x
Thank you ! Appreciate it !
Don't mention diabetes to a va doctor, they can't even fix a wart..
OMG, I've been a diabetic for 18 years, and I had EDKA as well. I called my endo team, and they put me on to a nurse who changed my insulin and told me to "drink more water." My ketones were dark purple, the highest you can be from the urine ketones strip, and she said I didn't need the hospital, but I went anyway, and the doctor said, "Drink more water; you'll be fine," and sent me home.💀🥹
The joys of healthcare 🥲 ! Saw my endo yesterday expressed allllllllllll my concerns and still said absolutely nothing to fix my issues 🙃
I'm sorry, what worked for me was honestly eating more carbs. The funny thing about it is I only needed to eat normally for one day, and the ketones were back to normal.
Right now, my blood sugar levels are always high since they changed my insulin, and I've just given up trying to fix it because anytime I eat something, the insulin-to-carb ratio isn't working. I know when I go back to my appointment this month, they will blame me.😭😭😭
I kinda just want to fast and stop eating altogether, but then I know I will go back into EDKA, but with these high blood sugars, I might go into DKA.😭
Im trying to eat as much as possible but its hard with anxiety taking over , making me feel weak , nauseous and no appetite 🥲 somehow my sugars won’t spike after even chugging Gatorade which adds to my anxiety 🙃 sorry you’re going through it as well
I know it's hard. I'm so sorry you are going through that. I also think the problem is that the ones looking after us aren't actually diabetic, so they understand only through science and research, and not actually through trial and error themselves. I think we need people who actually have diabetes to start becoming endocrinologist and look after diabetic patients.
Thank you 🥲 OMG I’ve said this to my family 10,0000000 times ! If not they wouldn’t dismiss us when we tell them our fears & symptoms & point out when we notice something different !