Beautiful name! Welcome to our community.
I don’t know the answer to your question, but you’ve come to the right place for support. I’d be really scared also. I had one DKA episode & that was more than enough.
You can have much better control & you will. Great you got a referral to Joslin!
It’s hard to dose insulin properly with GI problems. Are you testing frequently, correcting highs, counting carbs & taking insulin according to carbs?
No guilt, no shame, but an eating disorder does make things more complicated. Are you intentionally letting BG run high to lose weight? You’re among friends here, so don’t be shy about discussing the struggles you face. Others here with eating disorders who understand & we’re all in the same diabetes boat.
No im not diabulimic if thats what your thinking… i only suffer from anorexia, its my only control in life.
I hate testing my BGL but who doesnt. I watch my diet very very closely, i try eating at the same time everyday but thats gets complicated, i exercise a lot… love playing sports, but recently i was assaulted by a close friend and my stress and anxiety are through the roof, havent slept much just got prescribed sleeping meds so that can cause some effect on my diabetes.
Im just so scared right now for myself the support will really help.
So sorry about the assault:( How awful! A close friend. Stress, anxiety & not sleeping will sure send BG soaring.
What helps me to be less scared is learning everything I can. Makes me feel more in control of my life in general & to silence the nagging doubts in my head. Knowledge is power–so true.
Glad it’s not diabulimia. I asked because of high BG & DKA. The way we have to eat as diabetics is a path to any number of eating disorders. Watching what we eat, timing, counting. It’s a type of eating disorder to eat this abnormally, not that we have any choice!
What can you do to help with anorexia? Know how hard it is.
DKA is ketoacidosis? How long do you need to be high-BG, and how high, before this happens? Are you taking insufficient background (NPH in your case) insulin? I used to take NPH (for decades in fact), but I found lantus better (much flatter) but only if I take it twice a day - which I do about 12 hours apart.
Yep, DKA is ketoacidosis. Everyone is different regarding how high BG gets before their body starts breaking down. I was 809 when hospitalized (but I was near death) & others have been far lower. If I had consistent highs in the 300’s that couldn’t be brought down by insulin, I’d go to the ER pronto before dehydration & vomiting started.
sounds like you need to get grounded and get healthy! you really need to work with a highly skilled naturopath, holistic nutritionist, functional diagnostic nutritionist, or other alternative health practitioner to get to the root cause of your digestive issues (they won’t just prescribe drugs and recommend surgery - they’ll get to the root cause and support your body to get healthy). proper digestion is the foundation of health. if you’re type one, you should DEFINITELY try going off gluten and dairy, man will you feel great. try it for a month. you should look into neurotransmitter therapies for your anxiety (read the diet cure or the mood cure by julia ross or work with an alternative health practitioner who is familiar with them). start taking a quality multivitamin - ask around at a health food store - you likely have numerous vitamin and mineral deficiencies. magnesium is huge with the heart, digestion and relaxation, and almost everyone is deficient - try 400 mg a day of a chelated form (the form will end in ‘ate’ as in magnesium citr’ate’ or glycin’ate’). cant give you any more recommendations than that without getting to know your story. start treating yourself right! message me if you want more resources. work with your doctors on this stuff - im certainly not trying to treat you here.
youre in the right place for help with your blood sugar. sorry for throwing so much information at you, take it one step at a time. good luck!
That’s what I thought. I’ve had ketoacidosis once (when I was diagnosed it was off scale - above 800). They brought it down in the hospital - this was after weeks of having undiagnosed Type 1; typical I think for new diagnoses.
But now I can get BG in the 300’s even 400’s if I really screw up (way too much food, way too little insulin) but when I find out I give myself fast acting insulin to bring it down. And I keep taking insulin until it is down.
So it seems to me there are a couple possibilities here (besides diabulemia):
- Do you test enough? You need to test at least a few times every day otherwise you won’t know when you’re off.
- When you test high do you bring your BG down with fast-acting insulin? And keep taking insulin until it comes down?
- If your BG goes high a lot then you aren’t taking enough insulin - you probably need more basal insulin.
A doctor can help with these adjusting treatment for testing and insulin, but you’ll learn to do a lot of it yourself with time. Joslin will hook you up with nutrionists which should help.
I don’t know how many times your body can take it, but it seems like your spirit has about had it with the DKA! Great that you can go to Joslin, hopefully that can help you get on the right track! You hate testing BG, any chance of a continual blood glucose meter to fill in the gaps, so you only need to test that 4 times a day? Keep working with the dr’s - I am confident that with the right care, your diabetes can become the thing in your life that you can control!
Wow you are one strong individual 15 DKAS,I have had it 2 times and both times admitted myself to the hospital as I had an infection which made the DKA but I have promised myself I will never go into hospital with it ever again (fingers crossed).
I think you should have a proper blood test and ask your team to look for any infections in your body because comas and Dkas are not nice at all.
I am not sure how many dkas that the body can handle but the less you get the better I reckon.
I hope you and everyone else never have to deal with it ever again.
Thats so true,
well i see a therapist every week and i told her how the anorexia is coming back,
so we are working on that situation together, i just have to feel like my life is in control again, i will eventually its just going to take some time.
Well i take 36units of nph right when i wake up, and 33 at dinner time… but also use novolog throughout the day.
When i was on the lantus bc its a 24hr acting insulin i only took it once at bedtime i was taking 38 units, i found lantus to burn a lot. and my skin wouldnt react right with it. my bgls are always good intil last minute… ill be at 76 then an hr later its 129 then 2 hrs later its HI. i also go inot DKA so fast but correct even faster, which they do not understand at all…
Probably doesn’t feel like it, but working on this is getting control back. Had a good friend with anorexia & she was in denial. We watched her waste away getting sicker & sicker. She was hospitalized because she was near death from starvation & is doing better now.
A couple of things to consider because NPH is unpredictable.
Try Levemir. I did horribly on Lantus. It had peaks that sent me low & then unexplained highs that had nothing to do with food. Levemir doesn’t burn & is more level. Despite what doctors hear from pharm reps, Lantus & Levemir do not last even close to 24 hours for most people. Also, many people take basal in two doses. It works better this way & is better absorbed than in one large dose. Many discussions here about Lantus & Levemir for you to search.
Your timing of insulin to food may not be correct, if your dosage is right, since you’re going high at 2 hours. You may want to experiment with timing to prevent this by taking it earlier. I had to switch to Regular because rapid worked too fast & was gone too fast. I need a longer acting medium range insulin because I have gastroparesis (delayed stomach emptying).
Hey, Aerie. Welcome to our community! I’ve been a member of TuDiabetes for about a year and I have learned SO MUCH. I have had type 1 since the age of 14, which is coming on 12 years ago now. I didn’t really start to HANDLE my D until talking about it and being open about it. I started talking on here, slowly, and now people can’t get me to shut up! Just being open has really really helped me in taking control of my D. If I’m not hiding it from everyone else, it makes me more aware of what’s happening to my body, too, because I can be vocal about what’s worrying me- about my successes AND my failures.
i’ve also had Dka nearing on 10 times over the course of the past 12 years. At diagnosis it was 1200 BG and I’ve also hit Dka as low as 350 BG due to stress and inability to keep foods down. I also get into Dka VERY FAST. If I’m emotionally upset, I can feel the heartburn start, I can literally watch my BG go up 100 points within 20 minutes. The pain is unbearable in Dka. But, I’m here. And still going.
I’ve also been in insulin shock comas. I can think of 5 episodes off hand right now. Scary. And the seizures that come during those ache the muscles so terribly. Mine were mostly caused by Lantus. (it burned for me too) As soon as I came off of Lantus, I haven’t had a seizure since. Using Levemir now. (doesn’t burn nearly as much)
If you decide to come off of NPH (talk to ur doctor), your eating schedule will get some breathing room. What this means is that diabetes won’t be dictating when and what you eat as much. Levemir is a basal insulin which just keeps your BG level stable. It has no peaks, unlike NPH which has peaks after 6 hours (if I remember correctly). Therefore, on Levemir, you would only have to eat when you’re hungry. You still have to bolus (Humalog) when you eat, but your eating schedule is much more lenient.
I, too, have insulin resistance. Every two years or so, I become immune to the short acting insulin that I’m on. I end up having to increase my dosages almost tenfold by the end of the two year mark. Then, I swich insulins and I’m good for another two years. Just last week instead of Humalog, I’ve started Apidra. It stays in my body for 2 hours instead of the 6 hours that Humalog stays in me. REMEMBER; every diabetic is different, so you’ve got to find what works for YOU.
I had diabulimia for two years when I was 16-18. Basically, I was sick of having my body tell ME what to do. It had nothing to do with losing weight. It had to do with needing that sense of control. Being taken off of NPH (and therefore, taken off of the strict eating schedule) helped me to overcome that.
I also had anorexia for two years, when I was 17-19. I’ve since learned that I can eat what I WANT to eat, so long as my BG numbers are in target and I’m getting all the nutrition that I need. If my lab tests come back positive, then I’m doing well.
Joslin Diabetes Center is filled with great information. I’ve volunteered there on numerous occasions and they are really great people. They wear their insulin pumps on the outsides of their jeans pockets, they wear their medical IDs out in the open and they say “diabetes” without whispering about it. It was very relieving to walk around in there and feel like I “fit in”. Everyone there is struggling with the same issues that we are. And that is so amazing to feel like you’re not alone.
Please keep talking to us. Just talking about the D will keep you focused and will help center your mind, and ease your worries.
To answer your question, I don’t know how many times we can handle Dka and comas, but the human body is pretty resilient and I’ve found that mostly it’s MIND OVER MATTER. if you’ve got a strong mind, you will persevere. It’s the reason why a man can take 20 bullets and walk away from it. Keep your spirits up, Aerie. You’re among friends here.