I have just come home from a 4 day stint in the ICU with a life-threatening case of DKA. I have always had relatively good control, so I am still in shock. They were never able to find out why my insulin had stopped working. No infection was detected and every cavity in my body was x-rayed. My blood pressure plummeted and for awhile it was touch and go.
So dear community, I have questions:
1) What does the recovery time look like? I know this will vary. How did you take care of yourself? Food, supplements?
2) My insulin requirements have doubled. Is this typical?
3) I have some real concerns that I have developed some sort of resistance to Novolog and/or the pump. I have been having many incidents when infusion sets do not seem to work well and I resort to injections, which usually bring my bg down. However, even injections at home were only minimally effective this time around and after 4 days I landed in the Emergency Room. I know I waited way too long, but I was not showing signs of extremely elevated ketones....
4) Any ideas outside the box. Blood tests that might get at the root of the problem?
Thanks for all of your advice.
Barbara
Hi Barbara,
So sorry you went through a dka, I'm glad you are ok and survived it! I went through it at diagnosis so it was a slow build up to it and at the end everything went crazy. I did have complications and two hospitalizations and it took about 3-6 months to start to really feel more normal again. I hope you feel better soon, just rest, stay hydrated, eat properly and let your body recover from the ordeal. I was told to supplement potassium which I still did until recently due to very low potassium in dka. I'm not sure about the insulin requirements, so far mine reduced after dka and have increased only a little.
Maybe you have some scar tissue? I know that has happened to some people who have had to go back to mdi. Have you asked your doctor about novolog and your concerns? Maybe you can try another fast acting. I tried humalog at one point due to insurance issues but I couldn't get the timing right and it made me go low.
I wouldn't wait if you have medium ketones and bg is above 200-250 call your doctor and go to the er if you are rising and can't get control of the situation. I was told that-, any dka like symptoms, bad lows etc. seek medical help/go to an er. The sooner the better usually because you never know what will happen in dka, don't ever try to treat it at home.
Thanks for sharing your personal story. It is definitely a life-changing experience.
Let's start with an obvious observation - ANYTIME spent in the ICU is bad, I am sorry you had to go in.
What does "relatively good control" mean for you?
I know that my most recent high blood sugar excursion where I went from a low of 44 mg/dl to 500+ in the course of 12 hours was mainly due to scar tissue in my rear love handle area and my buttocks. I thought I was moving my sites enough, but apparently not, so I gave those areas a 30-day vacation, plus when I went back, I only left my infusion sets in for two days instead of my normal three.
Fortunately, my episode did not require an ER/ICU visit, but I was very close to it. A call with my endo helped me clear the fog and see that I needed an IM shot to start bringing my BG down.
I am not surprised that your insulin reqs have doubled, especially if you are continuing to run on the high side. They might come down as you get back to a more "normal" day-to-day living. I would try and stay aggressive in the meantime.
Hi Mike,
Thanks for responding. Even at my worst my blood sugars were only about 250 but my ketones were extremely high and I was extremely dehydrated - though I had been drinking a lot of water. The episode of being resistant to the insulin I was using started on Monday night and I not only changed my sets, changed my insulin, but it took me multiple shots each night to get my blood glucose under control.
This is why I am now thinking that I am developing some sort of allergy/resistance to my insulin, Humalog, or that my body is beginning to be unhappy with the whole pumping system.
I am open to any further insights. Also what is an IM shot?
Thanks,
Barbara
I have a very high sensitivity to drugs in general, so in some ways
Sorry. IM is an IntraMuscular shot. It normally takes a longer needle, but I have lots of places on my arms where my standard insulin syringe will go right into the muscle. An IM shot will have a faster effect than a subcutaneous one (and not last as long).
If you think you are developing an allergy/resistance to Humalog, ask your endo for a sample of Apidra or Novolog and see if that makes a difference. I tried Apidra and it worked very similarly to Humalog, but with a faster onset of only 10 minutes before mealtimes.
How are you doing with rotating your infusion sets?
I have had a few bouts with DKA. I wear a pump and any time my set comes out or stops working for what ever reason, DKA sets in fast. A few times I got very sick to my stomach and dizzy. My sugars were not even that high maybe high 200s. My insulin requirements more than double after for about a day.
When I exercise or do tings where I know my set comes out, I will take a small amount of Lantus that day and reduce by basal a bit.
Supposedly if you have SOME insulin on board you wont go into DKA even if your sugars are high,
If you have significant resistance, this may not work so well, but there is a blood test for that.
My doctor told me years ago that in order to prevent resistance you can switch insulins every couple of years. I go back and forth between Humalog and Novolog. I have never had resistance and my insulin requirements have not changed in 25 years. I don't if switching around has been why or maybe I am just not resistant. Still its worth a try. Also Regular insulin, it sticks with you longer and can prevent DKA but it also responds slower.
I started on Pork insulin, so I have changed insulins many times. Maybe its worth looking into switching
Thanks for writing Timothy.
Tomorrow I will try Humalog. I have been on Novolog. I would be curious how your body responded to each of these insulins. Some say that Humalog takes a bit longer to start acting and has a longer tail. Has this been your experience? Also I am very curious as to the blood test that looks at insulin resistance. My blood sugars have been okay since I've been home (one week) but my insulin requirements are still double what they usually are.
Thanks for the information.
Barbara
I think that I am pretty conscientious. I have been giving my immediate belly region a rest for the last six months when my sets would totally conk out on me after 1.5 days. I really do wonder if my body is rebelling against pumping, but I will switch insulins (I was on Novolog and will now try Humalog) when I do my next set change.
Do you find that absorption differs when you put insertion sets in different regions of your body?
Thanks for the dialogue,
Barbara
I have had periods where it seems like infusion sets placed on my upper buttocks take a bit longer to "get started", but when I re-started using that area after giving them a 30 day holiday, I haven't had any problems.
My take going forward is to do a better job of rotating my sites in those hard to reach areas, and sometimes use them for a shorter period (2 instead of 3 days).
I hope you are recovering from a scary DKA.
The only thing I can comment on is recovery time (I do not pump). My doc said that DKA is like "running a marathon with no training". I was very weak and disregulated for about 2 weeks after. Not fun.
Stick close with your doctor. Does he have a nurse practitioner or CDE? They may have more time to spend answering your questions.
You and your insurance are paying big $, and as a medical consumer you need all of your questions answered, even if you have to call them every day.
Hi Barbara14,
I’m home from 3 days in the hospital for DKA. I am on over double the insulin I was on before and can’t get any sort of control. I can’t see my Endo for another 2 weeks. Did your insulin requirements go back down? Is this my new normal?? I don’t even know what to eat, anything spikes me crazy and I don’t feel hungry but I know I have to eat. Please offer any advice thanks.
Dear Rose,
I am so sorry. It really is an awful experience and it did take many weeks before my blood sugars normalized, so be patient and kind to your body which has just been through a big trauma.
I did a lot of strengthening broths - and vegetables - and small amount of protein. I kept my carbohydrates down and the food that I ate very nutritious. I slept an enormous amount. In general I stayed very low carb until things got back to normal and my basal rate remained elevated for a long time. this helped with avoiding spikes. You might want to do some basal testing. Eventually I normalized back but it took a long time.
Take care. Feel free to write again.
Barbara
Thank you, Barbara. It is encouraging to know your insulin requirements eventually normalized. I will lessen my carb intake for the meantime. I already eat very healthily.
Kindly,
Rose