Have you ever rationed insulin (taken less than you needed in an effort to prolong your supply)? If so, how recently have you rationed insulin?

Activity
- 5 hours, 45 minutes ago
  
  AnitaS likes your comment at
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  Only "illness" that makes it really difficult to control my blood sugar is getting steroid injections into my cervical spine or fingers. I leave my basal rate on my pump at 250% and need much higher bolus doses and many "extra" doses if my blood sugar remains really high. I tell the MD's that it turns my insulin into tap water and try to avoid it, experience with having gotten these injections over the past few years has helped, but having blood sugars of 400-500 despite much higher basal and bolus dosing is so frustrating!
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 5 hours, 46 minutes ago
  
  AnitaS has commented in the same post you commented in :
  When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
  When I had surgery last year and couldn't exercise for a few months, my time-in-range was very good. I was shocked but I shouldn't have been as exercise is one of the things that make my diabetes harder to keep under control. During recovery, I didn't have the ups-n-downs in blood sugar that I usually have when I exercise.
- 6 hours, 52 minutes ago
  
  Randell Cole has commented in the same post you commented in :
  Mark Cuban’s Cost Plus Drugs Tests New Insulin Program
  How can I get on the Mark Cuban test program ?
- 6 hours, 52 minutes ago
  
  Randell Cole has commented in the same post you commented in :
  Mark Cuban’s Cost Plus Drugs Tests New Insulin Program
  How can I get on the Mark Cuban test program ?
- 6 hours, 52 minutes ago
  
  Randell Cole has commented in the same post you commented in :
  Mark Cuban’s Cost Plus Drugs Tests New Insulin Program
  How can I get on the Mark Cuban test program ?
- 6 hours, 52 minutes ago
  
  Randell Cole has commented in the same post you commented in :
  Mark Cuban’s Cost Plus Drugs Tests New Insulin Program
  How can I get on the Mark Cuban test program ?
Clear All

Have you ever rationed insulin (taken less than you needed in an effort to prolong your supply)? If so, how recently have you rationed insulin?

If you or someone in your immediate family has T1D, has the rest of your family been screened for T1D antibodies? If no, do you think your immediate family would be willing to be screened for T1D antibodies?

Sarah Howard

26 Comments

Molly Jones

Thank you! I have never needed to do so. So many things in life we take for granted, just read a book written a century or more ago or visit the hospital.

1

1 year ago Log in to Reply
Don (Lucky) Copps

We have a huge conflict of interest between diabetic health, insurance allocation and insulin pricing. Long ago insulin pricing was not a big issue but given big Pharma greed everyone is concerned. Insurance companies now force doctors to write prescriptions with the daily insulin use on a per patient basis. As a result if you make any kind of mistake, have a sickness and/or a need to use more insulin you will get squeezed on when you can get your next available prescription. it is incredibly unfair on the patient, also unrealistic.

7

1 year ago Log in to Reply
Beth Franz

Shameful to ever be put in this position in the first place and why as a patient we are forced to have these contingency plans to stay alive. I am a firm advocate of making insulin and cgm supplies OTC and prescription-free much like is done in other countries outside the U.S.

4

1 year ago Log in to Reply
rick phillips

I was an undergraduate about 45 years ago. What a mess. Don’t ever do it – we have ways today to help you get insulin. I promise just reach out

1 year ago Log in to Reply
Natalie Daley

The copay for a two-month supply of Tresciba and Humologue is over $500, down from $727 a few years ago, due to recent legislation. I don’t eat lunch, which saves a third bolus and lowers Tresciba by a third, so I saved some money and lost 25 lbs, a win/win?

1 year ago Log in to Reply
connie ker

I have never rationed insulin, however my T1D husband and I shared the Lantus vial so we didn’t throw half of it away before it got impotent. That worked well; we didn’t share syringes or Humalog. It was a conservative way of not wasting insulin.

2

1 year ago Log in to Reply
1. Steve Rumble
  
  My T1D wife and I did the same thing!
  
  1 year ago Log in to Reply
Sasha Wooldridge

I chose other because I don’t use less than I need, but try to need less insulin by changing my diet. It allows me to stockpile a bit just in case I’m in a prolonged bureaucratic runaround with providers, suppliers, insurance companies, and pharmacies.

2

1 year ago Log in to Reply
john36m

It’s not exactly rationing, but as a pump user, I need to change the pump every 3 days. I try hard not to leave much or any extra in the pump when it is time to swap out.

2

1 year ago Log in to Reply
Sahran Holiday

Years ago Omnipod would fail shortly after activating full of insulin. Insulet refused to replace the wasted insulin. Went to 2 meals a day to reduce the amount of insulin make it last.

1 year ago Log in to Reply
1. Tod Herman
  
  Omnipod doesn’t tell you this (they probably cannot for liability reasons) but if your Pod died shortly (or anytime after starting it) you can extract most of the remaining insulin out of the Pod using the syringe from your next Pod kit
  
  1
  
  1 year ago Log in to Reply
Kristine Warmecke

Yes, I have been since starting on Medicare. As Novolog is not formulary in the state I live in. I have an exception for coverage, however my portion of it is $800+ a month; sorry on a fixed income no one can afford that.
My endo and I have been waiting for 6 month’s to hear from Nova Nordisc to see if I’m approved for free Novolog.

1

1 year ago Log in to Reply
Henry Renn

The results are true for T1s subscribing to td1exchange. to. Don’t think that any generalizations should be drawn from the results.

1

1 year ago Log in to Reply
Jana Wardian

I have chosen not to eat as many carbs to reduce my insulin need.

1 year ago Log in to Reply
William Bennett

Never rationed myself, but I have supplied insulin out of my backup stash to a T1 friend who had maxed out their pharmaceutical allotment and couldn’t afford paying the OTC price of ~$300.

1 year ago Log in to Reply
betsy valian

I rationed insulin when in Central America, when the heat ruined most of my supply during a power outage….some countries aren’t as lucky as the USA w/ insulins, supplies and handling conditions…

1 year ago Log in to Reply
Keira Thurheimer

I am very lucky to have good insurance that has a $30 copay for a 3 month supply of insulin. My doctor also writes my prescription for an extra vial in case of greater needs or accidents. (I once had the bottom of a vial blow out when I injected air into it.) I have been able to build up a reserve, so I dont have to make the decision to ration.

1 year ago Log in to Reply
Ahh Life

In my case, yes, recently. But on a very, very short-term basis. If I am away from home doing errands with only a few units remaining, I will sometimes correct less or bolus less in order to keep SOME basal insulin going until I can get home and recharge the pump. ¯\_( ͡❛ ͜ʖ ͡❛)_/¯

1 year ago Log in to Reply
Amanda Barras

No, I have never rationed. However I have had to buy Regular and NPH over the counter without a Rx to get me by when I ran out of prescribed insulin. Had that not been an option, then yes, I would have had to ration or go to hospital or doctors to seek emergency help.

1 year ago Log in to Reply
Mig Vascos

Out of the commentaries, it seems like people have rationed insulin at times for reasons other than availability or cost. I’m not sure what this survey try to address: cost, availability or pump problems?
I’ve been fortunate to always have enough insulin to cover my needs . Now a day being on a pump guarantees me Medicare coverage for insulin and my secondary insurance covers the rest of the deductible.
The insurance plan I had before Obama cover my 3 month supply for just $10. How great!!! I know that change in insurance cover helped some people but it put me at a disadvantage. After struggling with different plans for a while I was able to get a plan that suits me.
Also it’s important that the prescriber writes the prescription to cover the waste that some pumps have by deciding an infusion set change is needed when there’s still insulin in the cartridge.

1

1 year ago Log in to Reply
Nicholas Argento

No- but I have been fortunate. Many others have not.

1

1 year ago Log in to Reply
Lynn Smith

I agree with Tod Herman. I extract as much insulin out of my old pod using the syringe from the new pod and then in my insulin vial it goes. Never had a problem doing that, so I will continue. Just glad to hear someone else does that.

1

1 year ago Log in to Reply
William Schaffer

Mail order screw-ups made me ration Lantus. I thought that I had a standing order for refills, but found out I needed a new Rx.

1 year ago Log in to Reply
Bekki Weston

My current Insurance coverage is generous and I don’t need to ration. However, a personal “ooops” recently caused me to ration my Tresiba. We left on a Thursday morning for a long weekend. That evening, I saw how small an amount was left in the pen. Instead of my usual 8 units, I lowered it to 6, and had 6 available to me each of the next three nights, until we left for home on Monday morning. Lesson learned: don’t just grab the pen….LOOK at it!

1

1 year ago Log in to Reply
PamK

I have never had to ration my insulin. I feel very sorry for those that do this as they put their health at risk. Most endocrine offices have samples available. So, for anyone reading this who is rationing their med(s), talk to your doctor to see if they can help you get what you need. Ask about samples – one or two pens can help get you through!

1

1 year ago Log in to Reply
lis be

I ration insulin at the end of most years (because I hit the insurance “donut hole” and want to wait to pay the extra money towards my deductible in the new year. It’s not a huge problem, I just cut back on my carbs to extend the insulin I have left.

1 year ago Log in to Reply