How long were you T1D before you got the pump?

Do you have to wait until your pancreas totally burns out to start insulin pumping? Do you have to be stable on a certain amount of insulin before you can get it? Does anyone know the criteria? Under what conditions do the insurance companies deem it as being necessary? I just want to get my diabetes under control and none of my doctors seem to be in any hurry! How long can you have sugars in the 250 range before there is damage? The allergist is saying MONTHS to desensitize me to an anaphylactic insulin allergy. That seems a long time to be so high! I know it is a rare condition (less than 10 known cases), but I don’t want to be blind or on dialysis, either!!

Well, I am sorry that you are allergic to insulin - that seems very unique and unfortunate. My son waited 6 months for the pump. I know of other young people who are told they can get the pump once their numbers are better, but honestly, although the pump is alot of work initially, it does provide you with exact doses of insulin - like .2 units for example. You can never get that with shots. ALso, with the pump always attached, it is easier to bolus for food and snacks. I think it depends on your endocrinologist’s take on pump use!!! How do you get desensitized to insulin???

The allergist said that they have to skin test me with every available form of insulin, including preservative-free and animal source insulins. Then they take the one which reacts the LEAST (hopefully not at all) and start out with a micro-dose, then double the dose at 30 minute intervals for a total of 4 doses, and then you come back the next day and they start you at the second dose. They keep doing this for months sometimes! If you react to a dose, they quit and repeat that same dose the next day. What is happening is that your body is slowly using up all of the antibodies against insulin until at some point you just run out and are using them as fast as you make them. This is a small amount, and not enough to cause a reaction. Eventually they will get you up to the maximum dose set for one injection by your allergist. I was told that once I was desensitized, I could take injections and boluses without fear, but I could NOT miss taking an insulin dose for any reason, or the antigen would build back up in my blood and the next time I took a shot would be trouble.

My BGs were in the 200’s/300’s/400’s for years before home BG meters were ever on the market and still in the 200’s almost always after meters came out. When I started on my first insulin pump my a1c was 13 point something very close to 14. I don’t think a matter of months will put you in risk of losing your kidneys or vision, but each body reacts to diabetes in different ways.

My insurance would not cover a pump until I had labs (C-peptide) drawn to show how much insulin my pancreas was still producing when I got this pump 4 years ago. And that’s after already being on a pump for 10+ years before that. My insurance companies before this one didn’t require any labs. I have been type 1 since 1972. (That said, I had diabetes for about 22 years when I got my first insulin pump.) I was furious that I had to prove I needed insulin to the insurance company. ALL type 1 diabetics need insulin for crying out loud! But yes, to your original question. Some insurance companies require that you are making nearly no insulin on your own to cover a pump.

If you have an anaphylactic reaction to insulin tho, I don’t think any doctor or insurance would put you on a pump. That is a constant drip tempting a fatal reaction. Best of luck to you in your predicament.

Western Washington State

Hey Thunder Owl!
I had T1D for 40 years before finally deciding to give the pump a go. My A1C’s were in the 7% range before hand - which are okay - but I was fighting battles with lows/highs - you know - the roller coaster ride (tho’ I do love roller coasters - but not with my health). So, I decided to try out a few pumps, not knowing I’d fall in love with them. Now, 2 years later, last A1C of 6% - less hypos - more steady BG’s - I’m happy. BTW,. my endo thought I was silly going on a pump, guess what? It’s my body, I can afford a pump (have private insurance for now - not sure when I’m no longer working - but I’ll either become a pole dancer or God knows what to still afford my pump).
No criteria for me - I just went on the pump - without doctors approval - and then he realised it was a good thing for me with an A1C at the time of 5.7%! Case closed!
Anna from Montreal - The Trials and Tribulations of a Diabetic

I was a diabetic for 18 months before I went on the pump. I managed my 1st pregnancy on shots, and was on a roller coaster for 6 months after Lily’s birth with my blood sugars and finally just said, this is enough, and asked for it. I didn’t want for my doc to say anything.

But with an allergy, I’m not sure a pump is a good idea for you.

uhhh… 39 years?

I took injections for 6 yrs before getting my pump. It wasn’t really the dr’s holding me back though. More like my lack of knowledge about it. It got to a point to where my bg’s were constantly on a yoyo and it became really furstrating for me and the dr’s to try to figure it out so they convinced me to try a pump. To get the pump, I had to do diabetes education and also a carb counting class which was a total of 4 days. I also had to keep a log of food, bg’s, and insulin for 3 days and get a c-peptide blood test. I mean, you have to know what you’re doin when using a pump as far as counting carbs and the such, but that is all learned. Maybe you can try seeing which rapid insulin you react best with? Perhaps they will let you get a pump because of the allergy, meaning you would need less insulin as opposed to injections - for me like half the amount. Usually they like you to do injections first but I would definitely ask.

only 6 weeks! I hated shots!

I had type 1 for 28 years before starting on a pump. Hadn’t been producing my own insulin for many years. Quite a fight to get it, but perseverence finally paid off, and my control has much improved ever since. I feel 100% more healthy. Completely changed my life, I have more energy and spend less time rushing to the ladies toilets, as with higher blood sugars I was frequently weeing! My HbA1c has reduced from between 7.5 and 9.3 over the years, to a respectable 5.8% the last two times it was tested!! Great to prove the doctor wrong who didn’t think I would benefit much on a pump. Huge relief to know I now stand a much lower risk of getting the ‘dreaded complications’ we all live in fear of.

Good luck with getting your pump, it will be the best thing you ever did!

So sorry to hear of your insulin allergy. Hoping it’s just the preservatives that causes this & you can use some brand. Which one gave you a severe reaction to know about this?

Not that it’s a good thing to have high BG, of course, but you have time before you have to worry about damage. And, some damage can be reversed once your BG is in more normal range. Thankfully, you’re producing some insulin or it would be even higher.

Definitely frustrating, but sounds like it’s good that you have cautious doctors. Going into anaphylactic shock is worse.

We all watch what we eat & try to exercise, & so much harder for you without injected insulin.

I reacted once to 70/30 and the second time got lantus in a paper cut. (well, it WAS a deep one, but SHEESH!) The allergist says that a low basal rate on a pump would actually be BETTER for me once I get desensitized, (or find one I am NOT allergic to). It would keep using up the anti-bodies as soon as they were made. I would probably need MORE insulin than another diabetic because my body would be destroying some of it.

I know what anaphylaxis feels like. I also reacted to allergy shots for common things like cat dander, molds, and pollens three times. That is why I am worried about desensitization working for me. The last shot I reacted the worst to in the allergy office was1/10,000th dilution and it almost killed me!

I am keeping a journal, and got books on pumping and carb counting. As soon as I can take the stuff, I’m gonna be ready! I am gonna start practice carb counting NOW. Diabetes warrior…that’s me! Yeah, I cheat a little about once a week still, but overall I am good about it. Lean meat, green veggies, and fruit/nuts for snacks. I feel like I am very hungry even after I eat though. sighs Diabetes really sucks!

6 years, i have been in the 250 or higher for years and im doing ok months shouldn’t hurt ya. you just might not feel so good. i went on the pump with my last pregnancy due to nothing working and have been pumping since. good luck. my endo said when i first found out that complications wont even come about till after you have been diabetic for at least 3 years., if that is true or not i believed him.

I took “D” at 10 back in the early 70’s when threre was no such animal and when I got pg with my 1st daughter 15 years later I got put on one on the 1st insulin pumps here in the US and have been pumping now for about 21 years with a 2 year break with a pancres transplant that didn’t take. So just hold on your Drs will get to it…As for the highs well even with the pump I’ve had quite a few.

I was misdiagnosed as type 2 for years when in fact I was LADA. When my pancreas finally went south, I was on MDIs for only about a year before going on the pump. Now I use the pump and a CGM to stay in control. I embrace the technolgy.

My doc would still be treating me as Type 2 if not for the fact that I have an insurance policy that does not require referrals! I just took my butt to an Endo on my own after about three weeks of “it’ll come down eventually” and “You should be on a stricter diet!” I was losing weight and feeling lousy. The Endo found out right away.

I waited for almost 19 years for the pump, i was trying to get on insurance and to get my A1c into a good level. which it is. my doctors for at least ten years had told me I should switch to a pump, but we never had the money because we were on and off insurance. then finally I switched to a pump and boy has it been so much easier to manage.

No you don’t have to wait until your pancreas burns out…I’m on the pump but only 2.93% is working I only have 60% of my pancreas 40% was removed and my numbers were staying that high and higher…I suggest you get with you health provider and get on that pump…It is wonderful…Makes life so much easier…Lots of Luck…Darlene

Hi Amy yes the pump is for me also because I test constantly I do have a grip on my Diabetes. I love the pump because of its convenience…It makes my life alot easier…Darlene

I was diagnosed for 4.5 years with Type 1 before I got the pump. It has now been 8 months and I would never want to go back to MDI.