Frustrated

I have been using an average of 80 units a day of inulin with my pump. I know, a ton. The doctors are shocked with how much I use, but I don't know-I don't eat that much-when I eat cereal or fruit I have to take more, also things like pizza or stuff that has a lot of fat in it-seems that my insulin doesn't work too great with that stuff. I just noticed I had 1 bottle left- welll... 2/3 of 1 bottle left, and I usually refill the script when I get to one left. Turns out...it may not be enough to even last me to my refill date causing a beautiful $412 bill. The doctor that I work with-doesn't think it's worth seeing me until I can give her a full before breakfast/lunch/dinner/bed and one hour after said meals for 3 weeks time. This is difficult for me since, I am at work from 6-8am-6/7pm and go to bed at 9 or 10, I eat dinner late and I get frustrated when my after dinner and bedtime are the same time.  (so i haven't been able to send her a complete list or blood sugars so I know she wont want to see me or think about increasing my dose etc)

 

To make an incredibly long story short-er...I just looked at my pump averages-since I've started using my CGM more-I have been using WAY more insulin...my script says I am at 100 units a day-looks like MANY days I've been using 120 ish-it's been next to impossible for me to stay 'stable' or well, under 200-I don't know what's going on with my body and why I'm needing so much to stay normal. I was taking symlin but my doctor said it was pointless because I wasn't losing any weight (oh and a plus too I've been gaining weight like crazy even though I'm more active than ever and my diet is way more stable than its ever been-i measure EVERYTHING out etc)-and on my insurance I have to pay entirely out of pocket for some time and a 600-700 dollar script- SUCKS. I am 23 and trying so hard to manage all of this on my own but I am so so lost.

 

Any help, advice, whatever would be so appreciated, sorry to talk in circles if I did... I am just beyond frustrated and near tears when I think about needing more insulin, or gaining weight or just everything in the "Big Picture" look like it's out of control, when I felt like I was getting way better at management...

Different people have different insulin sensitivity, so it doesn't mean you're a bad diabetic because you need more insulin.  Make sure your prescription reflects what you actually use, including extra to cover the waste from using a pump.

A couple things to help with sensitivity:

- Move your infustion sites around so you aren't overusing skin.  The tissue can only absorb so much insulin.

- If you can get  a walk or swim in during the day, it can really improve insulin sensitivity.  I know that can be easier said than done with a busy schedule.

- Eat low carb.  You may be eating healthy, but too high carb will take more insulin.

- You don't say how old you are, but I know when I hit 30 I started gaining weight eating the same food.  It was a reality check... as you age you need fewer calories.  You may need to adjust your intake.

- Don't eat high fat meals at night.  Since you're eating dinner later, go with something light.  It takes longer for the food to digest and for the carbs to hit your blood sugar.

- Might also try Metformin.  Some doctors show improved insulin sensitivity with type 1s too.

- Look for a different doctor.  You need to find one who has a similar treatment philosophy.

Don't feel hopeless.  Get the insulin you need and also consider some ways to make your insulin as effective as possible.  Let us know how it goes.    -Jenna

Hi Jenni,

I would try going on Metformin. I have been on it many times in combination with my insulin. It helps you to use less insulin and with using less insulin it helps you lose weight as well. I was diagnosed at age 20 with T1 (after being misdiagnosed as a T2) and since I have had quite a few ups and downs with my weight so i know just how frustrating it is. I am extremely insulin resistant which makes it hard to fight the weight battle and the high blood sugars as well but in the last couple of years I have been able to keep my weight at about the same. It is extremely frustrating dealing with it. I would take more and more insulin to try and combat the highs and my sugars would just keep climbing along with my weight. I switched to Levemir and asked my family doctor to put me on Metformin after I had ended up in the hospital twice in a 5 month period (this was 5 years ago) and it helped me get my weight back down and I have not had as much of a problem with high blood sugars and I have stayed at a healthy weight (except for during my pregnancy) ever since!!!

Good luck to you and I hope that you find what works for you:)

Is Metformin typically given to type 1's? I have gained 30 lbs in a year if not less than a year and it's starting to scare me...Is it expensive?

Jenna- sorry didn't see your response at first, I am 23. I work out every night or morning-I'm not supposed to (per my doctor) work out in the AM but-sometimes I have to wtih my schedule-it makes my blood sugars drop like crazy.

I mostly eat chicken breast at night or salad...but yeah... the different doctor thing-in my part of WI there are almost no doctors-one in my city to be exact- they have all frustrated me quite a bit because they wont work with me it seems-the only doctor that ever understood me gave me insulin when I couldn't afford the $412 for a prescription...(had to pay all out of pocket before i reached $1250)

Metformin reduces the sugar the liver dumps into blood steam (that's what causes dawn phenomenon) and makes the body more insulin sensitive.  You could try it and see if it helps.  

Sounds like you may also have thyroid issues or something else that's preventing you from losing weight.  Has your doctor tested you?  Stress and lack of sleep can also cause weight gain because we tend to eat more food and more fatty food to make up for the tiredness.

If you can't find an endo you like, try an internist.  I've had a couple in the past who were extremely knowledgable about diabetes.  Be insistent about your prescription.  It needs to be a monthly prescription for 5 bottles of insulin and specify that it's for 4,650 units (150u x 31 days).  Your medical records document that you're insulin resistant, so even though insurance won't want to give you such a big monthly supply, they have to because that's what you need.   Good luck.  

I have something called hashimotos thyroiditis (sp?)my doctor said it is why I cannot lose weight but it shouldn't be the cause of this much gain. They can't treat it until it goes under or over active. Which they said may happen due to pregnancy, going off the pill or some other huge hormonal change.

I sleep 7-9 hours a night so that shouldn't be the cause...

I've tried to see someone in internal medicine, the ones I have seen refuse to treat me because I am on an insulin pump and that confuses them or something? I've tried a few because the only endos before a year ago in my area were an hour drive away, and when I tried again and again to explain how hard it was for me to basically take a whole day off of work for a doctor appointment, and they have only refused to refill my prescriptions etc...and have said there is no other options but making the trip...

I am very independent and can figure out the things like how much i need for certain foods how to adjust things etc but the weight thing is just something I cannot get under control, and now the super high highs that refuse to drop...Hopefully I'll figure something out I will try the metformin...

Try keeping away from those kinds of food, trust me I've haven't eaten cereal in 5 months, if I ever eat pizza I double the amount I'm taking to counterbalance what I eat, but it would just be simpler if you don't eat them you know what I mean?  

I take Metformin myself and I'm type 1 diabetic. It is usually prescribed for those with type 2 diabetes but has shown promise in those of us adults with type 1.

Hello Jenni

I too am at over 100+-120 unitis of Novolog per day. Age is a part of that. I am not as active as I used to be in my 20's and 30's. As stated above, a new doctor may be in order. Dr's do not control how we treat our diabetes, they advise. If my doc stated he would not up my insulin Rx unless he saw me, that would be the end. You state you are using both a CGM, and a pump. Is this a Medtronic system? If yes, do you utilize CareLink? I am a data nut, and find the ease of sening all the data stored in my Medtronic pump directly to my CDE with the click of a key pad as a great thing. We exchange dtat punce every 2 weeks or so, make adjustments, and move on from there. Dr's offices are usually great with providing samples. Do you request any when at a visit.My last vist, I asked, and got 5 viles of Novolog, plus some other items.

As much as I love some good homemade pizza, I stay away from it as much as possible. High Fat and Carb items are notorious for creating havic with sugars. Carbs enter the blood stream almost immiedietly, while fat and protien take 4+ hours. I am sure you already know all this, jst repeating the old song.

Frustration will come and go, don't give up, do your best to stay positive, and alsways remember, you are most important!