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3K views 19 replies 5 participants last post by  LisaB 
#1 ·
Hi, my name is Lisa, I am a 53 years old female and was resently discharged from the hospital with diabetes 1. My A1c was 12. my blood sugar was 780. My whole life has changed, knowing that my life span has been cut short. Most people assume that you aquire adolescent diabetes when you are young. This was not my case. I had assumed the hot flashes were caused by menopause. prior to finding out I was a diabetic I recall a cut that took months to heal. Prior to being admitted to the hospital my symptoms felt like I had a bad case of the flu. In addition, to the diabetes discovery I contantly got UTI infections, and intimate relationships became impossible for me. My physician never checked for diabetes, due to the fact that I am slim and very healthy looking. I still struggle knowing that I have to take injections 4 times a day and it has only been a week since this discovery. I write this post to let other men or women know that you can get diabetes 1 in your earily fifties. I look forward to learning more about diabetes and this forum seemed like a good place to start.:crying:
 
#2 ·
Hi LisaB, welcome to the forum. Unfortunately diabetes is still looked at so stereotypically, first thought, fat people are diabetics and skinny people are not. That is oh so wrong and is dangerous for the patients.

This forum is a good place to find out many things that diabetics, type 1 and 2, are not told about by their medical team. The majority of those teams are still treating diabetes from learnings they have had for many years. Fortunately, many here have learned what works and doesn't work for them and gladly share their experiences. As you read through the threads and have questions, ask away. Someone here will be able to answer your question or guide you to a source that does answer it.
 
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#3 ·
Thank you, I agree with what you said about the medical team. My physician instructed me to inject 20 units of Lantus in the morning. When I did that, my morning readings were 300. When I experimented and took 10 units in the morning and 10 units at night, my morning readings were 125. One has to factor in the absorption rates which my be different for each person. I have mixed feeling about using the pen, because I read that some people draw blood in their insulin pen and it ruins the pen. Then I also have mixed feelings about the insulin pump. My fear was it could malfunction. What I am planning on getting is a glucose monitor, that I can get reading every 5 minutes, and those reading can be viewed on a Apple watch or I phone. I will post how that goes once I know it is covered my insurance company. I will post the pro and cons of the units.
 
#4 ·
Lisa - what a rude awakening it was for you to find out you're T1 diabetic and to have to go immediately to an insulin regimine. You aren't alone in this as there have been many T1 (1.5 or LADA) members across the years.

As you begin this journey of the management of your blood sugars involve, you might want to get one of these books. There's lots of good information in each one of them, and it can greatly help fill in the gaps.

Diabetes Solution by Dr. Richard Bernstein. Much of his book is on his website Read Online - Diabetes Solution - Dr. Bernstein's Diabetes Solution. A Complete Guide to Achieving Normal Blood Sugars. Official Web Site

Using Insulin by John Walsh

Think Like a Pancreas by Gary Scheiner

I think everyone new to insulin is apprehensive at first. The internet is full of horror stories. But in the years I've been on the forum, I haven't heard of anything bad reported about pens. In fact, most who inject manually like them a lot.

I am curious why your doctor only has you on Lantus - a basal insulin. Since you have diminished pancreatic function, I would have thought he's be wanting you to count carbs and inject a bolus to cover the carbs in your meals. Of course, I do understand how important it is to get the basal dosing correct so maybe that's what his strategy is.
 
#5 ·
Hi Lisa!

I am on insulin, started out with Levemir (slow acting insulin) and Novolog (fast acting insulin) using pens and now I use a pump. Please feel free to ask me questions.

The pens only go in one direction and can't draw-up, so I would not worry when an injection site bleeds. It won't ruin the pen or the insulin in it.

There are a lot of pumps out there, but before you get one it's pretty common to learn how to use insulin first. Sounds like you are only using Lantus (slow acting) insulin right now? The first step would be to start taking fast acting insulin with your meals. This is how all pumps work actually. They only have fast acting insulin in them, and let out a very small amount every 5 minutes to keep your blood sugar steady, then you tell it to give you more when you eat.

I have a Tandem t:slim pump, and I really like that it does the math for me. I look at my Dexcom, a continuous blood glucose meter to see what my blood sugar is. Then I type that number into the pump, and tell it how much food I am about to eat, and it gives me the right amount of insulin. It also keeps track of how much insulin that I have taken.

Are you seeing an endocrinologist? With an A1c of 12, you should have been referred to one, and the standard of care is to start out on a "basal / bolus" plan where you take a slow acting insulin 1-2 times a day (basal), and then use the fast acting insulin before meals and to fix high blood sugar (bolus). If that did not happen, I recommend finding an endocrinologist immediately.
 
#6 ·
I assumed with 4 injections a day (first post), she was on basal and bolus insulins.
 
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#7 ·
Thank you, for the information on those books, I will check into them. I try reading as much as i can on the forum, and learn from other diabetics.The information on this forum has been very helpful. I am on a sliding scale chart. Lantus 20 units daily and Humalog for the short acting insulin based on my meter reading. I also have been adding 3 tablespoons of coconut oil after each meal and my blood sugar is running 100-112. Yes it was a shock to wake up in the hospital, in DKA not knowing what happened to you, thinking you just had a bad case of the flu. I do feel better now after reading what some of the member wrote on this forum, many have given me hope. I am now looking for a back up plan, and checking out the OTC Walmart insulin, in case of emergency, but I need to find a conversion chart. I also fear dropping my bottles of insulin, so I ordered a protective case for the bottles. Ok, perhaps I will give the pen a try since that is what the physician suggested.
 
#8 ·
Hi Daytona, thank you for your reply. Well, the soonest appointment with the endocrinologist is May 1, 2017, therefore I am seeing my primary physician until then. I think I will try the pen first. The concern I had about the pump was malfunction, in addition to not being able to take my baths because I was hooked up to a pump. However you answered a question, I had it is for fast acting insulin. This is all so new to me, I think I will first try the pen, and later when I understand more and feel more confident I will check into that pump that you mentioned. I do like the fact that i can see my reading in real time. I don't know if this is true, but someone on youtube mentioned that without insulin a diabetic 1 could die within 48 hours.
 
#9 ·
A pump doesn't stop you from going swimming or taking a bath. If it's a pump with tubing, you just unplug the tubing first, leaving the little infusion site (which is just a soft fabric patch with a bit of plastic). The other kind, the Omnipod, is a self-contained pod that stays on your skin, and can go in the water.

Thanks for clarifying, I didn't realize you are on Humalog too. I had to wait 2 months to get to see an endo, and I ended up reading "Think Like a Pancreas" which helped me get by until then. Actually those books taught me a bunch more than the endo did, but she's the one with the prescription pad! :devil:

As for how long you can go without insulin, that very much depends on the person. Some type 1's continue to make a tiny bit of insulin forever, and could go a few days. Others who are newly diagnosed can go months, just with very high blood sugar. And yeah, some people would be in the hospital the next day.

It's not an instant thing for most people, you'd notice that you forgot a shot, or if there was a problem with the pump, realize your blood sugar was high, and fix the problem.
 
#10 ·
Being LADA may mean you are still producing some insulin and may make figuring out bolus dosing a little more complicated.

Don't stress yourself out over having no insulin for 48 hours, it is not likely you would be that far away from having some available unless you are living in a very remote location. I know insulin pens come with more than one pen when you get a script for them, not sure how a script for vials comes.

I have to defer to others about any advice on using insulin.
 
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#12 ·
Hi Daytona, I went ahead and checked out that pump you mentioned T:slim I wanted to ask you is yours the G4? I am assuming you still have to give yourself the Long lasting basal insulin either with a pen or needle. What about finger pricks?
the meter does not talk to the t- slim, yet I do like the freedom it seem to bring and it does the calculations for you. Let say, i feel my best at 116, and don't want to go below 90. Can I set it for that amount? I also like the fact that it is touch screen, and like you mentioned you can disconnect for bathing. Do you mind if I ask how long did it take for your insurance to approve the unit? I did not have a good day, but yesterday was so much better, but today, I woke up at 77 spiked at 298 late after noon and night reading of 67. I ate the same meals. I was told by my primary physician to first do a reading, then from there look at the sliding scale to calculate how much insulin to give yourself. For fast acting the physician told me that I have 15 minutes to eat a meal after injecting 4 time daily. If the pump is injecting insulin into your body or checking every 5 minutes, How do you know when are the best times to eat? I am not producing any insulin, in my pancreas. My physician told me that if i should run out, to go immediately to the hospital, and tell them it is a life or death situation. today I also had tingling in my hands when my reading are in the low sixties. I feel the best at 116. I also have blury vision when it is high. The shot does not hurt, but Lantus can burn when injecting at a higher dosage. My physician did mention I could lose 40 lbs with type 1. I am 5 feet 7 inches, and 125lbs. I can't afford to lose that much weight. I was wondering if the pump would prevent the weight loss?
 
#13 · (Edited)
Hi Daytona, I went ahead and checked out that pump you mentioned T:slim I wanted to ask you is yours the G4?
I have the Tandem t:slim X2. I picked that because it is upgradeable. When it can talk with a Dexcom G5 CGM coming later this year, I can just update the software and have the new feature. The Tandem t:slim G4 is an older model that can only talk with a Dexcom G4. All the neat new features, like "hybrid closed loop" where the pump and CGM talk back and forth to manage your blood sugar, will be for the t:slim X2 only.


I am assuming you still have to give yourself the Long lasting basal insulin either with a pen or needle.
Nope! The way all the pumps work is that they give you a small amount of fast acting insulin (for example 0.05U) every 5 minutes instead of a long acting insulin. This is a big improvement over the long acting insulin because many of us need a different amount of insulin during the day/night, or when we exercise. So my pump gives me more insulin in the early morning before I wake up, and then I can tell it to not give me any when I'm exercising. Pretty nice to not have to take ANY shots! :D

What about finger pricks?
Since I have a Dexcom CGM (which I bought separately from the insulin pump), I only test my blood sugar with my meter twice a day, to calibrate the CGM. The next version of the Dexcom sensors will only need calibration once a day, and the new sensors will work with the existing G5 receiver.

the meter does not talk to the t- slim, yet I do like the freedom it seem to bring and it does the calculations for you. Let say, i feel my best at 116, and don't want to go below 90. Can I set it for that amount?
Yeah I'm looking forward to July when the t:slim X2 will be able to read my CGM, so I don't have to enter it in manually. Then in 2018, it should get a feature where it knows when my blood sugar is low, and suspends my insulin. That is something that the Medtronic 670G does already but Tandem is catching up quickly.

On my pump, I set a target blood sugar and it does all its calculations to keep me at that level.

Do you mind if I ask how long did it take for your insurance to approve the unit?
I paid for the insulin pump myself, and my insurance pays for the supplies (cartridge, syringes, infusion sets). I have United Health Care and they only cover Medtronic insulin pumps, which is why I paid for it myself.

Otherwise, how long it takes for approval really depends on how good your doctor is at writing the prescription. I recommend picking the pump you want, and having the pump manufacturer handle your insurance. They will figure everything out and just give you doctor the paperwork to sign, which speeds up the process.


I was told by my primary physician to first do a reading, then from there look at the sliding scale to calculate how much insulin to give yourself.
Sliding scale is not the recommended practice anymore and hasn't been for a long time because it's quite inaccurate. When you read any of those books, they will talk about a few terms instead that help you figure out how much insulin to take:

* insulin sensitivity or correction factor. This is how much insulin it takes to lower your blood sugar by a set amount. I have different settings for this depending on the time of day, because in the morning it need a lot more insulin to fix bad blood sugar
* insulin carb (i:c) ratio. This is how much insulin it takes to handle a set amount of carbs and again is different based on the time of day/meal.

My pump has those programmed into it and it uses those values to figure out how much insulin to give me.

For fast acting the physician told me that I have 15 minutes to eat a meal after injecting 4 time daily. If the pump is injecting insulin into your body or checking every 5 minutes, How do you know when are the best times to eat?
When the pump gives you insulin every 5 minutes, that's for your basal needs and doesn't affect the timing of your meals.

But how long to wait between bolusing and eating depends on a number of things and is very unique per person and per meal. Here are a couple examples from my own life to give you an idea, but the real answer is that if you have a CGM, you need to use it to watch for how quickly insulin starts working, and how long it lasts in various scenarios.

a) I am feeling shaky, my CGM says 80 with an angled down arrow and it's time for dinner. In this case, I eat first, making sure that it's pure carbs without fiber, fat or protein so that it starts working immediately. Then I wait until my blood sugar is over 100 and then I take my dose for the meal and eat the rest.

b) My blood sugar is 180 and the CGM has a straight arrow, meaning it's not changing. I take a combined correction and bolus to cover both the high blood sugar, and the meal. I then wait for my blood sugar to come down a bit, maybe to 120, then eat.

c) I'm going to eat pizza! :devil: I do a split dose of insulin, 1/2 when I start eating and 1/2 2 hours later to handle that pizza digests slowly for me.

I am not producing any insulin, in my pancreas. My physician told me that if i should run out, to go immediately to the hospital, and tell them it is a life or death situation. today I also had tingling in my hands when my reading are in the low sixties. I feel the best at 116. I also have blury vision when it is high. The shot does not hurt, but Lantus can burn when injecting at a higher dosage. My physician did mention I could lose 40 lbs with type 1. I am 5 feet 7 inches, and 125lbs. I can't afford to lose that much weight. I was wondering if the pump would prevent the weight loss?
If you ever run out of insulin (or are getting down to just a week or less), you can go to your pharmacy and they have emergency insulin that they can prescribe to you. Since I have a bad mail order pharmacy (due to insurance) my doctor writes my prescription for more than I need to give me a buffer so I never have to run low while waiting for them to fill it.

Yeah lantus does burn, I don't know of any tricks around that. Lantus isn't used in an insulin pump, so that's one more "plus" in it's favor.

As a type 1, often the weight loss comes from not getting enough insulin. As you get better and figuring out the right amount to take (both daily and for meals), you should regain lost weight and maintain it. So the pump isn't necessary, but if you like the pump, it will help you keep good control.

If you continue to struggle with unwanted weight loss, post back here and I can point you to some good books/chapters on how to gain weight safely.
 
#14 · (Edited)
Hi, Daytona, you just made me smile for the first time, since I left the hospital. You gave me hope of having a normal life again. I enjoy talking to a person who has the pump instead of a sales person trying to sell me one. So you got the new model I see? The fact that it is upgradable is a nice feature. Tomorrow, I will call my insurance company to see if they will pay for the unit, if not I will pay out of pocket for it. I am sure they will pay for the monthly supplies.
How long did it take you to learn how to use it, or feel confident in wearing it?

Sliding scales are inaccurate is an understatement, especially if you compare it to the technology we have today. Yes, that is what I want good control. Today I was down to 51 following the sliding chart. I could barely get off the couch. So I assume you can disconnect from the pump to suspend the insulin at night or when exercising, until suspension is offered with that unit. I have notice that all pumps do have their pros and cons. I was looking at getting the 670G, but it is still new and the price of it is high. My next question is what made you decide upon the Tandem t:slim X2 in place of the other pumps on the market? What sold you on that particular model? One thing I am finding out is being diabetic is expensive. I can see that you are very informed about diabetes . My vision is too blurry to do reading now, and I don’t’ feel stable. My physician wanted me to stay in the hospital longer, but after leaving ICU, and the other floors they placed me on. I finally decided to ask the nurse if I was in the psychiatric ward, due to all the crying and screaming at night. The nurse said “ no, the hospital does not have a psychiatric ward.” I can’t go back to the hospital or in DKA. The nurses and doctors were great at the hospital, but every hour the lab drew my blood. My arms are covered in bruises.
I am just taking one day at a time. I do want to read the book called Think like a pancreas when I can see better. Another question, I had assumed that all diabetics 1 have to tell basal insulin along with the fast acting. Either way the pump can regulate me and I want that. Sometime I am giving myself 7 shots a day, because I have to split up the Basal insulin, it burns and does not last 24 hours for myself. Thanks for taking the time to answer my questions. Perhaps one day I will look back at my old posts and see my progression.
 
#15 ·
Hi, Daytona, you just made me smile for the first time, since I left the hospital. You gave me hope of having a normal life again.
Huzzah! That's good to hear and I'm glad that things are looking a bit more doable. Some days suck, I don't think that ever goes away, but since I got on a pump and CGM, I feel like I have a lot more control over things.


So you got the new model I see? The fact that it is upgradable is a nice feature.
Yeah it was a difficult choice, especially since I could have had some of a Medtronic pump paid for by insurance. Part of my decision was that I was already using a Dexcom CGM and am very happy with it. The Medtronic CGM is not as accurate in general, and the reactions I've heard from others online has been mixed. The 670G sounds really awesome though. But if I wanted a pump that could talk to my Dexcom, the t:slim X2 was closest to getting that feature. I am very lucky that I can afford to pay for these things out of pocket, as my insurance is a turd. I use a FSA (flexible spending account) to help pay for things with pre-tax money. Not sure how much that helps but every bit counts!

My CDE had pumps that I could look at and feel them out too which helped. I liked how small the t:slim was compared to the others. I couldn't use an Omnipod (which is neat, no tubing!) because I use too much insulin per day for it to make sense. Before you get anything, make sure to play with a couple and ask about the trial period, where you can return it within the first few weeks.

The author of "Think Like a Pancreas" has a great site where he talks all about diabetes technology (he even offers 1:1 online help and prerecorded classes).

Insulin Pump Comparisons | Compare Insulin Pumps by Manufacturer

How long did it take you to learn how to use it, or feel confident in wearing it?
I did a lot of "self-training" because I'm a total nerd. So I knew a lot of the basics before it even arrived! I downloaded the tandem simulator on my iphone, which let me make pump profiles, test out how to do a bolus, etc. It is just like the real pump, only displayed on your phone as a demo. I also read "Think Like a Pancreas" and "Pumping Insulin", or at least skimmed the chapters which made sense. I often find with these books that only some stuff clicks me with at first, and then later more stuff is useful, so I keep going back to them.

After my pump arrived, I had to wait for the Tandem trainer to program the pump for me with the settings specified by my endo. She spent nearly 2 hours at my house showing me how to do everything, explaining how to tell if something is wrong and how to fix, and then we ended with her helping me do my first insertion. So I was pumping on day 1.

One thing that really helped me feel comfortable with wearing it was having a good place to put it on me that didn't get tugged on. Tugging on the tubing (like when it fell out of my pocket once) doesn't hurt, but it does make me freak out a bit. :devil: I bought a SPIbelt (small-personal-item belt) which I wear 24/7 under my clothes and keep my pump in. That way when I go to the bathroom, I don't have to worry about taking it out of my pocket, or wondering what to do with the extra tubing when I'm rolling around at night. It all tucks nicely in the pouch.

Some people like the belt, lots of women just shove it in their bra, or clip it between the girls. The trick is to play around and find something that lets you forget that you have one on I think.

I assume you can disconnect from the pump to suspend the insulin at night or when exercising, until suspension is offered with that unit.
All the pumps will let you temporarily stop or reduce your insulin. So you can turn things off entirely while you take it off during a shower. I always tell it to give me only 50% of my usual basal insulin for a few hours before and after I workout, to prevent lows.

The neat feature of the 670G, and soon the X2 as well, is that instead of waiting for you to realize that you should suspend your insulin (because your BG is low), the pump talks to your CGM and decides that you may go low in the next hour, and it turns off your insulin automatically.

. My vision is too blurry to do reading now, and I don’t’ feel stable. My physician wanted me to stay in the hospital longer, but after leaving ICU, and the other floors they placed me on. I finally decided to ask the nurse if I was in the psychiatric ward, due to all the crying and screaming at night. The nurse said “ no, the hospital does not have a psychiatric ward.” I can’t go back to the hospital or in DKA. The nurses and doctors were great at the hospital, but every hour the lab drew my blood. My arms are covered in bruises.
HUG!!! I totally get it. I've been in and out of the ER often and I know just how scary it is. Not just because of what's happening to you, but the general atmosphere just adds to your anxiety. I'm glad that you are managing well enough to steer clear of there.

By the way, when your blood sugar has been high for a while, your vision will be blurry while it gets used to lower/normal blood sugar. I'm not sure how long it takes, but it will settle back down. Just don't get new glasses for a bit, because it will go back to normal.

Sometime I am giving myself 7 shots a day, because I have to split up the Basal insulin, it burns and does not last 24 hours for myself. Thanks for taking the time to answer my questions. Perhaps one day I will look back at my old posts and see my progression.
Yeah, as I got better at injecting, it stopped hurting so darn much but taking 7-10 shots a day was seriously annoying. I kept forgetting my pens in my other purse, or not bolusing before dinner at a restaurant because I didn't want to do it in the bathroom, or just wanted to "feel normal". Sounds silly but I feel more normal now with a pump than the shots because no one needs to know what I'm doing, they just think I'm farting around with my phone.

I sound like I know what's up because I've had diabetes for over 6 years. I've had time to freak out, cry waaaaay too much, give up, try real hard for months, give up again, read those books every one told me to, freak out again, make lots of friends on this forum and others, and slowly .... slowly... figure this stuff out. :D

Never feel weird asking questions. Everyone here wants to help, and if anyone dares to you guff or makes you feel judged, I'll beat them up. :vs_love:
 
#16 ·
This thread is exactly what this community is about - connecting with others and finding the support we all need...
 
#18 ·
Lisa

I should think that a few months on MDI, counting carbs, making corrections, etc., and finding out how your body reacts to both carbs and insulin would be well worth the investment of time and bother.

If you aren't testing before and after meals, during the day, you won't have any idea at all of how well, or not, your body is handling the food you eat. I would greatly recommend that you do the testing during the day and not just in the morning.

Knowledge is power.
 
#20 · (Edited)
I agree, in fact I test myself before meals and two hours after meals. Then before exercise and after exercise. My diet has changed and my way of thinking. I woke up this morning with a reading of 116. Noon reading of 120. I feel good, but I feel that I will take the insulin as needed, I would rather test myself ever hour if needed than take insulin. It is not the needle, it is the way the insulin make me feel. Since I have stopped taking the insulin I no longer feel tingling in my feet and hands. I feel normal again. I have a new found respect for people with diabetes, I am convinced I am not a diabetic inspite of being on this forum. I will post more when I have more testing done, and see my endo.
 
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