Tag Archives: insulin pump

Are We Being Forced to Use New and Improved?

I responded to a tweet earlier that me think about my answer and a need to talk farther about it. A woman asked what was going to happen when diabetics started using the older  less improved insulins? It’s a solid question and I can give an answer at this point because of this exact thing happening to me.

As followers might know, I was asked to try a 670G pump and it did not work out as was hoped. When it was over, I wanted to go back to injecting insulin and my endocrinologist at the time stopped pushing to stay on it and accepted my decision to get off the pump. That’s were our worlds separated.

She talked about me going on to using a newer insulin, Tresiba, as my basal insulin. Now to those who do not know about it, Tresiba is a long acting insulin that by the makers information can last in the body for about 42 hours, about 1 3/4 days. My question is why does it need to last that long if you take it every day? Wouldn’t you slowly build it up, or stack it being the term for this, over time?

My biggest issue was not to be asked, but being placed on it again after its lack of benefit the LAST time I was on it. She had said try a new insulin but we had tried this one before I been placed on the pump to see if it could improve my A1C numbers. I had been given a sample to use to see if it made a change.

I had been on Toujeo for a while and since starting at 24 unit a day was down to 4 units a day as which was still making my levels drop while at work still. Yes I was taking 20 units less in the end as it was dropping my blood sugars too low while at work overnight. My morning levels however where very high. Some of that has to do with me eating to stop the lows and over compensating. The doctor did not understand why I was still dropping with such a small amount in my system. This was not supposed to happen.

When she brought up going to this “new” insulin she wanted to start at 22 units a day. If she had actually looked at my charts, it was in there that I had been down to 4 units of Toujeo and I’m hoping there was some note of using the Tresiba as well. Regardless, I pointed out we had already tried this and did not want to try another 24 hour insulin as it “locked” you into one dose all day. NPH seemed to be a better fit as it was only 12 hours and would let us switch from  lower dose at night to a higher dose in the morning when I needed more help. This made sense to me but apparently not to her.

All kinds of excuses were given, forgetting and going into ketoacidosis being the most pushed fear of hers. I could not help but feel a little uneasy as it seemed she was fighting too hard to stop me from using a much older and most likely less pharma pushed insulin. NPH has been out there for decades as Toujeo and Tresiba are very new, about one year at this point. Back hen I think Toujeo had only been out for a few months and Tresiba was not even through the FDA trials yet.

I found it very hard to ignore the voice in my mind telling me there was something not right with this. After arguing for over a week about it, I grabbed a 4 year old bottle of NPH I had in the fridge from a past prescription and started using it. She was so mad I had done that but immediately got on board and we started making changes to doses and working out how this was going to work.

My point is, why was it so hard for her to get on this new train that would let me follow the pump rates closer? The only thing my mind came up with was kickbacks from big pharma. Give out our insulin and we’ll give you something. Maybe there was nothing to fuel her determination to keep on the pump when it obviously was not working for me and then fight to go back to same insulin that I had such poor performance from that led her to press me for trying the pump, again. But that idea is hard to ignore with all the posts about on Twitter and in the news.

The rising cost of the newer insulins and people going back to older insulins because of this only lead me think this will end in one of two fashions. Either they will raise prices for these older insulins or they will stop producing them altogether to force people to buy the more expensive ones.

The first reason is actually already happening. The cost of the NPH was only about $200 when I started back then. I was forced to switch to Novolin N which is a biosimilar made by Novo Nordisk by my insurance company. It was only a $40 copay at first but became a $65 copay by the time I switched insurance by switching employers. Let’s do the math on that 20% copay. A $40 copay means a price of $200. A $65 copay means a price of about $320. A $120 jump in price in a little over a year. I heard of people on twitter and Facebook switching to keep cost down and look what is already happening to the pricing. There has been no improvement in this insulin in over 30 years. I used NPH in the late 1970s when I first became a diabetic.

Are there kickbacks for doctors to keep people on the newer meds and technology to control diabetes? I don’t know. I’m not a doctor. We will die without these meds and the technology will help us keep tighter controls to avoid later costly complications. I can only tell you what my opinion is, which comes from what I see, hear, and experience. The prices of even much older insulins is going higher fast. Research can’t be used as an excuse since it is so old the research cost has to have been recovered by now. Again, I don’t know but I have think it must have after that length of time. How could it not? It would be a poor business plan to run that cost out too far and risk loosing it due to newer meds that will replace it.

A co-worker once gave me a great piece of advice, the doctor works for you not you for them. If they give a treatment that does not work for you or you know you can’t afford it tell them and work with them to get to a more affordable treatment. I do pay them and quite well I must add. I will listen but they must listen as well. Another doctor once told me that would have to stay off my foot after an injury for about 2 weeks. I simply told him that I did not have any vacation to cover that and would loose my job and insurance if I had to be off that long. He did not look happy but agreed to let me go back to work as long as after work I wore a boot on the foot. I did and work went great. I had already been working on that foot at work for 3 weeks so its not going to make anything worse. lol

The Same Yet Different

I just read a post from a woman who lives in the UK. She is also a diabetic as are many of the people I follow on twitter. Facebook is great for friends and such but twitter lets me find people who are like minded as far as my disease. Well I don’t go looking for them, Twitter finds them for me. I have some here in the States (one is on TWO of the new Dexcom G6 commercials) but quite a few are in the UK as well. I have learned as much from them as fellow diabetics here in the USDA.

The post I read was from a woman who yesterday ran a half marathon (10k) and finished it. Way to go!! Now some not familiar with diabetes may think so what. It’s only a half marathon and she didn’t finish first. Oh my good people, to me it is great that she even tried let alone did finish no matter what place it was.

Why? A diabetic knows the answer to that already, someone not so in touch with the problems of this disease may not. Let’s start with the basics. Diabetes is a disease where your body does not produce insulin to control your sugar levels in the blood. So a diabetic must double as their own pancreas since the one they were born with no longer works like it should. Normal people don’t get this as their body regulates it’s own insulin level. A diabetic has to do this the entire 24 hours of each day. It is a true 24 hour 7 day a week jobs and there are no vacation from this job. Now here is the first in lessons some don’t know. There are actually 2 types of diabetes and although they are both called diabetes they are very different creatures. Type 1 is insulin dependent and type 2 can still make it although not enough or sometimes the wrong chemical makeup, it doesn’t work right. There about 22 million diabetics here in the USA alone and out of those only a 10% section are type 1. That means I am one of about 2.2 million people here in the USA who depend on insulin to live. We do not make it on our own and so must take it several times each day. It is not a pill and though there has been some headway to make it easier, the only way to get it is to inject it through the skin.

“I’ve read that you can also inhale insulin.” There is only one and I do not know what complications it can cause or how effective it is. Most people, I do not know of any on this inhalable insulin, use injection. You can use pumps instead of needles but as some of my former coworkers can attest to, it is not a perfect solution. It also still goes through the skin. I was told years ago (decades really, I’m polishing my cane later) being a hormone insulin would not survive the human digestive tract hence it must be injected. As far as inhaling, I’d be more scared of an infection from that kind of delivery than an injection. In the 40+ plus years the only infection from insulin I’ve had is with a pump cannulas but it was on its 6th day instead of the 3 days recommended by the maker. I had to, sweated the first one off early so to make up I had to reuse the next one or I would have run out.

OK back to task, Type 2 diabetics are people whose body still makes insulin but it either makes not enough or the chemical makeup is not right and it does work as needed. Insulin does not actually control blood sugar but it unlocks the walls of cells so the sugar can get in and let the cell use it for energy. Think of it as a key for the lock on your cell wall door. If there is no key you don’t get in, if you don’t get in there is no power to run the cell and it will die. Type 2 can be controlled by pills or diet or both without needing insulin. Sadly, it can regress to the point where insulin may be needed anyway. My mom and both aunts where like after years with type 2.

Emma uses a pump and just to make things easier I will just say that if you have a hard time programming your universal remote a pump is not any easier and your remote won’t kill you if you screw it up. I don’t know her that well but I can guess from her post she does not run marathons on a daily basis. Here is another issue with diabetes, changing your routine is scary. I am far from a perfect diabetic but I try to eat at the same times and even the same foods on a rotating basis so I know how I react to each food and how many carbs are in each meal. Carbs are how diabetics count and calculate how much insulin they need for the food they eat. Each food has a certain amount of carbs that enter your body at different speeds and as a diabetic you need to be able to know how many are in each food and add them together and then calculate how many units of insulin you need. A pump can do this on its own but you still need to tell it how many carbs you are eating.

Since she was running a marathon her activity level was going to be so much higher than normal for her so she had to try and compensate for this. With a pump you can lower the background insulin you get on a temporary basis so she made the changes.

This where I noticed the biggest difference. She dropped her rate 2 units. Wow! My basal rate (background insulin) was at times only 0.250 units per hour! That equals 1 unit every 4 hours. There was no way I could have dropped it 2 units. Even as low as it was set, it still crashed my sugar level without extra work (running a marathon being as low as it can get on that list) and although it would shut off automatically,  I still needed to eat to bring it back up as it was low for hours after going low.

The other issue I noticed was when she described making corrections for a highs the morning of the race. Every diabetic has a rate to add extra units to prevent a high once it is started. Mine is 1 unit for every 50 points over 200. It used to be 2 unit back then when I was on the pump. She was correcting a 1/2 unit for less than 200. Amazing!

Reading about how she ran her diabetes compared to my treatment brought to mind what I frequently tell other diabetics. Everyone is different and has a different treatment routine. I have been telling people that for years now but I never had actually applied it to myself until reading that post. I had always thought I must have done or been doing something wrong to create this difference. I am me. I am not Molly, I am not Emma, I am not Amy, I am not any of the other diabetics I know.

I am not doing anything wrong I am merely doing things the way that works for me. MY correction rate works for me. My basal rates, well now doses, works for me. My diet works for me. It will not work for anyone else nor should it. I can try a technique I hear from someone but I will also need to test it to see if it will really work for me.

I can stop thinking “Why does this not work for me like others?” We, the other 2.2 million type 1 diabetics, have the same disease and share common problems and issues. Our solutions though are not and should be the same. They are unique to that person. Everyone is different and should follow their won path to control.

Making decisions for me

I just got done posting something along these lines on Facebook. I read a post that struck a cord with me. It was about not making decision to make others happy but to make yourself happy instead. I feel that comment strongly represents my outlook on life currently.

Why? I came to the conclusion a while ago that there is no one out there looking after me but me. So many decision I’ve made in the past have to help others or my workplace out. Can you work this day? Can you help me move this furniture? Can you tow my car/truck? Can you help fix this or that?

Don’t get me wrong, I’ll help out the next guy (or girl) if I can but do not look at me with an evil eye if I say no. I’m not here on earth to make everyone else happy. Be it work, my health, my finances, or anyting else in my world it has to work for me whether others are happy about it or not.

In the past I have been for the most part silent when moved from place to place at work or asked to do extra tasks. In several jobs I have been cross trained in different duties because I pick things up quick. At a lawn mower manufacturer, I ended up cross trained on almost everything but welding. I worked in receiving, shipping, line material handler. parts picking, assmebly, weld parts picking, and was willing to do the other chores that got added over time. The breaking point was when they started to lay us off for months at time instead of only 2 weeks each year. I can not go without that insurance so I found another job and quit.

In my current job, I started as a material handler but was apparently not very good at as I was alwasy getting told all the mistakes I was making but never if I was doing anything right. OK it took me almost 3 years to earn a spot as a machinst but apparently I was not very good  it either. Always heard “you need to work faster” or “do we need to retrain you” so I must not have been very good at it. Funniest part was my coworkers thought I was doing a good job, it stopped there though. I found another position about a year later but even though it was going back the same job description I had before, material handler, I was demoted and had my pay cut but I was happier there so I took the position. Then just a few months ago I was forced into a position I had been cross trained in. When asked when I woud be able to go back to clearing tables I was told it was going to be permenant. Sadest part of it was I really liked clearing the tables. It was hard work, I think that is what I actually liked most about it but no one else seems to.

My solution was to ramp up my search for a new job. I had been looking since I reallized things were not going to get better in the machine shop years ago. I’m giving up 4 1/2 years of seniority and decent vacation but that senority does not seem to mean much since I was the one forced into a position I did not want. I had been told a few times that I was good and people seemed to request me to do these many different things because of that. Now I am stuck in a postion that I am happy to fill in on temp basis but it is not temporary change.

I can’t stop there. Work is not the only place I have made my own decisions which do not always agree with those around me. My healthcare is a big sticking point as well. For many years my now former endocrinologist and I had discussions or maybe even closer to arguements about what my treatment was or where my treatment was going to go. I was talked twice into trying a pump but both times it ended up not going well. She told me just like at work what I was doing wrong all the time but she did not realize I was not a “normal” diabetic. We finally got to that point when after the second pump didn’t work she had me tested and admitted she didn’t know what to do with me. I left her care shortly after as it didn’t seem she was really listneing to me. I had been telling her I was not normal since I first met her. I argued against the pump but after promises were made I agreed. After it failed to stop lows and ended up raising my A1C, we argued about where to go. She wanted to set me up on a med that she apparently forgot she had me try before going back to the pump again. I ended the argement by starting back on the same insulin I had been on before without her complete agreement.

OK, the point I am making is that I am the only one truely looking out for me. Employers will look at what is best for them, doctors on what is best for them, and friends for what is best for them. I don’t fault them too much for it but I can’t just sit there and let them decide my fait as they are not going to live it, I am. Getting my pay cut and placed into a position which I did not want pushes my decision to go elsewhere. The doctor pushing me to try a pump the second time then seeming to fight me getting off it, even though she said she woud support that decision, made me find another doctor.

My opinions are not meant to match anyone else’s as they are for me, not them, and they do not live my life. You can have your opinion as it should fit your life but not anyone else’s. We are all different and have different needs. If I can I will help you out but don’t expect me to surrender control of my life to make yours easier or to agree to your opinion. My decision are made by me for me, not you.

Different Strokes for Different Folks

I read a post from a fellow diabetic this morning and after possibly breaking her site with a lengthy comment, I though why not continue it here on my own blog.  A polite way of describing the people I want to talk about are back seat diabetics or armchair diabetics. These are people who either are not diabetic and think they know what is best for us/me or they are diabetic and think their solution is the absolute cure to this disease so everyone needs to follow their advice.

Molly, at huggingthecactus.com (hope I got that right Molly), was talking about a recent experience she had while out to eat and her sugar dropped. Been there, done that. I loved her approach. It mirrored mine so much, great minds think alike. She used common easily obtainable items to prevent a low.

I have been for years told by my, now former, endocrinologist that I should carry a glucotab bottle or get some of the paste to keep with me for any lows I get. I just laugh. I had tried that years ago and found it very not my style. One, they taste terrible. They are very strong sugar substances that use sour flavors to try and conceal the very sweet  taste. Yes, I used the term TRY. It does not work in my opinion. Second is the low sugar content of each pill/tablet. Each one when I bought them was about 3 grams of sugar and 3 grams of carbs. Duh, sugar is a carb. I would down the entire 10 tabs and still have to get candy from a machine to get back to normal. 30 grams plus to get back to normal.

I currently, like Molly did, use regular soda to boost my sugar level when it gets low. A Mountain Dew has 46 grams of carbs in a 12 oz can. Some days it only stalls my drops instead of reverse it and then at other times it will send me into low earth orbit, well at least my blood sugar.

My point here is there are no two identical people on this planet. Even identical twins are not doing the exact same things at the exact same times hence what may work for one would not work the other. There are about 8 billion people on this planet so even if they all were diabetic, thank God they are not, there would be 8 billion different treatments for lows. Every person is different so every person must find their own fix to each incident. Let’s be honest about it, the same fix does work every time even with the same person. Just go back and re-read the last paragraph.

Molly talked about working out earlier, before her incident, and that brings up another issue, exercise. Everyone reacts differently to it and does it in different amounts and intensities. Please do not tell me I’m correcting it wrong simply because I’m not following my “prescribed” treatment to the letter. I have had 40 plus years learning my body and how it responds to my environment. I can probably tell you what will drop my sugar level or raise it and how fast before I even touch a food or weight.

I tried an insulin pump (twice), one that was supposed to be fully automatic. That means it decided how much basal insulin it was going to give me with no input from me such as having to set a specific basal rate at a specific time. It would read my sugar level and make the changes on the fly. It works great for a lot of people but not for me. My diagnosis as a type 1 diabetic was called into question because of the settings we were using and the way I reacted to it. The results are yes, I am most definitely a type 1 diabetic. You know what the kicker was for getting a C-peptide test (a test of whether your body makes any or enough insulin of its own)? When I was going to start the pump I ran out of Toujeo insulin (basal) and the insurance company did not authorize a refill. I don’t blame them. They just paid for an $11,000 pump. I ended up going for 3 almost 4 weeks without my basal insulin. I can hear the gasps out there. Relax. You really could not tell I wasn’t on any. Sugar level were higher at times but not nearly as high as they should have been.

The pump suspended my insulin for nearly 4 hours (insulin half live was 5 hours) at times and I still had to eat to get it back up. Here’s a trick if you have enough will power, Skittles are like little sugar pills (they taste far better though). First, don’t swallow them as soon as you get them in your mouth. Chew on them until they just don’t seem as sweet. My opinion was it got the sugar into my system much faster. Second don’t eat the whole bag. A small bag from the vending machine has 56 grams of carbs in it. I just did about 3 to 4 of them at a time to slowly get it back up, unless it was crashing hard. They are very easy to scale to my need at the time. That whole bag is like a meal in a bag when referring to the carb count.

Like I started out saying, everyone is different and what work for one person may not work for another. I do listen to others for advice but please don’t expect me to blindly follow your example. I may use part of it or none of it. I listen learn and adapt it to my needs and wants. You should to. I will willingly tell you what I do, have done, or would do but you need to see what if anything actually works for you. I don’t think most people could get by eating 3,400 calories a day without gaining weight. I’ve eaten like this for at least 20 years and not gained (or sadly lost) any more than 5 or 10 pounds in that time.

While I was on the pump the doctor kept telling me I was eating to many carbs. I needed to cut back on them and eat more protein and fats. Hey I’d do it if I wasn’t already cramming cars to stop lows. That 150 gram “magic” carb count number is based off a 1200 or 1500 calorie diet. So at 3400 calories if you do the math, I should be up to about 310 or 320 depending on which base number you use. When I started the pump I was at about 420 carbs a day and had dropped it to about 280 to 290 a day by the end so I actually did cut them down. Using the original numbers, I was under the carb count persentage. She didn’t see it that way. It’s one the reasons I decided to leave her and go another route.

Here’s the basics of this speech. Don’t feel you have to follow the path of another find diabetic bliss. Make your own path, it is the only one YOU can follow. Listen to others who are experienced, be it more or less, with this disease. They may give you an answer or least a clue to help you find your path, just don’t feel obligated to dot the i’s and cross the t’s. Doctor or no doctor, you decide what does or does not work for you. They can look at your Dexcom or Medtronic sensor log but they are seeing only part of the story. You have lived it. Like I said listen but be realistic about how and if it will work. I argued with my former endo about said reading and won the argument, well at least I got her to agree to me trying my idea. A good doctor will listen to their patients as much as the patients should listen to the doctor. Tell them your fears and goals. Tell them why your sugar shot up because 2 hours earlier on that same graph your sugar was at 80 and falling fast. You over corrected. Look for patterns on the graphs. Again you know if you were working hard or chilling in front of the TV. It can affect that graph just as much as what you eat. Blaze your own path in this world, just be smart about it.

First step first

I started a new job this weeks and to say that I was not nervous about it would be a bold faced lie. After my initial experience with my new pump and the adjustment I went through, I was highly nervous about how bad things could get that first week. I’ve been doing research on body fat and its affect on insulin. The reason for this sudden interest is simple. My doctor told me when I first talked to her that they have a negative effect on insulin. Being over weight like I have gotten over the last few years is bad. I’m trying to remember her exact words but its basically was that fat acts like an insulator for insulin. The more of it you have the more insulin you need because of its effects on your absorption of insulin. With this new job I plan to start losing all this extra weight I packed on since I last had a real job that I could work hard at. After leaving the factories to try my hand in human services, read that taking care of developmentally disabled individuals, and then moved into security I found myself slowly getting fat. Yes I should have cut down on my food intake but I had always planned to start exercising more to make up for it. OK well anyway………. Long story short I gained about 20+ lbs. over maybe 2 years. Enough that all my older jeans no long fit. I now am empathetic toward pregnant women who deal with this during the 9 months. OK back to topic now, this excess fat will end up costing me more in insulin. I will keep taking more insulin to do the same work as long as I stay fat. Loose this extra fat and the amount of insulin I need also will drop. Not to mention the fact I will not have to drag around this extra and that extra weight according to the height and weight chart I found on line, I should weigh about 180 lbs. max. Well at 261 lbs. currently I am 81 lbs. overweight, I take issue with the that ideal weight since have been a weight lifter and will be again. Muscle weighs more than fat so I feel that ideal weight should be a reference rather than a rock solid goal. So I have an extra 81 lbs. of fat wrapped around in my body that needs to go. Imagine all the damage it has been doing already. I found an article from Jade Teta who is an integrative physician and author on this subject from the http://www.metaboliceffect.com/science-insulin/ web page. Insulin causes many different effects on the human body and resistance to the insulin he says is not an all or nothing concept. The liver will react one way and the muscle another and to different degrees. Sorry if some of this is hard to understand. I get the basics of this all and am trying to relate it here without complicating the message. From what I read of the article, please read it yourself to get the whole message, when the liver looses its ability to sense and respond to glucose it is the party to create most of the metabolism issues. The resistance is brought on by the massive amounts of insulin given in injections and the bolus amounts although not as much. The pump gives the insulin over a longer time. An inject for me took as little as 3 or 4 second from start of plunger push to end. The pump will deliver he same insulin in a way longer time, in some cases over 1 minute. That big dump of insulin is not given in one shot but over an extended time frame, much better. Score one for the pump! I was told by my doctor that I had over the 36 years of being a diabetic, developed a lack of being able to sense lows and I now wonder if this has anything to do with that issue. In other words I fought long and hard to not get a pump and now that I was kind of led into that decision, I feel that my clod feet syndrome was a bad idea. There is no Dr. or M.D. with his name so I am just calling him Mr. Teta, says that the war between insulin and cortisol, adrenaline, and non adrenaline is what creates biggest problems for metabolic issues. Mr. Teta calls it the key to insulin resistance and also “the most insidious metabolic disturbance of the modern day”. Wow. As I said before the article has a lot of technical terms in it about triglycerides and other chemical names and processes but the under the tab of insulin and fat storage it makes me cringe. Insulin can push your body into storing more sugar as fat than it should. It make sense to me. I said earlier I was into to weight lifting more as a power building than body building but I got bigger regardless. Big arms and legs but one area I always had issues with was first the backs of my arms and then my stomach being fatter than the other parts of me. The reasoning I came to was that these were the areas I was injecting the insulin. In fact once I started in my stomach it quickly became quite visible. Quickly being maybe a year as my arms had been used for better than 20 years to give shots. If I can lower the amount of insulin maybe I can work at getting this fat off also. I just found the key to fixing all this resistance of insulin. Exercise. Plain and simple exercise. Mr. Teta says that muscle contraction is an independent method of moving glucose into the cells and also increases the number of glucose receptor on the surface of the cells. Well Mr. Teta didn’t say that but he referred to a 2010 study from the American Journal of Physiology, Endocrinology and Metabolism that discusses it. It goes on to talk about using resistance training to decrease insulin resistance and increase the body’s ability to store glucose. The growth of faster twitch muscle fibers have the best benefit for insulin and blood sugar control. I am shedding a tear now as I realize the heavy lifting I love to do but had to give up when money was tight was the one things I had been doing that was helping me with my blood sugar control. I can remember at times when I would stop lifting for either medical reasons or just to jump over a stalled workout routine and after just a few days, 4 maybe 5 that my blood sugars would start getting out of whack again. Once I started back up again they would drop right back into place and I felt better quickly again. I’m in almost full tear mode here since I love lifting heavy. It began back in high school and I kept with it  for many years after as well. I have not seen the inside of the weight  room since the beginning of last year, 2012 and can see the effects. I am fatter, weaker and my blood sugars are all over the place. I’m going to end this blog now and go eat breakfast and then this afternoon I will start a workout routine to begin getting back into shape. Seeing where I have been, where I am, and where I want to be it just makes good sense to go back to what I love.