Diabetic with no pancreas

Hi Crickard70
I have been a type 1 diabetic for 65 years. I'm not really sure if I have a pancreas or not but it does not work. I take 2 injections of Lantus per day plus 10 units of Novolog at 8am.. noon and 6 pm. I have highs in the morning and very lows whenever?? So Doctor decided to give me two Lantus injections per day.... insulin only last 8 to 12 hours. I take 14 units of Lantus at 8am and 14 units of Lantus at 11pm. Type one in my case, I believe was caused from a very very bad case of strep throat when I was 6 years old. No antibiotics given back then.

I had a phone appointment today and they changed my doses, she basically said I have to play with the units depending on how much I eat. Have they ever considered the pump for you? They told me not sure.

I wanted to join @drlundeen in his support of the pump (I use a tandem). I avoided it for a long time--since multiple injections of regular + a split dose of a long lasting insulin kept me in adequate-but not that good- control. Once I got it did take quite a while to get used to--but the ability to give very small increments of insulin very discretely--and the automatic adjustments that a pump integrated with the dexcom system makes have significantly evened out my highs and lows. It does make me feel better
I also wanted to shout out to Cheryl @cehunt57. I also have been diabetic for 50+ years now. I wondered if you and (drlundeen) also have experienced issues with the scar tissue secondary to years of injections. When I initially tried the pump I used a silicone canula--and it crimped and sent me right into ketoacidosis. I now use a steel canula--which is usually fine--but sometimes a site won't work or will stop working--sending my blood sugars into the stratosphere. In fact-I recently tried the Omnipod 5--but since it only comes with a silicone canula I found that it only worked on my arm (where I always wear the Dexcom due to scar tissue on my abdomen) and I went back to the Tandem. I sometimes feel that I am running out of territory for all my devices. I'm sorry to interject another question into an existing conversation--but was curious if you had experienced some of the same issues (I'm new to this list)

PT52,
What really stood out in your post was the amount of Novolog you take at 10 units. Is that 10 units three times a day (30 units/day) or a total of 10 units for the day? Novolog is a fast acting insulin and is dosed by either the amount of food (carbs) you will be eating or for a correction bolus to bring a high reading down. Generally 1 unit of insulin for every 15 carbs. Ex: A slice of bread is around 15 carbs so 1 unit of insulin would be administered for a slice of bread or 2 units for two slices of bread. And 1 unit of insulin will reduce a glucose reading by about 50 points. If a finger stick says you are at 165, a 1 unit of Novolog will bring it down to 115. Check with your doctor before taking my general doses as gospel. We are all different. Some "fine tuning" of the Lantus could help with your morning highs. Readings higher in the mornings is quite common due to the dawn phenomenon in which your body is getting ready for the day and raising glucose levels. Good luck.

mcsnail,
I guess I am fortunate that I don't seem to have much scar tissue. I've heard that scar tissue isn't much of a result from using the Dexcom because you are not putting anything foreign through that sensor whereas an infusion set is used for administering the insulin. Nonetheless I have experienced, as you so aptly called it, "Sending my blood sugars into the stratosphere". Usually due to an infusion set that has pulled out, has gotten kinked somehow, or suddenly the insulin stops absorbing for I don't know why.
I place my Dexcom on the central part of my abdomen, in an arc around the navel due to it being always "in line of sight" with the Tandem pump and my phone. I do rotate infusion sites to different areas and have been using sites more on the far sides of my stomach to give the other areas a breather. I tried an infusion set on the outside of my thighs but seemed the absorption wasn't very consistent due to the action of walking causing more blood flow in the area or so I assume.
In dealing with the bad infusion set site and going crazy high I first check that the Dexcom sensor is accurate with a finger stick and write that down. Next I check if the pump is working by disconnecting from the infusion set and pumping out 1/10 of a unit and look for the drop at the end of the tubing. Pump has never failed me in that test. I then put in a higher infusion of insulin via the pump to see if the Dexcom readings level off or start coming down after a half hour. I will again do a finger stick to verify if is coming down or if rising. Keeping in mind the sensor lags the finger stick reading by 15 minutes or so. If still rising, swap out the infusion set. At that point either make some corrections input through the pump or I may use a needle and make a correction. One can't count on the pump to make an accurate correction because it thinks there is insulin on board when there either isn't any on board or what's there isn't working. Worst when it happens at night. One finds out what shows are on early morning tv. The few times it has happened I can't say that the "phantom" insulin has come back to haunt me. Again trusting my Dexcom will alarm if I start going low.
Hopefully others will chime in on how to handle your specific problem. Hang in there.

Thank you so much for responding! I don't think that the Dexcom caused any scarring--but I had a lot of problems with it when i wore it on my abdomen because of the scarring caused by all those injections through the decades (I probably made this much worse by injecting through my clothes when I wanted to stay where I was and be discrete). I was interested that you also have absorption issues with your pump. Have those issues gotten any worse with age--or do they seem like something that just goes along with pump use? I also use the methods you mention (finger sticks, checking for drops, sometimes using a needle for a correction). The phantom insulin (great phrase!) does sometimes come back to haunt me--or as I tend to put it -bite me in the butt-lowering my normal insulin needs by absorbing very slowly over the next half day or so. I also have had my sleep interrupted by an occlusion alarm or mysterious highs--and have spent too much time with late night or early morning tv while waiting to see how things are going. Still--I am much more stable on the pump and it usually works very well. I recall that I used to have mysterious highs that might have been caused by absorption issues when I just used injections--and had fewer ways to zero in on the problem. All those injections were shots in the dark (so to speak).

Regarding scarring and absorption when using insulin I think it might be helpful to review the basics. These principles apply whether vials & syringes, prefilled pen cartridges or insulin pumps are used.
The first thing would be to use a new fresh needle each time. It is surprising how dull & worn a needle gets after just one use. With a pump this problem is automatically resolved if the device (pod or whatever) is changed per the prescribed directions. The cannula is always fresh.
The second thing is to rotate the site. It is a bad idea to have the needles or cannulas going into the same spot repeatedly. Early on I remember there being a card with little holes punched in it that could be placed on the skin to use as a guide of where to inject. I think the idea was to help the patient get in the practice of rotating and recording where the injection site was.
Along with rotating the site is the possibility of trying different body parts. Most of us have been taught to use the abdomen for best absorption but thighs and upper arms could be considered. This should be checked and approved by the provider or a diabetes educator. Years ago (30 - 40ish) I had worn out my thighs & upper arms. I was scared of using my abdomen. My provider taught my husband to inject the back of my upper arms and even a few areas of my back (flanks).
These principles apply to other pokey things too such as using CGM’s (sensors) and glucometers (lancets). Use fresh sticks and rotate the sites.
Last but not least is if you are using devices that need to stay in place for a time such as CGM sensors or pump infusion sets pick areas that won’t have clothing interference such as waist bands, belts, straps etc. For example I place the CGM sensor above my waistline in the upper right or left quadrant of my abdomen. I put the insulin pump pod below my waistline (same side right or left as the sensor. Once everything is in place overpatches placed on top. This is really helpful when it is hot and humid causing perspiration. It is useful for bathing, showering & even swimming.

My sister is having major issues with scar tissue on her lower abdomen where she uses the insulin infusion piece. It is always kinking up and then she doesn't get the insulin and that results in her sugar getting out of control. She sweats severely because of other medical issues so placing the fusion disk somewhere else is out of the question. Her sugar right now is rising and she's upset. What can she possibly do to ensure she gets the insulin? She wears an insulin pump.

Hi Crickard70
It's interesting that you think your type one was caused by strep throat. I became a type one at 78 about 10 years after a ruptured appendix that wasn't treated until I was nearly dead! Could that be the cause?

I apologize for not replying sooner. As far as absorption issues getting worse I would say minimally so. I use larger areas of the abdomen even just below the belt line. If you have someone to assist you, more on the sides of the stomach and upper part of the buttocks are good places. Also the thighs more so to the inside can be used. I had rapid absorption in the thighs years ago but I was way more active then when I worked. I can usually get 3+ days to an infusion set and maybe a bit more. Guess I'm just lucky in that regard. Early on I never did more than 2 needle injections per day. No fast acting at all so I was less of a pin cushion. But hindsight being 20-20, I wasn't in control as good as I should have been. Hang in there.