What You CAN Do With Gastroparesis

If you read my Managing Blood Sugar With Gastroparesis post, you might remember me mentioning the woman that went to the Mayo Clinic that was told by an endocrinologist there that she would never be able to get her A1c below 7.  I knew that was not true because I had done that.  Even though I have managed to keep my A1c in the 5s, I am constantly looking for new ways to try and improve the things that I am doing.

Having a Dexcom has really been a huge help because I am able to set alarms to warn me when my blood sugar starts to go high or when it starts to go low.  I especially like the fact that I can set the Dexcom high alarm for 120 (the lowest you could set the Navigator high alarm was 140).  There were plenty of times pre-CGMS that I would literally go from 80 to 180 in one hour when my food would start to digest.  With the Dexcom, I am able to get insulin working before I get too high so I am not having as many highs.

The next thing I added was getting an Animas Ping at the end of June.  Although I have had some struggles with the pump, it has really helped me to fine tune my basal rates.  In the beginning, I was reluctant to try the extended bolus feature (combo bolus on the Ping). Then Cheri in the Animas Group  on TuDiabetes told me about Danny’s TAGger’s Group .  In the beginning, I wasn’t sure that would work, but I decided to give it a try and am now hooked.

Danny also started the Flatliner’s Club  to share CGMS successes and also failures.  That helps makes diabetes fun!  Although I had several nice 3 hour graphs before joining the group, I never had a 6 hour graph.  With the changes I was making with TAG, my pump and my Dexcom, I have been working at trying to get some longer graphs.

Last week, I did some basal testing  and knew that I needed to slightly adjust my evening basal rate.  I also decided to drop my daily carb total from 86 grams per day to 38 per day to see if I could make my line a little flatter without as many carbs.  Prior to learning TAG, eating carbs was actually easier than eating protein with gastroparesis, but I still tried to limit my carbs.  Saturday night, I bumped my evening basal up another notch because my blood sugar started going up, but when I looked at my graph yesterday morning, I was pretty happy with my 24 hour graph.  I wanted to wait until after 12:30 to take a picture because Saturday morning, I had a bad set so my blood sugar shot up and I wanted to wait until after that part dropped off my graph.  I ended up going low and because I was outside of my 70 and 120 lines on the Dexcom, they don’t qualify for a Flatliner’s 24 hour graph, but I was still pretty proud and wanted to share the results here.

I also did a “cheat” picture and changed my high range to 140 and my low range to 60 just to see what it looked like:

This is the Hourly Report from Dexcom.  The bottom half is Saturday afternoon into Saturday night and then after midnight to noon Sunday is on the top half.  My high for that period was 139 Saturday night.  I had two lows – the first about 1:30 PM on Saturday, which was an over-correction for the bad site and another Sunday morning from too much going up and down the stairs trying to un-decorate from Christmas.  I was very happy with an overall average of 94 and a standard deviation of 17 though.  I wish I knew the name of the endork at the Mayo Clinic to send a copy of this to!

I especially want to thank everyone in the DOC for helping me.  I know that I had to put the work in to make it possible, but I would not have been able to do it without all the valuable tips that I have received from the DOC.  My next goal is to have that 24 hour graph without any little blips outside those lines!

Pumping, TAG and Gastroparesis

Yesterday, I wrote about the Flatliners Club and shared some pictures.  When I was taking pictures last week to share for that article, I thought I would also share what a good gastroparesis day is for me.  It is far from perfect, but if I can avoid the extremes, that is a good day.

One of the first big improvements for me with gastroparesis was learning to split my mealtime shots into multiple shots.  That helped some of the crashing after eating and the highs later once your food finally started to digest.  Doing that, I was able to start seeing A1cs in the 5s.

The next big improvement was getting a CGMS – thank you Mary!  Although one reason for getting it was because I am hypounaware, I also wanted it for help with the gastroparesis.  I am able to set alarms to warn me when my blood sugar starts going up.  I especially like the Dexcom because you can set your high alarm to alert you at 120.  With gastroparesis, the sooner you can correct once your blood sugar starts going up, the better.  A lot of people with normal stomachs will pre-bolus for their meals.  Waiting until your blood sugar is high to take insulin with gastroparesis is like someone eating a food that they know will cause their blood sugar to climb rapidly, but not take their insulin until after they eat.  The Dexcom has been a great help in helping me catch my blood sugar before it gets too high.

In June, I started pumping with the Animas Ping.  Before getting it, I really did not think that it would make that much of a difference in how I bolused for my meals. I wanted it to help with dawn phenomenon.  I liked the idea of being able to have more basal rates that I could have using Levemir.  I liked the idea of being able to scroll thru the pump and find out exactly when I took insulin without worrying because I did not write it down. 

Even after starting the pump, I continued to bolus for meals the way I was on MDI.  I would space out my boluses based on when my blood sugar was starting to go up.  I was afraid to try the extended bolus feature (combo on the Ping).  Then I started using TAG and I have seen an improvement in my blood sugar.   If I had tried to use the combo bolus based on what I was using with MDI, it never would have worked.  Calculating the protein and fat for the extended bolus has made a big difference.  You can read more about TAG here:  https://kellywpa.wordpress.com/2010/11/10/total-available-glucose-tag-2/

I shared this picture from last Friday with yesterday’s flatliner post and called it my Rocky Mountain:

 

It probably looks worse than what it is, but that was actually not too bad of a day.  I did two screen shots from my Dexcom for the 24-hour period that picture represented.  I wanted to show the Hourly Trend Chart for that 24 hour period.  You can’t get everything on one screen so I did two different screen shots.  With the Dex software, it is the numbers that are different on the second screen, not the chart at the top.  If you click on the pictures, they will get bigger and the numbers will be easier to see.

 

My average for the day was 104.  I was having a very good sensor day and every time that I checked with my meter, I was only a couple points different between the Dexcom and my meter so the 104 is a pretty good reflection of my average for the day.  Although 104 sounds high to some people, if that was my average every day, that converts to a 5.3 A1c. 

What I am most happy with is my standard deviation was 24.  Yes, I know people do much better than that, but for having gastroparesis, that is a good number.  If you look at the hourly time periods, 16 of those 24 hours were below 10. 

My high for the day was 161 and my low was 39.  Actually, my meter logged me in at 44 so I did not technically hit the 30s. 

Although I still have more lows than what I want, they have improved and having the Dexcom gives me more confidence in fighting the highs.  It is very challenging when you don’t know when your food will digest, but with work and technology, it is possible to have more good readings than bad.  I have come a long from where I was before!

The Flatliners Club

Danny on TuDiabetes always comes up with the neatest ideas.  He recently started the Flatliners Club for CGMS users.  Most of us work hard at trying to keep our BS in check.  As most of us also realize, that can be a challenge to do because there are so many things besides food that throw our BS off.  Danny started the Flatliners Club to share our successes and hopefully, some tips on how we did it. 

The idea is to have a fairly flat-line on your CGMS without going above or below the lines that mark your target.  You post a picture of your CGMS screen showing your flatline.  He has the discussions grouped by period of time shown on the CGMS.  Danny even started a discussion “Rocky Mountains” for the times we go to the other extreme.  I could post lots of those kinds of pics!

You can check out the group here:

http://www.tudiabetes.org/group/flatlinersclub

I have found since starting the TAG system (Danny also started that group), my lines are getting much better.  Although my three hour trends are looking much better, I have not been able to make it up to the next notch of six hours. 

This picture was from last Thursday when the power went out just as I was fixing lunch.  Even with stuff going wrong, my BS stayed pretty good.  The gap at the beginning was from my being in the shower and then I went downstairs in a hurry without my Dex.

This picture was also from Thursday, but taken about 11 PM that night.  I expected my lines to be totally messed up that night.  My lunch was messed up and I had a hamburger at almost 3 after my power came back on.  I was still hungry when I ate my normal dinner, so I made another hamburger.  Because of the gastroparesis, things like hamburger can be just as challenging as pizza is for some people.  It is not good for people with gastroparesis to eat protein like that with dinner because of the slow digestion.   Although I would have been happier if my BS was not running so close to 120 all evening, it still was a flatline.  This picture technically would not qualify for the Flatliners Club because I have my high range set at 120 and I went over the line right before this picture was taken.  It was actually the Dexcom alerting me that my BS was high that made me notice that I had flatlined.   Regardless of whether or not it fits the criteria of the Flatliners Club, I thought it was picture worthy!

 

This next one was taken Friday about an hour after lunch.  I came close to going over the line but managed to stay under.

 

You would think since I posted 3 pictures totaling 9 hours in a 24 hour period that most of that period was like that.  Well, guess again, I am in the Rocky Mountain club also.

Total Available Glucose (TAG)

Total Available Glucose. or TAG – I first read about TAG on TuDiabetes.  Danny on TuDiabetes started a group for TAGgers, that you can check out at the link below and read more about it there.

http://www.tudiabetes.org/group/tagers

The idea behind TAG is that besides bolusing for your carbs, you also bolus a percentage for the fat and protein that you consume and then spread that bolus out using the dual wave or extended bolus (or combo on Animas pumps) feature on your pump.  There are some people doing MDI that belong to the group so don’t think that you can’t use this system if you don’t have a pump.  Whether you use MDI or a pump, you definitely need a calculator if you want to use this system! 

I am putting this post under the gastroparesis section on my blog because although I am just now starting to use it, I really think it is going to help with some of the gastroparesis issues.  Since fat really slows down the digestion process for people with gastroparesis, it makes sense to have some insulin working to help when food finally starts to digest.  Up until this last week, I have been doing with my pump what I was doing with MDI but I can definitely see an improvement using TAG.

On the TuDiabetes TAGgers group, Danny started a thread with some sample spreadsheets.  Here is the link to that thread:

http://www.tudiabetes.org/group/tagers/forum/topics/tag-spreadsheets

Danny used 58% for protein and 10% for fat.  In that same thread, Cheri posted her spreadsheet and she uses 40% for protein and 10% for fat.  Both of them made wallet size cards to carry.  Cheri also had a food bank that she listed her favorite foods and listed the carbs, protein and fat.  Cheri is the one that mentioned TAG to me in the Animas group on TuDiabetes.   You will have to play around with what percentages work for you and you will also have to play around with what the amount of time you want to extend your bolus for.  It looks like 3 hours seems to be an average place to start – customize that to suit your needs.

Here is also a link to the thread with some meal samples that people posted:

http://www.tudiabetes.org/group/tagers/forum/topics/tag-your-meal-examples

This is what I normally eat for lunch:

	Carbs	Protein	Fat
Peanut Butter, 2 tbsp	6.0	7.0	17.0
Hamburger, 3 oz 90% lean	0.0	16.5	5.1
Cheese	2.0	4.0	5.0
Mayo	0.0	0.0	10.0
Pears	26.5	0.0	0.0
Total	34.5	27.5	37.1
		x 40%	x 10%
		11.0	3.7
Carb Bolus	34.5
TAG Bolus			14.7

 

My carb ratio for lunch is 1:12 so I would take 2.85 units of insulin up front to cover the carbs in my lunch.  There are 27.5 grams of protein, so if I multiply that by 40%, I have 11 grams that I need to cover for protein.  There are 37.1 grams of fat, so I multiply that by 10% to come up with 3.7 grams that need to be covered for fat.  I then add the 11 grams from the protein and the 3.7 grams of fat to come up with 14.7 grams that need to be covered for my extended bolus.  Since my carb ratio is 1:12 for lunch, I need an additional 1.25 units of insulin that I extend over a 3 hour period.  Again, your percents and time periods might vary.  You will have to play with what works for you!

Monday afternoon, I ended up going low and had to cancel the extended bolus before it finished.  My BS was 71 when I started and according to my Dexcom, heading south anyway. That probably was not a good day to play with trying this.  Yesterday was a better day and I hung out in the 80s and 90s all afternoon until about 5 then started going up.  I am thinking of trying Danny’s 58% and then spreading it over 4 hours instead of 3.  I would have 19.66 grams to cover instead of 14.7.  My theory in changing the percent in addition to the length of time is that I did good for almost 5 hours.   I don’t want to take less insulin during that period by extending the time and I don’t really want to take more.  If I add the extra insulin, I should extend the time so I am getting that extra insulin over a longer timeframe.

I am using it for both lunch & dinner also, but lunch is my hardest to digest meal and also has the largest amount of protein and fat so I figure I will concentrate on getting that one right first. 

TAG has made a difference in the little bit of time that I have been playing with it.  I wish I had actually tried it back when I first joined the group!

 We only have a few more days to reach 100,000 views on the Big Blue Test video.  Even if you have watched it several times, please watch it again! 

http://www.youtube.com/watch?v=nkLHgK94Z0E