I had my Endocrinologist appointment yesterday... but, wait, let me back up a bit. Friday, I finally had my appointment with the CDE, Becky, at the other practice where I was hooked up to CGMS.
It had been a couple weeks since I was actually "hooked up" on CGMS, but due to some technical difficulties, my earlier appointment was cancelled. Anyway, I actually had the day off, so it was a little less harried and hectic than if I had the appointment on a usual work day. I got to the office on time (Hallelujah!) and was soon brought back by Becky.
Becky took out multiple pages of line graphs and other types of reports. I was pretty amazed at how much data this little sensor collected. However, saying that, I was a little disappointed to hear that, although Becky did notice a few different trends/patterns from the feedback, she said that it doesn't really tell you as much as one might want.
All along I think I knew that. I knew the sensor was only collecting 3 days worth of blood sugar readings, and it's hard to really draw conclusions from that limited data. Plus, fellow diabetics know, that no two days are the same. Each day our blood sugar patterns are completely different. For me, things can be very unpredictable. But I guess I was hoping that it would provide more information than it actually did.
So yes, it would've been nice if it told me exactly what to do and how to set all my bolus and basal rates, but I guess I should be glad that it did provide a little information on how to perfect things a little more. There were two main things it showed.
One...I need to take my meal bolus not with my meal, but perhaps a half hour prior to when I eat. From the recordings, there were very visible spikes after the period of time where I would eat. Ok, everyone has spikes (even non-diabetics) after eating, but mine were, well, rather large. Becky suggested I take my bolus 20-30 min before I eat, to give the insulin a head start (provided that I am not low to start with). It sounds like a reasonable solution, and I have been trying to do this since Friday and so far, so good :) - so I'm happy about that.
The other thing is exercise. Seems that I am doing the whole temporary basal wrong. In the past, I kind of set the temp basal just as I was starting to exercise. Stupid, stupid, stupid...it's no wonder that I'd drop low. By setting it just prior to working out, I was still being affected by my regular basal rate and not the temp. basal. D'OH! :( .
The last two days, I've tried setting it earlier... the goal is about an hour earlier. Monday I did just that. Tuesday, I kind of forgot and it was only about 25 min earlier, but it seemed to work anyway. I left the gym at a level around 150 both days. Then last night, I did it again about an hour before and I ended up 82 after my workout- Hey, I'll take it! :) Plus, did I mention that I didn't spike nearly as high post dinner time on both Tuesday and Wednesday night. I only went up to 159 on Tuesday and I was 177 last night. I know that may still sound a little elevated, but, trust me, these numbers are great improvements from what I am used to. I should have been doing this a long time ago and saved myself some aggravation- guess hindsight is always 20/20.
One additional thing happened at that appointment with Becky. I brought up Symlin. I wanted to see her reaction and whether or not she thought it might be feasible for me to start on it. Well, to my surprise, she told me that she already has some of her other patients on it and has even tried it herself. What surprised me even more was that she said that I could try it if I would like. After pressing my Endo about this and hearing how right now isn't the right "time " to try it repeatedly, I nearly lost it when I heard this. I, enthusiastically, told her I would really like to try it. So she managed to scramble up a trial vial and wrote me a script.
I was pretty excited, but I knew that there are risks and side effects involved. Becky told me that not only did she experience "wicked lows" in her own words, but also was so nauseous from the drug that she vomited. Also, she said that Symlin does not take care of all spikes in blood sugar. Although blood sugars after meals were better, there still were sudden rise around the 4 hr mark.
No, this wasn't the news I wanted to hear, but I knew that there's always some negatives to things. The lows and the nausea, I was aware of- I heard that that was a side effect, but I had never heard that there could still be problems with hyperglycemia. This was the main thing I was trying to avoid and, in a way, it seems inescapable.
However, Becky did make a suggestion on how to possibly get around that. She said to break up your meal bolus. If you have 60 grams of carbs for dinner, in general, you would take half of that on Symlin. And to prevent the spike, she said it might be wise to take a unit with dinner and then the other two an hour or so later. So I took that advice with me and her other suggestions and left feeling pretty good about how things turned out.
Skip ahead to Monday night...I decided to hold off on the Symlin until then ( I didn't want those nasty side effects to ruin my weekend) and I followed Becky's' advice. I made myself a big salad with lite dressing, a turkey cutlet, a med. roasted sweet potato, and roasted veggies. I estimated that this was about 60 grams carb total. I took my one unit meal bolus and then took my Symlin by injection. I finish dinner, and realize that I'm feeling like I am high. WTF? At about the 2 hr post meal mark, I test. To my horror :( , I ring in at 355? How is that right? This definitely wasn't the results I was anticipating.
I'm not sure what happened there. My immediate reaction is that the Symlin just didn't work, but that may not really be the case. It could be anything. My hunch is that my carbohydrate estimate was off (anyone know how many carbs are in asparagus and zucchini?), which then impacts how much insulin I took, and lead to being too high. Also, when I injected, I don't think injected deep enough... I noticed a little bubble in the place I injected. I'm sure that impacts absorption as well.
It may not matter, at least not right now. I put Symlin back on HOLD for the time being. I had my appointment with my Endo. on Tuesday and he strongly feels that I need to correct my basal rates. To him, the pump, in essence, is like an artificial pancreas, and if programmed right, you should be able to achieve good control. Looks like I'll be back to testing my basal rates again (UGH). He even threatened to check up on me, if I didn't get crackin'.
It makes sense. I do need to make adjustments to these rates and the best way is by doing these tests. Then once things are better sorted out, Dr. P (my Endo.) let me know that he was not against me trying Symlin out. I guess that does give me incentive to get it done and over with, but I actually could do it anyway, regardless of his approval on it. I have the trial bottle and a 'script for refills. Believe me, it is tempting for me to keep going on the Symlin, especially since I still have night time problems with blood sugar and my appetite. But I told him I would wait, so I am sticking to my word.
One other thing about my appointment with Dr. P. My weight went up again :( :( :(. It doesn't make sense to me. I have been eating pretty much the same and continuing to work out like a fiend, and yet I still have gained weight? Grrr.... The only thing I know it could possibly be, is all of the adjustments I've been doing with my insulin (adjustments my Endo, nor Becky know about). I've raised my insulin a good amount and though I've noticed my blood sugar has come down significantly, it may be even running a bit too low during the day...which of course, has led me to having to treat. I do feel like I'm feeding my insulin and that isn't really good for the weight control side of things.
I have since switched back to my prior basal rates. Now, it's just a matter of doing the actual testing... I hate to say it, but I'm already putting it off. Each day, I say tomorrow I'm going to do it...and each day, I put if off. I know I need to just do it and get it over with. It will make my doctor happy and it will make me happyto get it done. Perhaps tonight...
It had been a couple weeks since I was actually "hooked up" on CGMS, but due to some technical difficulties, my earlier appointment was cancelled. Anyway, I actually had the day off, so it was a little less harried and hectic than if I had the appointment on a usual work day. I got to the office on time (Hallelujah!) and was soon brought back by Becky.
Becky took out multiple pages of line graphs and other types of reports. I was pretty amazed at how much data this little sensor collected. However, saying that, I was a little disappointed to hear that, although Becky did notice a few different trends/patterns from the feedback, she said that it doesn't really tell you as much as one might want.
All along I think I knew that. I knew the sensor was only collecting 3 days worth of blood sugar readings, and it's hard to really draw conclusions from that limited data. Plus, fellow diabetics know, that no two days are the same. Each day our blood sugar patterns are completely different. For me, things can be very unpredictable. But I guess I was hoping that it would provide more information than it actually did.
So yes, it would've been nice if it told me exactly what to do and how to set all my bolus and basal rates, but I guess I should be glad that it did provide a little information on how to perfect things a little more. There were two main things it showed.
One...I need to take my meal bolus not with my meal, but perhaps a half hour prior to when I eat. From the recordings, there were very visible spikes after the period of time where I would eat. Ok, everyone has spikes (even non-diabetics) after eating, but mine were, well, rather large. Becky suggested I take my bolus 20-30 min before I eat, to give the insulin a head start (provided that I am not low to start with). It sounds like a reasonable solution, and I have been trying to do this since Friday and so far, so good :) - so I'm happy about that.
The other thing is exercise. Seems that I am doing the whole temporary basal wrong. In the past, I kind of set the temp basal just as I was starting to exercise. Stupid, stupid, stupid...it's no wonder that I'd drop low. By setting it just prior to working out, I was still being affected by my regular basal rate and not the temp. basal. D'OH! :( .
The last two days, I've tried setting it earlier... the goal is about an hour earlier. Monday I did just that. Tuesday, I kind of forgot and it was only about 25 min earlier, but it seemed to work anyway. I left the gym at a level around 150 both days. Then last night, I did it again about an hour before and I ended up 82 after my workout- Hey, I'll take it! :) Plus, did I mention that I didn't spike nearly as high post dinner time on both Tuesday and Wednesday night. I only went up to 159 on Tuesday and I was 177 last night. I know that may still sound a little elevated, but, trust me, these numbers are great improvements from what I am used to. I should have been doing this a long time ago and saved myself some aggravation- guess hindsight is always 20/20.
One additional thing happened at that appointment with Becky. I brought up Symlin. I wanted to see her reaction and whether or not she thought it might be feasible for me to start on it. Well, to my surprise, she told me that she already has some of her other patients on it and has even tried it herself. What surprised me even more was that she said that I could try it if I would like. After pressing my Endo about this and hearing how right now isn't the right "time " to try it repeatedly, I nearly lost it when I heard this. I, enthusiastically, told her I would really like to try it. So she managed to scramble up a trial vial and wrote me a script.
I was pretty excited, but I knew that there are risks and side effects involved. Becky told me that not only did she experience "wicked lows" in her own words, but also was so nauseous from the drug that she vomited. Also, she said that Symlin does not take care of all spikes in blood sugar. Although blood sugars after meals were better, there still were sudden rise around the 4 hr mark.
No, this wasn't the news I wanted to hear, but I knew that there's always some negatives to things. The lows and the nausea, I was aware of- I heard that that was a side effect, but I had never heard that there could still be problems with hyperglycemia. This was the main thing I was trying to avoid and, in a way, it seems inescapable.
However, Becky did make a suggestion on how to possibly get around that. She said to break up your meal bolus. If you have 60 grams of carbs for dinner, in general, you would take half of that on Symlin. And to prevent the spike, she said it might be wise to take a unit with dinner and then the other two an hour or so later. So I took that advice with me and her other suggestions and left feeling pretty good about how things turned out.
Skip ahead to Monday night...I decided to hold off on the Symlin until then ( I didn't want those nasty side effects to ruin my weekend) and I followed Becky's' advice. I made myself a big salad with lite dressing, a turkey cutlet, a med. roasted sweet potato, and roasted veggies. I estimated that this was about 60 grams carb total. I took my one unit meal bolus and then took my Symlin by injection. I finish dinner, and realize that I'm feeling like I am high. WTF? At about the 2 hr post meal mark, I test. To my horror :( , I ring in at 355? How is that right? This definitely wasn't the results I was anticipating.
I'm not sure what happened there. My immediate reaction is that the Symlin just didn't work, but that may not really be the case. It could be anything. My hunch is that my carbohydrate estimate was off (anyone know how many carbs are in asparagus and zucchini?), which then impacts how much insulin I took, and lead to being too high. Also, when I injected, I don't think injected deep enough... I noticed a little bubble in the place I injected. I'm sure that impacts absorption as well.
It may not matter, at least not right now. I put Symlin back on HOLD for the time being. I had my appointment with my Endo. on Tuesday and he strongly feels that I need to correct my basal rates. To him, the pump, in essence, is like an artificial pancreas, and if programmed right, you should be able to achieve good control. Looks like I'll be back to testing my basal rates again (UGH). He even threatened to check up on me, if I didn't get crackin'.
It makes sense. I do need to make adjustments to these rates and the best way is by doing these tests. Then once things are better sorted out, Dr. P (my Endo.) let me know that he was not against me trying Symlin out. I guess that does give me incentive to get it done and over with, but I actually could do it anyway, regardless of his approval on it. I have the trial bottle and a 'script for refills. Believe me, it is tempting for me to keep going on the Symlin, especially since I still have night time problems with blood sugar and my appetite. But I told him I would wait, so I am sticking to my word.
One other thing about my appointment with Dr. P. My weight went up again :( :( :(. It doesn't make sense to me. I have been eating pretty much the same and continuing to work out like a fiend, and yet I still have gained weight? Grrr.... The only thing I know it could possibly be, is all of the adjustments I've been doing with my insulin (adjustments my Endo, nor Becky know about). I've raised my insulin a good amount and though I've noticed my blood sugar has come down significantly, it may be even running a bit too low during the day...which of course, has led me to having to treat. I do feel like I'm feeding my insulin and that isn't really good for the weight control side of things.
I have since switched back to my prior basal rates. Now, it's just a matter of doing the actual testing... I hate to say it, but I'm already putting it off. Each day, I say tomorrow I'm going to do it...and each day, I put if off. I know I need to just do it and get it over with. It will make my doctor happy and it will make me happyto get it done. Perhaps tonight...
posted by Andrea at
12:23 PM
3 Comments:
Wow, you said a mouthful in this post. Sounds like you have an open-minded endo.
Regarding the Symlin, did she suggest titrating up the full amount gradually or did u just take a big dose to start? Did you really just get a sample vial and not a complete starter kit? I think that would be odd, indeed.
Starting something like this should be done with great care, and not taken lightly.
Glad you figured that thing out about the temp basal...and good luck with the bolus adjustments!!
Andrea I too had the same problem with symilin and ended up not using it but I am not sure if I did not give it a chance .. I cut my dose in half and took the 2.5 amount the doctor told me about had no upset stomatch and no wonderful blood sugar that I expected. My doctor at the time told me that I had not gotten to the dose that was right for me but I to kept gaining weight.. so I am not sure I made it to 7 units of symilin and once I tryed 10 units I got the neasea and dizziness then I ditched it.. but don't give up your trying so hard I recognize your fustration as I had it was not until I got my insulin regulated and actually ended up on less basal and higher bolus before the weight came off well the start of my weight. your newly DX right ? so give your self sometime and you're doing everything you can so pat yourself on the back too. HUGS
JB :)
I know, I know... I tend to get a bit wordy and ramble on. I guess when I get on a roll, it's hard for me to stop- LOL :)
I'm continuing to do well with my after dinner blood sugar. It's funny b/c last night, I went low after exercise, despite my temp. basal set 1 hr prior. I left the gym at 48, which kind of shocked me- maybe b/c I didn't do my typical gym routine. Anyway, I thought ok, now I'm sure I'll be over 200 later on tonight after dinner. Well...I was shocked once again. I tested in at 124. I was ecstatic! :o) That's the lowest I've been after dinner in a long time. I don't know how to explain it, but it made me happy. :)
As for the meal boluses- taking them 1/2 hr, actually more like 20 min, before meals seems to have helped somewhat. Though, yesterday, I was high at lunch... I guess that's still bound to happen now and then.
Becky suggested I work slowly up to the full dose- starting at 2.5 units and then gradually work up. She did give me a starter kit, but had the vial separately in the fridge, so I assumed it was one of their trial supplies.
I'm hoping once things get settled with my basal rates and all the wonderful testing (NOT)... I'll be able to start back up on the Symlin and see if it helps to perfect things a little more.
Thanks so much for your response...I'll keep you posted :)
J-
I guess being that I only took Symlin for a day, I really can't expect too much from it on the first day. I also think I injected to shallowly so I don't think it was absorbed as it would have, if I had injected properly.
I have to wait to return to Symlin. My Endo wants me to figure out all my basal (and bolus) rates. I do want to try it... a lot of people have been having such good results, but i know my Endo is right. It's best we get my other rates worked out before I throw another thing into the mix.
I'm surprised you experienced weight gain on it... I thought it was thought to help with satiety and weight loss. Hmmm. Actually, in a way, if it causes low blood sugars and you had to keep treating them...then, I guess that would make sense. But you were having problems with highs still, right? Hmmm, I don't know...that's weird.
It sounds like you did get things sorted out a bit anyway, so that's what really counts. It's good you were able to reduce your basal and that that helped your weight loss. That's awesome. :)
I'm not exactly newly dx'ed (it will be 4 yrs in April), but in ways I feel like I was just dx'ed yesterday. I still have that need to find out all I can about this illness- I guess I feel the more you know about it, the better equipped you are to deal with everything.
Thanks for the kind message. Hope things continue to go well for you :)
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