Frustrated at Endo!! (long...lol)
Type 1 for 30 years:
About a month or so ago, I had my first visit with an endo, who's office is 2.5 hours from here after wearing a continuous glucose monitor for 3 days. He said I have a few choices:
1. Go on the insulin pump.
2. Try U-500, since I was taking about 200 units of insulin (Lantus and Novolog) a day and my morning sugars are ALWAYS high, but they were improving little by little each time I added a little more Lantus before bed.
3. Try U-500 and Symlin, which supposedly you inject with a pen when you take your insulin shots and it's supposed to help with weightloss because it slows digestion, making you feel fuller. He actually compared it to weightloss surgery, telling me if I started the Symlin I may not need to resort to surgery. Come to find out, many people on Symlin lose little if nothing, so it's not even comparable to WLS. Besides, come to find out, my insurance won't cover it.
Originally I said I didn't want the pump. I have had it mentioned to me numerous times over the years and I just didn't want to be bothered, it seemed so time consuming, though really, I didn't know much about it at all. I guess I'm sort of set in my ways when it comes to some things, which often times comes back to bite me in the A**!
Recently trying to change that! So on to the next suggestion.
U-500...I decided to try it. It's a very concentrated insulin, 5 units of regular U-100 insulin would equal 1 unit of U-500, though the insulin doesn't start working until much later than my Novolog and it lasts longer. I was taking 45 units of Novolog in the morning, 10-15 at lunch, and 28 at dinner. 70 units of Lantus at bedtime. This had slowly increased from 60 in a year, and from 50 the year before. The endo started me on 10, 10, and 10 units, breakfast, lunch and dinner. This made absolutely NO sense to me considering what my dosages were on Novolog. And no Lantus? I was worried about bottoming out in the middle of the night because my afternoons and evenings always seem to run on the lower side of things, and I'd be increasing the amt (if you figure multiplying by 5) for my lunch and dinner doses. I worrying about my mornings being super high without Lantus as well. I was right. One morning I had a 511! I was working with the CDE's on this and their advice was to take it down to 10-10-8, which did nothing to help me with the fasting BG levels, OR the lows. They had a conference and thought if I got rid of the lows in the afternoon/night, I would be fine in the morning because all morning highs seemed to be after the afternoon and evening lows, so they thought my liver was just producing more glucose to deal with that. Wrong. I suspected the dawn phenomenon.
I decided that I was going to figure this out on my own. I went to 12 at breakfast, lunch was determined by my sugars usually 5 to 6 units, and dinner 5-6. I added Lantus, and only needed 30 to wake up with BS under 120. Recently, although I've been eating the same, the morning sugars have spiked back to the 300's again. Last night I gave myself 5 units before dinner with a 78 and ate about 1 1/2 cups of noodles, chicken and snowpeas. An hour later I was 38, drank juice and had 2 graham crackers and PB and in 1/2 hour I could feel myself dropping again, more juice, and 45 min later I had a 36. More graham crackers and PB AND juice. Then 1 hour later a 24!! My fiance had to give me a glucagon shot, which I don't even remember! Was worried about Lantus last night, so just gave myself 20 instead of the usual 30 I had been taking and woke up with a 386! Grrrr...
Back to the pump option: I have researched it a lot the last week and hearing some great info from a fellow Type 1 on this board. I didn't even realize that there was a basal rate that could help me out throughout the night, as well as an alarm that goes off when you are approaching a low or a high. What has always been a prob in the past is bottoming out around 4 a.m., especially if I didn't have a snack before bed...I've ended up in the ER a few times in the middle of the night after waking up to EMT's in my bedroom. UGH. I am really annoyed with myself for being so oblivious in the past.
After last night's episode I said, forget this U-500 and started back on my Novolog. I called the Endo's office the other day and asked what I needed to do to go on a pump, and which type they recommended so I could read about it. Talked to his nurse and she said just to let them know and they will can Medtronic, who will come to my house and teach me how to use it. Ok fine, I read up on it, as well as talked to my friend who uses one. Called them yesterday and said I was ready to start. Receptionist calls me back and says my endo said I need to make an appt for November and write down everything I eat for 2 days and check my BG 4 times a day. I said, "Ok well you tell me what to do about my U-500 in the meantime because (yada yada yada) and I've had it! Your CDE's are NO help, I tried to figure this out on my own and I thought I did and then everything changed. I am eating and eating to stay normal, so the food log, which I have been keeping for 2 weeks ordered by my NUT for WLS, is NOT what I would usually eat if I wasn't low all afternoon/night, and half the time I'm skipping breakfast because of my highs in the AM. I have been checking my sugar AT LEAST 6 times a day. When I was checking once a day a month ago he was willing to put me on one, so I don't know why, since I've been trying to do everything right I would need to wait any longer. Can I fax my food logs and sugars?" She said ok, gave me the fax #. I am planning to log my food all weekend and fax them all of it, as well as a letter to my Endo on Monday. I have a feeling that he will barely read my letter though, so somehow I need to make it SHORT and to the point! lol I'm thinking about calling back the best CDE I have talked to first (very understanding) and seeing if she will put a good word in for me/convince him that now is the time. I REALLY would like to be on a pump and trained and doing well with it before surgery so I can just rely on my basal rates when I won't be eating much post-op. Hopefully I can get results here.
Ok everyone! Thanks for letting me vent. Any input would be much appreciated!!
About a month or so ago, I had my first visit with an endo, who's office is 2.5 hours from here after wearing a continuous glucose monitor for 3 days. He said I have a few choices:
1. Go on the insulin pump.
2. Try U-500, since I was taking about 200 units of insulin (Lantus and Novolog) a day and my morning sugars are ALWAYS high, but they were improving little by little each time I added a little more Lantus before bed.
3. Try U-500 and Symlin, which supposedly you inject with a pen when you take your insulin shots and it's supposed to help with weightloss because it slows digestion, making you feel fuller. He actually compared it to weightloss surgery, telling me if I started the Symlin I may not need to resort to surgery. Come to find out, many people on Symlin lose little if nothing, so it's not even comparable to WLS. Besides, come to find out, my insurance won't cover it.
Originally I said I didn't want the pump. I have had it mentioned to me numerous times over the years and I just didn't want to be bothered, it seemed so time consuming, though really, I didn't know much about it at all. I guess I'm sort of set in my ways when it comes to some things, which often times comes back to bite me in the A**!
Recently trying to change that! So on to the next suggestion.U-500...I decided to try it. It's a very concentrated insulin, 5 units of regular U-100 insulin would equal 1 unit of U-500, though the insulin doesn't start working until much later than my Novolog and it lasts longer. I was taking 45 units of Novolog in the morning, 10-15 at lunch, and 28 at dinner. 70 units of Lantus at bedtime. This had slowly increased from 60 in a year, and from 50 the year before. The endo started me on 10, 10, and 10 units, breakfast, lunch and dinner. This made absolutely NO sense to me considering what my dosages were on Novolog. And no Lantus? I was worried about bottoming out in the middle of the night because my afternoons and evenings always seem to run on the lower side of things, and I'd be increasing the amt (if you figure multiplying by 5) for my lunch and dinner doses. I worrying about my mornings being super high without Lantus as well. I was right. One morning I had a 511! I was working with the CDE's on this and their advice was to take it down to 10-10-8, which did nothing to help me with the fasting BG levels, OR the lows. They had a conference and thought if I got rid of the lows in the afternoon/night, I would be fine in the morning because all morning highs seemed to be after the afternoon and evening lows, so they thought my liver was just producing more glucose to deal with that. Wrong. I suspected the dawn phenomenon.
I decided that I was going to figure this out on my own. I went to 12 at breakfast, lunch was determined by my sugars usually 5 to 6 units, and dinner 5-6. I added Lantus, and only needed 30 to wake up with BS under 120. Recently, although I've been eating the same, the morning sugars have spiked back to the 300's again. Last night I gave myself 5 units before dinner with a 78 and ate about 1 1/2 cups of noodles, chicken and snowpeas. An hour later I was 38, drank juice and had 2 graham crackers and PB and in 1/2 hour I could feel myself dropping again, more juice, and 45 min later I had a 36. More graham crackers and PB AND juice. Then 1 hour later a 24!! My fiance had to give me a glucagon shot, which I don't even remember! Was worried about Lantus last night, so just gave myself 20 instead of the usual 30 I had been taking and woke up with a 386! Grrrr...
Back to the pump option: I have researched it a lot the last week and hearing some great info from a fellow Type 1 on this board. I didn't even realize that there was a basal rate that could help me out throughout the night, as well as an alarm that goes off when you are approaching a low or a high. What has always been a prob in the past is bottoming out around 4 a.m., especially if I didn't have a snack before bed...I've ended up in the ER a few times in the middle of the night after waking up to EMT's in my bedroom. UGH. I am really annoyed with myself for being so oblivious in the past.
After last night's episode I said, forget this U-500 and started back on my Novolog. I called the Endo's office the other day and asked what I needed to do to go on a pump, and which type they recommended so I could read about it. Talked to his nurse and she said just to let them know and they will can Medtronic, who will come to my house and teach me how to use it. Ok fine, I read up on it, as well as talked to my friend who uses one. Called them yesterday and said I was ready to start. Receptionist calls me back and says my endo said I need to make an appt for November and write down everything I eat for 2 days and check my BG 4 times a day. I said, "Ok well you tell me what to do about my U-500 in the meantime because (yada yada yada) and I've had it! Your CDE's are NO help, I tried to figure this out on my own and I thought I did and then everything changed. I am eating and eating to stay normal, so the food log, which I have been keeping for 2 weeks ordered by my NUT for WLS, is NOT what I would usually eat if I wasn't low all afternoon/night, and half the time I'm skipping breakfast because of my highs in the AM. I have been checking my sugar AT LEAST 6 times a day. When I was checking once a day a month ago he was willing to put me on one, so I don't know why, since I've been trying to do everything right I would need to wait any longer. Can I fax my food logs and sugars?" She said ok, gave me the fax #. I am planning to log my food all weekend and fax them all of it, as well as a letter to my Endo on Monday. I have a feeling that he will barely read my letter though, so somehow I need to make it SHORT and to the point! lol I'm thinking about calling back the best CDE I have talked to first (very understanding) and seeing if she will put a good word in for me/convince him that now is the time. I REALLY would like to be on a pump and trained and doing well with it before surgery so I can just rely on my basal rates when I won't be eating much post-op. Hopefully I can get results here.
Ok everyone! Thanks for letting me vent. Any input would be much appreciated!!
Oh my!!!! You need to get on a pump asap! I have Type 1 and have been on a pump for 22yrs. Best thing I ever did. If you call Medtronic they will help you make it work to get the pump. If you have problems feel free to let me know and I will find some help for you.
Keep me informed. And good luck,
Keep me informed. And good luck,
Moving on to better health
I am on the pump and it helped me reduce my insulin as my food intake decreased and I lost weight on the pre-surgery protein shake diet and the post surgery full liquids diet with very few mild lows (between 59-69) which only required 4 gm glucose to correct because no large amount of active insulin in my body. When not eating carbs, insulin is basal, and blood sugars stablize without large swings up or down. When on low carbs, most of insulin still basal and can then take bolus insulin to exactly match carbs (although things such as stress, illness, and exercise can affect how much insulin you need).
My surgeon was so concerned about hypoglycemia he initially wanted me to go off the pump at the beginning of my pre-op diet. However, the pump was the perfect tool to deal with changing needs for insulin and I stayed on it with great success. I am still on it as I am only 10 days post op and still need some insulin. My blood sugars are practically normal with no big swings up or down.
I have had diabetes 22+ years and on the pump 14+ years.
My surgeon was so concerned about hypoglycemia he initially wanted me to go off the pump at the beginning of my pre-op diet. However, the pump was the perfect tool to deal with changing needs for insulin and I stayed on it with great success. I am still on it as I am only 10 days post op and still need some insulin. My blood sugars are practically normal with no big swings up or down.
I have had diabetes 22+ years and on the pump 14+ years.
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