I had a horrible doctor visit today, need to vent!

Type 1 and LADA
61

You raise a really good point. There’s a lot of variation about when people are supposed to correct. Some of it depends on their insulin sensitivity factor (ISF), how prone they are to hypos, etc. There is no one-size-fits-all approach with diabetes because there are just so many factors that have to be taken into consideration. I generally don’t correct until I’m over 160 and have no insulin on board (IOB). I am fairly insulin sensitive (ISF=40), very active, and have battled hypoglycemia unawareness in the past. I was able to “get rid” of my hypo unawareness by basically running high for 2 years, but I don’t want it to come back.

Also, endos seem to be becoming increasingly worried about the negative effects of low blood sugars (such as their associated risk for cardiovascular disease) and the understanding that having slightly high blood sugars may not be as bad as widely fluctuating blood sugars. For example, there is some evidence that suggests you’re better off staying at a steady 180 than swinging from 200 down to 60 and back up again. Of course, research also shows that organ damage begins to occur whenever blood sugar stays above 140 for a prolonged period of time.

And this is why diabetes is so FREAKING frustrating!

62

Sparkysmom, I promised that I would look up basal testing for people that still have some insulin production. I couldn’t really find anything on it other than on one of the links that I am going to give you on basal testing, Gary Scheiner commented that someone producing some of their own insulin would need a lower rate than someone who is not. I would think that if he did not think someone producing some of their own insulin shouldn’t be doing basal testing, he would have said that. I looked in Using Insulin and John Walsh did not mention types at all in his discussion of basal testing.

The idea behind basal testing is that you should be able to take your basal insulin (for you, that is Lantus) and be able to skip meals and still have your BS stay fairly stable. Your BS should not go up or down by more than 30 points during the test period – if you start at 100, you should not go above 130 or below 70. John Walsh actually has a little bit tighter range than Gary Scheiner and John says not to go up more than 15 points – for his rules, you would not go above 115 or below 70.

You want to make sure fast acting insulin is out of your system – in your case, you don’t have any, but if you add some, that is good to remember in the future. You don’t want food digesting so you should wait about 4 hours after you eat before you start. You also don’t want to drink anything with caffeine in that can make your BS go up. You are basically stuck with water during the period of the test!

Both John & Gary say that the most important period is overnight. Depending on where my problem is, I start the test at different times. Since this would be your first time doing the test, I would follow the Lantus around the clock in 8 hour shifts. If you take your Lantus at 10 PM, start there. If you take it at 10 AM, then start there. You could do 8 hours one day, then pick up where you left off the next time.

If you go outside the ranges, then you would need to stop the test (especially if you have to treat the low!). Always give yourself a couple days in between any insulin adjustments before retesting.

For the overnight part, I usually set my alarm every hour, but I have heard some people say they will do even hours one night & odd hours another night.

The top 2 links were articles written by Gary Scheiner (Think Like a Pancreas). The bottom one is one that I wrote for my blog.

http://www.integrateddiabetes.com/p_basaltest.shtml

http://www.diatribe.us/issues/13/learning-curve.php

http://kellywpa.wordpress.com/2010/12/30/basal-testing/

63

My endo and I assume that I still have some residual insulin production and the Joslin pump program had me do basal testing as the first step in setting up my pump.

Maurie

64

Thanks Maurie! That is good to know.

65

I worry about DD eventually having to go to an adult endo as pedi endos are so knowledgeable about Type 1 and I’m not sure even the adult endos are. You definitely need a good endocrinologist, your instincts are spot on there. Where do the Type 1s in your family go for medical care? You could get a recommendation from their endos. You will need bloodwork and a lot of tests so they can diagnose you properly. Makes total sense to me. I would also be adjusting my medication as much as possible myself (downward if experiencing lows) and not follow the nurse’s advice until I could see a new doctor. Lows in the 50s for a fasting blood sugar… you need to adjust the insulin for that. I see no reason why Type 2s or Type 1.5s should not have access to insulin pump therapy if they are on insulin. You need a doctor that will stand up for you and give the override necessary to the insurance company so you can get a preauthorization. Whatever your type, until your CPeptide is gone, you will have to fight for it more than a Type 1, which is not fair. But Type 2s do pump and no reason why you shouldn’t if that is your choice, whatever your type. Good luck finding an endo. Be sure to interview the new endo first before committing.

66

Hi Jan! My father was a T1, and he died in 1970 at the age of 27 from I believe was insulin shock based on what my mother remembers. His sister died a few years back and lived a few hours away. So in those cases that does not help me find the right doctor. I believe the rest of the family members are classified as type 2, and they all live in a different part of the state. The kicker is that I live in the capital city and you would THINK it would be very easy to find a good endo. We even the University of Mississippi Medical Center here, a teaching hospital. I talked with someone there and she explained that they have two clinics, one with endos who treat strictly T1s, and the other with internists who treat T2. I had to laugh at that, because there is so much evidence that the two types intermingle and some people have characteristics of both.

I have actually been fairly stable the past few days since I adjusted that basal dosage down. I have been eating pretty low carb, so I have not had bad spikes that I know of. I definitely have not had any dangerous lows, thankfully.

I am just anxious to get my doctor’s advice on whether or not pumping would allow me to take less insulin, which in turn would help me get some weight off.

67

Kelly, a million thanks for taking the time to post this information for me. I need to take some type tomorrow and read all this and take notes so that I can talk with my PCP about it.

I went to the NP from hell (LOL), I have been on the 40 units of Lantus at night and 1.8 Victoza and 1,000 mg of metformin. I have been trying diligently to test at the same times every day (fasting morning, 2 hours after meals, and bedtime) so that my readings are not scattered all over the place. I have been charting everything I have been eating and any and all exercise I do. According to my online glucose log, my average BG for the past 6 days have been 118. I am actually really thrilled about it. I am stil pretty hungry, but it is a little bit better since I have not had any more hypo moments.

I am hoping somebody can answer for me why I would suddenly need 40 units less insulin in a month’s time when there is no discernible reason ( no weight loss, no drastic dietary changes, etc.) I am interested in whether or not the doctor thinks I have less insulin resistance (which would be great, by the way) and if she thinks I could get by with even less insulin on a pump or a basal/bolus with meals therapy.

I am very interested in the basal testing. Looks like I need to do some homework tomorrow! Thank you again! I will keep you posted about my doctor visit.

68

I HATE that artificial distinction between the types, because while many people are clearly the one or the other, some people fall between the cracks. I am another one who has some characteristics of both, although after helping treat me for a coma last year, my CDE was very firm about calling me Type 1 because of treatment issues – I totally didn’t respond to Type 2 protocols (and not for the first time). So, even though I have never actually been tested for antibodies, for my own safety, I will tell all medical folks that I’m Type 1.

Your problem is that too many of them are going to eyeball you and decide that you are Type 2, just because of your age and appearance. WRONG!!! You are going to have to be very strong to advocate for yourself!

As far as pumping, it can go either way. Some people just take it as a license to eat anything and as much as they want, and others learn to manage their eating and exercise so that they take less. Pumping itself CAN reduce your dosage, but I don’t know about losing weight. What helped me lose weight (didn’t have all that much to take off) and improve my lipid profile was to limit carbs. I don’t go as strictly as Dr. Bernstein recommends, but I aim for 60g a day, and none from the low-nutrition carbs like bread, pasta, potatoes, rice, and cereal. Occasionally from high-carb veggies like corn and peas, and a little bit of milk daily. I’m never going to look like a teenager again (I’m 63), but my weight falls in a healthy range for my age. (Yes, older people SHOULD weigh more than teenagers, and have a larger waist circumference too.)

Wishing you luck in finding a medical team that can work WITH you and not AGAINST you!!! :slight_smile:

69

I am pretty sure that conventional wisdom is that pumping can cause some people to GAIN weight, but I believe that is from observing type 1 folks who start pumping. And I personally think some of that “weight gain” is the result of better control (i.e., not going high all the time, which can cause weight loss). But that’s just my opinion.

Like Natalie says below, the artificial distinctions between the types is becoming more and more of an issue. Too many people on here seem to fall between the cracks, and I hate the fact that insurance payments are so heavily based on what bucket a doctor decides to put you in, especially when so many docs are putting people in buckets by simply looking at them.

70

Worry you should. I have had a hell of a time dealing with “adult” endos. Pediatric endos really only see Type 1, but adult endos primarily see type 2. Even when they know you’re a type 1, they still sometimes treat you like a type 2, or at least think in “type 2” terms. I understand that their thinking is skewed this way because of what they see on a daily basis, but it’s frustrating when you’re the patient. I am very thankful my current endo actually listens to me and “allows” me to educate her a bit about what I’ve experienced as a type 1. That is why I’ve stayed with her. I’d rather a doc admit that they just don’t know something (which she does) than make up theories and preach them as gospel about why something is happening (which too many endos do).

71

One of the reasons that I went on the pump was to gain weight! My basic control is about the same but I no longer have to shave a couple of carbs here and there to better match a dose to the nearest half unit. It also frees me up because I can do mini-corrections for mini mistakes.

Maurie

72

Yes, I have read about people who have lost weight on the pump, and those who gained weight on the pump. I can see both sides, especially if one uses the pump in order to eat unhealthy and give themselves extra insulin to compensate for too many carbs, etc.



I guess I was just thinking and/or wondering about the possiblity of a pump allowing me to take less insulin overall, thereby making it easier for me to lose weight, since that is my biggest issue right now. I can tell you that when I started on the Lantus and kept having to bump the dosage up and up, to an all-time high of 75 units (before I was taking Victoza), it was virtually impossible to lose weight. I gained weight, it was awful. With the Victoza, I was quickly able to decrease the Lantus to 60 units and then stabilized there until this latest shift, where I now am taking 40 units. I’m not complaining, I’m just curious to know what is going on. I need to study the Victoza some more and see if being on that medication has contributed to me being able to lower the insulin dosage.



I don’t want to sound like I am pushing fo be on a pump because I am not. If I can control my numbers and health with a basal insulin, victoza, and metformin that is okay, but I just get the feeling that I am constantly going to have to adjust my medicine and stay on top of things. I can’t get complacent and just trust everything the doctor or nurse tells me, because they only see me for 15 minutes every 3 months or so, they don’t live with me day and and day out.

73

:slight_smile:

74

UPDATE 08/17/11



I had my doctor’s visit today, and she was APPALLED at the way the NP treated me. She said that she absolutely thought it was appropriate to run the blood work in order to see where I stand now. They drew the blood right there in the clinic and sent it off and I hope to hear back from them soon.



I am go greatful that she listened to me! She said she personally believes that I am a mixture of T1 and T2 and that I definitely have characteristics of both. She said that if I wish to see a different doctor for my diabetes, she would gladly refer me to an endo that she is personal friends with, who is one of the best in the state.



So I’ll just wait and see what happens! It was so nice to actually listened to!

75

I am glad that this is starting to look more positive for you now! Here’s hoping that the test results will help put more missing pieces into the puzzle.

76

I am really happy for you Sparkysmom! It is always nice to have a doctor that actually listens to you. It makes a huge difference.

Did you talk to her about adding some fast acting insulin in?

77

I forgot to answer this yesteday - I was like a zombie yesterday! I know that there is actually an insulin resistance diet - what it is, I have no clue. You said no drastic diet changes, but maybe there was something that changed enough to alter the insulin resistance.

Did the change start after the big heat wave started? A lot of times, we need less insulin in the summer because of heat. Sometimes mine changes when it first gets warm, but I noticed a change this year when the temps skyrocketed.

It shouldn’t be this way, but I do notice a difference in insulin when I start a new pen. I don’t know if you use vials or pens, but maybe you had some bad stuff and that could have been why you needed more. I always try to pay attention now when I start a new pen, especially a new box.

78

Type “1.5’s” (I prefer the term LADA as we are not halfway between anything) ARE Type 1’s and have no more difficulty getting a pump than any other Type 1.

79

We discussed the fast acting insulin, but we both agreed that we would wait for the test results since my numbers are good right now.

I am not sure how long it will take to get the test results back.

80

As long as your numbers are good. If you don’t hear from them by next Wed, I would call them. The antibody one might take a couple days.