Endo and PA Issues

Type 1 and LADA
1

This is probably long and drawn out.. but I would appreciate feedback if anyone has anything to add.

So, ever since I went to see the endocrinologist and the physician's assistant, I am thinking more and more that I do not need to go to that office anymore.

First, the day after my appointment I called and asked if I could decrease my I:C ratio because the 1:20 was sending it sky high. The PA basically wound up telling me I was micromanaging and not to worry so much.

The CDE that I am seeing used to work at the same endo office and knows this PA. I told the CDE about what happened, and I said maybe the PA was having a bad day but it made me feel really bad when she suggested that I was micromanaging. My CDE told me that the PA's heart was probably in the right place, basically. So I decided to just let things simmer before making a decision.

The second incident occurred a week and a half later when I sent her my BG numbers. She actually e-mailed back and told me the following: "You are testing a lot and may want to reduce it a little. Be careful with over testing. I know you are curious but you don't want to burn out
with testing." I was really shocked by that, but let it be. I was testing on average 9-10 times a day; a couple days I did more than that when I was paranoid about my sugar dropping too low. Well, I just ignored that comment and let it be.

She has been asking me when I am going to make my pump appointment off on. I've tried to schedule it several times, but whoever was at the front desk the first time I tried had no idea what I was talking about. This week after I e-mailed her my numbers, she asked me yet again. I e-mailed her back and told her that I could not make an appointment because of my schedule- I am working 85 hours a week for 4 out of the next 6 weeks and the two weeks I could potentially go, they do not have any appointments.

I don't know why she keeps pushing me to make the appointment when they are booked solid for a month and a half.

She e-mailed me back with this "Sound like you are a little busy for the pump. So best to give it a little bit more time." I'm sorry, but that came off rude to me too. I keep thinking maybe she is just not a very good people person, but these interactions have totally turned me off of going back to that endo and PA.

I told the CDE I am seeing the first day that I am probably a little too intense and she responded immediately with "That's OK, I am too." And every interaction with her has been positive and helpful. She is very supportive and does not speak negatively to me about things; instead she is informative. The CDE does set some people up with pumps; but she told me on my last visit to go through the process at the endo because they are better set up for it.

I just don't want to. Is it unreasonable to ask my CDE if she would please go through the process with me because I am not wanting to go back to that endo office? It is the only endo office in the whole region, and quite frankly not worth it to me to keep going..

2

Definitely worth asking the CDE. The worst that can happen is she'll say no. I expect she says you're micromanaging because she's not used to people like us, if you know what I mean LOL. She's maybe afraid you'll burn out - there seems to be a pervasive attitude that no one can maintain good management for any length of time.

You know yourself, you know your body, do what you know is right for you.

3

How long have you had T1? I only ask because I really only use my endo to keep my pump scripts up to date. My PCP writes my insulin scrips. I find that I am a much better judge of my control than any doctor. I know my body and my way of dealing with things, so I can do a pretty good job. My A1C last week was 5.8, and my standard deviation is about 28, so I know I am on the right track. I adjust my basals (carefully), my I:C, etc. quite often, because things change so much. Even the warm weather we are having this week impacts my control. Oh, and I test 8 to 10 times per day on a good day--sometimes a lot more if I am having problems.

I had a really snotty PA once at my endos office and refused to deal with her. I told the doctor that I did not like the way she treated me (like a child, asking all kinds of silly, meaningless questions and implicating problems that do not exist) and he should assign me to someone else or take care of my needs himself. He did after that. I was amazed.

I find it is important to stand up for myself with doctors. I also find that they respect me for that, so it is a win win all the way around.

4

Thanks. I’ll ask the CDE. The PA I’ve been seeing has a son with type 1. I guess I was expecting her to be more helpful instead of… Almost condescending?

5

I was diagnosed February 10th. I was attempting to adjust things on my own before I even saw the endo. I tried to respect the PA’s knowledge base by asking her what to do when the carb ratio she gave was ineffective… and that apparently didn’tgo over well.

The CDE has been much better about helping me, including giving me handouts and copies of articles to read that she normally gives to the medical residents about adjusting doses…

I sort of feel like this is my body and I’ll micromanage it if I please.

6

I'm not even sure about who is in what role at my endo's office, and whether the person I email or talk to on the phone is a CDE or a PA or a nurse or what. I know they are slow and like to tell them "oh, I already did that" on the (few) occasions they've made suggestions. There's a bigger, glitzier clinic in the town next door, although it's on the wrong side of my town from my office for me to be really motivated to move but sometimes, particularly during "insurance reboot season" every spring, when I think I ought to move to the bigger place.

I don't take "vibes" from staff personally, sometimes the PA may be doing what the doc or administrator tells her to do to? "don't make pump install appointments except at such-and-such a time as I don't want it to throw off whatever other elements of my schedule...", which makes the PA come across as more of a hard-■■■ than they may be? To me, I'd interpret "give it a little more time" as a bureaucrats way of saying "look, these are when we do these, if you can't make it, we can't help you". I'd probably find another clinic although, if the paperwork's all done, it may be more annoying to switch? Still, sort of "stock" reference to "burnout" seems a bit cheesy. If I were hearing that, I'd probably consider shopping around. I am SO lazy though!

I'd figure that if you were a vet, you'd be able to install it yourself though? Two of my high school buddies have a 3 year old who was dx'ed a couple of years ago and she's a vet and is very sharp. I like her notes in my copy of TLAP a lot!

I'd rather have appointments in the afternoon but have only been able to get one when something "interesting" (which, of course, it's my goal to avoid...) has happened, like once in the 3 years I've been there.

7

Everyone comes to terms with their condition in different ways. Often, you will be diagnosed and your endo and doctors initially do essentially everything for you. They make all the adjustments. Often you wouldn't even be introduced to carb counting right away, you would just be given a fixed dose of insulin to take at every meal. And only over time does the patient learn how to do things and take over all those daily decisions.

But here you are. One month after diagnosis. Apparently you have already learned how to carb count and know the basics of adjusting your own insulin. You are an anomaly. I applaud you for leaping into the deepest end of the pool and coming to the surface swimming. But you may just be a little too much for your PA. Most patients are still clueless after only a month, unable to really tell whether a 200 mg/dl 2 hours after a meal is good or bad, let alone what to do about it.

I would just step back. Over time, you will emerge as the leader of your own destiny. You will make your own changes to your I:C ratio. And your endo and PA will feel more comfortable with your doing that. But today, one month after diagnosis, they are not ready for you to be where you are. But they will come around. And if they don't then you can look to changing endos. But I have to tell you, finding a good endo is difficult and many of us have had our share of bad experiences with doctors.

As to the pump, there is no rush. If you are really busy, then it actually might be better not to complicate your life with the transition to a pump. And if you get any more criticism about testing 9-10 times a day, you can remind them that you are testing that many times so that you can establish the appropriate testing patterns to be an effective pump user.

8

You should definitely as the CDE if she can help set you up. The worst she can say is no. If she does, you should maybe consider finding a different endo, because (IMO) some of the things you have been told are not good advice.

Testing 9-10 times per day seems perfectly adequate to me. I test upwards of 14 times per day, depending on how much I am driving and exercising and eating. I mean, if you get behind the wheel of a car not realizing you're low, you'll be blamed for not testing before driving. But if you test "too much" and some of those tests are pre-driving tests, then you're told you test too much. Sheesh!! I had an endo once tell me I was testing "too much" and I said to him, "Ok, sure I'll test less. But will you be assuming all liability if I get behind the wheel of a car not realizing I'm low and kill someone?" He looked at me like a deer in headlights and left the room. I didn't go back to him anymore.

Personally, when making treatment decisions (such as adjusting my basal rates or I:C ratio) I just make the change myself. I have never called anyone. That said, I've been at this for a long time and you're a newbie. If you get a pump, you will be in the position where you'll have to make treatment decisions, so you need to get to a place where you're comfortable making adjustments in your treatment, testing, and then adjusting further as results warrant. A lot of using a pump is just trial and error.

Your busy schedule is the EXACT reason why you're a good candidate for a pump. My current endo said that she always recommends a pump for T1s who have hectic schedules, because it gives you more flexibility in holding off meals and changing things around. For me, it has been a lifesaver in this respect, because I am not forced to run out of a meeting at exactly 11:50 AM to eat my lunch.

9

You will need the advice for a while, but I agree, it is your body, your T1, and you should manage it in a way that makes you comfortable. It has only been a month, so you will have lots to learn. Just one more word of advice: don't let it become the focus of everything! There is a lot more to your life than Diabetes!

10

Hi Paliminovet, I think you know a great deal about managing your diabetes already and you should be applauded for that! After 25 years of injections, I started the OmniPod yesterday (and it's absolutely fabulous, by the way! Best numbers I've seen in a while thanks to no more Lantus.)

When I went to training I had already entered all my ratios and information into my PDM...All the info they give you ahead of time says DO NOT set it up yourself prior to training but it's not like it's rocket science and I'm impatient. :)

I wasn't sure what kind of reaction I was going to get from my CDE because sometimes they give you that "look" like they're skeptical of whether you can handle it. I could tell that the pump trainer was not pleased but my CDE spoke up and said "In my experience, people who take the initiative and responsibility themselves do much better". I think I found a new level of respect for my CDE after that.

Since your CDE seems to be someone you're comfortable working with, I would go that route to get started. As knowledgeable as you've become already, you'll be up and running in no time.

11

Hello Palomino!

You as the patient have the right to choose where you go. However, if you have an HMO or there’s only one endo in your area then your gonna feel screwed. Ive been there. It sounds to me that your problem is with the PA. Generally PAs work underneath an endo. You can refuse to see the PA. When you make your appts let the front desk know that you would like to see the doctor not the PA. This shouldn’t be an issue. If they ask why let them know you prefer the doctor over the PA and you and the PA have very different schools of thought at the moment. Also, I’ll say this cause everyone has said it to me, and because I didn’t listen, I ended up in a terrible predicament for the past 4 years. If you don’t like or can’t get along or talk to you doctor run, don’t walk somewhere else. Even IF you have to leave the region, it will be worth it.

As for switching in the middle of the process of getting a pump, that to is a personal choice. I mean if you think the pump is worth waiting till you get it to switch the wait, if you think you should have a good support system from you doctors office then wait till you get it worked out. My endo said pumps were made for busy people. So, I’m busy and I’m workin towards gettin it ASAP. They should be a little more willing to work with you. I didn’t even need an appt to get mine, just filled out the request and started the process myself. Animas called the doctors office to get what they needed.

Hang in there girl. We are gonna get through this together. That’s right I said we cause we are gonna be peeps. And you a re my first peep with diabetes. We can share this boat. Lol.

12

I absolutely would have been out of there with those comments. Anyone that thinks a new Type 1 is testing too much or "micromanaging" is too ignorant to be of much help imho. I would ask the CDE if she is able to do it for you. Another option is to go through the pump company. I just did my training with an animas trainer and they did all the work, including hand carrying the paperwork to the doctor to sign.

I don't mind doctors that don't have much to offer, but I have little tolerance for negativity.

13

well, congrats to you...I must say, you are doing a fantastic job! I too have had nurses and CDE's tell me I'm trying to micromanage my diabetes, testing too much. One nurse told me to only test 4 times a day, i gave her an earful..my endo has Rx'd 10 - 12 tests per day..sometimes I do less, sometimes more. Who cares how many times we test, it's how one gets good control. Next time ask her if she has this disease...cause she has no clue what a high or low blood sugar feels like and the way we correct these and TRY to stay within range, to save our bodies and feel better, is to TEST, TEST, TEST. My new endo told me, "if in doubt...just test, don't guess." Everything about diabetes has to be micromanaged on a daily, hourly basis. If you (we) don't do it, who is going to. NO ONE knows our bodies better then we do..if you're comfortable making changes, just do it..it sounds like you're very well informed, remember to make changes slowly, wait 3 days, only change one a time (basal - bolus) and there are always 1/2 units too.

As i've said before, these doctors and D team so called 'experts' work for YOU, not the other way around.

Also, do you have ideas of which pump you'd like to get...you can contact the companies directly, as someone noted, get the info, etc..then, which ever one you decide on, they, the reps will do all the work. it only took me about, maybe 2 weeks, to get a pump...they'll do all the insurance too. I think she's pushing you to make an appointment because they are so full, maybe in your best interest and she may be trying to be nice about it. Usually a pump nurse does the training.

14

really...smileandnod, you're lovin' your pump??? oh, that's so good to hear. I have had mine sitting here for over a month now..well, i got sick and wasn't able to start..but this is SO encouraging to hear..thanks for sharing this. I go back to my pump nurse on April 4th to start on the pump w/insulin.

When you did all the ratios yourself, your basal - bolus rates change, decrease about 25% because no more long acting and delivery via the pump is different, did you just calculate what you're using with lantus/novolog (or whatever fasting acting you're using) and decrease 25%..? I'll just wait and let them program it..and just see how it goes.

Do you notice you feel better, not just because your numbers are better (so happy for you :) but because you're not taking lantus? i think these basal insulins suck sometimes.

15

I know that you are right about that. I guess initially my way of coping with the shock was to learn as much as I can. I actually had a vacation last week in New Orleans and Memphis; I definitely lived a little, but kept the diabetes aspect reasonably under control. It was nice and I felt like a normal human being. I even got over caring about testing or injecting in public.



It honestly puts me more on edge and anxious having someone be so negative towards me. It makes me feel as though I have done something wrong. My friend in vet school who made me initially go to the doctor because she was concerned read through the emails and was not really impressed either…

16

No paperwork is done yet. Dealing with that PA just makes me want to wait longer because I want to find a way to politely bow outwithout making huge waves. I think I would be fine dealing with setting up the pump with just my CDE… but she may not want me to do that. I’m going to make an effort to get in touch with an endo who has a solo practice in a neighboring city. She used to see my sister and actually came to my sister’s funeral when she passed away. My sister had her pituitary removed when she was 7 because of a tumor there and had to see that endo for the rest of her life.

17

Thanks. They had me on that ridiculous sliding scale for the first couple weeks, and I got a little fed up with it because it wasn’t doing anything useful at all. It was more of a pain in the rear to me to try to figure out how much of what I could eat based on the amount I was supposed to take. I told the GP it wasn’t working at all, lol. Now that I look back, I see why they do that with everyone but yes, I am probably too much for some people. :confused: I’m not following the PA’s advice this week… she told me to go up from 9u to 11u. I know with 10u I start having fairly low readings. I’m doing the 10, but woke up at midday today in a sweat and feeling crappy. Checked and was 67. Ate two tablespoons of peanut butter and woke up at three with a reading of 73.

Sorta feel like she didn’t even look at my log to have suggested 11u.

18

You sound just like me! I would have totally done the same. In fact, I think by staying on MDI a bit longer, I’ll do fine when it comes time for the pump. I may have to message you about the pod; I think that’s what I want and heard they are coming out with a smaller one at some point. Bravo to you for being proactive. :slight_smile:

19

Amen! I’m working with horses, cattle, and other things larger than me who like to be unpredictable at the best of times! It’s better to know if I’m gonna crash soon before it’s too late!

20

Hi Type1Gal, sorry to hear you've been sick, I was wondering where you've been! It's only been 24 hours but so far (knock on wood) it's been better than I imagined.

I've read that the basal delivery with a pump is so much smoother than with long acting insulin and injections but the difference is unbelievable for me. I've had some really flat lines for hours beginning as soon as I started. The highest I've gone in the last 24 hours is 182 and that was when the Lantus was wearing off.

I feel like I'm walking around with a grin on my face because it's so much better having the variable basal rates and no Lantus peaks/valleys. My basals still need tweaking but it's been really good so far.

Actually when I did the set up, I just converted my basal to units per hour, knowing that the endo would tweak that because I wasn't sure what to set differently for day/night because I have different basal needs there.

Endo bumped up my converted basal units per hour by 10% for the daytime and reduced it by 10% for nightime. I woke up this morning at 110..pretty good for day 1!

I'm really glad not to be on Lantus anymore. The Lantus was just not as predictable for me anymore and I had gotten to the point I was afraid of it.

Good luck with your training! And I hope you feel better. We'll have to compare once you get started!