I thought it would be a long time until I could see an endocrinologist. It turns out they had a cancellation for tomorrow morning and I can come in! I never expected it this quick, and feel a bit ill prepared. How did you guys organize all of your data for your first endo appointment? I've just been keeping track of everything on dbees.com.. but that's not exactly a friendly format to show people the data..
Any ideas on questions I should ask? I'm making a list.
I have been 'less' of a 'control freak' but had gotten my sugars reasonably under control before my appointment. Now my sugars are skyrocketing everywhere, following their instructions. It's making me feel like crap again.
So I called this morning and talked to the PA... she said you're supposed to take about the same amount of short acting in one day as you take of long acting. I've been taking 8 of long acting and about 12 to 15 of short. So she said I could go up on the long acting.
And then she told me not to micro manage it! LOL. I don't know how I feel about that.
I found I was happier once I learned to self-adjust insulin and got comfortable doing that...it was scary at first because we are taught that a physician is supposed to tell you how much of a drug to take. Self-adjustment of insulin is really the only way, imho, to get good control. Things just change too much. Though handholding from the endo or PA/CDE can really help in the beginning.
The PA is correct...as you will see from the books, things tend to work best when basal insulin is 40-60% of total daily dose. (The balance being bolus insulin). Look at how much total insulin you are taking a day and set basal to be 40-50% of that...alternatively you can go up, say 10% a day and see how it works out.
You may find that as the so-called honeymoon period ends, your insulin demands will go up, probably leveling off at around 0.7 units/day/kg of weight (rough T1 population average). The time period over which this happens varies from weeks to years by individual.
You are exactly right. I feel like I can't do anything without asking them first, but I think I'm just going to have to learn it on my own. It's frustrating that they do not provide more help with all this than they do..
Also, I will never tell a client that they are micromanaging. I know how it feels to be told that, now. Oh, the lessons we vets learn from the human medicine profession!
I'm going to maintain my appointment with the CDE at the family physicians group for Monday and see how that goes.. if it goes extremely well, I may not go back to the endo. Just some things to think about.
Thanks for the hint about where people level off- I did the math and I'm roughly half of that.
I've had both a lot of doctors and a lot of vets, palominovet (I'm 63 and have moved a lot. I've found plenty of doctors who were cold, without personality or who had god complexes, and not one vet who had any of those. This despite the fact that I've been told vet school is as hard to get into as med school!
By the way, I didn't "translate" your name until I typed it just now!
It's true that there are far fewer veterinary schools than medical schools, some say it's harder to get into them, but I don't know.
Glad you have had good experiences with veterinarians!
Does it explain why I'm probably a little crazy now that I've been diagnosed with this? LOL. Oh well.
I download my pump and meter data to Diasend and EZManagerMAX, the software packages for my pump. I download weekly, so my information is almost always up to date. I take my laptop to my endo and CDE appointments, so that they can look at whatever data they want.
Spreatsheets are good. Endos seem to like those. It is good to bring your meters too.
All of these softwares sound great if you had a pump. I just tried out SIDiary but it's kinda clunky. Oh well. I will just take my laptop and show them the info on it. They will probably not like that I use a couple different meters.. >.>
I had a One Touch Ultra Smart meter that did nice charts, that was back in 2008, before I got my pump.
If you're on diabetes.org forums, you may have already read this... I'm just posting relatively the same thing on both sites:
Thanks for all the suggestions, they were very helpful... and guess what!! I loved both the endocrinologist AND the physician's assistant that I saw!!
They were INCREDIBLY nice!
They told me that I was doing really well for having just been diagnosed. The PA wants me to go on a pump ASAP because she feels that it's the best way to go for someone in my field and would be the most versatile option.. I had some reservations about it, but she convinced me it's the best way to go. She gave me a dummy omnipod to try out and see how I like wearing it. BUT... my insurance doesn't cover it. Or any insulin pump. (I nicely told the lady from the insurance company that I was glad I wouldn't have their insurance come May... >.> And then thanked her for her time)
I am going to try to find out if they will cover it when I switch insurances come May.. because that would be worth waiting for if they do.. but if they don't... I'll figure something out..
Probably the most relieving thing is when she told me to stop eating like a type 2 (super low carb).. and that I can eat whatever I want. Now I do realize that I should not abuse that. I'm going to try to eat healthier in general.. lots of veggies, fruit, fish, poultry... but it's nice knowing that if I want an occasional piece of cake, I can have it! Or a hamburger... or a filet of fish sandwich from McDonald's, which I had a dream about earlier this week! (No, that's not a joke, I really did have a dream about it! :/)
I have to send my numbers to her once a week.
He also suggested going to trialnet to see what is going on right now with patients who are newly diagnosed type 1's... he apparently has several patients that are part of some study that is going on right now.
Oh, and 4 free Humalog Kwikpens. :smileyhappy: And an I:C ratio (of 1:20 which I think may need to be lowered, it doesn't seem to do a whole lot). And a correction factor. And a glucagon kit.
I think I'm way too happy about this!
I can't thank you all enough for listening to this gigantic saga I've been posting about over the past few days I've been here on TuD! It means a ton to talk to others out there going through the same thing and it has definitely helped me 'keep it together' better than just floundering on my own.
Even though I'm not a 'huggy' person... virtual hugs to all of you!
No offense to the cde but low carb is not exclusive to type 2's. Many type 1's find that eating less carbs allows for better control. The "eat whatever you want" philosophy that is so popular now is, imho very unfortunate because it doesn't take into account how difficult blood sugar can be to control, and what a good tool moderate/low or low carb can be. Nor does it let people know that if they eat whatever they want and "just bolus for it" they are 1) liable to misjudge and be too high or too low 2) gain weight and 3) develop insulin resistance. Having said all that, you sound like you have a good plan for mainly healthy eating!
Yeah... I feel like I get that I should not be a carbaholic like I used to be. I was a very bad carbaholic. >.> I may in fact need carbaholic rehab..
But honestly, it's nice to know that occasionally is okay. I don't want to be giving myself tons of insulin all the time because of bad food decisions, and I also have no desire to weigh 500 pounds and be insulin resistant on top of my pancreas giving out! :/
But I will not feel bad about eating a piece of cake on my birthday (just not the whole cake).. or having an occasional glass of wine. :)
I just have no idea how many carbs per day is considered 'low' or 'moderate' for me and I don't meet with the dietician until late March.
I've been eating around 75g a day.
Wow, that's great! I eat under 100 a day and consider that "low/moderate". True low carb ala Dr. Bernstein the low carb guru is 30 grams a day. Sounds like you are doing great on diet (despite the ADA party line!)