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..
Thoughts?
Any ideas on questions I should ask? I'm making a list.
THey are not used to people like you who probably keep good records...they will likely ask for your meter and read it out to create a 2 week summary. (Or whatever data you have in the meter). I think you are ahead of the game for people that are recently diagnosed.
The endo will likely do a physical exam, check your thyroid gland , feet sensation, reflexes, bp, etc. Look for things like acanthosis nigricans (really a sign of type 2), etc. take a medical history. He/she will review your recent blood work and order anything else deemed appropriate that hasn't been done: ex would be a c-peptide level, Islet cell antibodies, gad-65 antibodies, celiac screen , full thyroid set of tests, (Looking for signs of other autoimmune diseases), kidney function ,etc if it hasnot been done already by your GP.
Perhaps they will set you up with a RD/CDE if you don't have one already and discuss your insulin therapy.
Expect to see your endo aboput 3-4 times a year if nothing is going on...maybe more often initally as things are getting stabilized and you are coming up the learning curve. After that it is simply a chronic condition that needs monitoring.
My personal experience is that the faster you can learn to self-adjust insulin ,the better. Ideally you want an endo that is supportive, educates you, and enables you to take control of your life again.
Most doctors would love to have a patient like you that is smart enough to understand their own condition, and learn to treat yourself.
Uh oh. I've been using two different meters because test strips were a bit of an issue. I'll just try to export the dbees.com info to a spreadsheet... and take a printed copy, a copy on a USB, and my main meter.
They want to repeat my bloodwork, which annoys me a bit, but coming from a university setting where all of our veterinary internal medicine specialists repeat bloodwork all the time... I shouldn't be surprised.
I did make sure all my records got sent over.
I have an appointment with a CDE at the family physician group on Monday... I'm going to keep it for now, in case the appointment does not go well tomorrow and I don't feel like I need to stay with the endo. :/
Thanks for the heads up about what should happen.
Also,
get prescriptions for whatever you need: insulin, pen needles, lancets, strips, meter, etc. Make sure the Dr. writes the prescription for the quantity you want tu use...i.e. for the strips, have them write "test N times a day" to get the quantioty you want (i.e. if you want 12 or 15 a day tell them).
Separate from the Dr. visit,
Sign up for the discount programs for Lantus, Novolog, test strips , etc.
Most of the vendors have a discount that takes money off the co pay for either the first couple of purchases or every purchase...for example, the Freestyle Promise program offers a discount on the co-pay for Freestyle strips and other vendors likely have similar programs.
They usually give away free meters with a prescription because it hooks you into their strips.
Also, does anyone use any software to keep track of their diabetes? Is there one that anyone really likes in particular? SEems there is a lot out there..
My endo is a big minmed fan, so I print out stuff from carelink. Last time I told him he could access amazing information as a doctor on the site. You would have thought I was speaking Latin. Docs that I deal with are not particularly techie smart. Bring printouts!
OK. I will start signing up for the discount programs and see how it all shakes out...
What is a reasonable number of strips to ask for? I seem to test at least 8 times a day right now.. should I ask for 10 or will the doctor be upset by that??
The Doctor shouldn't care....it's your insurance and your pocketbook. I asked for 10 and the doctor said I'll put down 12!
I use at least that many a day.... sometimes a little more, sometimes a little less. Waking, before and after meals, before sleep, before driving, unusual activity (travel, exercise) , when things are changing fast, etc. It adds up. Can be 15 sometimes...
I used to be more of a control freak and print the pump reports off and fax them over but I gave them the password to my pump/CGM data and it seems to go much more smoothly.
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.
I'll ask for 10.. and hope I get at least 8. I'm a bit confused by my health insurance's pharmacy group...
When I have been checking what they cover online and what they don't, it will say my copay is $40 for one bottle of 100 test strips in a month's time.. And then it will say my copay is $40 for 300 test strips in a month's time.
I'm really annoyed by this because I feel like I'm going to show up at the pharmacy and they're going to ask me for $40 for EACH individual bottle despite the fact that when I talked to the insurance company on the phone and had them look it up, they told me the same thing.
UGH!
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.. >.>
Many plans have a max copay for a month or for 90 days supply that works to your advantage on things like this. It may well be true that it is the same $40 for 50 or 300 strips....but you wont know till the first order.
Dealing with the insurance companies can be more frustrating than the disease....
Okay, thank you. I've been worrying about it ever since I talked to them earlier, but I will try to calm down until I find out everything tomorrow.
You have been so helpful! I really appreciate it.
I had a One Touch Ultra Smart meter that did nice charts, that was back in 2008, before I got my pump.
Oh dear. If all that came through on my fax machine, I'd probably cry.
I'm sure they appreciate the password very much :)
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!
You are moving fast and dealing with it well. They will be conservative with the I:C ratio and correction factor at first...they dont want you to have a severe hypo. Also you probably still have some native insulin production now and it will be easy to overdo things. ..things can be slowly tightened up as you learn what works. You'll see the ratios change as you need more insulin as the autoimmune process, unfortunately, continues.
It's great you've found a team you like working with....it really helps.
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.