Getting the most out of an endo appointment?

[sty]

I am changing endo's and going to see my new specialist soon...kind of like a fresh start, I think it will be good.

What are some really, really good questions to ask your endo, and things to do so that you get the most of that little bit of time with your endo? Obviously I will ask about problems or concerns and stuff that I can't seem to work out-but SO many times I just go along cause I "should", and end up thinking at the end of it "well that was just a waste of time, money and petrol", and don't learn anything, partly because I don't really know what I should be asking! What works for you guys?

I tried searching, but couldn't find anything, if you can point me towards any old topics, that would be really helpful! Thanks!

[Mel]

That's a fantastic opening post and I'm looking forward to hearing everyonés thoughts, I am in the current situation of being some months overdue for my annual endo visit (Have had three monthly a1c and kidney functions etc done elsewhere tho and eye checks with optho) and haven't gotten round to it for much the same reasons as you mention.

Two things that spring to mind for me are;

Are there any new treatments/technologies etc that may help me, are there any clinical trials that may be appropriate for me?

Explain the pathology results, ie why the test, what the results mean and is there any action/treatment to remedy anything that is of concern.

Practical things when you see a new endo for hte first time may also be a good idea, eg emergency numbers and finding out if you can get scripts from them without a visit etc.

[Anne]

- what are my (realistic) blood sugar targets?
- what part of my management am I doing well? Why does it seem better than before, what am I doing that makes it good?
- what part of my management am I not doing so well? How can I improve it?
- where do I start?

One thing my specialist found out for me was that hypos were one cause of bad control because my bgl bounced back really high and i lost control of it all, so avoiding hypos really imrpoved my control.
And one way to avoid hypos was not to over treat highs. So getting a better idea of how much I needed to correct my highs is one of the things my specialist did that really helped me.

- what are the current recommendations to prevent complications?
-what sort of follow up do I need?
- newer insulins?
- newer screening techniques?
- review your technique to inject, timing, correction doses, sickness rules, hypo cures, glucagon technique, insulin:carb ratio, if any doubt
- is your background insulin dose ok?

- stuff more specific to your own circumstances:sport, work, travel, etc

Good luck with the appointment. Good of you to prepare it.
Anne

[LongRidge]

Is my meter reading plasma or whole blood glucose, and are you talking about what my meter is reading?
What are the inaccuracies with the Hba1c test? Are my bad results because of an inaccurate test? How often can the lab get the same result from the same blood sample? This is important because if the lab for example can get numbers between 5 and 10 if they do 10 tests on the same sample, then that is much different than if they can get between 7.4 and 7.6 from doing 10 replicates.

[Bella]

Yes great post, as Mel said.
I agree with the question about the blood tests.

One of my 'hates' are when the doctor or specialist instruct you to get a full blood test, and when you go back to get the results from them, they don't explain what your results were! Or they might tell you what your HBa1c is, and a few other results, but not in plain english!!! It's almost as though they think that only they need to know what your results are...... HELLO....... it's my body...... I wanna know everything that's going on..... good or bad!

So, yes, ask them to explain EVERYTHING on your blood test result IN PLAIN ENGLISH...... whether it be good or bad.

[Tony]

Being a tragic list maker, I write down any questions when I think of them and then take the list along. Otherwise I forget what I wanted to ask.

[Kate]

Yes I agree there are some things that can be garnered outside of the directly specific lists of questions we come up with - my endo and I often discuss the latest international medical conference she's been to and any ground-breaking research that she saw released - this will often not be directly relevant to me (last time we discussed long-term follow-up results from the DCCT which showed that a lot of hypos didn't effect brain function long-term but high sugars/a1cs did (not much but moreso than hypos, ie the brain is good at protecting itself from hypos etc.) andanother reason highs are bad yada yada - this wasn't something that was immediately of relevance to me nor would have been on my list but was really interesting to discuss and I left feeling like I got something new and enlightening out of the experience.

I would definitely ask about new research etc, and as an aside, if my endo can't answer such a question confidently then I would be wondering if s/he was the best endo for me!

[ravaani]

As a health professional myself, I am always interested in where the practitioner is coming from. This stuff is hardly ever discussed between patients and their health practitioners. The fact is that there are many, many different philosphies of medicine, ways of applying them, stances to take relating to different therapy regimes, etc, etc.
Ask your endo adn your educator what model of practice they subscribe to? What underlying assumptions they have about diabetes management, patient care, etc? What makes their way of practicing stand out from their peers or if they think it is very much in line with their peers? Ask what their hopes and expectations out of your appointments are and let him/her know what yours are - make sure there is a good match.
At the heart of it, I am suggesting you check out the perpectives of your endo, what their ideas and goals are regarding YOUR body and wellbeing. This kind of discussion can help you get the human relationship stuff right between you before you just leap at test results.
(PS Ask if s/he has ever logged on to Reality Check and what their impressions were is a round-about way of checking them out!! Wink)

[Leni]

In your own preparation to see then endo, test your sugar regularly and write down your blood glucose readings, boluses, basals etc before you go. My endo hates it when people show up and either dont have their machine with them (and have nothing written down) or just havent tested. Your endo of course can order all sorts of bloodwork, but in order to help you make insulin adjustments they need some info to work with (an HbA1c will only give so much info - a good HbA1c could mean you have loads of hypos and lots of highs). I know its easy to say "I can make my own adjustments" but sometimes the endo can see problems you can't. So even if you think you're fine at making your own adjustments, I would do it anyway. Not only is it helpful, it shows you are motivated in your management which I find always helps the communication.

Also helps to find out how your new endo feels about certain things, like pumps for example... you don't really want to build a relationship with someone who refuses to put people on pumps - you might not want one now, but in the future you might. Also find out if they have much experience with pregnancy (again, might not be for you now, but there is always the future). Stuff like that :)

[Mel]

My endo hates it when people show up and either dont have their machine with them (and have nothing written down) or just havent tested

I sort of agree with most of what you've said BUT I have some issues
with approaching an appointment on the basis of what the endo may like or dislike. I think all too easily we fall into this trap without stopping to think about it and ultimately it disempowers us.

I read something from Joslin for HPs that said that if your patients don't test and record results then it is a failure of YOUR education methods and ability to work with patients, I like that.

If you, as the patient choose not to test and/or record your results then you should be informed of the risks and problems with that, but then your endo should treat you for complications screening or whatever it is that you're there for and get over his likes of dislikes of patient behaviour.

[ravaani]

I couldn't agree more Mel. Well said.

[Leni]

I do agree with you Mel. I test, so I have no problems testing and writing down my results, and I feel I get more out of my appointments when I do do this. On the rare occasion I don't, my endo doesn't have a go at me about it, or anything like that. On the contrary, he knows that I'm having issues and he tries to help me with that. My endo hates it when people don't show up with stuff because it means he can't do his best for them, not because he feels they are wasting his time. He still does his best for you.

I read something from Joslin for HPs that said that if your patients don't test and record results then it is a failure of YOUR education methods and ability to work with patients, I like that.

Thats a very blanket statement, and I think we all know there are many reasons we go through phases of not testing. While some people may not test because of "failure" of the endo's education, I would hazard a guess that most people don't test because they get burnt out/are over it all/etc, and frankly there aint much an endo can do to fix that, bar possibly getting you to talk to a psychologist. It's drummed into us from day dot that high glucose = complications, and the only way to know what your glucose is is to test. In most cases, I don't think it is very fair to blame your lack of caring on your endo. Mind you, I've never had a crap endo so *shrug*.

Sty asked how to make the most of an endo appointment. I guess my point of my previous post was that if you want the most out of your appointment, then you need to provide your endo with some data. If you want to be proactive in your own management, then you need to test.

[Anne]

I see what Leni means: my endo gets frustrated when I turn up with too few numbers to look at as she cannot make suggestions about tweaking doses if she does not have a clue of my bgl pattern. There have been times when I was too busy or simply had better things to do than write them down, but if i tests and cannot show her the numbers, we can talk about other stuff but not use her experience to adjust my basals/boluses. I can do it myself , obviously, but one roel of the clinic is to get someone else to have good ideas about how we can improve things.

The timing of the tests is also important. I test lots at present, but not necessarily just before eating and 1h afterward, so sometimes it s difficult to assess if my insulin ratio is fine or not, which bit needs to be adjusted etc. So a few really fasting blood sugars, really 1 h post prandial , middle of night are more useful than random tests because I had 10 seconds to spare. Then I need to remember to write how much carbs I ate, how much I bolused, if I had been exercising when I hypoed, etc

Lots of info just before a clinic review can be really useful but it takes stime and effort to put it all down on paper.

[Mel]

I see what Leni means: my endo gets frustrated when I turn up with too few numbers to look at as she cannot make suggestions about tweaking doses if she does not have a clue of my bgl pattern.

The issue it not that having a comprehensive record of your tests is a good idea but WHY we do that. We don't do it because our endo will get frustrated/will dislike us etc if we don't. We do it because we want their perspective on our bsls/insulin doses etc to make useful suggestions about d management.

What we need to be vigilant about is giving the impression that managing their health is about keeping their endo happy and talking about how your endo feels about a lack of bsl results feeds into that fallacy IMNSHO

[Leni]

Mel, truly you have taken an innocent comment and blown it all out of proportion. Basically you've got the shits because I used the words "my endo hates..." .

Your issue seems to be about making sure you do things for yourself, not to make your endo happy which is a valid point, probably better made as a reply to Sty than as a criticism about my post. BUT getting the data, whether you're doing it for yourself or for your endo, helps insulin adjustments which helps glycaemic control, which not only theoretically helps prolong the onset of complications but it also helps how you feel on a day to day basis. If you want to be "empowered" then read as much as you can about diabetes, and treatments, and insulins and how they work, and everything you can find because THAT will help you more than anything else - you live with it 24/7, you need to be able to manage it and your endo is there to help you do that. Knowledge = empowerment because it helps you to manage your own diabetes as much as you can.

The issue I, and Anne, are talking about is having comprehensive bgl records because they help your endo help you. Does that make them happy? Of course! (though I am sure content would be a better word). Do they get frustrated when we don't bring them? I imagine they all do, just some show it and some don't (mine doesn't show it, but I used to work with him which is how I know how he feels about certain things). We're all human you know, even though some endos dont act it. Its a relationship you have with them - a good relationship is based on trust and respect and communication. It's a two way street.

Oh, and this is all out of context now. My original post was specifically about Sty going to an endo she has never seen before, and what she can do to make it a good appointment. My response - take comprehensive BGL data.

[LongRidge]

..... including some 2 am test results. I've only been recording for 20% of the duration of my disease (10 years ..... before then the numbers that the tests gave were too inaccurate to make good decisions from), but from having these documented have have been given some quite useful information ..... as well as some trials which proved to be worse than useless. KEEP RECORDS WHEN YOU CAN.

[sty]

Hey guys

Well I had my endo appointment- and honestly, it was so, so good! I'm really glad I posted this before I went, as I went "armed" with questions to ask, and actually learnt alot through it...probably my best endo appointment ever...i cant believe im saying this...

But I did what you guys suggested and recorded (although only for a week) which i NEVER do, and Im glad i did!!! Sometimes I think I know everything there is to know about diabetes cause ive had it practically my whole life, but sometimes its good to just kinda take the view that theres heaps to learn, and that stuff is always changing.

Thanks heaps for your suggestions, it was really really helpful.

[kiwikid]

I have 4 yrs of written records for my daughter.
Now I download both the pump (basals, averages, TDD, i:c ratios etc), and my home and school meters (with the Compass Software program) and take those. I think getting the software helps heaps if you can afford it, and it even makes pretty graphs for you!

Dr Ragnar Hanas (Type 1 Diabetes in Children, Adolescents and Young Children, 2004) suggests that if a clinic visit feels like "a trip to the headmasters office" then something has gone badly wrong.

[Anne]

Sty,
Great to hear all went well. I usually think I know what my bgl are doing, because I always test, but when I am not pregnant I don't often write numbers on paper. I am often surprised to see once it s written that some of my impressions were wrong, ie I was higher than I thought, or lower, and there may be trends that I did not notice before.

So frustrating when an appointment feels useless or upsetting, but quite satisfying when one comes out feeling it was worth the effort.

Well done for preparing it!

Anne

[Kate]

This was a terrific discussion, and I summarised it in my presentation to the Diabetes Burnout event in Melbourne. Several peopel came up to me at the end to say it was useful.

Here's the summary I put up at the talk of questions to ask your endo:

New treatments/technologies ?
Clinical trials appropriate for me ?
Have you been to any conferences lately? What was the highlight?
Explain the pathology results, ie why the test, what the results mean, any action/treatment
What do YOU hope to achieve today?
How soon (and why) should I come back?