DE visit: calling the shots for myself

[Subby]

This is me thinking out aloud, also interested in what others who have some similar issues, who have dealt with, or even ARE DEs, think about what approach to take... It is not a particularly interesting thread and goes on a bit. And, a lot of the details really will only make sense to a pumper, bear that in mind. Sorry. :)

Next week I am going to see a DE. I want two things out of this: a word from them that it's reasonable to use Levemir instead of Lantus, and my GP (family doc) will be happy to prescribe it. That should hopefully be straight forward, and I can have a blessed pump holiday.

And, a reference to an endo, what I am looking for is an endo who is perhaps more progressive, who will admit and actually tackle insulin resistance issues in type 1s, and who works with pump ideas (doesn't need to be 100% involved... just one who has studied and works with the ins and outs).

Now, when I talked to one of the DEs on the phone, I got some warning signs. There were no general questions of how long I've been a diabetic, what's my A1c, what would I want out of seeing them, anything like that. On hearing I was on a pump the first question was "I assume you upload everything to your computer". I answered, I've done that a few times, but not really as a matter of course. There was shocked silence, as if I'd admitted to blasphemy or shirking school. Then it was about 5 minutes how well we need to fix that, do I have a cable, etc, lots of pauses as if everything was terrible. Then I said I'm also looking for an endo, and the answer was all about how some endos do work with downloads and others don't.

Not so good - I wanted to say nice and clearly - stuff the data! Because without a lot of other things and understanding how I control my diabetes, it is going to be next to useless, it's just an incomplete dog's body. Others may have a relatively logical time of managing their BG, lifestyle, and using of the pump. For me, my insulin therapy is a patchwork of approaches and workaround to a number of big spanners in the works. It is not standard. More rigid docs and the like have always confused this fact to mean I am lazy or making issues for myself - after all I get reasonable to good A1cs. They do not listen that the reason I get good A1cs, is because vanilla does not work, and I have to do all these things in order to get those A1cs.

As for the data, there are hardly any BG results in there, I will not spend the time plugging them in the whole time. I do manual boluses half the time, I cannot just "follow pump settings". I do a lot of corrections, that is the way I get an A1c in the mid 6s, if I just followed my settings it would probably be in the mid 8s. I will change carb amounts to reflect if I need more or less insulin for this or that food. There is no log of food in there. No log of stress in there. No log of sleep in there. No log of whether it's a good set, an ok set, or a bad set, in there. No log of whether the set is taking it's time kicking in (can be up to 10 hours for me) or not. No log of correction injections I take, which I do quite regularly in conjunction with the pump, to be sure that I'm getting maximum speed of correction (ie, more effort to make sure it works, instead of leaving me high for 5 hours).

The only things to be learnt, given anything but an intimate knowledge of both my issues over time, or the events of a certain few hours in a saturday two weeks ago kind-of-thing (which given a random "pointing out" I am unlikely to remember, despite keeping notes when I feel I need to), is that my standard deviation sucks, and that I get a lot of random seeing elements causing mischief and strife in keeping stability - above and beyond what I hear about in many type 1's control. I already know that. That's why I want to tackle the resistance issues. But to date such indicators, have been interpreted as me doing the wrong thing, rather than making the best of a hard situation. Usually because I don't get a chance to explain the reasoning, logic, and usually necessity in doing it the way I am. (And not just simple explanations, it can be long and boring to "get there" plus explain the options I have exhausted.) So the final decision is often I'm just a meddling patient causing problems.

So, this emphasis on data was a concern, and I must admit a bit intimidating - I cringe at the idea of trying to defend what looks like a hundred mistakes once the details fade from my memory, but are all my best bet at controlling things both through the "system" such as I:Cs and basal rates, and through ongoing adjustment and adaptation - in equal measures. At the same time it sounded like they have contacts for a range of endos, and that is what I really want, more leads for endos, I need a good endo.

I called the office and booked in with the other DE, in the hope I might get a better fit to me. What I am trying to do is work out what approach to take in with me next Wednesday. I think I need to just sidestep offers (or almost insistence) that I "hand my case over" in the best way possible, and focus back on the fact my A1c is good (so stop harassing me please) and that I am looking for that endo, lets talk about that.

Yet the problem is, that if they really suspect I cause high insulin usage and volatility through things like a completely hairbrained inaccurate approach to basal rates, terrible eating habits, etc, are they going to really put on their thinking caps towards what I want, or are they likely to suggest some endo who will "get me into line"?

So trying to think of what to take with me to possibly combat this, I've thought in terms of what they are likely to think.

"YOU DONT LOOK AFTER WHAT YOU EAT, you probably pig out, eat the wrong things at the wrong times"
- diet plan for at least 5 days (showing a moderate, lower carb, "low GI" kind of approach, with avoidance of excess carbs)
- If they are concerned at a lower carb consumption than standard, I will play up the carbs. (Just try and move over that hurdle "HOLD THE FORT! SPEND THREE MONTHS WORKING WITH A NUTRITIONIST!". If they are concerned at nutritional values, I will keep pointing back to the variety and good choices of my diet.

"YOUR BASALS ARE CUCKOO"
- A quick explanation of the repeating systemic fluctuations I had on long acting or only a couple of rates: building a case for the basal complexity I use (which has improved my life a lot)
- Basal testing results (don't know if they will be up with basal testing, am working on a persuasive way to present them).
- on the phone I mentioned my difficulty with docs trying to cut my 12+ rates down to 4, and the answer was "well sometimes we want to be neat about it". I want to be ready with this argument, and have a way to nicely point out that between numerous but effective, and neat but innefective, I'd like it if we could put the neat option further down the list.

"YOUR BOLUSES ARE ALL OUT OF WHACK (BOLUS AND CORRECTION)"
For these, it is hard to pin down data that they are indeed in ballpark and not a point of problem as such. (Or, that they are an isue, but that it cannot be solved to much more satisfaction with simple pump tweaks).

Maybe I just concisely mention a list of issues I need to work around with my approach (have the best I:C possible, wing it from there) with points such as:

- bolus absorption problems (slow boluses help, but don't solve)
- Different times of day with different resistances, that can change, requiring me to be aware of it, no way to program into the pump.
- Variable sets, and slowness (up to 8 hours) for them to start working,
- Extremely heightened resistance if I go high (needing far beyond just an adjustment of ISF... needing manual intervention of dose, and a battlefield of half a day or so)
- And I guess I need to work out some basic BG results through a day or two, in order to illustrate there is some hit rate of successful boluses.

And the whole point of this would be so say "Hey, yes things are not perfect, but everything I do shows there is no perfect setting for me, hence I want to look at the potential root of my invariability and high insulin use!!"

See, and it's at this point I am falling asleep, it becomes just so tiresome and tiring to try and "cover the bases", so that I can get to an even footing, and just ask for better help with overall issues.

Maybe I don't take anything in, just block requests to share pump data, and stick to saying "I need an endo... that's all I'm here for", try and extract a list from them and get out of there.

Hmmm. Thanks for reading, those who are not snoring. I almost am!

[fgummett]

Hey Subby, first off I had to wonder why you need to see a DE (Diabetes Educator?)... I know you and I don't always see eye to eye but I have no doubts that you know far more on this subject than most of the health establishment out there. I now gather that this is a necessary step to gain access to an Endo and your chosen insulin.

I think the key to a successful approach lies in proving your points with clear cause and effect data -- give the DE your spreadsheets, graphs, food records etc... and show them beyond question that you do in fact know what your doing... let the results speak for themselves.

Every time I have had a crunch with my Doctors etc... I go in armed with information, print-offs of research papers, graphs, BG records etc... maybe I just overwhelm them into submission... or maybe they do truly respect that I know what I am talking about -- at least when it comes to my own health and my own D.

At the same time there is always the possibility -- slim I'll grant you -- that the DE may have some insight to offer that you had not previously considered.

Good Luck!

[Subby]

Frank, that's for the vote of confidence. It's for the insulin, but also to get to the right endo to see if I can get what may be T2 like insulin resistance concurrent with my T1, to be not just shrugged off at but actively dealt with too. I've had huge issues with endos looking perplexed at my high needs but simply not prepared to take the next step to trialling meds. It is as if for many endos they think:
- he's already T1 so the insulin resistance is a side issue we don't need to deal with
- Insulin use is the "last straw" in T2/IR management (or some such nonsense way of seeing things) and therefore as he is already on insulin, nothing should be done.

So one way or the other, I am hoping to get the best endo possibilities out of the DEs, who are the connected ones ... and may I say that my impressions from the phone might be very wrong, and that they will listen to my story and desires, and help me in a useful way. (And absolutely might have some general or specific control pointers at the same time) I am really hoping so.

[Lizzie G]

Hi Subby

We dont have DEs here in the UK (thank goodness; enough meddling health professsionals).

When I was reading your initial post I was nodding my head and smiling. I also experience high levels of insulin resistance at certain times, and too many factors to mention to even bother entertainining the idea of entering my BG and letting the pump do it for me....its sound like you take a similar approach to me, a combination of instinct about what today's prevailing issue might be and hence a sensible basal bolus to work with for the next few hours; and corrections...am i right?

Something I keep thinking is the possibility of asking about using small doses of a type 2 oral drug that works on the resistance; perhaps it might be more beneficial to find an endo that would be willing to do this, than go through the hoops and open yourself up to the criticism of an even wider circle of idiots that dont know what they are talking about? sorry to sound so blunt, but in my experience the majority of people that attempt to 'help' with diabetes have never dealt with the condition themselves, and dont have the intelligence to understand that my self management techiniques are not one but thousands of steps ahead of their limited realms of thought, i would imagine you find yourself in a similar position.

wow i really am one of little faith arent i? but ignoring the well meaning advice serves me well quite honestly.

[RWright]

Have I mentioned that I love this forum?! You guys continue to blow me away at some of the things you know about. I've had my head in the sand for several years now. I can't believe the wealth of knowledge that you guys have. I am learning SO much from these posts! Just wanted to thank you!
(This may not be the right place to post, but after reading this I had to say it)

[foxl]

I too am learning so much!

... Subby, I have no idea how to boost your cred with your DE but if there is any way you can graphically present really, really organized records, do so! I have a busted USB cable and the online people I bought it from ARE NOT making good on it. So I face the same concern heaing to my Endo in 3 wks.

We would all like to believe that the intelligence with which we control our D will be apparent to the professionals with whom we must deal ... unfortunately we are stuck proving ourselves worthy, over and over. It sucks.

I hope it goes well for you ... and you get a decent endo referral too!

[jenb]

Hi Subby - I surely share your concern that many in the medical profession try to pigeonhole us and don't seem to realize the complexity of dealing with diabetes day-to-day.

Frank's right - I'd pit your knowedge and experience against them any day. His suggestion that you go armed with charts and graphs is a good one. When I'm trying to communicate with a DE or and Endo I bring graphs of a couple of weeks of blood sugar results. I include detail on insulin intake and comments for any out-of-range readings like "had dinner with evil friend - too much wine, cheese and crackers" or "Novolog pen jumped the shark this morning - started new pen" or "**#! this - I don't understand why I'm high". If you'd like to see a sample, PM me. It's really changed the course of conversations.

Good luck!

Jen

[GeishaGirl]

Just a side note -- I find it really demoralizing that we have to prove ourselves "worthy" to doctors to get good care -- as opposed to the other way around. Especially when we live with this condition 24/7 and know WAY more about what we, ourselves, need, as opposed to a doctor who sees us for 20 minutes (if we're lucky) four times a year.

[notme]

Subby, I feel your pain and understand completely. I don't have a DE. I found myself going to my GP, for diabetes care, because I could not find an Endo that I felt understood what I needed. I also found endo's that wanted printouts, quick visits with little tweaks on what I was doing and blood tests to confirm their good work or my lack of self control. If I asked a question it was usually discounted as something I was doing wrong with my diet. Every time I went to visit an endo I felt like a child in the principal's office. I just stopped going.

After no less than five endo's, I finally gave up and went to my GP for prescriptions and took care of myself. That GP, luckily, knew she was in over her head with me. My A1C was about 11. She suggested that I needed a pump and found me another Endo that would prescribe one. I went to see him and he immediately told me to go on the pump and started the process. I didn't like this guy. He was fast with his visits, curt and if I asked questions, I was lectured.

As soon as I got my pump, I went back to my GP and said I was done with that guy. Now my GP was really in over her head. She found another Endo for me to try. I now have been with this guy for over seven years. I cry if he ever left. He knows I will not bring in "my numbers". He knows I won't do prinouts and graphs. He also knows I am an adult and that I know what I am doing, but need ideas and support from him now and then. He listens, tests and tries things I want to try. I also am insulin resistant (sometimes). He tried metformin for awhile to see if it would make a difference. Sadly, it was like popping a laxative without any positive blood sugar results. WE decided to discontinue after about six months. He desperately wants me on cholesterol medication, but he knows I don't want to take one and he is letting me try other methods first before I give in and try another medication. We work together.

Keep looking subby, for a DE that you click with. One that will adjust to your style. You are an intelligent adult. You have your way of dealing with things and your DE should be flexible and work with you. You are living with diabetes, they are a tool you are using. You don't need to graph and keep copius notes. Your labs will give you an idea of how you are doing and you know where the trouble spots are and that is where you and your DE should be looking. You don't need to be sidetracked by notes and glitches in those notes. Find the right DE. That needs to be your only goal at this point. If you don't find the right fit, stick with your endo or GP until the right one presents themselves.

[Tattoo azz]

Subby, my doc put me on Metformin abt 6 mths ago because he suspected i might have some insulin resistance going on. So far i've been ok on it, a bit of extra gas here and there but my numbers have settled and i'm taking less insulin (i know this maybe nothing to do with Met, but hey i'm not complaining). Have you thought abt asking your doc abt poss being prescribed Metformin?

[It Ain't Over]

wow i really am one of little faith arent i? but ignoring the well meaning advice serves me well quite honestly.

Now that is a statement made by an experienced 'D'.

[Subby]

Thanks for all the valuable replies guys, I've really got some processing to do here... I'll get back to you.

[DanG]

Just a side note -- I find it really demoralizing that we have to prove ourselves "worthy" to doctors to get good care

I was thinking of saying the exact same thing - thanks for saying it, because I was going to have a bunch of **** in my statement. :)

I am really surprised to hear of your quandry, Subby. I have always almost thought that you are a doctor and posing here merely to tell us to go to doctors, but it sounds as if you have the same basic distrust of their interest in our problems - interesting to see your thinking - thanks.

Now, further about doctors. Perhaps there is some understanding in the way we approach them that can make it less of an issue of proof to them. I mean, there is not a shred of hope that we will ever be able to show a doctor something about medicine - all he has to do is pull out the stops on his song and dance about the 8 years of university and 4 years of residency, etc and call us dummy. I would suggest that your plan of attack in planning for your encounter with the DE & endo might be to forget about proof. Merely craft your suggestions and questions in a way that they can claim all the knowledge, while you guide them thru to the end you desire. It takes skill and craft to do this, I would suspect. But, you will never win the smartness contest with a DE / endo / Dr. - forget about that. Medicine is the religion, you are the parishoner and unless you do this or that, you are headed to... wherever. Listen up, you dummie.

Have fun, plan ahead, we all hope you can get what you need / want with a true professional.

[Lizzie G]

Hahaha i have enjoyed reading these replies; we need to lobby the medical professionals to convince them that diabetes in a malfunction of the pancreas only and that the intelligence of people with diabetes usually sits within the normal range.

GRRRRRRR

[davef]

Subby,

I can't relate to the difficulties you face managing your diabetes/BG, or even come close to understanding what you go through with basal/bolus calculations.

With that said, my suggestion would be that you could well be dealing with people who see things as black and white, as such they like to see things printed in black and white. So perhaps, even though it will be a pain for you, it would be an idea to do a detailed log between now and seeing them, if they feel "they got through to you" they may be more willing to work with you, you know the whole give a little get a little approach. If keeping a detailed log will encourage them to work with you, I would think it would be worth it - if for now other reason than for them to see what you have to deal with. Once you get what you need from them, then you can retake control - just a thought.

As for what Azz said about the Met, I have noticed a few T1's on the forums taking Met or being put on Met to address IR issues, it might be worth investigating that, bearing in mind that it could take 3-5 weeks to see Met take effect.

Whatever you do, best of luck mate and do let us know how you get on.

[Delphinus]

That was quite a read, and I mirror Franks sentiment in that I am sure your DE would even have much to learn from yourself as well.

I have a DE, but to be honest, have learned loads more here, and with my own experimenting.

Keep us posted, and let us know how the processing is going. :D

[lark 27]

Suby,
thanks for your detailed post and am looking forward to updates as to how it goes. The problem is that if you were to try to share all you did in the post (with examples and some documentation, etc.) it would take much longer than an endo or probably even the educator would be able to spend with you. I'd be up front with your goal of getting an endo that is likely to work with you to treat the insulin resistance with a Type 2 style medication based on the fact you've identified the resistance. From there let them probe some with questions and you illustrate the points that show you've identified resistance but keep redirecting to your goal. "no, my insulin needs are not because I eat 3 big macs for lunch and a chocolate shake. I typically eat something like.... So you can see I'm rather resistant to insulin. What endo do you think would best be suited to treat this? Or what med do you think would best be suited to treat this?.... Good luck.

[foxl]

Subby, one thing I intend to do is provide documentation of post prandial testing, indicating just how few carbs throw me off.

Can you document specific instances of when you have difficulty -- just the highlights, for them? Indicate then that the problems are more frequent, these cases were illustrative?

[CarlyD]

If you can, do a diary-style log for a couple of days. Include everything you use to calculate your insulin as well as anything you feel like that does not come into play. Write short explinations for what you can, even if they do not make 100% sense. This will show them you take your diabetes seriously, but they won't go through the log and give you pointless lectures.

Next research exactly what you want and understand it at the molecular level. Ask for it and if they say no, ask why. Just keep asking and unless there is a real reason (which there likely isn't given the other people on the forums that are on the meds) just keep pushing for them.

"Good" endos recognize that those who live with their disease every day generally understand what's going on better than they ever could. Too bad there are so few "good" endos :(

[Subby]

Keep us posted, and let us know how the processing is going. :D

OK Jason, I'll do that right now... :)

Thanks for all the experience and perspectives on this. Perspective is largely what I've needed - because I have usually misjudged taking/giving either too much, or too little, in the way or records and notes. (Or one might argue, that the professionals recieving in each case, had lousy attitudes... but I'm leaving the medico bashing to the side for the moment.) Having over the years, either had too much info at hand (a lot of info, presented in the best way I could think) ignored and belittled as obsession (despite my attempts to say "here's the sea, let's just start with a bucket, I don't mind...), and of course, at other times painted as a lazy good for nothing if I don't take in exactly 4 weeks of neatly presented logs - I do have sensitivity and frustration about the issue.

You guys have helped me find that perspective. Thanks. All the answers have been useful here and appreciated.

Lizzie - yes to everything you say. It's priceless to have someone really knowing where I am in the way you do. Thanks.

Jen, Dave, Lark, Linda, I started off quoting all you guys because your posts have been so useful, but I figure my posts are usually long enough anyway. Your perspective is really appreciated. Carly, you too, I have to say that's an incredibly useful post for me.

Well, I think you guys have helped me bypass my anxiety and tendency towards going over the top, or doing things "right". I do agree that a fair and digestible amount of logging, illustrating how things go on a day to day level, (including a bit of commentary such as "new set - might explain this or " "What the &^%#$% is going on?" stuff - thanks Jen for the tone), should fulfill things. Both that I am at least attempting to make the right decisions, and to illustrate some of the issues that lead to my request for the IR to be taken more seriously.

So yes, I started to fill in some logs yesterday, using John Walsh's excellent "smart log" layout. The great thing about it is that you see a line graph representation of the BG levels through the day, there is a correlating stress/activity visualisation, and it lays out food usage clearly. It's about 1/2 a page, underneath I am making some more "notes" as well.

The last two days have been perfectly illustrative as yin and yang. At lunch yesterday I had spinach, 2x small bacon, 1 egg, small serve of mushrooms for lunch, and bolused for the very small amount of carbs involved (maybe 6g). I moved upwards by 180 mg/dl within 2 hours, (hitting 270 mg/dl) "apparently" from this meal. It took 6 hours to come down: longer because I was "playing it by the book" more than usual (in the attempt to make it more loggable). I suspect this whole event was partly was from a basal fluctuation of IR (or a strange liver dump, no reason I can think of...) and the stress of driving to work in traffic. But I do not know, so I just put it all down on the chart and they can look at it as an illustration of craziness.

Today I had the same lunch with 2 pieces of wholemeal toast. I don't usually have normal wholemeal bread or 2 pieces, but wanted to illustrate the possible effects of it. But anyway, I only went up by 36 mg/dl (hitting, 144) returning to pre prandial by 3rd hour. No hypos. My basals were shown to be effective today. Later on a dentist visit threw some IR into the mix causing a high... and seeing that I'm alive, there were of course other factors going on today... I've logged them simply, but enough of it hopefully a reasonable illustration that my settings are there for good reason - when my body is not playing strange funny games, they work.

So just continuing this relatively simple logging over the next few days, maybe take in some basic results from some basal testing (as my basal rates seem to be a big sticking point in the aim to "save me from myself") is going to be my approach.

Thanks guys for helping me have more confidence not to worry about doing too much or too little, and reminding me I can keep re-orienting the conversation (I can find it hard in person - but I can do it). It's been very helpful.

[davef]

Well done Subby!!! I mean it, really well done, I know it's a leap to go from not logging to logging. You never know it may not only help with the DE but also help you spot something.

I really think that aside from anything else it will prove to the DE/Endo/Doctor that you are serious about wanting to get a handle on what is happening. I ain't no expert, but from what you are saying, I would think that it is very reasonable for you to be encouraging your care team to explore the possible IR issues. If you do get on something like Metformin, I think you'll need to watch for lows, since if IR is an issue as the Met takes effect you are likely to need less basal/bolus insulin.

Above all, well done you mate! Keep fighting the good fight and the very best of luck in making progress - I'm delighted for you.

[Subby]

Thanks Dave! You know the silly thing is I have many notepads full of my own style of logging or notes. Just not in a format that the medicos will get along with in any way shape or form (too many elements I know what is going on, so do not log or focus on). That's what I like about the smart charts: they are standard enough, but also just add that bit of complexity. I think it should do the trick. It is a shame I did not have this conversation with myself and you guys a little earlier to get more days logged this way - but oh well. A fresh week will have to do.

You are right about the met and hypo risks. If I try it and it is effective, the getting on could be a very turbulent time indeed. I have found when my overall basal needs change a unit or two (out of 50) it is hard to adjust - admittedly one is not normally forewarned. I am prepared to go on leave from work to do it if needs be, if it's really problematic. If I can make inroads into reducing my crazy fluctuations, it opens up possibilities for my life.

[xMenace]

You sound very much like me.

"YOU DONT LOOK AFTER WHAT YOU EAT, you probably pig out, eat the wrong things at the wrong times"
- diet plan for at least 5 days (showing a moderate, lower carb, "low GI" kind of approach, with avoidance of excess carbs)
- If they are concerned at a lower carb consumption than standard, I will play up the carbs. (Just try and move over that hurdle "HOLD THE FORT! SPEND THREE MONTHS WORKING WITH A NUTRITIONIST!". If they are concerned at nutritional values, I will keep pointing back to the variety and good choices of my diet.

Diet could be a real sticking point. It might be best to review the main reasons for lower carbing. You want quick, point blank irrefuttable answers to questions:

- bad for your cholesterol
- you need carbs for your energy levels
- you need fibre
- not healthy in the long run
- studies show people don't stick with it
- many more

Focus on the insulin.
- insulin is directly related to carb intake. I'm taking N units a day which is PROOF I'm getting enough carbs.
- insulin is THE fat storage hormone. Insulin stores fat including in my artery walls. It's in my best interest to minimize my insulin usage. Period!
- if they pick at cholesterol, list off its benefits and ask why you'd want to reduce it?
- WHEN they pick at your LDL and Tryglycerides, give em the carb-VLDL treatment.

It won't work though. They are real thick-headed about what they "know" to be correct, even if they can't explain why.

You might arm yourself with some relevant low carb articles, but only use them as a last resort. They'll shrug them off as "internet bull****"


"YOUR BASALS ARE CUCKOO"
- A quick explanation of the repeating systemic fluctuations I had on long acting or only a couple of rates: building a case for the basal complexity I use (which has improved my life a lot)
- Basal testing results (don't know if they will be up with basal testing, am working on a persuasive way to present them).
- on the phone I mentioned my difficulty with docs trying to cut my 12+ rates down to 4, and the answer was "well sometimes we want to be neat about it". I want to be ready with this argument, and have a way to nicely point out that between numerous but effective, and neat but innefective, I'd like it if we could put the neat option further down the list.

My basals keep me flat without food. I go to bed with complete confidence I won't go hypo in the night. I drive home from work with complete confidence I won't hypo on the way.

I have basal tested extensively!

"I don't know what basal testing is." or "I don't believe in it."

So you want me to set my rates to what you GUESS I need rather than to what my meter tells me I need?

If it goes further, go postal!

"YOUR BOLUSES ARE ALL OUT OF WHACK (BOLUS AND CORRECTION)"
For these, it is hard to pin down data that they are indeed in ballpark and not a point of problem as such. (Or, that they are an isue, but that it cannot be solved to much more satisfaction with simple pump tweaks).

Maybe I just concisely mention a list of issues I need to work around with my approach (have the best I:C possible, wing it from there) with points such as:

- bolus absorption problems (slow boluses help, but don't solve)
- Different times of day with different resistances, that can change, requiring me to be aware of it, no way to program into the pump.
- Variable sets, and slowness (up to 8 hours) for them to start working,
- Extremely heightened resistance if I go high (needing far beyond just an adjustment of ISF... needing manual intervention of dose, and a battlefield of half a day or so)
- And I guess I need to work out some basic BG results through a day or two, in order to illustrate there is some hit rate of successful boluses.

This is a tough one. Perhaps try eating the same meal every day for a week and keep detailed records for them. You can even plot them out on a graph. Msg me if you want to try my spreadsheet from ****. A nasty pile of paper realy puts them on the defensive.

And the whole point of this would be so say "Hey, yes things are not perfect, but everything I do shows there is no perfect setting for me, hence I want to look at the potential root of my invariability and high insulin use!!"

I think dealing with an open minded endo for anything is crucial, but don't expect any of them to be liberal with insulin sensitivity meds. Mine isn't.

An endo won't bother you about your diet or your rates. He'll see the A1C and be happy. You don't get time to discuss everything you want to. Stick to your resistance topic and keep at it. He'll try to shrug you off with the "that's the way it is" rebuttal, but keep pushing. Ask him specific questions like "would Amylin help?" "how about metformin?" Be ready to ask why or why not. Try alternative approaches until he kicks you out.

[xMenace]

The last two days have been perfectly illustrative as yin and yang. At lunch yesterday I had spinach, 2x small bacon, 1 egg, small serve of mushrooms for lunch, and bolused for the very small amount of carbs involved (maybe 6g). I moved upwards by 180 mg/dl within 2 hours, (hitting 270 mg/dl) "apparently" from this meal. It took 6 hours to come down: longer because I was "playing it by the book" more than usual (in the attempt to make it more loggable). I suspect this whole event was partly was from a basal fluctuation of IR (or a strange liver dump, no reason I can think of...) and the stress of driving to work in traffic. But I do not know, so I just put it all down on the chart and they can look at it as an illustration of craziness.

Today I had the same lunch with 2 pieces of wholemeal toast. I don't usually have normal wholemeal bread or 2 pieces, but wanted to illustrate the possible effects of it. But anyway, I only went up by 36 mg/dl (hitting, 144) returning to pre prandial by 3rd hour. No hypos. My basals were shown to be effective today. Later on a dentist visit threw some IR into the mix causing a high... and seeing that I'm alive, there were of course other factors going on today... I've logged them simply, but enough of it hopefully a reasonable illustration that my settings are there for good reason - when my body is not playing strange funny games, they work.


Hormones! Glucagon is a big pain in the *** for me right now. I too find it hard to get consistent results. My endo tells me that they are considering adding glucagon to insulin for artificial pancreas trials to smooth out our reactions. What were your breakfasts these two days? I bet you had a smaller breakfast when you had the bigger spike.

Consider bolusing for protein. Cyborg has some tips somewhere on this site. I've been doing it, but I don't have a system worked out yet. I find I have to now bolus for it. Your DE will go likely ballistic over this concept.

[Subby]

Thanks for the input John. Some interesting things you raise to for me to consider, visit and re-visit. Now, for this DE visit, I will keep honing my "redirection skills" as best I can... :evil:

[foxl]

Come on, Subby! We know you can do it! (said in my best bratty "Dora the Explorer" voice).

BWA HAH HAH. The DE's head is gonna spin like Linda Blair's in the exorcist.

[Subby]

Well, success, I think. I finally found a diabetes professional who was sincere and didn't just run back to generalities or brush difficulties off. Yes, there was a lot of head spinning Linda... not just hers, mine just as much, in trying to navigate to the bottom of the multi layered issues as they came up. I felt like I was a lawyer a few times trying to hold it together. But she listened and at least gave the genuine impression she understood a lot of my stupid issues, understood my basal approach, and accepted I was doing what I could, considering the circumstances (rather than being a bad, non compliant troublemaker!).

And accepted that I too want improvement, for real reasons, not only to improve BGs but to avoid so much management and daily health affects. (Rather than that I'm just way too involved for perfection's sake, and should relax man!). Really, I was very impressed that she listened and reflected, and understood the ramifications that I may not do anything the "best" way, but that there are compelling reasons for the way I do them, and I want to move forward from there, not useless deconstruction like in the past.

So, letter to my GP about Lev being ok to use, so I can have a pump holiday any time now. A few days with CGMS lined up in a week or two. Tracking down a good endo who should consider met and the like, a whole list of them in fact. It feels like luxury...

Thanks guys. All the feedback was in my mind. The charts with short notes were invaluable, I had a really bad week, bad sets, bad IR, crazy results, which in some ways I was very happy with, (!) simply because it provided lots of examples when things go wrong, a lot of material to present this case and that case. Of course that ran the gauntlet that the impression was it's just all up the creek all the time anyway, but there were a couple of good days to contrast, and my A1cs to back that control does occur, up. (And a sense of trust, which was much appreciated).

Have to thank my mother too... she suggested I keep re-orienting back to saying I want assistance to "look at the big picture" - a great tactic, when things got too bogged down.

I'm exhausted after that. I don't think anything takes it out of me more than dealing with such things...

[Lizzie G]

Hey Subby

I was looking out to see when you would post an update on your visit; im so glad it was a positive experience, thats really refreshing to hear, maybe these DE's are a good thing afterall!

Let us know how you get on with your quest for a new endo and how the metformin suggestion goes down; 'double diabetes' is one of the few areas where the tabloid press are more in touch than the medics - i think it is something that endos arent so inclined to think about and i'll bet there are a lot of people diagnosed type 1 who would benefit from a bit of 'thinking outside the box' from their doctors.

Liz x

[davef]

Subby,

I'm delighted for you mate, sounds like you had a really good meeting and have made some progress towards your ultimate goals. Really good to hear that the DE listened (learned) and worked with you. I always think that half the battle is won if you have people who will listen and work with you rather than trying to ram their views down your throat.

Good on ye. Best of luck with your Doctor and hope you get a good endo soon.

[foxl]

Sounds like a VERY promising appt, Subby!

And I am making a mental note on the re-direction to the "big picture!" -- thank your Mom for the tip!!! (I use that strategy with teachers, somehow never generalized to MDs, where it is clearly a helpful tool!).

I am developing a "resume" to take to the endo a week from Monday ... trying to keep it to one page, and organize it. My header is, "what I want from this appointment," includes ,meds, history, and addtl testing to ask about.

[zoelula]

You did good, Subby and it sounds like you met with an intelligent responsive person who was able to listen and absorb. For myself my tendency is to overwhelm people with information and then I as well as they tend to lose track of the goal and it's easy to put professionals on the defensive. I agree, Linda, with the one page summary. Especially with ****ed managed care to be catered to, the clock is always ticking and concise is best. The thing my endo in Guatemala responded best to was my five point list of why I believed I was LADA. She looked at it and nodded as she put a check mark next to each item. There was a whole lot of thinking and talking that went into that list, but I summarized it in five clear points and she liked that. Good luck with the endo, Subby (and Linda).

For myself, right now I am happy to not have a lot of doctor needs. My brother kept asking if I got a referral to an endo here in California. I said what for? My niece too told me to "listen to the doctor" (cute). But right now what I'm doing is working so until that changes I'm good with having someone write prescriptions. (In Guatemala I didn't even need that, just go to the drugstore and ask for what you want...but then PAY for it!

Good work, Subby! For people like yourself and Linda sometimes the goal is to hold back a bit of that shining intelligence, just revealing a bit to show you are not a slacker.)

[Subby]

Zoe, as long as you can get some regular checkup tests done another way, (I get mine through my GP, myself, I will be shattered when he retires... probably soon) I think not having this constant endo need in your life during a time when you are humming along with things, is perfectly valid. I think the question "What for?" is a very appropriate response to your family... and who knows, there might be a good reason... ("Because you keep calling me up in the middle of the night, delusional and hypoing!" might be a good answer.... :) )

It's funny you should mention those simple, point form summaries, I often start on them, then they get bigger and more complex... whoops. This time, my point form slowly turning into paragraph form into... getting complex, so I just stopped and printed as they were. I told myself I would only fall back on it if things really fell apart... and to try and keep it simple and verbal. That worked with someone receptive (and the printed notes were good for me to refer to for myself and her, a couple of times, for clarity). Next time, and with the endo (less time, less inclination to natter) I want my short points SHORT POINT FORM, dam it.

As for holding back the so called "shining intelligence" and not rushing them with info, well, I got the little voice in my head as I was waiting to go in (maybe it was you!) to hold back and not just present complex issues up front. And I managed to, and it worked better that way. If someone gets their own point of view across first, like "I would have thought these basal rates are too complex", or "why do you say THIS happens?" you can then say "yes, and I'd like simpler rates, but... this is the approach I have come from, and here are the difficulties or negatives I've found in making them simpler" and the conversation can go from there. I think you are bang on target, Zoe. Holding back is a tactic well worth developing if you're a more intense person like me. I wish I'd gotten my head around that a lot earlier in my life. For some this kind of thing comes naturally. For me, in this situation, it's HARD to hold back.

[foxl]

Well said, Subby, and dead-on.

And thanks, Zoe, I agree; a bit of restraint is more in order than a brain dump!

[shiftzor]

Having finally got to the end of this thread my initial reactions where to find a yes GP and Endo which is what I have right now, however I am happy you found a better Endo. I sympathise with the mathematical approach by many doctors as they work with little information unless you have extremely compressive logs. Even providing extensive logs often results in Endos not having enough knowledge to help.

I had one Consultant look over my records and he excitedly offered me a pump. He asked few questions just knowing that it could help me was enough for him. I just wish I could see this Consultant more often as I could probably learn a lot, maybe Endos just don't paid enough unlike Consultants.

[zoelula]

Hey, Subby, I'm close to twice your age and it took me most of my life to get that my intensity overwhelmed people!!

Nope, no middle of the night hypo delusions. I drop below 60 occasionally, pop two glucose tabs and am good to go.

Been having some highs after breakfast though. It seems like most of us have a lower I:C ratio for breakfast and the general consensus seems to be that's from DP. But I don't think I have DP because my fastings are nearly always under 100. So what is the mechanism that makes people without DP able to eat less carbs (have a lower I:C) for breakfast? Scientific minds?

Speaking of tests, I got pretty spoiled just popping into the lab any ole time and paying about $16 for a test I wanted and then going back the next day for the results. I know labs vary but can someone give me an idea what an A1C and a C-peptide cost? I have 80% lab coverage, but I know that even 20% can add up. I'm trying to decide how often to test.

[AngelKitty]

Hey there Subby,

Glad to hear you're making some progress on medical support!

If it bombs (which I hope it doesn't) let me know, can recommend and excellent DE and an excellent Endo as well - these two helped me immensely. So that can be your Plan B if you like ;)