Do I have to do it all myself?

I've posted a couple threads lately where I really needed input, this one is just food for thought.

So many of us take it as a given that we know a lot about D, if not more than our "professionals" and that we are the captains of our own boats for D care. We do, though, range the gamut from those who rely heavily on their professionals to those like me who think a good quality in a doctor is that he "not bother me too much" and everywhere in between.

Recently I found myself thinking that I need to remember not to let this attitude bleed over into my other medical needs where I'm not nearly so knowledgeable. Or maybe I should?? One example is when I mentioned in another thread I had an allergic reaction to a cardiac med. The cardiologists office was already closed and the Pcp said to just stop the med altogether, when I already knew it needed to be titrated to be safe. I chose to replace it with another med I'd taken previously, without getting the first out of my system and was a bit nervous about it because I was out of my comfort/knowledge zone.

On the other paw, I'd recently figured out something about those cardiac meds. I've been tried on many many meds for my arrhythmia, some of which worked for awhile then stopped, most of which didn't work at all. (I thought). Then I went off one Bystolic and started another, Verapamil and my symptoms immediately got quite a bit worse. This had happened before and when I told the cardiologist, he said (nicely), "It's quite likely that the med doesn't help you, but it's pretty unlikely that it would make your symptoms worse." Finally, I figured it out: The Bystolic actually had been working, cutting my symptoms just not completely and so I thought it hadn't worked at all. Once I saw it contrasted with another that really didn't work for me, I got that the Bystolic had been working, maybe 40% decrease in sx. I told the cardiologist my theory and he said it made sense. Now, helped along by the allergic reaction I'm back on the Bystolic and we will slowly raise the dose to see if I can't get more relief. Good. But my question is, when I kept saying various meds "made my symptoms worse" instead of saying that was unlikely, why didn't the cardiologist say, Hmm, "do you think maybe the previous med was working some, so this one seems less effective by comparison?" After all, he has dealt with multiple patients with similar issues and I have just dealt with one! Come on, guys, do I have to do it all myself?! I'm paying you, even if only 20% for your expertise!

I'm not asking for feedback on the specifics of my med issue, but just in general how does your "being my own doctor" bleed over into non-D issues or do you not let it do so?

I definitely have strong opinions concerning the proper treatment for my T2, that are out of the mainstream, ie. low carb etc. So I tend to defer to my Dr.s opinion on other things.

But for me it raises another question, do Dr.s and other health care professionals routinely offer outdated or wrongheaded advice in other areas. Some of the advice tuD members have been given concerning diabetes makes me doubt the advice/standard treatments in other areas.

My research into D. treatment also has made me aware of the number of ambiguous, poorly designed, misinterpreted or biased studies upon which treatment decisions are made everyday.

This brings to mind Steve Jobs recent death from pancreatic cancer. As I understand it he rejected conventional treatment, which probably could have at least prolonged his life in favor of alternative treatments, until it was too late. I guess all you can really do is hope for the best.

i dont have any other serious health problems (touch wood) but its a good question about if theyre giving us outdated advice about other things. scary thought. ill be doing my homework if anything else goes wrong with my body...

Well put, badmoon. Our experience with the gap between what we know about our D and what some doctors put out definitely makes us take pause and wonder what else they don't know (or don't tell us, out of some misguided belief that we are better off ignorant).

As for studies, it took one semester of statistics I was forced to take in grad school to realize you can use studies and numbers to prove whatever you want.

Quick edit: I meant to say "But I tend to defer to my Dr.s opinion on other things."

Zoe, numbers can indeed be slippery things. I was recently working in a database to produce a report at work. I innocently asked Accounting for the % of gross that was overhead, thinking I would quickly get a finite number. After a day and a half of arguing amongst themselves I finally got a range of numbers most but not all of them could agree on. After listening to all the on the one hand - on the other hand arguments, I had to agree it was the best they could do. Apparently even in accounting some things are knowable only to a certain level of precision.

I think that with diabetes, the fact is that there are more numbers than any other disease. W/ cardiac issues, you get a BPM and maybe a wierd tempo on your EKG if something's off. Maybe some brain issues will show up on an EEG but I can't think of another disease with the volume of numbers we have. With diabetes, not only do we have numbers but we are living with them, in a way a doctor, even a T1 doc, isn't because you can sort of only live with your numbers, unless you are a parent, in which case you have to live with junior's numbers?

Great response, Sally, and good work on looking to find a new "director" and team. I'm always happen when I hear a humble open attitude to start with.

Ooooow, this is a good one!!!!! so glad you brought it up.

i am a paranoid schizophrenic with Bi-Polar and OCD disease.( its actually called "SHIZO-AFFECTIVE Disorder including OCD (obsessive compulsive disoreder) i have been diagnosed since college and have seen the insides of sooo many psych wards of which all have put me on certain meds. once they began to work, i would be released and sent home. my parents would see me as being cured, and they would tk me off my meds. obviously, it wasnt long B4 i got ill again.

now, as an adult, my parents are no longer my guardians, but i play havock on myself often enough: the side effects (which also effect my BSs) are so miserable, i dont often know which is worse: the symptoms or the side effects. from time to time, i micro manage my own med system, much to my doc's dismay. but after so many yrs battling these diseases, i feel like i know my body best. the catch is this (exactly what i heard you say) the meds make me feel better, so i think, like an idiot, that i am cured. so, therefore i can cease and desist my meds. but of course, this is obviously not so. the reason i am feeling well is b/c of the meds themselves. when will i learn????

please dont be your own doctor! i understand about dealing w/ the D. but other medical issues r much different and we are not specialists (even though our EGOs would have us think so)

good luck.

It's good to have an understanding of what's going on, good to ask questions, good to volunteer info and offer hypotheses (you might trigger the doc to recall a tidbit of info he wasn't thinking of right then) and good to be proactive about your own care. I am blessed to have a diabetes team for my son that respects my judgment and encourages me to think about handling issues independently. Example: the diabetes clinic instructions say to test for ketones every time Eric is >240. Which is ridiculous, because if I did that, I'd be testing for ketones thrice daily given that we are not able to bolus his meals 20 minutes in advance as would be ideal. So at our last visit, Dr O asked, "So when do you check for ketones?" and before I could answer, he said, "I know we tell you 240, but when do you check really? I said, "300." He said, "EVERY time?" I said, "Yes, because that's the best way to figure out whether the site's gone bad before he shoots the moon." That reasoning was thoroughly approved. As well, the pediatrician has shown he trusts my judgment as "doctor Mom" too... we had a couple of cases of cellulitis related to CGM sites last summer, and the first time, he just prescribed antibiotics and that was it. The second time, he prescribed antibiotics and gave me a refill, saying, "I know you know what this looks like, so if it happens again, just give me a call to let me know and go ahead and refill the script and start treating him. I don't want you to have to wait on an appointment." Sure enough, when I saw signs of redness and induration on a CGM site a month or so after we'd treated the second round, I started antibiotics immediately... and it resolve within days, much sooner and more painlessly than before. It's pretty nice to be able to bypass the waiting room in the pediatrician's office!

Thanks for your input, Daisy Mae. I definitely feel a difference between my D management, which I am 100% confident about and couldn't imagine waiting for a doctor to tell me it was ok to tweak a dose, and other medical concerns especially heavy duty ones like cardiac. I've found my experience with D has made me pretty confident/arrogant but I think that bleeds over into other medical issues only partially. That's just me and I'm enjoying hearing others' takes on this.

By the way, my take on medications and mental illness (from many years experience) is that people do just what you said - stop taking their meds when they feel better and restart the cycle of symptoms. But this is definitely less when they are part of a Recovery Model community and take ownership for their illness and its care. Kind of like the discussion on here I started awhile back about "buying in".

Here's an interesting article from the Atlantic about a new movement in medical care called "shared decision making", which the article says is especially appropriate in cases where there are multiple options and no clear cut choice. Different patients will make different "right" decisions

Quoting from the article:
"This habit of assuming the doctor knows best has created a system where huge numbers of patients aren't getting the treatment they would have chosen if they were fully informed. It also means that hundreds of thousands of patients are going through surgery that wasn't really worth it, and that they wouldn't have chosen had they understood their options."
"Here's the icing on the cake in terms of health care spending: Patients also tend to choose less invasive (and therefore less expensive) treatment options."

Perhaps a middle way is evolving.

The thing that I have to constantly remind myself is that I am not a medical professional. I think I know more about "my" diabetes than anybody else but that doesn't mean that I know more about diabetes than anybody else, including medical professionals. I would hope that the medical professionals that I interact with know more about diabetes than I do but I also hope that the medical professionals I interact with also realize that I am not everybody else that they deal with on a daily basis. I would hope they are able to take my input and dispense adequate care.

My big advantage is that I'm in a very large market and have the luxury to choose. I'm sure my attitude would be different if I were forced to either deal with incompetent medical professionals or to go without medical advice and tough it out on my own.

I think because of my diabetes, I have learned to read and learn as much as I can about other health issues. I now question everything!

I like the article that Badmoon posted:

But too often, patients only hear about one treatment option, the one the doctor usually uses -- and doctors routinely assume they know what their patients want without actually asking them. And in many cases, the doctor is wrong.

When I started having thyroid problems – both in the very beginning and then about 10 years later when the bottom found out, I learned that most doctors know very little about thyroid and levels that are optimal. Kind of like a doctor telling someone running around with a BS of 400 is OK. Last summer, I went to a rheumatologist because I thought I might have Sjogren’s. Prior to my appointment, I found a Sjogren’s message board and like we do here at TuD, I learned a lot about current treatments. When I saw the rheumatologist, I knew he was light years behind current treatment options. I let him do the testing, but I knew that if it came back positive, I would be looking for a different doctor.

I see doctors prescribe Vitamin D for low D levels, but what they prescribe isn’t the right kind of D to get people’s levels up. You can buy D3 over the counter and probably spend a lot less to have something work than what you are farming out in co-pays for something that won’t get the job done.

Sadly, in answer to your question, I do think that we have to do it all ourselves.