Diabetics or Medical People

I don't know about other places, but in South Dakota, we still need to have a doc or PA sign off on all meds and medical care. I also believe that in many instances, people with a disease like diabetes know more about it, personally on a day to day basis than physicians or medical people do. So here's my question, I have a plan in place for treating my diabetes that works. It was put together by myself, with the knowledge and acceptance of my medical/diabetic team. It includes nutritionist, diabetic coaches, docs, (all four of them) nurse, physical trainer. Twelve years ago when I was diagnosed I wouldn't have thought that I would be this into know what to do on my own. But now I see that if I am to work through this and stay healthy, I have to have this team together. I also realize that this is although a "group" disease where many people have what is called diabetes (with or without numbers) my diabetes will act differently, I will react differently that maybe even a sibling or another diabetic. So when you have to have knowledge or have meds or make decisions, who do you go to first? A medical professional, another diabetic whose opinion or recommendations do you take first and foremost?

The only "medical" person who has ever given me a scintilla of decent advice was a podiatric nurse who collared me in the hall and told me (against regulations) not to follow Kaiser's high carb diet. She told me about Dr. Bernstein.

I come here first. When I first started seeing highs, I'd be out of commission for the rest of the day from a 150. So I asked my friend, who has T1, what she thought of that, she said I would absolutely feel it if I wasn't used to numbers like those. My endo told me those numbers were fine.

As much as I love my endo, I only trust his opinion on my numbers to a point. I'm grateful that he gave me a diagnosis when no one else would, and in general he really knows what he's talking about, but he ignored the signs that something was really wrong too many times. He's a gem, and when he retires I don't know what I'll do, but I trust the people here, who live it, more than I trust him.

Definitely I come here, or read other sources, then I see what applies to me, and integrate new information into my growing body of knowledge about MY D. I don't expect much from doctors except for them to write my scripts. When I lived in Guatemala I didn't even need them for that.Here's an example:

I ordered a new Test Strip prescription online. I've been getting 900 strips for 3 months since I return to the U.S. 4 years ago (1.5 years with my current doctor). Since he is at a busy clinic I called the nurse to say he would be getting a fax request and to be sure and make it 900 strips for 90 days. When I looked online it had already been sent out for 300 for 90 days and I was charged my copay of $100! Luckily when I spoke to Caremark they said my insurance would allow them to request another script from my doctor and only charge me the $100 and I could keep the extra 300 strips. Cool! I went to the doctors and wrote out the instructions for my doctor. It makes me long for Guatemala where I was the one dictating amounts, doses, lab tests, etc. I got a call from the office saying the doctor wants to know "why I need so many test strips". Geesh! Why is it such a struggle to take care of myself?

People on here know and they understand. Knowledge and understanding - available here, not from any medical staff I've met. YMMV.

I appreciate my endo, who lets me test 10x per day with no questions asked. (I don't usually use it, but I need to know I have the extra test strips if I need them, for one reason or another.)

Maybe I'm just more annoyed with my endo than usual, since it took him more than three years to admit that I had insulin resistance when I'd been complaining and asking him about it for every bit as long.

I guess in some ways I feel I'm better off in that I don't expect anything from my doctor. (Other than prescriptions - and 1/2 the time he or his office screws that up). Every once in awhile he seems to feel the need to be useful, but he'd do better if he stuck to non-D things. (and I'd be less annoyed because any D interventions from doctors are, to me, just a distraction.

I like to have an endocrinologist for a limited list of tasks. I want the doc to write scripts and monitor my liver, kidney, thyroid, and lipid tests. If I'm concerned about any diabetic complications, I'm hoping to get good info and advice on that, too.

What I don't want from my endo is any food or insulin dosing advice. I use a limited carb diet and I don't want to hear about a "balanced diet" or any of the usual nutrition dogma. I think my current endo respects the numbers I bring in and chooses to leave well enough alone. I'm impressed that the endo office downloaded my meter, CGM, and pump. The pump download is a first for me.

The source of the big gains I've made in my diabetes care has been primarily this and a few other sites (DiabetesMine, diaTribe, Life after Dx). I've also done research using other sites that have helped provide confirming and background info.

Diabetes is really a patient centered treatment disease. If the patient doesn't take ownership of his/her health then the doctor will have very little influence.

I have more time (24/7/365) with diabetes than the doctor has had in their entire career including med school, internship, residency, actual practice time, and continuing education credits. While my body of knowledge overlaps some of the doctor's knowledge, my expertise in day-to-day BG management overwhelmingly exceeds the doctor's experience. To the extent that I believe in the medical "team" approach, it'll only work if the medicos accept my role as the clear and unambiguous captain of the team.

For knowledge and meds?

As far as trained professionals go, I'm lucky in that I live in a place where I have a lot of options. I've availed myself of the opportunity to look for knowledgeable professionls who are a lot smarter, trained, and experienced with diabetes care than I am. You're right, I know a lot more about my diabetes than anybody else but that does not mean I know about diabetes more than the professionals who I consult.

That also doesn't mean that I have not chosen professionals who understand tha the primary responsibilty falls on my shoulders, not theirs, so when I suggest a managment strategy or approach, I would hope that the professionals incorporate my experiences into their plan.

So far so good.

However, it's one thing when everything is going smoothly and I'm standing securely on top of the pile of diabetes underneath me. It's another thing when things do not go according to plan, like the diagnosis of microalbuminuria or retinopathy with DME. I might opt to consult the internets or other diabetics when it comes to dealing with these things but, ultimately, like we said, we know our diabetes better than anybody else but we have hired, and pay people, to take on the responsibility of dispensing vital services in our support.

So, when it comes to dispensing proper medication for my conditions, or deciding if they are going to have to conduct laser surgery or a vitrectomy, I can ask for advice from as many sources as I want, but somebody has o tale on the responsibilty of providing the services. If I can't trust the professionsls, I'd just better hope I never need their services.

Since I'm probably at one end of the continuum of how much I seek out or use medical personnel, I have to add I agree with a couple of you who have said you want an endo or other relevant specialist to deal with non-routine management issues. Just like I consult specialists for some non-D issues, I would seek out an endo or an ophthalmologist as appropriate if I had complications or special needs.

LOL honestly for me...a lot of times I go to my endo appt, and just smile and nod my head, and go home and do my own thing. I have let my a1c go up just a TINY bit from 5.5 to 6 just to get the endo off my back some about the risk of too many lows. I'm ok with that, more than anything I just wanted to see if I could do it. A lot of times with the nurse educator, she wants me to run a bit higher than I want, and as soon as she's made her suggestions, screwed with my pump, as soon as I'm out the door, I put it right back to where I had it. I don't think she particulary LIKE the fact I mess with my own basals...but I'm also a nurse myself with close to 30 years personal experience with this. I only see the nurse educator about once a year anyway. If it was up to me, and I could be on these newer insulins without a prescription...I would be. I don't get much from the doc's that I don't already know...or honestly I think sometimes they are a little more conservative than I want to be. But alas if I want to be on the newer insulins and want my pump lol I have to behave somewhat. I get better information on here I think, and managing tips that I've tried...than I've ever gotten from a Dr. I went and had an EGD and the nurse anesthesist was cool asking me to show her how my pump works,,,just in case, and it was totally no issue having it on during my exam.

Hands down - other diabetics. I have to qualify that by saying other diabetics with years of experience who have lived well with their diabetes. When my son was first diagnosed with type 1 in Aug. 2012, I read everything I could. I was particularly influenced by Jenny Ruhl and Bernstein. I was fortunate enough to have discovered this site early on, saving my son perhaps years of mistakes in managing his diabetes. Other people on this site have already done intelligent analyses on diabetes research so I didn't have to invent the wheel so to speak. I have a pretty low opinion of the medical profession in general, but in making a blanket condemnation I realize there are some excellent medical professionals out there.

Other PWD, no contest. I estimate that I learned 1% of what I know about diabetes from "professionals" and 99% from self study and this community.

Doctors are taught to treat and cure acute illness. They are not trained in day-in, day-out management of chronic conditions. That's not a disparagement of doctors, it's simply a fact. The average doctor spends 1 or 2 days in school learning about diabetes. We spend our lives with it, all day every day.

I go to my favorite web sites, seldom my friends as they are poorly controlled , my endo is great also has diabetes and knows what living with diabetes is like. I am Interested in something…what is a diabetic coach? thanks,Nancy

It is rather a new professional in our area. He/she is a certified nurse with additional training in the all aspects of diabetes and care. Mine is a wonderful guy who is a nurse, has worked in many diabetic clinics and hospitals with patients that have their "D" under control, have complications, changes in meds that need to be checked daily or at least weekly; he also works as a holistic nurse in that if there is something I can be doing to get better control of my "D" that isn't a med or medical problem, we will look into those aspects of it. He has extensive training in nutrition, and how different foods might affect me not just an one type fits all answer. One of the things he has help my dh and I figure out is our eating schedule. DH works nights and so doesn't eat a BIG meal before going to work; I am on a regular schedule with life, we had the worst time putting these together to work for both of our "D" situations....we have since worked that out and with the number of carbs that both of us need. Another thing he has helped me with is losing weight AND following a low carb plan. It sounds like it should be easy...but for me it wasn't, I fight for every 1/2 lb I take off. So what foods can I eat at what time of day at what amount that will keep "D" in check and help me to lose weight, Happy to say, I've lost 86 lbs thus far, and my numbers are great! We are very lucky to have one of the pilot programs in our area for Diabetic Educators, as we have two small hospitals and are in a very rural area.