YOU Are The Captain Of Your Healthcare Team

Early in my diabetes treatment, I decided that I wanted to seek out other diabetics.  People who had been LIVING WITH my condition.  I wanted to pick their brains about what was working for them.  Too many of us are far too accustomed to just doing what the doctor says, without question.  If you are diabetic, this is the worst possible thing you can do!

You see, diabetes is NOT a one-size-fits-all condition.  And neither should our treatments be.  If a doctor tells you that they are recommending you do a certain thing “because all diabetics need this” – I suggest you RUN, do not walk, but RUN…to a different doctor!  A lot of the old advice given to diabetics has proven to be wrong and possibly even harmful.  I will speak more of this in separate articles, since there are many areas in which the standard advice given for many years has now proven to be not the best course of treatment.

I ran into this problem with my endocrinologist.  She seemed REALLY HOT to get me on insulin.  Something in me just rebelled.  I do not even know, to this day, exactly what it was.  At the time, I did not know the extremely high cost of insulin, so that wasn’t it.  I think it had a lot to do with the literature and anecdotal evidence I had been getting, that many Type 2 diabetics can be on oral medications for YEARS before needing insulin…and some may never need it at all.  (I should note here that my endocrinologist and I worked this out and she is still my endocrinologist.)

Now, I must state something VERY IMPORTANT here:  For Type 1 diabetics, insulin is a life-necessary thing.  They must take insulin, because their bodies do not produce insulin of their own…or do not produce enough.  Type 2 is a different animal:  Our problem is insulin insensitivity.  We make enough insulin, our bodies however do not utilize the insulin we make.  So how do you know if you are Type 1 or Type 2?  A C-Peptide test will tell you this.  C-peptide is a substance produced by the beta cells in your pancreas, the same cells that produce insulin.  In fact, your beta cells produce proinsulin, which splits into one molecule of insulin and one of c-peptide.  Because they are produced at the same rate, c-peptide is a good marker for insulin production.  A person with a healthy c-peptide level is producing enough insulin of their own, and therefore is not Type 1.

Because I am Type 2, and 85-90 percent of diabetics are Type 2, most of what I will be sharing pertains more to Type 2 rather than Type 1 diabetes.  Type 2’s have to be far more careful of their diet that Type 1’s, who can simply give themselves an extra unit or two of insulin to counteract extra carbohydrates in a meal.  (A Type 2 who uses a fast-acting insulin could also do this, so this statement refers more to Type 2’s like myself, who do not wish to be insulin-dependent.)  I will talk more about carbohydrates, and their role in diabetes management in another article as well.

Getting back to being the captain of your healthcare team, this is very important!  This does not mean that you do whatever you want, regardless of what your doctors say.  What this does mean is that you operate on an equal level with your healthcare team, but you make the final decisions concerning your treatment.  After all, your doctor is not the one that is going to have to sit in the dialysis chair, or the wheelchair that YOU will have to sit in if you do not avoid the very real complications of diabetes!

Being on an equal footing with their doctor is not something many Americans are accustomed to – they are used to just doing what the doctor says, swallowing what the doctor gives them to swallow, and not really asking any questions about the actual treatment.  They are used to being GIVEN ORDERS, being lectured to, or being frightened into “compliance.”  My doctors do not give me orders.  My doctors give me guidance and suggestions.  They give me support and monitoring.  If I ask them the reasons for suggesting a certain course of action be taken (or not taken) they will tell me.  And then I will take the information and decide.

I do not accept the “standard diabetes treatment.”  I accept what works for me, based on the numbers I actually produce.  I also believe in taking the least invasive course of action first.  (It should be noted here, too…that what works for me may not work as well for another diabetic…or may even work better for that diabetic than it does for me.)  I do not believe in taking the most medication-oriented treatment option when other options have not even been tried!  And I made this very clear to my healthcare team early in my treatment.  I DO take Metformin, incidentally.

I told them what my goals were, and took their input on whether or not those goals were reasonable, and adjusted them accordingly.  I told them what methods I wanted to try – in order to achieve those goals…and more importantly, what methods I did NOT want to use.  Insulin was not something I was willing to try straight out of the box.  I felt there were better, less medication-oriented approaches that had not yet been tried.

I started out, on diagnosis, with a fasting blood glucose of 388 and an A1c of 13.2 – these numbers are horrible!  For perspective, a healthy person should have a fasting blood glucose of 70-110 and an A1c below 6.0 (the standard the American Diabetes Association sets for diabetics is an A1c below 7.0 – and I will discuss that in length in another article as well, as I do not believe that is sufficient enough a goal to have.)  At the time of my diagnosis, I weighed 304.5 pounds.

As of this writing, 4 1/2 months after diagnosis, my morning blood sugars tend to run usually in the high 80’s to low 90’s…occasionally, I get a reading in the low 100’s.  My A1c at diagnosis plus two months was 9.2 – a four point drop in two months!  I expect better results next time I get the A1c test in September, at diagnosis plus five and a half months.  In fact, I just now this morning pulled a reading of 96.  Also, I now weigh 246.0 pounds, a drop of 58.5 pounds since diagnosis.  I will detail, at length, the methods I am using to achieve this in another article.

My goals, I explained to my doctors, were as follows:

By July 1, 2016 (Diagnosis plus 15 months) I would achieve the following:

  1. I would be below 200 pounds.
  2. I would have fasting blood glucose readings in the health 70-110 range, preferable below 90.
  3. I would have an A1c below 6.0
  4. I would be off all medications related to my diabetes
  5. I would achieve this through diet and exercise, not insulin

My doctor told me that and A1c below 6.0 was something that could be achieved, but recommended my goal to be below 6.5 – because below 6.0 was going to be very difficult to achieve, and he did not want me to be disappointed if I got a reading of 6.1 or 6.2 – which he said he would celebrate!  And so, this is mind, I revised my goals to reflect this.  This is the kind of give and take that exists when you have an equal relationship with your healthcare team.

Never be afraid to ask your doctor about your treatments, or why he/she recommends for or against certain treatment options.  Remember that it is your body, your health, and your life!  They are not the ones who will end up in the dialysis chair or a wheelchair when and if you develop complications from diabetes!  Remember that you will be on this journey, with a doctor, or rather, a team of doctors…for the rest of your life!  So you need to have a team that you are comfortable working with.  Don’t be afraid to leave a doctor and find a different one if you are not comfortable with your current doctor.

My current healthcare team consists of my PCP, an endocrinologist, and a CDE (Certified Diabetes Educator) who is also a dietician.  I may also need, at some point, to add an opthalmologist and a podiatrist to the team.  (Actually, the opthalmologist I WILL need to add for sure – diabetic retinopathy is NOT something I want to have happen to me!)  And my PCP is the person to whom ALL the information flows…and from whom it is distributed to all other members of the team.  Ultimately, however, I am the captain of this team, and I make the final decisions.  I am the one who will reap the benefits, or suffer the consequences.  I have my goals, and I have the means I wish to use to achieve them.  If my goals are not reasonable, or I am thinking about a course of action that might not be good, a member of my team can tell me so…but also tell me WHY.

And then we discuss it, and I make the decision.  Anyone who cannot play this way simply can’t be on my team.

Until next time!

-Angela

2 thoughts on “YOU Are The Captain Of Your Healthcare Team

  1. Very well said, great advice …… Captain Angela! LOL very proud of you, very inspired and way to take charge. It is your life and you own it nobody else……….!

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  2. I did not used to be this way, Sally, where doctors are concerned. I had to learn. I got a lot of help, support and knowledge from my friends – my real-life friends like you, and my online diabetic friends at Diabetic Connect…as well as many educational articles about diabetes from many different respected and peer-reviewed sources. It was certainly a new way of doing things for me.

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