The last few months I have been pondering going on a shopping spree. Not for clothes or furniture but doctors. Why doctors? Good question. It comes down to one issue. Faith. I am loosing faith in my current endo doc. Can’t complain too much but I do feel that she has reached the point of no return in my journey and I need a change. This may take me little bit to explain.
OK first, she has admitted to me that she is ready to pull her hair out. I can see the frustration as she looks at my charts and wonders what direction to go or different treatment to try. It’s not that she does a bad job. She tries. Its more that everything she is trying with me just isn’t working.
I have issues with low sugars. All diabetics do you say. Mine seems to have gone to the level above the next level. Most people and even more diabetics run into what is called insulin resistance. I, it turns out, have developed an insulin sensitivity, their words for it. Over the last few months we have run several tests to verify exactly where I fall in the diabetic world.
First test was to see if I was truly type 1. I am with no doubt a type 1 since my body makes no insulin on its own, the test proved that. My immune system targeted my own beta cells,the insulin producing cells in a pancreas, when I was 8 years old. They didn’t wear out or slowly start shutting down. My body killed them off quickly, hence no more making my own insulin.
The second test was to see if I had developed insulin antibodies. That was a less normal test but it again came back as no joy. I do have antibodies but they are not binding. It was explained to me that sometimes people, that would be me, develop antibodies that fight other cells, like insulin. Just like your body defends itself against in infection it can turn against itself and cause horrible problems. Insulin binding antibodies will bind to insulin which will prevent it from working. Later, at a moment of its own choosing, it will dump that bound insulin back into action which will cause bad things to ensue. Mine doesn’t bind like that.
Where do we go next? Diet was the next stage of trial and error. I eat around 2800 to 3400 calories a day. Hey get off my case, I’ve been eating like this for about 20 years and although I am far from thin, I am not morbidly obese as the BMI says I should be. I eat around 260 to 320 grams of carbs each day where they say a normal diabetic should only eat a max of 150 grams.I was asked to try a diet called a ketogenic diet. For those not in tune, it is all fats and proteins with little to no carbs allowed. I was highly skeptical it would work. I would need carbs to bring my sugar back up after it would crash and I do admit to having a sweet tooth.
I said no after doing my own research on this diet. Most of the info I got was delegated to type 2 diabetics and one even said it was not recommended for type 1 as this diet forced your body into making ketones in your blood. I learned that if you ate carbs at that point the glucose made by them would form a compound in your blood and trigger a possible, repeat possible ketoacidosis episode. Very bad for a diabetic, well anyone really.
I saw another endocrinologist at the request of my regular one to get a second set of eyes on my case and see if she had missed anything. This new one also talked about the ketogenic diet but said I was not a good candidate as I was too active. That diet was more sedentary people like office workers. I am more to the other end of that scale. We talked it out and I am currently trying a lower carb higher protein/fat diet. It has made very little change so far but still there is a slight one. I still need to eat at work once at around 1am and again between 5 and 7 am before I leave.
I believe my metabolism is higher than they think it is. I have watched my CGM (continuous glucose monitor) drop all night unless I eat. Then it jumps up but comes back down slowly over the next few hours. The interesting part is it keeps dropping after the 4 hour half life of my short term insulin is over. That means the long term insulin is making it drop. We had been cutting the 24 hour insulin to keep it lower but then it flies sky high in the morning after I get home and sit down for a while.
I tried a pump with limited success but decided it was not worth extra hassle of infusion set changes and being careful for an $11,000 pump. Ripping the infusions set off is a good one for me. Didn’t do it to this last one but years ago I did it many times over close to a year. It also is sensitive to magnets and microwaves like a pacemaker. Without it I don’t worry anymore.
Here’s where my issue with my current doctor comes to light. She agreed that I could stop using it but when we talked about what treatment plan to follow next we had different opinions. She wanted to go back to a previously tried 24 hour insulin, which I pointed out advertised itself as staying in the system for up to 42 hours, and instead of the 7 units I had tried before increase it to 25 units. Someone must not have looked at her crib notes on me. Go back to an insulin that did not work before and increase the dosage. Great plan.
My plan was to go old school. Old school such as back years ago and use a 12 hour insulin instead of 24 hour and take it twice a day. It would allow changing the dosage from day to night and being stuck with one dose for all day. More in the morning when I get home and my sugar level rises and a lower dose at night when it drops and I need less. The second opinion doc agreed. I had already stopped the pump and was using an old bottle of NPH insulin to get started on this plan already. We had been arguing about this issue already for over 3 weeks. I did my research and was close to where I needed to be but we are still closing that magic number. Still need to lower it some more from the looks of my CGM charts.
Butting heads with the old doc and running into a wall of treatment have pushed me into looking for another doctor. Again, the current one is not a bad one but she is in over her head with me or so it seems to me. She likes all these new gadgets. I like some of them but if it does not work lets drop it and move on to something better. I did not say newer, just better. I actually used the phrase “quit beating a dead horse” with her once. Frustration had grown high that day. We will have to see how this decision pans out for me a few months from now.