Saturday, May 16, 2015

Taking Control and Starting Insulin

This was originally posted more than four years ago TuDiabetes on December 20, 2010 and this event marked a big change in my life both in my diabetes and in my relationship with my health care team.  It sparked some interesting conversation at the time.

Well, it has been a long time coming, but I've decided that I'm going to start an insulin regime.  Some of you may have thought that I've been on insulin for quite some time, I'm sorry if I left you with an incorrect impression. I decided a while ago that I would be moving to insulin and that in order to be successful, I needed to be smart about it.  I've been asking to start insulin for three years and been repeatedly denied.  Most recently changes in my triple medication regime failed again to show any long-term improvement in my blood sugar control.  I had my c-peptide tested and found that I appear to be insulin deficient (not enough yet to meet pump criteria).  And after a series of "unfortunate" events, I've had to leave my endo who never gave me the care I sought.  Given that I have to start with a new endo and my regular doctor long ago threw up her hands at being able to help me, it seems like the perfect timing.

I've been repeatedly told that the reason I can't use insulin is that I will have hypos and it will cause me to be fat.  Yes, insulin can cause hypos and it can cause weight gain.  But in truth, I think my doctors have been "insulin resistant" declining to prescribe insulin because my blood sugar has not gotten out of control.  They don't want to be the doctor that did the nasty deed of first prescribing insulin and be held liable for something going wrong.  Well I follow a strict regime, a very low carb diet and take good care of myself.  I will only reach the thresholds that will enable my doctors to act (A1c of 8-9%) after some serious extended time with poor control and I will not let that happen to myself.

So I've concluded that I need to take the matters into my own hands.  I have purchased insulin and syringes and am starting a regime.  I've known for some time all that I need to know in order to implement my insulin regime.  I'm not asking anyone for help with this, this post is about me announcing my decision.  I've already told my family and a number of friends.  I will tell my doctor(s), but not for three months.  I'll not give them the opportunity to intervene in what is "my" decision.  I will tell them at my next quarterly appointment, but at that time, the decision to go on insulin will be "moot," it will have been taken out of their hands.

I would certainly appreciate your comments.  If you want to call me a bonehead, that is fine.  In the end, we need to be responsible for our own care.

8 comments:

  1. I know enough about you to know that you are a self-manager of your diabetes. But I did not know enough of your story to know that you had actually started insulin yourself. Good work! I do not understand why doctors withhold insulin from patients who would benefit greatly from using it.

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    1. I think most doctors are "insulin resistant" and don't wish to be liable for a decision to initiate insulin. The standard treat-to-failure model says to move to insulin as a last resort and even on three medications bloods are out of control. I refused to have myself damaged by possibly years of high blood sugars in order to "earn" access to insulin. Thanks for you thoughts.

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  2. We could be diabetes twins! You write a lot of my own thoughts. I have no words of wisdom since I don't use insulin, but I applaud your willingness to take control of your situation. Good luck and keep us posted!

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    1. I would like more patients to feel empowered to take control. My latest adventure involves getting tested for monogenic diabetes (MODY), read about it over at TuDiabetes and I will blog when I get a chance.

      ps. Thanks for helping with Unconference, I've already signed up and it should be great.

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  3. I applaud you for taking the bull by the horns and doing what you felt was best for you regarding an insulin regimen. I had a similar experience when it came to making the switch to insulin. Thanks for sharing.

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    1. Thanks Mike. I think that many patients with T2 look on insulin as a failure. For me it was a relief and something that gave me real success in controlling my blood sugars.

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  4. I think what you have done is great! So many times, I have had to step waay out of line to take care of myself, get multiple opinions, etc. We know our bodies so much better than our doctors do and I applaud you for taking the risks to take care of you!

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  5. Thanks Amber. I think sometimes it is hard for us to make choices about our treatment that conflict with the advice from out healthcare team. I've certainly dealt with this concerning insulin and as you well know diet can another area where a patient needs to exert their right to make choices. All my best.

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