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Toprol XL, Am I being stupid, or resourceful?


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  • Toprol XL, Am I being stupid, or resourceful?

    Here’s a quick summation.
    3 years ago, when I was first diagnosed with HCM, I was prescribed Toprol XL. I went from 25MG’s per day to 75MG’s within a year and a half.
    Then I was diagnosed with Sleep Apnea. I was put on Verapramil because “it was better for low oxygen levels”.
    My Apnea was cured by surgery and I became symptomatic anyway. My cardiologist decided to put me back on Toprol, but only at 50MG’s per day.
    I still was symptomatic, even after being back on Toprol for the last two months. A few weeks into Toprol, I reminded my cardiologist that I used to be on 75MG’s, but she said 50 was fine.
    Ok, there is still a bunch of other tests being done, and procedures being looked through. But in the meantime I have some annoying symptoms that are really bringing down the quality of life (Fatigue, chest tightness, some palipations).
    I thought to myself, I used to be on 75, so what harm would it do to experiment.
    So a few days ago, I tried upping the dose on my own. I have had 3 days with almost no symptoms.

  • #2
    Re: Toprol XL, Am I being stupid, or resourceful?

    Ideally, you should have called the doctor and said, "hey, I feel like crud, I want to increase my dose to 75." and she probably would've come around if you pressed the issue.

    You were making an educated decision based on prior experience, you were just cutting the doctor out --partly out of needing a higher dose and perhaps in a tiny part b/c you felt she cut you out of the earlier decision?

    Medicine works best when doctor and patient communicate openly and then you don't have to worry about it

    my two cents


    • #3
      Re: Toprol XL, Am I being stupid, or resourceful?

      Thanks Sarah.
      If you read my other posts you will find that I'm not feeling too sympatico with my cardilogist these days. Something that is not too uncommon on these boards.
      She is smart, confident, has a great approach in explaining things, but she is not as experienced with HCM as I feel I need.
      When she first suggested surgery, she even warned me against going to internet message boards. I'm very glad I ignored that advice.


      • #4
        Re: Toprol XL, Am I being stupid, or resourceful?

        Felix - I think what you did was fine, especially since you are scheduled for a thorough new HCM evaluation by those who know HCM. The first thing they would try is upping your meds, esp. since you took this dose before. I am not saying you should always self medicate, but in your situation, while you are exploring your options before contemplating surgery, and are soon going to be consulting with a new doctor, and you have taken this dose before, I don't see any harm. What you do need, however, is to establish a good working relationship with some doctor who you can call up and discuss this sort of thing with.

        In this day and age, its unfortunate, but many of us know more about our condition than our doctors, so we have to keep after them and use our best judgment. The crucial thing is being able to judge our own ability to monitor ourselves.
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.