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I'm new to this forum and need advice...

Posted , 3 users are following.

angela77485
angela77485

I was diagnosed with Graves Disease during the fall, and have really high levels of T3 and T4. They couldn't even read my levels at first. They went down for a little while but then shot back up. My there aren't many endocrinologists where I live, and my doctor is basically never available. Would be a bad idea to just meet with a surgeon and remove my thyroid?

I don't want to deal with all of these side effects and all of the medicine anymore. My right eye has graves eye disease, I now have atrial fib, and I can never sleep.

What would you all suggest?

Keep trying with meds, or have surgery?

0 likes, 4 replies

4 Replies

  • linda187
    linda187 angela77485

    Posted

    If you think you are going to have an easy course with your thyroid out or destroyed and replacement levothyroxine, you are mistaken.  You can talk to hundreds of women on the Boards on the Internet who have suffered because of this.  And when you choose this course of treatment, it is not reversible. 

    I belong to another Board where women want to keep their thyroids and have successfully done so for many years when they took responsibility for their disease, to learn all about it and to be a proactive patient.  So you need to learn the lab tests, what they mean and always get a copy of any medical tests that are done on you.  Secondly medication works well when supplements are taken along with it because when running hyper, you are losing lots of vitamins, minerals and amino acids through urination and these need to be replaced.  And no doctor will tell you that because they don't know about it. Also doctors prescribe much too high a dose of the antithyroid meds.  The supplements you need to take are Regular L-Carnitine, 3,000 to 4,000 mg per day, Vitamin D3 1,000 to 5,000 IU per day, and Magnesium 200 mg a day along with Selenium or 2 brazil nuts a day if you have eye disease.  If you have difficulty lowering your thyroid levels, you can add Acetyl-L-Carnitine to a low dose of meds and it will very quickly lower your high thyroid test values.  However, most people who use Acetyl do not do frequent enough blood tests and/or adjustments to meds or supplements dosage and go hypo very quickly so you need to be careful with using Acetyl-L-Carnitine.  There are also other naturopathic things like Bugleweed, Melissa and Motherwort.  

  • heathercc
    heathercc angela77485

    Posted

    Angela,

    I just went through something similiar. My levels were one of the highest they've seen. I went into thyroid storm and spent a week in the Cardiac unit becuase my heart was going crazy. I was on a high dose of methimazole and propranolol for a few weeks and got some what back to normal. I know it sounds crazy, but you have to nag your doctors, or find a new one if they won't see you or get you in. My endochronologist office, says they arnt seeing patients for 4 months everytime i call, until I demand an appt. then they say "ok, how about tomorrow" I was schedule for RAI Yesterday- Monday, on Saturday I just had to cancel it, I had done a ton of research and knew it wasnt for me, but every doctor said there was no other way, because the methimazole made my liver enzymes go soo high. But i stopped the methimazole, and then since have been put back on a lower dose of 5mg a day, and so far my liver enzymes are coming down- almost back to normal, and my thryoid levels are in normal range. Which everyone say wouldnt happen?? UGH. What medicine are you on? and what side effects are you experiencing? How long have you been on them? 

    My advice is don't rush into anything, if you are considering surgery or RAI, take your time. Do lots of research and maybe see 2-3 doctors, or don't bother because the others are right they mostly say the same thing. Do what feels right for your body. 

    • angela77485
      angela77485 heathercc

      Posted

      I also take methimazole and propranolol. I take 20mg twice a day for the mdthimazole, and I take my proranolol based off of my pulse. I take my pulse 4 times a day and it is never under 120. I called my clinic tonight because my pulse went up to 168 and my right arm lost all feeling, they thought I was having a stroke. Turns out it was anxiety, as they say.

      The stress I'm under for a scheduled medication daily is preventing me from finding the time for job searching because I'm in school full-time and am a single parent.

      I know I have atrial fib, so I'm checking for any further heart issues in a week. I just want my eye normal and not to worry about checking my pulse all day every day.

      How long have you been on these meds?They make me feel loopy

    • heathercc
      heathercc angela77485

      Posted

      So scary about the 168 HR and arm. They will always tell you its anxiety, but naturally you are anxious right now. Hyperthyroidism can cause anxiety. I was hospitalized until my heart rate came down to 120. You sound like me though, I became a little obsessive checking my heart rate constantly. As far as I am aware propranolol is faster-shorter acting. Probably good to get on a regular schedule with that, to avoid any spikes. I took 20mg 3-4x a day at first. Now i've switched to atenolol which is longer acting, only need to take once a day. I took Propranolol about a month and Methimazole about a month and a half now. but have lowered the dose of methimazole. I did feel weird at first, but seems normalized now, i think some of the weirdness was just from the thyroid level and heart rate being high. I felt kinda like absent minded, doing really stupid things. Whats the course of action from your drs? What are your current thyroid levels? And have they tested your liver functioning? (Ast/Alt) That was a major concern for me with the high dose of methimazole. I'd check with your dr too, but i also used some essential oils to calm the axniety a bit during those really stressfull times. I found it to drop my heart rate up to 20 or more points in a matter of seconds. Have you seen your eye doctor? Deep breaths it will all be ok! I wasnt allowed to work out but still did some light stretching helped me relax a bit! best of luck!!! 
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