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  • SheWho
      Post count: 4

      Friends, I need advice, and to vent:

      I was diagnosed with Graves 7 months ago. I do not think I was getting good care, and recently changed doctors. I had my first TSI this week and it was 8.14. While PTU has suppressed my Ft4 to low or low-normal range, I am still disabled by either the Graves or the medication side effects (tachycardia and exhaustion, muscle wasting and pain, vision loss).

      I have not been able to work full time for 7 months and I am self-employed. I have run through my savings and am dealing with the stress of mounting medical and household bills I can’t pay without an income. My new doctor is telling me to wait a few more months before they do anything – like biopsy the three nodules on my thyroid, or adjust my medication.

      Today, I am just sobbing uncontrollably and I don’t think it’s from the thyroid hormones. Yesterday, I fell for the first time from my muscle weakness. I know that tachycardia without AFib or diplopia/vision loss without proptosis aren’t medical emergencies, but they have become *life* emergencies for me. It seems like there are things that could be done, but doctors keep taking a “wait and see” (or don’t see, in my case) approach.

      Today I got a message that the new endocrinologist wants to “wait and see” for two more months. In two months, my business will be bankrupt. I can only see clearly for a few hours a day now, and I am afraid of what happens if that gets worse. Without work, I will be unable to afford health care any more. I don’t know what to do.

      Any advice?

        Post count: 160

        Hi SheWho,

        I don’t know if any of the following is going to help but here it is anyway.

        I was diagnosed in June 2013, had RAI in July and was miserable swinging up and down on Synthroid. I had a small goiter and two growing nodules. My endo did not seem to be too concerned since, over all, I was not feeling too bad (in his opinion).
        In July last year I developed a dry cough and trouble breathing while laying down. My PCP sent me to an ENT (ear nose and throat) surgeon, who decided a total thyroidectomy was necessary.
        It was done a month later and I can not believe the difference. I am happy, satisfied and on an even keel with my meds.
        I am now seeing a different endo and he seems happy too. Had I known about the surgery, which nobody had mentioned, I would have had it done in 2013.

        Like I said, I don’t know if any of this is helpful, but, remember, there is light at the end of the tunnel.
        I wish you the very best.


          Post count: 305

          I was not willing to wait and see. Six months on antithyroid meds was too long. I had my total thyroidectomy at six months after Graves diagnosis. If I had it to do over, I would have had the surgery the minute my hormone levels made the surgery safe to do. I felt normal right away. No regrets. I am over four years post TT, no problems at all. I had no nodules to worry about. If I had, I would not have messed around with biopsies. My TT was as complete as if I had had cancer, so I would not have wasted time and money with a preop biopsy. They would have done the pathology at surgery. See a good thyroid surgeon in consultation so you can decide what is best for you.

          Online Facilitator
            Post count: 4286

            Hello – A consult with a surgeon certainly wouldn’t hurt if you have surgical expertise where you live or if you are willing to travel. This is definitely a procedure that you *don’t* want done by someone who only does one or two thyroidectomies per year!

            You mentioned that your T4 was low or low normal – I wonder if that is contributing to the fact that you aren’t feeling well. (Although the doc would certainly want to take the tachycardia into account before tweaking the dose).

            Take care – and keep us posted!

              Post count: 160

              If you feel this unwell your Graves’ is not being managed properly.
              It sounds like you agree.
              It is time for you to become your own health advocate and act independently.

              If you have made a decision about a permanent fix….RAI or TT, book that consult.

              Biopsies are great if you have time to wait, for another wait and see approach.
              A permanent fix like a TT works really fast. A speedy return to normalcy.
              RAI takes time to work and may not be completely effective with one dose.

              Educate yourself, decide your fastest path to wellness, let nothing stand in your way.

              If your drs won’t listen, shout louder. You are in control of your health. This is your future, wellbeing, and livelihood at stake.

              “Wait and see” can waste years of your life feeling less than 100%. I lost a decade to it.

              I had a TT against my endo’s recommendation (after a failed RAI) and it fixed my life. I hope you find the same relief.

                Post count: 4

                Thanks for sharing these stories and different ways of handling illness. The fact that different endos can have wildly different approaches to what is “tolerable” is encouraging news for me, indeed. And I appreciate the encouragement more than I can say.

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