Hi all - so an update on me:
I took that month I was given and saw an integrative medicine MD, who took me off gluten and added supplements like Vitamin D and Omega-3 and multi-vitamin - the regular stuff. And I called my endo to see if I could drop the Methimazole to 5 mg - which she agreed to. The gluten-free thing was not a welcome suggestion (as I love to bake and LOVE bread!) but she assured me that we were experimenting and I was glad to be addressing the impact on the thyroid AS WELL as approaching Graves' as an autoimmune condition. Since so many people have gluten sensitivity that exacerbates autoimmune conditions, it was worth a shot. I also added more regular exercise and really working on saying “no” more- not to let myself get too stressed out and overwhelmed, with breathing and relaxation exercises to support this. I've also read about the stress connection with Graves' - as with many autoimmune responses.
Long story short- I went in a month later and my enzymes were normal. Not only that, but my T4 was in the normal range, so the meds were working at the lower dosage, and I have been given the go-ahead by my endo to continue this track - anti-thyroid meds for a year with complimentary approaches to maintaining health, in the hopes that I will be in the 30% that achieve remission. As this was what I was hoping for, I am thrilled. I also recognize that at some point I may face the decision between RAI and surgery again, but for now, I am happy to be where I am - not to mention feeling better than I have in over a year with the symptoms like insomnia, fatigue, palpitations, etc. GONE. (I even stopped atenolol!)
The other part of the update is I decided before switching endos to try to talk with mine about our relationship and the comment she made. I told her I needed to bring up something that was bothering me and then reminded her that as she left our previous appointment, she had said, “Since you know so much, why don't you come up with the treatment plan.” I told her that really bothered me, that I needed her to be the expert and I needed to have a voice about my own body and hoped that we could work together. I felt she heard me, and she said she supported her patients doing research and the truth was that she was mitigating risk when she was pushing RAI and that I, in fact, DID come up with the treatment plan and it was working, so that was good. I felt after we talked that there is a mutual respect (maybe born from that conversation itself) that allows me to say something again if I need to but also feel I can keep working with her.
(I'm also hoping - since noticing no difference one way or another- that the gluten thing is a fluke and while might be a problem for some, isn't MY problem, particularly. But, since things are so stable right now, I am continuing GF, for a little while at least).
Mostly- I read a TON and hunted down the support I needed, and have felt more empowered about my own health and wellness, and more aware of my body's needs -(learning to pay attention to symptoms and needs) - than I have in my whole life. I am grateful for the struggle the last 4 months have been because they've taught me to be proactive about my health and medical care, and to trust my instincts and take risks, speak up, and to pace myself. I learned I can be as healthy as I am able and work for my own well-being. What a lesson to learn!
All in all - happy update.