[kararoot]

in reply to: RAI or Surgery? #1173003

I think you should ask your doctor if you can reduce your dosage. Mine told me later that given my earlier hives, and the current elevated liver enzymes (which had been only slightly elevated before I went on Methimazole) she had to think about the risks and didn’t want to make a fairly healthy woman in her 30s sick from a medication she prescribed. But she gave me a month to see if they would drop, and she said, “You came up with this treatment plan, and I it worked. I am glad!” If my enzymes had been super high or elevated over two cycles of blood draws (6-8 weeks) we probably could not have tried that strategy.
It certainly can’t hurt to ask!

[kararoot]

in reply to: RAI or Surgery? #1172999

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.

[kararoot]

in reply to: RAI or Surgery? #1172995

Hi all – Thank you SO MUCH for your responses! It feels really good hearing from people who not only know the issues and lingo but know what it feels like to be, (as my husband calls it), “gravesy”, and weighing two not-great options.

Yesterday I got permission from my endo to drop the Methimazole from 10 mg to 5 mg (she probably would’ve given me permission to try an all-chocolate diet if I had asked- so sure she is that in four weeks we’ll be back at the decision place between RAI and surgery no matter what we do), but I have decided to remain hopeful that the enzymes will go down.
(FYI – they were elevated when I began treatment, but have tripled since then).

I will check back in in 4 weeks, and in the meantime I wish a speedy recovery, and health to you all who are in process! Again – I am SO GRATEFUL for your stories!

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