ChristinaDe
Dear “Inquiring Mind”…:lol:
Oh, and I can so remember those foggy days!
Yes, I had TT done. February 1st of this year. My original plan was to seek remission with ATDs. My doctor & some of the research that I was reading suggested that remission was unlikely in my case, but I was still going to give it a try. Two things changed my mind. One – despite “stabilizing” with “normal” levels, I required the ATD, a beta blocker, prescription Vit D, and a tranquilizer. While my heart rate & tremor improved, my palpitations, anxiety, and cognitive issues (the fog) worsened. I also became very depressed, which was not a problem for me prior to treatment, to the point of feeling like I couldn’t take it anymore. Apparently this happens to some & not to others. Two – I had a large goiter and 2 large nodules. Although the nodules were non-toxic, they were large enough that they were going to require careful watching & possible surgery later no matter how the rest was going. At that point I was so done with all the doctors, labs, meds, moods, anxiety and fog and I simply felt that I had no quality of life left and was no longer sure that (in my case) waiting out a possibility of remission was in my best interest (even though I wanted that so badly & it seemed to happen for so many others).
My TT went very well. No more anxiety or cognitive issues since. No more heart issues since. No more tremors, nausea, or general malaise either. I did have a short bout of low calcium levels which were uncomfortable for a few days since my parathyroid glands had fallen asleep. The only thing I had to do for that was take calcium gummies until they recovered. That worked very well & the parathyroids became fully functional very quickly. I no longer take the calcium or prescription Vit D. I came off the ATD and tranquilizer the day of surgery. And I came off the beta blocker about a week later. Today the only med that I take that I didn’t take before Graves’ is my thyroid hormone.
The only other thing I’ve had to deal with is the expected thyroid crash. When they first begin your thyroid hormone, you still have a bit of your own thyroid hormone stored up. Once those stores are used up, it is typical to need an increase in your med dose to compensate. To minimize it, my surgeon started me on my thyroid meds the day after surgery. My crash came late, but it came. It’s not been horrific, just some hypo symptoms that require an increase in thyroid med. (The first dose chosen is just a best guess sort of thing anyway.) So at the 2 month mark I’m increasing my dose for the 1st time & seem to be responding very well. Hopefully this will be the only adjustment. We’ll soon see. I have to say though, that mentally I feel pre-Graves’-ish. Just feeling a bit lethargic with some joint pain from the temporary hypo state.
As for post-op support, I needed the typical help that follows any surgery under a general. I really only needed that for the first week or so. The pain was mostly in my throat from the breathing tube, but I did have some tightness and mild hoarseness for a few days. I think I only took the narcotic pain reliever for 2 or 3 days, then nothing. At 4 weeks my scar was flattened out & pale & now I can barely see it. I have to point it out to others for them to see it.
So my experience was good. No complaints. But it was tough getting there! I did what you’re doing now. I listened to the good stories, and the bad. I carefully considered all 3 options. And then I chose the one that best suited my values and mental state, and I haven’t looked back. I honestly have seen people who are just as happy with their decision to remain on ATDs for as long as it takes & others who are happy that they went with RAI. I knew that I was at the point that I had to go for definitive treatment. I’d lost hope and the ability to cope with the highs and lows and waiting. I talked to 3 physicians and a therapist to get to my “best” option.
By the way, every single one of your concerns is completely valid!!!