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Carrie,
I was officially diagnosed w/ hyperthyroidism & Graves’ last November. My symptoms began in 2008 and I kept complaining to my docs that I thought I was hyperthyroid, that my father & grandmother both had Graves’, etc. I kept getting labs drawn & kept being told that they were ok & so it must be something else. Went to cardiologists, therapists, and others & they kept asking me if I was sure that my thyroid was ok. I kept saying yes. Finally, I went to an endo on my own to see if I had some other hormonal issue. She looked at my labs from 2008 on & said that I’ve been hyper the whole time. Asked why I hadn’t pursued additional tests & treatment. OMG! (Makes the case for seeing your labs for yourself – any and all labs!) Anyway, I was pretty sick by then. Severe weight loss, muscle wasting, activity intolerance, brain fog, anxiety, tremors, fatigue. Since I’d had it for so long, most thought my possibility of remission was unlikely. I tried anyway, but couldn’t tolerate the meds so was encouraged to choose a definitive treatment option.
My eye issues began in late 2009. They were puffy, my left eye got smaller than my right, they were dry & gritty, sensitive to light & wind, and the left eyeball would get very sore from the back. Also, my vision began to change in about 2011. My eyes seemed to reach their worst by early 2012 & didn’t progress from there despite no treatment for any of it. One of my docs (PCP) did not feel my eye changes were Graves’ related, the other 2 (endo & thyroid surgeon) thought that they may be but they weren’t sure – so I was referred to a Graves’ eye specialist. He thought it was Graves’ related, but minor. After TT the dryness, grittiness, and aching subsided – almost overnight. The puffiness decreased, but did not go away. No one knows why that happened & so it may just be coincidental timing. However, the lid puffiness, the water bags, and the difference in size between the right & left remains. I’m told that now that my thyroid is out and once I’m at my optimal levels on Synthroid that I could see further improvement, but maybe not. And it probably won’t bring me back to 100%. There are a couple of cosmetic fixes I can try to improve the look. So that’s probably more than you wanted to know, but that’s my story!
Up until now, I’ve been hesitant to add anything to my growing daily regimen. But I do think that I’m going to give selenium a try. One never knows!
Deciding between the 3 treatment options was the toughest thing I’ve ever had to do. Each had plusses & significant minuses. At one point it became so difficult that I considered walking away from ALL options, until it was pointed out to me that this wasn’t a real option – that the hyperthyroidism could kill me.
I then read a study that looked at the 3 treatment options in terms of patient satisfaction AFTER treatment. All 3 can bring a person’s hyperthyroidism under control, so the study wasn’t looking at that part of it. It only sought to determine which of the 3 groups of patients were happiest with their treatment choice in the end. It found that there was no major difference between the 3 groups when well-informed patients chose their option in a way that supported their personal values.
So a person who places a high value on keeping an organ & waiting for remission above all else, will likely choose ATDs when possible and will handle the management aspect better than someone who places a higher value elsewhere. And they will be happy with that decision. A person who places a higher value on definitive treatment while avoiding surgery and its risks, will likely do better with the process of waiting out RAI & be happy with that decision once they’re stabilized. And a person who places a higher value on just being done with things and moving on as quickly as possible or who fears RAI for whatever reason will likely choose surgery despite its risks & be happy with that decision in the end.
When I began, my values placed me into the ATD category. I wanted remission or to at least hang in long enough that perhaps a 4th option would one day become available. But I was one of those people who not only didn’t feel better on ATDs – but actually felt worse. So my values changed & I became focused on definitive treatment. I chose TT, but that was because psychologically I couldn’t handle much more of the ups & downs or the waiting. I accepted the risks because at that point what I valued most was just moving on in the most direct and quickest way possible. I’ve done well & am happy with my decision. My father chose RAI because he also didn’t do well on ATDs, and was mentally very adverse to surgery and its risks. He did well and was happy with his decision. I might add that President Bush had RAI (and one would assume that he had access to some of the best medicine that this country has to offer, was well informed, etc. – and by all appearances he did very well, even jumping out of an airplane on his 70th bday!
) And we’ve all heard of many people living happily with ATDs.Bottom line is that all 3 options have their risks & downsides. Each person has a different tolerance for what risks they are least adverse to & how those fit into their life plan. Of course we’d all prefer that we didn’t have to choose between any of them. But we do. Any are fine. How we feel about them simply depends on the person. No one option is best for all, and conversely no one option is worse for all.
My advise is to familiarize yourself with the risks and the course that each option takes. Know your own values & risk tolerance & then choose accordingly. Then try to be careful with those who are still in the decision making stage. People who are unduly pushed into one option over the other, despite their personal values, tend to be the ones unhappy with their choice in the end (at least that’s what this one study showed). Kind of makes sense, right?
Karen ~ I’d cry too…
Wish we could all just wrap our arms around you.I think this is tough on those closest to us, but yesterday’s experience sounds especially rough – physically, mentally & emotionally. Hope an apology comes your way today?
Ms Lux ~ Are you an attorney? From the U.S.? Just trying to figure out how to weight your legal advice.
WWWI,
No problem! Glad to help with some validation. I remember when I was first diagnosed and feeling so crappy…I wanted 3 things so badly. First, to be validated instead of being made to feel like a crazy, difficult hypochondriac. Next, I wanted the fog to clear so that I could understand and process everything that was happening. And finally, I wanted information. I wanted to know what was attributable to my new diagnosis and what wasn’t, what worked and what didn’t, what the various options entailed and how it actually felt to go through them, and while I wanted to know what the disease was all about & what to expect with it and its treatment options…I also wanted hope. Not lies, but reality-based, believable hope. It was so hard to find it anywhere, on any site, in the community, or even with my own endo – until I found this forum.
So anytime you want to pick a brain, do it! I still do!!! As well as I’m doing, as much as I’ve learned & now understand, as clear as my brain has become, as good and calm as I feel – there are still little tweaks required along the way to optimize things. And I still experience little hiccups. Nothing like before, much smaller things now, but I continue to benefit from others on this site & from the GDTF – always learning new things that I can use to improve upon &/or maintain my new feeling of wellness…everything from beauty & nutrition tips to eye health, to new research, pharmaceutical alerts & news items that pertain to Graves’ & thyroid patients.
And keep us posted on how you’re feeling & how endo #3 goes!
