[dgregory July 27, 2012 at 5:31 am Post count: 6]

#1059236

Hi! I was diagnosed with GD in December, 2010, had a thyroidectomy in March, 2011 and the last labs I had done finally came back in the normal range. I am amazed at how many people I’ve met in rural Kansas who have had their thyroid removed. However, I have yet to meet someone who has had their thyroid removed due to Graves. I would be interested to hear from others about the long term effects people have with GD or if you really do get over it once the thyroid is removed. I still feel symptomatic but my endo says my surgery should be 99% effective in treating GD. I love to study and learn more about myself but I haven’t found much information on long term effects on “treated Graves Disease”. I would love to hear from people who have lived through this ordeal and where they are now.

As for me, 1 1/2 years later, I am doing very well. I have gained about 20 pounds since being diagnosed (those pounds were not a welcome guest, by the way). I was extremely weak but am regaining strength. I have had a couple episodes with my heart running away with itself for a short while then returning back to normal. I am still feeling like some tasks are overwhelming when actually they shouldn’t be. My energy level is improved but some days I feel like I can hardly put one foot in front of the other. I do not tolerate heat well, sweating is something new to me since GD. Overall, my outlook on life is wanting to slow down and take it easier. However, that doesn’t fit in with my real life. Is there hope for getting back to my lifesyle prior to Graves or are there some things that will never be the same?

For those of you who are newly diagnosed, I am one who has gone on the roller coaster ride and am feeling much, much better. Looking back, I wonder how I got through. No one really understood how badly I felt. They still don’t. However, I can honestly say life is good and I believe it will continue to be so. Don’t get too discouraged. Hang on tight and know when treated, being “so sick” won’t last forever.

[KimberlyOnline Facilitator July 27, 2012 at 9:05 am Post count: 4291]

#1173226

Welcome to the forum — and thanks for the encouraging words!

There are several regular posters here who have had been treated for thyroidectomy. Hopefully, you will get some responses from them, but you can also read their stories by using the “search posts” feature in the top right-hand corner of the screen and searching for keywords including “thyroidectomy”, “surgery”, etc..

I don’t think it’s necessarily a bad thing if your body is telling you to slow down! Before my diagnosis, I used to constantly skimp on sleep to try and get things done. Now I really try to make myself a priority…I am much more conscious of the commitments that I make, and I try (as much as possible) to avoid people and activities that drain my energy instead of *giving* me energy.

Take care!

[PolishTym July 28, 2012 at 7:26 pm Post count: 67]

#1173227

dgregory, my thyroidectomy certainly helped me but I also certainly don’t feel cured, I guess because the problem is the autoimmune disease and not really the thyroid.

I still feel some of the same surges (like some kind of adrenaline rush) but not as bad as during the pre-surgery Graves’. As I’ve told my wife, it seems like Graves’ affects me in some way every day, whether it is energy, the surges, or how sudden stomach issues emerged with Graves’. Last year I was talking with a senior citizen I know who had her thyroid removed many years ago and was telling people how she always felt fine after that removal. I’m happy for her, but sometimes people seem to expect that we should feel the same way. However, we know what we’re going through is different.

I am happy that I went the surgery route, although it isn’t for everyone. If it wasn’t for this discussion board, I might think that a lot of my issues are in my head. I feel bad for everybody, but it is good to know I am not alone.

[dgregory July 28, 2012 at 8:50 pm Post count: 6]

#1173228

Polish Tym, Thank you for your comments. I had a very good experience with my surgery. I don’t regret having the surgery either. I had no paid post surgery. Never even took a Tylenol. I was admitted to the surgery center at 6:30am and was dismissed at 2:00pm. Recovery was a breeze compared to how I felt after being diagnosed. I knew the course of getting my medication regulated would take awhile but get impatient with my fatigue. I agree the autoimmune must be causing some of this swinging from feeling fine to fatigue. And sometimes I wonder if having graves and thyroid removal vs other conditions with thyroid removal results in different outcomes. I am glad I found this forum, wish I could have found it sooner. I can endure a lot for awhile but I want to find hope at the end of the tunnel. Hearing from others who have gone through this and made it is what helps me know I, too can make it. My best to you, Polish Tym. You’re right, we aren’t alone.

[tnapavlu July 31, 2012 at 9:30 pm Post count: 20]

#1173229

dgregory,

I hope this finds you well. I use to live in midwestern KS and fought for years to get diagnosed when I lived there. It wasn’t until I moved to Idaho and had no choice but to have the thyroidectomy when I was diagnosed with Grave’s. Since, it has been almost 6 years and I still have my “good” days and my “bad” days. As others have posted I agree that it seems to be fighting more of the autoimmune disease part of this than the thyroid part. However, we are kind of hit with a double edged sword. We have so many symptoms much like that of someone with ms, also an autoimmune, but we can’t be treated for it like they can. We are treated for the thyroid part but we still get thrown off by heat, cold, stress, sleep, etc. Again, much like those who suffer from ms. It is hard to deal with but we fight on and use each other as support.

I don’t regret the surgery and have to admit I felt 100% better after. I was able to hold a glass of water again, clean my house in one day, simple things that I took for granted before I got extremely sick. Yes, I still have the occasional palpitation, and muscle spasm, or may have a day where I’m exhausted, but that’s a far cry from not even being able to get out of bed to get my kids ready for school!

Being from KS, hang in there with that heat and humidity and drinks lots of water. I now live in CO and it’s a little more tolerable. I hope you keep on a great road of recovery and use this forum, I have used it lots, just to know I’m not crazy and what I’m feeling isn’t in my head. lol Best of luck to you and take care.

[dgregory August 3, 2012 at 8:37 pm Post count: 6]

#1173230

Thanks tnapavlu for your encouraging comments. It helps to know we are not alone.

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