[christine1014]

in reply to: was surgery a good choice? #1182394

Hi Pam00!

I had a TT on November 12th, 2013 and it has been, by far, the best decision I made to manage GD. After being Diagnosed September 21, 2011, I had been beaten down by the ups and downs of trying to manage my levels while taking ATD’S. My Endo. is amazing, and really let me take my time deciding what course of treatment would work for me, giving consideration that “I was totally against have a TT during the two years of yo-yoing on the ATD’S”. Finally, when my resting heart rate never went under 120…yes, sadly that’s not a typo 120, even with betta-blockers…it would actually wake me while I was sleeping… and the muscle weakness and joint pain that would come and go depending on the amount of methimazole I was taking, and evidence that my constant tachycardia was doing damage to my heart, my Endo. said that I could, of course get a second opinion, but it was time to take another course of action knowing I wasn’t going to go into remission. Within three days! of having my surgery my heart rate was down to 82! I finally felt like I was off the hamster wheel of exhaustion. : ) I still have eye issues, and days that I am fatigued, but compared to where I was is like night and day.
Also, with no disrespect to Shirley, I agree entirely with Ellen. I live in a suburb of Phila, and out of the three surgeons, from three different Hospitals, two in the suburbs and one in Philadelphia, only the one from Philadelphia “Always” does a TT with Graves Disease patients. Even though it is the recommended procedure for Graves Patients, a TT that is, the other Dr. wanted to do a partial for the exact reasons Ellen said. Not so much for the vocals, even though beyond important, but because you only need one out of the 4 parathyroid glands to maintain calcium levels and prevent future health issues. So like Shirley mentioned, getting a highly experienced surgeon seems key, because the surgeon that I did choose, the one in Philadelphia, had total confidence that he would be able to move the parathyroid glands safely into a muscle/muscles in addition, creating….hopefully, fewer issues in finding the correct level of thyroid replacement by only receiving synthetic by having a TT.
Pam I hope this helps. Like Kimberly, and all the great people who help run this amazing sight always say, “each case is individual”, but I wouldn’t go back to where I was before my TT for a million dollars. Nothing is perfect, but I got my life back. As you can tell, I highly recommend TT for GD with a experienced surgeon, and supportive Endo. which I was lucky enough to have both.

~Christine

I will leave you with one of my favorite sayings. I will have to look up who said it again because I have been saying it for decades. : )

“Serenity is coping…..coping well….and rising to they occasion”.

[christine1014]

in reply to: My TT Journey 8/27/13 #1180791

Thank you so much Kimberly!

Great information. I have been on every website there is about Graves, and I thought the eye disease worsened with surgery. That is great news that surgery is know to have the same effects as ATDS. That has been one of my biggest deciding factors in still trying to ride it out, or have surgery. I found The American Association of Endocrine Surgeons just last night. : ) I am very happy to say that the Surgeon I was referred to was on there!!
So happy to have your insight, and input. : ) If I am not mistaken, did I read somewhere that you are currently using ATDS to manage your Graves? If so, if you don’t mind me asking, how long? Also, I think your presenter at your 2012 San Diego Conference is right……My eyes, are so much worse when I swing one way or the other. Last blood work TSH was 0.01 (normal for me), T4 Free was 3.1, and T3 Total was 329, and my eyes have been worse than usual this week.

Again, thank you for everything!

~Christine

[christine1014]

in reply to: Hyperthyroidism/Graves Serious, curable? #1180806

Hi Kalty,

I apologize, I called you by the wrong name. : )

~Christine

[christine1014]

in reply to: Hyperthyroidism/Graves Serious, curable? #1180805

Hi Kalty,

I apologize, I called you by the wrong name. : )

~Christine

[christine1014]

in reply to: Post Thyroidectomy #1180808

Hi Christina,

I hope your are feeling well. I am sending many prayers. : )

~Christine

[christine1014]

in reply to: My TT Journey 8/27/13 #1180789

Kimberly,

I am so thankful to hear from someone who understands, and cares, that I am actually crying my eyes out after reading your post. Thank you so much for this forum. And “NO” I am not done, and am totally not ready for a TT. Lately, however, my heart rate has been bad again. It has always been around 82, even before I was diagnosed, but right now it’s 118 just sitting writing to you. Last week it was a constant 120, and when I wake up it’s 105. I have been on betta blockers before, but it was when I was first diagnosed, and not since. My entire body aches. I am beyond exhausted, and am extremely out of breathe again. Ironically, I was doing really well in the Spring, and mot of the Summer. I even started to exercise again. And now, the past two weeks, wham, it’s like day one all over again. I own a restaurant with my baby sister, and with my work load, I know that it is part of the reason that I keep going in a vicious circle of Hypo-Hyper, Hyper-Hypo. I have two wonderful children, 18 year old son, and a 14 year old daughter, and I don’t want them to see me like this. My tremors are back, my eyes water all day…and are beyond red, and I stutter at times so I know they can tell when I am not feeling well. I wake up at 2 and don’t go back to sleep…so you can just imagine what I look like. : ) I just don’t think it’s fare that they worry about me…”That’s my job..to worry about them: )” And of course, I am one of the lucky ones, I have gained ten pounds since receiving this wonderful gift, and lost all my muscle. Again, the answer to your question is “No” I am not done. But my Mom, and Sister just think you get all better after a TT, and I am bringing this on myself. Although I have tried again, and again, to explain to them that I will still have Grave’s even with a TT, and my eyes may actually get worse, they don’t get it. I just feel I should give up and do what they all want. I am only 44 years, and was a runner before this. It has really broken me down more than I ever could have imagined.

Thank you for letting me get this out. It means more than you could ever know.

~Christine

Thyroid Storm August 18, 2011
Diagnosed with Graves September 21, 2011
Methimazole up and down and all around from 5mg to 30mg, and back again
Sensory Neuropathy-left leg
Systemic lupus (I think it is drug-induced by the methimazole)

[christine1014]

in reply to: Hyperthyroidism/Graves Serious, curable? #1180804

Kathy,

I beyond feel for you!! I really do not understand why people can be so heartless just because they can’t “See” your illness. Worse yet, I think it hurts us Graveantor’s even more when they say something, because as my husband says “You will never see a lazy person get Grave’s Disease”. It is because we push ourselves, and do so much, and work so hard that makes this predisposed disease come out, and even more difficult to deal with. We are strong determined people, and now are bodies not only don’t help us get what we need to get done….”It actually fights against us from doing it!!!” My husband says we should have T-shirts saying “It ain’t Cancer, but it sure does suck!” (Of course, no disrespect to our my poor Cancer friends out there) It is just he wants our stories heard, and compassion shown for all of us.

Kathy, please know your not alone, and sadly, know everything your dealing with is beyond real, and as hard as it is, try not to listen to such clueless, ignorant people. Soooo happy for you that you have a family like mine. Don’t know how we would survive without them.

~Christine

[christine1014]

in reply to: checking in and being thankful #1180765

Hi Ruby!

Just like everyone is saying….”Thank You”. I really, really, needed that today. At this point if I was able to ride a carousel rather than the Roller Coaster I have been on. I would take it!!
It was also a great way of telling all of us that nothing is perfect, but it can get better.

~Christine

Diagnosed with Graves Disease 9/21/11
Methimazole up and down, and all around the past two years
Diagnosed with sensory neuropathy in August 2012
Systemic Lupus July 2013….but I don’t believe it….asymptomatic from methimazole is my feeling….

[christine1014]

in reply to: My TT Journey 8/27/13 #1180787

Really glad to hear your TT went well, and hopefully, you will feel relief soon.

I am new to the forum, but not to Graves. Diagnosed September 21, 2011, and been see-sawing back and forth managing….let’s say….”trying to manage” with methimazole anywhere from 30mg to 5mg a day. Was told this week by my Endo. that we are done trying to go in remission, and I need a TT. I am terrified that I will never be myself again. A wife of 24 years, mother of two amazing children 17 and 14, and a restaurant owner in my home town. I can barely hang in there most days, but somehow I still feel like I have more control by changing dosage by what my numbers say rather than after thyroid is gone. Once it’s out…”It’ out”….then what? Sorry to sound so naïve, but I just feel apathetic at this point, and wish I could even do half of everything I could do before this nightmare began.

I look forward to hearing good news from you shortly. Please get a lot of rest, and do what is best for you.

~Christine

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