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AuthorPosts
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AzGravesGuy
February 7, 2014 at 2:49 pmPost count: 160Recheck went well. Said I was healing nicely.
The tape is off! What a relief!
Pathology came back clean. No cancer but “a multi-nodular Graves’ disaster” per the PA. I never had nodules pre RAI.
They seem to think my voice…or lack of…is normal at this point so fingers crossed. Recheck again in a week, just to be certain. If not they will refer my to a SLP. (Thanks Laurel for letting me know they existed! I actually sounded smart asking about one today.) It may not come to that but if it does, he has one he refers to.
Sue you are 100% correct, a bad day post-op is so much better than a good day pre-op. It is really amazing.
So far so good! My only regret is not doing this sooner.
sarawebberdurnell
February 8, 2014 at 6:39 pmPost count: 41As Monday is nearing, I am so encouraged reading your posts. They are actually bringing tears to my eyes. I am so glad that you are doing so well. I can’t even imagine a good day anymore, so I have that to look forward to. I hope your voice issue resolves, but I work with some good SLP’s, so I know they can do great work if you do end up needing it.
I guess maybe I missed something in your earlier posts, were you aware that you had nodules or was that a surprise? I was just curious if they happened across it during surgery or if you had already known.
Best wishes!!
Sara
AzGravesGuy
February 9, 2014 at 4:45 pmPost count: 160I have more of a voice today! As an added bonus, it is a half octave lower than it was before.
Sara I am glad to be of help. If there is one thing I have learned from the GDATF forum, it is that we are not alone. Our friends and dr’s may not understand but someone here always will.
The nodules were a complete surprise, as pre RAI there were none. When my endo did the ultrasound and said what a mess it looked like a few months ago, she did not mention nodules at that time. All she did was mutter “oh god” under her breath and say it was really inflamed.
Bloodwork tomorrow! I cannot wait to see where I am at.
Kimberly
Online FacilitatorFebruary 10, 2014 at 12:14 pmPost count: 4294AzGravesGuy wrote:All she did was mutter “oh god” under her breath and say it was really inflamed.Yikes, NOT what you want to hear during an examination! Glad to hear you are doing better and better…and that the tests came back showing no cancer!
AzGravesGuy
February 11, 2014 at 11:10 amPost count: 160Bloodwork: 2 weeks post TT
Free T4 1.2 (.8 – 1.7)
Free T3 2.2 (2.0 – 4.
TSH 29.5H (.45 – 4.5)
I feel good but this leads me to believe I can feel even better with a slight bump in Synthroid. I will know what the Endo thinks Friday.
Kimberly, her muttering caused a moment of anxiety (and nervous laughter from both of us) but it also solidified my commitment to having the surgery sooner than later. I really can laugh about it now, but that day…not so much. Lol!
AzGravesGuy
April 8, 2014 at 4:36 pmPost count: 160I needed a break from last minute tax paperwork so time for an update of all good news!
I have been bumped to 137mcg of Synthroid. Bloodwork in 3 weeks. I am continuing to lose a slow but steady 2lbs a week. I feel lucky that my dose adjustments have been painless and unnoticeable. No bad days after adjusting so far.
The incision is nothing more than a thin red line. 90% of the swelling at the site is gone.
My voice returned to normal March 12th. No remaining soreness or difficulty.
So far I feel better than I have in several years. I am back to living life outside when not at work, just in time for spring. It feels good and different to finally have energy and motivation without heart palps, anxiety or headaches. I did some raking a few hours ago. It was 92 and sunny. I wasn’t uncomfortable or anything. For so many years I have been angrily uncomfortable in any heat. Poof! Gone! No more! (Small victory for most but monumental to me. Hooray! I can rake leaves in the heat! Lol!)
For the hope of continued health I am going to stick with the Dr. Blum autoimmune diet (organic, gluten free, corn free, soy free, refined sugar free), vegan version. I recently met someone with MS who is on it as well and they have had some symptom alleviation. I still have an autoimmune disease to keep at bay so eating anti-inflammatory is an easy sacrifice if it works.
It sounds glib but in many aspects, having a TT gave me my life back. I know a lot of it has to be with being mentally prepared for the whole procedure, start to finish, but having the actual gland removed instantly dropped the perceived inflammation level in my body. Waking up from anesthesia I felt like my body had taken a huge exhale. An inner calmness instead of the normal wound up. A month and a half later I look back and say wow. Just wow. Still a complete and total change from what it was before surgery. Calm, cool, collected, and up for any challenge.
Every day I celebrate how unremarkable and “normal” life has become. Best decision ever. No regrets.SueAndHerZoo
April 8, 2014 at 5:56 pmPost count: 439Hurray – great to hear! I can agree with just about everything you said except for the “no symptoms when changing doses.” Still, a small price to pay so no complaints here.
I can REALLY relate to the heat intolerance issue. I normally dread and fear spring and summer because of it but this year, I’m really curious to see how well I can handle heat.
So glad you have your life back. Don’t forget to put sunscreen on the scar – I was told to do it for a year.
Suesnelsen
April 8, 2014 at 8:34 pmPost count: 1909hi AzGravesGuy!
NEVER stop writing completely! I feel like I know you! Your post has the most longevity of any on the site that I can find!
I would really, miss you.
If I ever go to Az. I will want find you!
So glad things are going well for you. About damn TIME!!!!
YOU HAVE YOUR LIFE BACK~ Isn’t it great???
I really “get it”
Never “get” TED that is my advice to you.
Shirley in SEattleKimberly
Online FacilitatorApril 15, 2014 at 3:14 pmPost count: 4294AzGravesGuy wrote:Waking up from anesthesia I felt like my body had taken a huge exhale.Love this description – and so glad to hear that you are out there enjoying the beautiful spring weather! Please continue to keep us posted!
sarawebberdurnell
May 8, 2014 at 8:05 pmPost count: 41I’m right there with you
I haven’t felt better and I have absolutely no regrets about my TT. I see my endo in a month and I’m glad because I am feeling a little hypo, not bad, but enough that I am wondering about my bloodwork. I haven’t had my levels checked since 6 weeks post op and they looked good. I have been on 100 mcg of Levo since surgery, which was in Feb.
I feel so good that I have been working out at the gym 3 times a week for an hour each time, but have only dropped 4 pounds in the last month. I’m not complaining though, I’d rather be losing it then gaining it. I’m just excited to have my energy back with no joint/muscle pain. And I agree…no more massive sweats for me, even my deodorant is working again
It is so encouraging to hear that you are doing so well also.
Sara
Btw…my hospital bill was $38,000 minus the doctors charges. I would pay that myself too. It was worth every penny.
jwixom
May 17, 2014 at 4:08 amPost count: 1AZ,
I am still new to this whole thing. I have been reading your thread and I am encouraged to see there can be a light at the end of the tunnel.Thank you so very much for sharing your trip with us. I have no idea where my Gravy train will take me but it is so nice to know that I am not alone on the ride.
Thank you all.
veloracer
May 20, 2014 at 11:44 amPost count: 1Wow, what a story, I just spent the last 2 hours or so going through all the posts. AZ, you are one strong dude to keep with it and get yourself into the “normal”. Bravo!
I have just been recently diagnosed with Graves disease on 5/5/2014 and was scheduled for RIA on 5/7/2014 which I declined since I did not understand any of it. So right now, I’m on 40mg Methimazole and taking 10mg Propranolol 3 times a day for high hr.
I am going to make my decision in a couple months on the direction I will take. It is great to find this community and to share stories and provide support.
Thank you
AzGravesGuy
July 30, 2014 at 2:38 pmPost count: 1606 month post TT update:
Currently stable on 125 of Synthroid.
I have my life back.
100%.
I forgot what it feels like to feel well. Seriously. I was not prepared for this. The limits Graves’ forced me to accept before are gone. I CAN lose weight. I CAN build muscle. I CAN have endurance. I CAN conquer anxiety!
I thought I felt good when I posted last time in April, but no. Not after what I experienced a few days ago. Now I know what good feels like.
Last week I couldn’t sit still so I went for a hike, something I have not done in a long time. It was going to be 107 that day so I had little hope of successfully reaching the top of the trail. It didn’t matter, I had to get outside. A treadmill was not going to cut it that day.
It was early and I didn’t even notice where I was until I was halfway up the trail. I wasn’t weak like I was last year, not able to make it past that point before. Now, I barely blinked.
I made it to the top. It was a struggle the last quarter of the way (super steep) but there I was…watching the sun rise over the brown cloud from a hill top.
Tears welled in my eyes. At that moment I saw nothing but a future of possibilities again….and that the brown cloud was now surrounding the mountain.
That mindset, that moment: The Ultimate Middle Finger To Graves’ Disease.
Everyone deserves that moment of freedom from the hell of Graves’, minus the smog.
If you are new to this and afraid, don’t be afraid and do not delay treatment. Do your research, pick a path and go. Do not wait so long you forget what healthy feels like. The years I wasted on the fence about taking a step beyond methimazole….years I lost feeling crappy and just accepting it….I wish I could go back in time and kick myself.
But I can’t.
Kicking myself now has proven ineffective at best.
Having this surgery was a game changer. Before I couldn’t keep up, now things move out of my way.
Veloracer, jwixom Welcome to the forum! There is a wealth of knowledge and good people here. Thank you for your support and for sharing in my experience.
Sara and Sue I hope you 2 are still doing fantastic!
Shirley and Kimberly, thank you as always for following along and being here for all of us.
I am not out to conquer the world, just my past.
Kimberly
Online FacilitatorJuly 30, 2014 at 3:09 pmPost count: 4294Fabulous news, and a really well-written post! Many thanks for documenting your progress on this looooong journey.
That’s awesome that you finished the hike, despite the ridiculous heat. I’m still goofing around on the tennis court, but the cooler temps can’t get here fast enough for me!
Take care!
SueAndHerZoo
July 30, 2014 at 4:15 pmPost count: 439Whoohooooo!!!!! So glad to hear that, and I can totally relate to everything you said. I had no idea how bad I was feeling all the time for all those years until just a few months ago. We are still lowering my Levothyroxine (I’m down to 96.5 mcg per day) and each time we reduce I do it VERY slowly because of the side effects and because I don’t want to go TOO low. I’ve been feeling FANTASTIC the past 7-10 days , told my husband I don’t know if I’ve EVER felt this good in my 57 years of life. Physically, mentally, emotionally…… and the anxiety is GONE.
I sleep well at night and have energy all day. I’m happy all the time and am so grateful for it – I definitely don’t take it for granted. I’m able to lose weight if I make the effort and I can go to the gym and work as hard as I desire – my body is keeping up with my head.
Amazing, and I, too, wish I could turn back the clock but it all happens how and when it’s supposed to, right?
Keep feeling great, and thanks for the update!
Sue -
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