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#1 July 19, 2017 14:13:04

Suzzzanne
Registered: 2017-07-19
Posts: 5
Profile  

Thyroidectomy after 7 years of resistance

Hello - I had to re-register because I could not remember my original info. I have been reading this forum for about 6 years. It has been informative as heck and I have gotten great comfort in our common denominator - Graves.

I am 53 years old and after many years of battling Graves, I decided to have my thyroid out. I was on Methimazole for years and had ups and downs but never could find a great place. My first doctor wasn't someone I “meshed with” and was adamant that I have it removed immediately. I changed doctors and through the years my new fabulous doctor supported me in my treatment plan although I know she would hope that one day I would get to the point where I made the decision to remove it. I had all the anxiety, all of the emotional side effects, I lost weight, I gained weight, my body ached, and at times I felt great. I think in my case, it all became the “new norm” for me. This past year was extremely bad as far as symptoms and I mentally was drained from it. I even, for the first time, went Hypo for a short time and then my TSH disappeared again. I tried eliminating foods, supplements, you name it, I gave it a shot. But this past year the sweating was disgusting. I would just sweat buckets when everyone else was shivering. And if I had one adult beverage, I was a fountain. I just got so sick of it all I finally scheduled a thyroidectomy. I am fortunate to live in an area where we have top surgeons and on June 23rd I said goodbye to my thyroid. The surgery went well, I stayed over one night and then came home. Not sure why but I never slept a wink in the hospital. I was wide awake but when I came home the next day I slept for 36 hours straight. Got up to pee and take some pain meds and that was it. And after that, it was just tylenol. I have to say that an immediate feeling of calm came over me. The worst part of the surgery was the after effects of the breathing tube they insert. My throat was so sore for a few days and I could hardly swallow. The incision itself was nothing compared to my throat. I had glue over it and when it came off after about a week my incision was perfect. I am not saying it wasn't sore, but it wasn't bad. It has been 3-weeks since my surgery and I am taking Levothyroxine 125 mcg. I saw my endo today and I still have a 0.01 TSH level but she said it takes some time so we are going to stick with my dose and recheck my levels in three weeks. We talked about the different choices of thyroid meds and treating T3 and how she felt about that. As I said, right now it's to early so if I need that at least I know she is open to it. I was tired for about 2-weeks and then I started to snap out of it. My sleep cycle was a little off for about a week but it's better. I don't sleep nearly as much as I did before because I think my body running so fast all day exhausted me. I would sleep for 12 hours at a pop with no trouble before. So things are great so far. I am petrified that I am going to gain a ton of weight but who isn't…….I am in my 50's. I have been very careful, even though it's soft ice cream season, and I have only fluctuated 5 pounds up and down. Not to bad. Now if you ask me now that I have had my thyroid removed if I regret waiting so long……….well yes because even though it's only been 3-weeks and even know my TSH is still so low I do feel so much better. I was stubborn as hell and really thought I could regulate it. I came here to share my experience with all of you because although I was often a silent participant here, I got a lot of knowledge and infor from everyone's posts. So I wanted to share my personal experience with my journey of Graves. If anyone has any questions please ask. Thanks so much….Suzanne

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#2 July 20, 2017 19:52:27

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 3993
Profile  

Thyroidectomy after 7 years of resistance

Welcome back - and thanks for sharing your story!

If you remember the email that you used to set up your original account, you can contact the GDATF using the form below, and we can try to look up your screen name & get your password reset.

http://gdatf.org/about/contact/


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 July 21, 2017 17:30:45

AzGravesGuy
From: Peoria, AZ
Registered: 2012-08-07
Posts: 143
Profile  

Thyroidectomy after 7 years of resistance

Hey Suzanne!

Welcome back and welcome to the TT club! The surgery that changes your life!

It will take some time to get your levels back to normal but when it happens, it's magic. Remembering what it feels like to “not be sick” can be challenging and exciting. The hard part is having the patience to let your body rebuild from the assault of Graves' before tackling the world.

I really connect with you having “an immediate feeling of calm” post surgery.When I felt that, I knew I had made the right decision with surgery. No question. I remember that feeling now and have never been more grateful for making the decision.


As far as weight gain…again, patience is a good mindset to keep. In my case, since surgery 3 years ago, I have lost 70lbs and now have about 10% body fat. (I'm 40's, 5'7" and 150lbs.) My Synthroid has gradually been adjusted to a dose of 175 mcg. The key in my case has been limiting carbs. I follow a Vegan Ketogenic diet.

Exercising becomes easier and actually shows results as your body recovers from being under attack all those years. Your energy level will grow as you heal. Prepare to be surprised how good you're capable of feeling.

You may fluctuate weight wise getting stabilized. The weight you gain from getting stabilized is temporary IME. Just remember…your metabolism is changing chemically and will be different once you are stabilized on T4. If you find yourself gaining after T4 stabilization, look at your diet. Some people on T4 don't handle carbs well. I have been Vegan 16+ years. I gained some weight 2yrs post surgery. As soon as I increased protein and cut out carbs, the weight fell off. Less bread more broccoli. Lol

I wish you the best of luck in your post surgical life transformation. Keep us posted!

Edited AzGravesGuy (July 21, 2017 17:36:41)

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#4 July 22, 2017 04:06:49

Liz1967
Registered: 2014-02-25
Posts: 202
Profile  

Thyroidectomy after 7 years of resistance

I had a TT four years ago, best decision I ever made. The only weight gain I have had was because of the high dose steroids I was on a few times for the eye disease. I keep my TSH between 1 and 2, the FT4 is unreliable for me so as long as it is in the normal range somewhere I ignore it for dosing. I feel exactly as I did preGraves. I take no supplements and follow no special diets except trying to eat healthy. I walk several miles a day, garden, babysit a toddler and do yoga and I am 68, so I have plenty of energy. You will be so happy to have your life back. It is hard at first to not blame every little headache or muscle ache or whatever on your dose, but you had those things occasionally before Graves I'm sure. Once your labs are at a good level, you are pretty much good to go. Congratulations!

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#5 July 22, 2017 12:40:14

Suzzzanne
Registered: 2017-07-19
Posts: 5
Profile  

Thyroidectomy after 7 years of resistance

AZ GravesGuy - It's nice to hear that someone understands the “calm”. Even though my TSH is no better yet, it's only been three weeks, I cannot deny that feeling. It's also interesting to hear from a male that has Graves.

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#6 July 22, 2017 12:40:53

Suzzzanne
Registered: 2017-07-19
Posts: 5
Profile  

Thyroidectomy after 7 years of resistance

Thanks Liz!

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#7 July 24, 2017 18:23:08

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 3993
Profile  

Thyroidectomy after 7 years of resistance

@AZGravesGuy - Good to see you checking in. Interesting comments on diet. I really like the idea of being vegan, but love my dairy…and crave an occasional hamburger. And oh, the carbs! If someone could figure out how to make broccoli look, taste, and smell like bread, they would make a fortune!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#8 July 29, 2017 03:53:50

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 110
Profile  

Thyroidectomy after 7 years of resistance

Congratulations on your thyroidectomy. I was so happy to get mine. I was kind of the opposite of you - I'd actually chosen TT when I was first diagnosed, but had issues (finding a surgeon, becoming euthyroid) and just got comfortable on the methimazole and stuck with it for four years. I only got my TT after developing a suspicious nodule. I was so happy to have my thyroid removed. Afterward, it was such a relief. When I originally contemplated thyroidectomy 4 years prior, I was worried about the scar, but after it was over, I found myself taking every opportunity to admire in the mirror. It reminds me that I really am so fortunate to have had a great surgeon and a benign diagnosis.

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#9 July 30, 2017 08:27:57

Suzzzanne
Registered: 2017-07-19
Posts: 5
Profile  

Thyroidectomy after 7 years of resistance

I agree with you about being fortunate to have a great surgeon and a benign diagnosis. I am very grateful. I actually was so fond of my surgeon for what he did. Medical people amaze me but a quick relationship he and I had though. I told him my scar was like his signature art work. And although my levels are exactly the same before my thyroidectomy, I feel fabulous so I can't figure it out. Maybe it's the lack of Methimazole in my body. Even though I took it long enough, I hated it. Now I just have a really raspy, weak voice but you know, I feel so great I don't even care that I have that side effect! I am sure it will clear itself up. Here's to feeling fabulous!




emmtee
Congratulations on your thyroidectomy. I was so happy to get mine. I was kind of the opposite of you - I'd actually chosen TT when I was first diagnosed, but had issues (finding a surgeon, becoming euthyroid) and just got comfortable on the methimazole and stuck with it for four years. I only got my TT after developing a suspicious nodule. I was so happy to have my thyroid removed. Afterward, it was such a relief. When I originally contemplated thyroidectomy 4 years prior, I was worried about the scar, but after it was over, I found myself taking every opportunity to admire in the mirror. It reminds me that I really am so fortunate to have had a great surgeon and a benign diagnosis.

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#10 Sept. 18, 2017 01:17:28

ling
Registered: 2017-09-17
Posts: 2
Profile  

Thyroidectomy after 7 years of resistance

hi suzzzanne, did you have any heart symptoms in the 7 years?

thank you

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