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in reply to: Flu shot and Graves/TED #1175088

Thanks for your responses everyone!

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in reply to: Went to the endo today… #1175044

Hi there,

Isn’t this forum great? Always someone there to provide some guidance and support through their own experiences.
I had my first consult with the surgeon on the 22nd of October…after seeing my Endo a year and I’m not so sure why it took him so long to suggest surgery but then again he seems to work better when I tell him what to do. Hard to believe but true. After meeting with the surgeon he sent me for an ultra sound then referred me to another surgeon (at one of the well known hospitals here in Canada..Mount Sinai) however that appointment is not until November 30th. Im pretty sure that the surgery won’t be until early next year.
Hang in there:)

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in reply to: Results after Total Thryroidectomy #1174820

Thanks for sharing your story etleon05:)

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in reply to: Results after Total Thryroidectomy #1174816

found these from other posts in the forum…hope they help:)

Oct. 8, 2012 11:14 AM
adenure

Registered: 2012-03-22
Posts: 304
Profile PM
9 days from Total Thyroidectomy
Hi!

Yes, the horror stories had me in tears many, many nights. I had my TT almost 4 months ago and am doing well pretty much. Not 100% pre-Graves lady yet! But, I’m doing way better than when I was hyper, no doubt there! I’m able to take care of my family, homeschool my boys, exercise, and enjoy life again. I still get headaches and have bouts of insomnia, but it’s not as bad as it was, so I’ll take it with hopes of improvements as time goes on!

I would suggest that you really make sure you have a great surgeon; it will reduce the risks of complications by a lot. I was fortunate to have one of the top 10% in the nation that my mom happened to know and work with in the OR, so I was nervous, but confident going in. I was in the hospital recovery for 4 hours and then sent home, but most surgeons have you stay 24 hours. I had a subcuticular stitch (about 2 3/4 inches long) and 1 suture that was removed a week later. My scar looks pretty good. No drain. My parathyroids and calcium levels are fine, but as a precaution, my surgeon had me take 1000 mg of Tums 4 times a day the 1st week, 3 times a day the 2nd week and twice a day the 3rd week post TT. Tums won’t hurt you, so it probably isn’t a bad idea. I slept upright for 3 nights in a chair to help with drainage. I only took Advil for pain- no prescription meds or anything. They gave me SSKI (potassium iodine) drops for 7 days before surgery to shrink the thyroid and draw blood away from it to make it easier to operate on. This is not something you should take though for more than 2 weeks as it can make hyperthyroidism much worse.

I would say the first 48 hours were the hardest. Day 6 I felt better. My voice was weak, raspy and tired easily for 3 weeks, but I could breathe, talk and swallow right away. Just be careful with that first sip of water- slowly & with concentration! I almost choked- whoops!

I started SYnthroid on day 2 at 100 mcg- 6 weeks later labs showed a 6.35 TSH, so I was upped to 112 mcg. My TSH got to normal in 2 weeks at .79 and 4 weeks later at .68 with my free T4 in the upper range of normal. I won’t lie, the first 3 and 1/2 months of figuring out Sythroid was no picnic. I had symptoms of just feeling off, headaches, insomnia- just not good. Your body’s hormone stores can last up to 2 months, but then it’s just the Synthroid in there (per my endo’s words)- so, your body is trying to make the adjustment. I still get some headaches- but not as much and not too bad- I don’t usually need any Tylenol or Advil for them. Insomnia happens- but it’s not too bad. It’s probably my biggest complaint though. I haven’t gained any weight at all. I exercise hard cardio 4 times a week for 30 min. I didn’t start that though until about 2 1/2 mo. post TT (and I was in really good shape before getting Graves). I just took 10 min. walks until I would feel “weird” floaty/ spacey, then I’d stop. It was frustrating, but it is a long, slow process to getting better completely- so you have to have A LOT of patience. But, it WILL get better- it’s just not quick.

Good luck to you!

Alexis

Homeschooling mom to 4 wonderful boys!
Diagnosed with Graves Disease after my 4th baby- March 2012
Started on 5 mg. of methimazole daily for 7 weeks
Euthyroid at the end of those 7 weeks, but had to stop methimazole as liver enzymes were 8 times normal range.
Total Thyroidectomy- 6/15/12
Started Synthroid (brand name) 100 mcg. 2nd day after surgery for 6 weeks (TSH: 6.35 & free T4 in upper range and T3 just under mid- range).
Upped Synthroid to 112 mcg. 7/27/12
Euthyroid as of 8/10/12 on 112 mcg. Synthroid (TSH .79 and free T4 in upper range).
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#3 Oct. 10, 2012 07:58 PM
PolishTym

Registered: 2011-03-01
Posts: 43
Profile PM
9 days from Total Thyroidectomy
I have no regrets with my surgery. It went smoothly. Some weird tingling in legs and feet went away after a few days. I have no scar now. I did not have to worry about radiation effect on my kids.

I went to the surgeon who specializes in this and teaches in-training surgeons, and he was recommended by my endo and the doctor who does pre-surgery physicals. This comforted me greatly.

Diagnosed 2009
Total Thyroidectomy 2011
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in reply to: Another question…What is? #1174809

thanks:)

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in reply to: Results after Total Thryroidectomy #1174815

Hi Emily,

I know exactly and I mean exactly how you feel. I met with a surgeon this week who suggested a second opinion and is sending me to another just to be sure this is what I want to do. I too miss my old self and I would like to get back into the gym and most of all get back into the studio. Another reason why the surgery scares me is because I live to sing and it seems I’ve been silence literally since this dreadful disease reared it’s ugly head.
The first surgeon says that there is always a risk of damage to the vocal cords and that it is possible that I won’t be able to hit that really high note (which is ok with me)
A part of me would like to wait it out and hope for remission but I don’t even know what that means because we feel terrible as it is. I considered RAI but i have TED and I can’t bare for my eyes to get any worse as I heard is a real possibility if I go that route.
Radiotherapy I was also told could damage the tissue around my eyes-fear of catorax etc.

Hopefully someone who has had their thyroid removed will be able to share their
experience.

I wish you all the best when you have your surgery. God will see you through it all.

jaQe

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in reply to: Graves’ and dating…This title sounds so superficial #1174680

I know exactly what you mean. First of all I never thought I would meet anyone who would understand let alone look at me without feeling sorry for me. It’s a tricky one but I couldn’t have explained it in one sitting. I had to explain a little at a time especially since I don’t understand it all myself. I’ve heard so many horror stories and it makes me look back on my previous relationship and I realize now how important it is to have a great support system. One who is committed no matter what. Now thats alot to ask someone expecially since the moods swings are nothing to play with. I pray often and I ask my higher power to keep me grounded and aware of when I feel myself “switching up”. It’s not easy but I try to eat right and decrease the monster called stress.
Take it one day at a time:)

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in reply to: Super-severe TED… anyone else? #1174705

Thinking about you and hope you are doing well:)

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in reply to: Quitting my job #1174704

I’m also thinking about you angelamercy. I work in an office full of ladies and in the beginning everyone asked why was I wearing sunglasses inside. I can imagine that behind my back they probably tear me up but I could care less because my work is seperate from my home life. I never mix the two. For the most part everyone just looks at me as the lady with the shades. I stare at a computer for most of the day and to be honest I wing it most of the time….Vision is often blurred but I make due because I have no other choice. If I stop working I’m finished….It make me sick to my stomach to think how mean those ladies were to you and it’s a shame they don’t realize that graves and thyroid eye disease can happen to them also.

I wish you all the best and I’m sure you are making the best choice for you.

Take Care

[jaqeinquotation]

in reply to: Any remedies for bags under eyes? #1174638

No mariaboo, no treatment yet…just swelling under the eyebrows (not the eyelids) and bags under my eyes

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in reply to: Surgery or the pill? Which is better? #1174468

Thanks for responding everyone. I have an appointment with the surgeon on the 15th. I still haven’t decided which procedure to go with but I’m leaning more towards the surgery because I also suffer from TED, I too have heard that the pill may cause my eyes to flare up even more. I’m not sure what that would do to me since everyday is a blurr as if I’m looking through a glass filled with fingerprints.

I’ll keep researching

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in reply to: I don’t think the Prednisone is working #1173209

Apparently it can help those who don’t respond well to cortisone and was used to treat Mrs. Bush for the same problem. The info says that people with diabetes or poor blood circulation are more at risk for side effects with this kind of treatment. I have neither so I really hope Im a good candidate.

[jaqeinquotation]

in reply to: I don’t think the Prednisone is working #1173207

Hi there,

I can still see colors but the double vision is intruding on my main gaze-when I stare straight. Not all the time but more than enough and darn is it annoying.

Has anyone heard of Radiotherapy?…apparently it can help to reduce the inflammation and swelling/puffiness dramatically and is performed during the inflammed stage.

I am definetly interested and want to get this done asap….I’m so excited about this option
Would I speak to the Opthamologist or muscle Specialist or can I speak with the endo?

I have stopped taking the prednisone after 1 month as I don’t feel it worked much. I was experiencing serious fluctuations in my mood-I was mean, and extremely short tempered and I could cry at the drop of a hat…..I had to stop it.

[jaqeinquotation]

in reply to: I need help in Canada #1173269

Hi Im from Canada-Brampton Ontario and there is absolutely nothing here. I wish there was more of a support group here but until then this forum is amazing!!!!

[jaqeinquotation]

in reply to: I don’t think the Prednisone is working #1173204

Hi there,

So just an update after my opthamolgist appt. He confirmed TED, said the back of my eyes are dry…gave me some eye drops, said he would monitor me for a least a year before surgery and called it a day. I thought I was gonna reach out and grab him-because I’m not sure I can manage this double vision, swollen eyes for another year. The double vision as I’ve mentioned before is driving me up the wall. For example: I’m at work typing this now but everytime I look down at the keyboard then look back up, everything get doubled up for about 2-3 seconds. It sucks and I wonder how much longer I can fool my boss.
The opthamologist suggested I see a muscle specialist in 3 months but I made sure that appt was booked for the 3rd week in September. I will see the opthamologist in 3 months though. What I don’t understand is how can he tell me whether or not my eyes are in active or non active phase? I told him I have the swelling since last June and as far as Im concerned that’s been more than a year.
What I want to know is can I insist on the surgery? I really feel like I’m loosing my vision but according to the optometrist and opthamologist…I’m good.
I’m tapering off the prednisone now-should be done at the end of this week and I am not looking forward to symptoms coming back..The next visit Im going to ask for a referral to the neuro-opt…I’m sure the doc will ask why but Its my right

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