[etleon05]

#1059465

Hello everybody –

My name is Emily. I was diagnosed with Grave’s last year in November – it’s been a ride. My symptoms where very strong at the beginning, after taking meds I started feeling better, but my levels had gone up once again – “toxic” my Dr. said. Everything I felt was pretty scary, high anxiety, panic attacks, the sensation of burning inside, no sleep, easily irritable, body shakes, feeling tired and having no energy.. simply all the symptoms intensified. This was scary.

My levels have been good for the past 4-6 months, but I still feel like crap, I’m tired/ weak, emotional (perhaps depressed), can sleep right, my muscles hurt (feels like somebody beat me up), and my breathing is heavy at times.

I’m going in 10 days to get my thyroid removed, to be honest I’m a little afraid that this may not take care of this. It may sound vein but I’m also concerned about the weight gain.

I would love to hear from people that has had a total thryroidectomy, their experience, how are they feeling now and how long did it take to be back to your old self.

I miss me, I miss my energy, I miss being active. To me, this seems to be the one way to fix all this and I hope fullheartedly that it will.

Thank you all in advance for your help.

1<3

[jaqeinquotation]

#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

[jaqeinquotation]

#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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[adenure]

#1174817

Hey Emily
jaqeinquotation posted my post that I would have said to you

Your feelings are completely normal. I too was a nervous wreck and cried a lot, even the morning of my surgery- until they gave me something to relax me- (verset) or something like that. Like my post says, just do your best to find the best surgeon who does A LOT of thyroidectomies.

I do feel much better- I too am active and am able to enjoy and live life again now that I’ve had surgery. Do I feel perfectly awesome? No, but then again, who does, right? Most of us have some type of medical issue (or multiple problems), so we do the best to take care of the problems, heal, and live life with our new normal. My new normal is WAY better than being hyper with Graves, that is a definite. ATD’s were not an option for me due to liver issues, so I had to choose. I didn’t feel horrible on methimazole, but not great either. So, I think the surgery was the best choice I made; plus, negative effects of Synthroid aren’t nearly as common or severe as those of ATD’s. Knowing that I won’t be hyper ever again (as long as I have the right dose) is a great comfort. You never know what else is around the corner (I’m hoping for good health for a long time- hopefully!), but it’s good to know that there is one path that I won’t see again- the path of hyperthyroidism!

[etleon05]

#1174818

Thank you Jaqe and Alexis for the post!

I was in tears today, thinking about my choice. I do want to feel better, just scared that I won’t be myself again.

Alexis – your words and positivity is very refreshing and helpful at this moment.

Not sure if my surgeon is a “top” one but I know he has been performing thyroidectomies since 1997 – he performs about 2 surgeries a week.

I want to keep my spirits up and be positive about the surgery. I’ve read some bad stories on other forums and to hear that you may not feel better, makes me question my choice. I want to really believe that I will feel better.. I’m tired of feeling like this and tired of feeling limited

I hope other people that have gone through a total thyrodectomy can post their experience.

Again thank you Jaqe and Alexis.. it feels better when you are not alone

1<3

Emily

[DonnaG]

#1174819

I was diagnosed with Grave’s disease at age 30 – 22 years ago. I was so sick in hyperactive state that at times I thought I was loosing my mind. My heart raced, I was very weak and raising my 3 children was totally overwhelming. Many times I was reduced to tears by my inability to cope with daily life – these feelings are all quite normal I have come to understand in the hyperactive state. I had radioactive iodine therapy to treat my overactive thyroid – the first dose was insufficient to quiet thyroid storm condition so I underwent a second dose of radiation as well. I felt immediate relief from overactivity and have been able to carry on normally since the 2nd radiation treatment.

My 12 year old daughter was also diagnosed with Grave’s Disease. We didn’t want her to have radiation at her young age so she had a thyroidectomy surgery at age 13. The results were quick and satisfactory. The young girl who was previously an emotional wreck because of thyroid storm / Grave’s disease was able to return to normal life. By age 16 her hyperactive symptoms returned. To our dismay her thyroid regenerated – like the tail of a lizard is able to regenerate, I guess (our surgeon told us in the country of Turkey studies have show thyroids regenerate as much as 16% of the time). Our daughter had a second thyroidectomy at age 16. Like the rest of us she will always have to follow up with her doctor to be sure proper levels are maintained in her blood. Now our daughter is 25 years old and married. We’re very happy that she had the TT surgery and was able to return to normal life. She works full time and hopes to start a family in the next five years. We’re certain she would not be the person she is today had she not undergone TT treatment.

Until there are better alternatives our family recommends RAI and TT therapies. We are living proof that you can feel better after this debilitating disease takes hold of one’s life.

etleon05 wrote:

Thank you Jaqe and Alexis for the post!

I was in tears today, thinking about my choice. I do want to feel better, just scared that I won’t be myself again.

Alexis – your words and positivity is very refreshing and helpful at this moment.

Not sure if my surgeon is a “top” one but I know he has been performing thyroidectomies since 1997 – he performs about 2 surgeries a week.

I want to keep my spirits up and be positive about the surgery. I’ve read some bad stories on other forums and to hear that you may not feel better, makes me question my choice. I want to really believe that I will feel better.. I’m tired of feeling like this and tired of feeling limited

I hope other people that have gone through a total thyrodectomy can post their experience.

Again thank you Jaqe and Alexis.. it feels better when you are not alone

1<3

Emily

[jaqeinquotation]

#1174820

Thanks for sharing your story etleon05:)

[etleon05]

#1174821

Hi all,

So.. It’s been 14 days after TT. I have to say, I’m no longer tired, my muscles stopped hurting, my eyes decompressed a bit. I also lost 7lbs. The downsides: I got back home felt nausea but I believe that was due to the pain killers and the antibiotics. I’ve was heat intolerant (I believe it’s also a side affect of levothryroxine), restless and hands were shaking a bit again. I was not able to sleep properly for 3 days since I was restless, I felt very crappy. Short of breath and my heart would beat hard at times. I feel it less as the days go by though.

I started taking Levothyroxine 100mcg the very next day after surgery. And I’m taking it every day, 1x a day. I’m also taking Propranolol 10mg, 2x a day to just help me slow down at the moment.

Endo checked my levels last week on Friday and they were actually borderline. I will get another blood work in a month. I will keep you guys posted on results and symptoms then.. BUT!! So far, I believe it’s good, I feel a bit better every day

Thank you all for your support. Again, I would like to check back in so this can help someone else down the line as it helped me.

Good luck jaqeinquotation!!!

1

Emily

[Kimberly]

#1174822

Hi Emily – Thanks for checking in! Yes, these updates will be very helpful for other patients down the road who decide to pursue surgery as a treatment option. So glad to hear that you are feeling better and better!

[snelsen]

#1174823

Hi Emily, of course I was going to refer to the post by Alexis, and I think you would appreciate reading the post by lhc or lch but now I am forgetting rest of her posting name, it might be followed by 11, lhc11, but I bet you can find it.

I am another person who had a thyroidectomy when I was 24, many years ago. I have always been glad I chose that option. I went home the next morning, ate right away, chewing tough food had to wait a few days, cause your neck has been in an extended position, and the muscles are sore. I had a little help the first week, cause I had a baby, whom I continued to breast feed. I went back to work full time in 2 weeks, that was a mistake, I should have taken the third week off, and/or gone back part time. Was really tired.

Your surgeon has done plenty of this surgery in a year. The general advice is that at least 50 a year, and he is way over that at almost 100/year.

Sounds like you are doing well!
Shirlwy

[Carito71]

#1174824

etleon05,

I’m so glad your surgery went well and that you are feeling better every day. I’m currently on Methimazole but if that doesn’t work, I want a TT. Reading you gives me hope. Please continue updating us on your recovery.

Hope you feel well soon and back to your old healthy self in no time.

Caro

[MaryI]

#1174825

Hi everyone. I have been on Methimazole since June 2010. I will be having “the discussion” again in a few weeks with the Endo about either RAI or TT. My preference is the TT, if I have to make a choice, maybe because I am a twice cancer survivor, and I would rather get rid of the gland entirely.
Does any one else have a goiter or does everyone have one with Graves? Did having a goiter influence your treatment decision? Mine seemed to decrease for a while, now is getting larger. I get an thyroid ultrasound on Dec.3/12.
I have been reading the comments and it seems that those that chose TT are better faster, in general, and happier with their treatment.
Thanks for your help!

[snelsen]

#1174826

Well, the definition of goiter is that it is an enlarged thyroid gland, usually due to abnormal production of thyroid hormone, either under or over production. It is also enlarged, with a significantly increase in size, in countries and people who do not have iodine, or sufficient iodine, in their diet.
When was first diagnosed with Graves’ my thyroid gland was enlarged. There are all degrees of enlargement. Before I had my TT, I (and this is part of the pre-op preparation) took KCL (potassium iodide) drops, the goal is to reduce the size and vascularity of the gland before the surgery. All went well.

As has been said in this forum many times, it is great that we have three choices. I think your thought about TT and recovering faster, getting back to baseline sooner, is probably true. There is more a time lapse after RAI.
Good luck in your decision making!
Shirley

[mhanscom]

#1174827

Hi Emily,
I just read your first post. It sounds just like me. I have posted my scenario as well, but hadn’t read yours before. It was like you were posting for me. Then I read you had a TT 14 days ago. I had mine on Nov 12th. I feel exactly the same way you do. I get my levels checked tomorrow. I definitely know they are lower. The heart palpitations have stopped and I feel like the pressure has been lifted off my chest. I was on 100mcg of Synthroid when I left the hospital and my Dr. moved it to 75mcg 3 days later. I have been weaned off the beta blockers too.

I am still a bit tired but I am not sure if it is from the healing process or the thyroid. Time and tests will tell. I am really cold all of the time even colder than I was before. I too am worried about weight gain but my Dr. said if I eat healthy it should be no more than 5lbs. I have read differently but I guess this is the least of my worries.
So far I have been please with my decision to have it removed. The symptoms were so severe they were scary. When the Dr. said that my own body was killing itself I really knew this was a big deal.

You can read more about me on my post, search for mhanscom.
Hopefully this will help someone. I know the posts help me make my decision.

Michelle

[currietm]

#1174828

I love hearing all the positive TT stories. Mine is scheduled for December 27th. When I left the office and was handed the ‘neck cleaning’ stuff…. It all became very real…. I was getting really nervous the week after and was looking more towards RAI….. but I just cant do that so surgery it is and I’m not so nervous anymore. I’m not afraid of surgery, I’m afraid I wont feel good again and there will be no going back!

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