[lilstorm92]

#1059118

Hi all, (this is my 1st post) I’ve been living with Graves for the past 7 years. I have been in remission twice by taking PTU however Graves always comes back taking a toll on my body worse than before. I’m finally weighing my options on RAI or surgery and I’m leaning more towards surgery. So my question is…Has anyone had their thyroid removed? If so, how did you feel after? Was there any complications? Thanks in advance!

[adenure]

#1172333

Hi!

I haven’t yet, but my surgery is schedule for next Friday- the 15th. So, I will let you know how it goes.

Alexis

[lilstorm92]

#1172334

Please do…Thanks so much!! -Stephanie

[snelsen]

#1172335

Hi, Stephanie, welcome to this great forum.
in the meantime, use the search engine on the forum, write
“surgery” or thyroidectomy. There are some great discussions what it is like, from pre op to post op. I have recently written about my experience, covering how I felt, when I went back to work, pain,(very little) etc etc. No complications. Also, lhc11, or lch11, I can never remember which one it is, but I think it is the first one, wrote great posts about her recent experience with her surgery. Then you will have something to read and ask questions about before June 15 when Alexis has hers!
Shirley

[RebeccaJT]

#1172336

Hiya

Welcome. Yes I have, I’m six month’s post op and doing OK. Not perfect to be sure but then, I was really very, very ill by the time I consented to surgery and found a doctor I could trust.

It’s the best decision I ever made – and I say that knowing full well how not-perfect a solution it seems.

However, I’m in the UK and you are in America and your treatment options post surgery are way, way better than they are here and you have Armour readily prescribed should standard hormones not suit you, and a generally better understanding of this illness in your medical system.

You can read my whole story on ‘What to ask a surgeon re thyroidectomy’ on the board. And bear in mind, I was a bit of a ‘low bottom’ case by the time I got to surgery, my story is complex and long. And most people have a far simpler time of it. One lady I spoke to was up, out and jogging within a week of surgery – I think she’s already been mentioned, lch11 or something like that.

Good luck to you,

Rebecca
x

[lilstorm92]

#1172337

Thanks Shirley and Rebecca! I have been dreading both treatments for so long and now it’s time to make the “Big” decision. I’m feel awful, all the time. I just want this thyroid out so I can go out and enjoy a “normal” life. I haven’t felt normal in a long time so who knows what that feels like. lol!! I wish I would have found this group 7 years ago!! Do you know how many people think I’m dying when I tell them I have Graves or step back like I’m contagious. I find it funny now but 7 years ago I felt so alone. (well besides my hubby, he has been my rock) Thanks so much for listening!! -Stephanie

[PolishTym]

#1172338

It was one of the hardest decision I ever had to make, but it was also one of the best. I don’t feel like my ‘old self’ but I feel much better than when hyperthyroid and on methimazole.

[lilstorm92]

#1172339

PolishTym wrote:

It was one of the hardest decision I ever had to make, but it was also one of the best. I don’t feel like my ‘old self’ but I feel much better than when hyperthyroid and on methimazole.

Thanks so much for sharing!! Makes me feel a little better. I’m really leaning towards surgery. I just want to be done with my thyroid; it has caused me nothing but trouble.

Can I ask you why you chose surgery instead of RAI?

[PolishTym]

#1172340

lilstorm92 wrote:

PolishTym wrote:

It was one of the hardest decision I ever had to make, but it was also one of the best. I don’t feel like my ‘old self’ but I feel much better than when hyperthyroid and on methimazole.

Thanks so much for sharing!! Makes me feel a little better. I’m really leaning towards surgery. I just want to be done with my thyroid; it has caused me nothing but trouble.

Can I ask you why you chose surgery instead of RAI?

It was part gut, part head. I never felt comfortable with the RAI, although I respect other people’s preference for it. The thought of adding radioactive chemicals into my body always freaked me a bit.

I’ll be upfront that I don’t have a medical background, but I have a research doctorate that helped me evaluate the findings. I was able to access a number of peer-reviewed research articles, both domestic and foreign, through my university. Maybe I was biased by my gut, but I didn’t find the research supporting RAI over surgery convincing enough to change my position. There were strong arguments out there for surgery over RAI (e.g., RAI’s greater potential for eye problems or worsening eye problems; disagreements over dosing; some foreign organizations were suggesting longer isolation times than the Americans). One foreign study made a side note regarding America’s obsession with cost-saving measures, and the authors suggested this may be a factor in pushing RAI (e.g., cost of surgery; fear of lawsuits). A good amount of the foreign research was supportive of surgery, and the surgeon I chose was one of the domestic researchers.

My surgeon does a lot of procedures yearly–and he only does endocrine surgeries. His office had highly detailed information about the procedure and recovery. I felt very comfortable with him. I would not have allowed one of the local general or ENT surgeons do it, though. If I could not have had this surgeon perform it–he was literally called a “rock star” by other doctors–I might have gone with the RAI.

[snelsen]

#1172341

Hi PolishTym, my post is mostly about semantics and clarity.

I have worked with a lot of surgeons. They tend to like to do the procedures they like to do. I imagine your surgeon is a general surgeon, who decided to call himself (or others call him) an endocrine surgeon. Not sure what all that entails, but I do think a surgeon who does 50 thyroidectomies a year or more, may or may not call themselves an endocrine surgeon. But it covers a lot of territory in the body.
A Whipple, or a pancreaticoduendonectomy, which is done for pancreatic cancer, could be called an endocrine surgery. But in my experience, docs who do this procedure do a lot of them, prefer the belly, and probably would not be a good choice for a TT. I have not seen TT’s listed for these docs on the OR schedule. The only reason I am mentioning this, is so that any reader does not misunderstand your post, if they are referred to a general surgeon who does TT’s. I would not them to have any anxiety if the doc they were referred to is NOT referred to as an endocrine surgeon. I know general surgeons who are the “go to”surgeons for TT, but they are not referred to as endocrine surgeons. If the referral is made, it is likely that he/she does a lot of them because it is a surgery they like to do. The more significant thing is that they do a lot of them. The same docs probably do not do Whipples. A Whipple, a very major belly surgery involving the pancreas, gall bladder, duodenum, small bowel, gall bladder and more. All of them are general surgeons.
Shirley (had a thyroidectomy from a general surgeon who is known for doing them and liking that part of the body.)

[adenure]

#1172342

Shirley,

The surgeon doing my surgery next Friday is also a general surgeon, but specializes in neck surgeries. I decided against RAI also because it didn’t sit right with me. But, yes, I do respect those who feel that RAI is right for them. There is no “right or wrong” answer in my mind. Granted, if someone is having a hard time getting their thyroid levels stabilized, doing surgery (at that time) wouldn’t be recommended and there are different life situations that make one choice better than the other, but in general, I think a person needs to be comfortable with his decision. I’m also breastfeeding my son and that is important to me. I couldn’t continue that doing RAI. I do have to wean him for 7 days while I take the SSKI drops to prep, but it is temporary. I’d have to be away from my family for 8 days with RAI, and that was hard for me as well. The idea of waiting for something to die inside me and then it just sitting there, dead.– that was kind of odd too. Then, yes, I wondered what if I would need a 2nd dose if it didn’t quite work- I thought about the eye thing (even though I don’t have eye involvement that I know of). My mother in law knows someone who had RAI and she said it caused her digestive issues that she’s still dealing with (20 years post RAI- although maybe RAI was done differently then, I don’t know). I have a friend at church who did RAI for Graves and told me she wouldn’t recommend it. So….. I guess my initial thought to go with surgery was really what just sat best with me. Again, for some people RAI does sit better with them and it works really well. I’ve read positives (and negatives) for both RAI & surgery. Although, in my research anyway, I read more negatives with RAI— but again, you really never know how things will go, so you just do what seems best. Take the time to think it over and then do what you think will be right for you.

Alexis

[adenure]

#1172343

Also… I forgot to mention… we have 4 boys and don’t plan on having more children, but surprises happen. I know that you’re supposed to wait 6 mo- 1 yr. before conceiving after RAI. One can be careful, but you never know. If I got pregnant before that 1 year was over, I would worry. So, Stephanie, I’m not sure if you’re married or planning to have children soon, but that’s something to think about too.

Alexis

[lilstorm92]

#1172344

PolishTym wrote:

lilstorm92 wrote:

PolishTym wrote:

It was one of the hardest decision I ever had to make, but it was also one of the best. I don’t feel like my ‘old self’ but I feel much better than when hyperthyroid and on methimazole.

Thanks so much for sharing!! Makes me feel a little better. I’m really leaning towards surgery. I just want to be done with my thyroid; it has caused me nothing but trouble.

Can I ask you why you chose surgery instead of RAI?

It was part gut, part head. I never felt comfortable with the RAI, although I respect other people’s preference for it. The thought of adding radioactive chemicals into my body always freaked me a bit.

I’ll be upfront that I don’t have a medical background, but I have a research doctorate that helped me evaluate the findings. I was able to access a number of peer-reviewed research articles, both domestic and foreign, through my university. Maybe I was biased by my gut, but I didn’t find the research supporting RAI over surgery convincing enough to change my position. There were strong arguments out there for surgery over RAI (e.g., RAI’s greater potential for eye problems or worsening eye problems; disagreements over dosing; some foreign organizations were suggesting longer isolation times than the Americans). One foreign study made a side note regarding America’s obsession with cost-saving measures, and the authors suggested this may be a factor in pushing RAI (e.g., cost of surgery; fear of lawsuits). A good amount of the foreign research was supportive of surgery, and the surgeon I chose was one of the domestic researchers.

My surgeon does a lot of procedures yearly–and he only does endocrine surgeries. His office had highly detailed information about the procedure and recovery. I felt very comfortable with him. I would not have allowed one of the local general or ENT surgeons do it, though. If I could not have had this surgeon perform it–he was literally called a “rock star” by other doctors–I might have gone with the RAI.

Thanks so much for sharing. I have the same “gut” feeling. I felt this way for the past 6 years. I did do a lot of research but trying to find an endocrinologist who agrees with surgery instead of RAI was the hard part. I finally found one who referred me to a general surgeon who specializes in endocrine surgery. So I’m kind-of excited to meet with him and see what he has to say. Thanks again!
Where did you have your surgery?

[lilstorm92]

#1172345

adenure wrote:

Also… I forgot to mention… we have 4 boys and don’t plan on having more children, but surprises happen. I know that you’re supposed to wait 6 mo- 1 yr. before conceiving after RAI. One can be careful, but you never know. If I got pregnant before that 1 year was over, I would worry. So, Stephanie, I’m not sure if you’re married or planning to have children soon, but that’s something to think about too.

Alexis

Alexis,
I have little 2 boys and I would like to have 1 more but after I get rid of my thyroid. I was diagnosed after my first son was born. Was able to get pregnant while on PTU and went into remission while pregnant. Shortly after delivery Graves came back stronger than ever. Been on PTU ever since and can’t get my levels in a “normal” range. So I decided it’s time…I want to take back control of my own body. (Does that make sense?) I feel so tired and weak all the time. Something has to change. Thanks so much for listening!!

-Stephanie

[PolishTym]

#1172346

snelsen wrote:

Hi PolishTym, my post is mostly about semantics and clarity.

I have worked with a lot of surgeons. They tend to like to do the procedures they like to do. I imagine your surgeon is a general surgeon, who decided to call himself (or others call him) an endocrine surgeon. Not sure what all that entails, but I do think a surgeon who does 50 thyroidectomies a year or more, may or may not call themselves an endocrine surgeon. But it covers a lot of territory in the body.

In my case, the surgeon was described by the university hospital as a specialist in endocrine surgery, but he did chair the general surgery department at a large research university hospital. His research area is in endocrine surgery, and he trains others in thyroidectomies. The yearly number I was given was about 300 per year. I don’t know how he times to write research articles, too!

I bring this up simply to say we have our own comfort zones. For me, this fit my comfort zone. I understand the university culture and lingo, and his research productivity meant something for me. For others, not. Someone else might want a different kind of surgeon–maybe someone more down the street who they can see more. Or not surgery at all. But we each have to live with our decisions, and I haven’t regretted my surgery because it fit my comfort zone and was a success.

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