# Does anyone regret having thyroid surgery?



## I DClaire

I wish we could all actually get together somewhere and visit. Wouldn't that be nice? 99% of what I know about thyroid problems I have learned from members of this website and for that I am most appreciative. Before it's all over I'm going to learn how to understand test results but that's for another day.

I have talked to (locally and online) numerous people who ALL say they're glad they had their thyroid removed surgically. Some had it done weeks or months ago, some had it done years ago.

Question! Do people ever regret having their thyroid surgically removed? If so, why? 

My hairdresser was telling me today about two of his clients, two women who are both in their 50's, they're roommates, they both work at a local hospital in two different departments. Both were diagnosed with thyroid problems but he doesn't know the nature of their diagnoses, surgery was an option for both but only one has had surgery.

The woman who had surgery initially said she was disappointed, she had not experienced the return to feeling well she had anticipated *BUT *2-3 months later she now reports that she is feeling exceptionally well and has no regrets.

Does anyone here who has had surgery regret going that route?


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## webster2

I DClaire said:


> I wish we could all actually get together somewhere and visit. Wouldn't that be nice? 99% of what I know about thyroid problems I have learned from members of this website and for that I am most appreciative. Before it's all over I'm going to learn how to understand test results but that's for another day.
> 
> I have talked to (locally and online) numerous people who ALL say they're glad they had their thyroid removed surgically. Some had it done weeks or months ago, some had it done years ago.
> 
> Question! Do people ever regret having their thyroid surgically removed? If so, why?
> 
> My hairdresser was telling me today about two of his clients, two women who are both in their 50's, they're roommates, they both work at a local hospital in two different departments. Both were diagnosed with thyroid problems but he doesn't know the nature of their diagnoses, surgery was an option for both but only one has had surgery.
> 
> The woman who had surgery initially said she was disappointed, she had not experienced the return to feeling well she had anticipated *BUT *2-3 months later she now reports that she is feeling exceptionally well and has no regrets.
> 
> Does anyone here who has had surgery regret going that route?


Very good question, indeed! I am sure you know my answer! I think if I hadn't had the cancerous business in there, I might have given the ATD's a little while to work..maybe, maybe not! I am a happy girl!


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## Lovlkn

I have heard of people who regretted RAI but never heard of anyone who regretted having surgery.

*Proper replacement post op is key.*

You must dose yourself by FT-4 and FT-3 not TSH.

If you cannot find a doctor to prescribe your replacement based on how you feel and your lab's FT-4 and FT-3 then keep looking for one who will.

Been there done that- meaning it's taken me 5 different doctors before finding one to treat my replacement dosing properly. My experience has been Endo's are the worst for proper replacement as all I have encountered only dose off TSH which I find surprising.


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## webster2

Lovlkn said:


> I have heard of people who regretted RAI but never heard of anyone who regretted having surgery.
> 
> *Proper replacement post op is key.*
> 
> You must dose yourself by FT-4 and FT-3 not TSH.
> 
> If you cannot find a doctor to prescribe your replacement based on how you feel and your lab's FT-4 and FT-3 then keep looking for one who will.
> 
> Been there done that- meaning it's taken me 5 different doctors before finding one to treat my replacement dosing properly. My experience has been Endo's are the worst for proper replacement as all I have encountered only dose off TSH which I find surprising.


Your post gives me great hope. I will keep trying until I find one, if I haven't badgered my GP into treating this way. Thanks!


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## I DClaire

Lovlkn said:


> I have heard of people who regretted RAI but never heard of anyone who regretted having surgery.
> 
> *Proper replacement post op is key.*
> 
> You must dose yourself by FT-4 and FT-3 not TSH.
> 
> If you cannot find a doctor to prescribe your replacement based on how you feel and your lab's FT-4 and FT-3 then keep looking for one who will.
> 
> Been there done that- meaning it's taken me 5 different doctors before finding one to treat my replacement dosing properly. My experience has been Endo's are the worst for proper replacement as all I have encountered only dose off TSH which I find surprising.


For me to find 5 different doctors who are that knowledgeable about treatment will probably mean having to go out of state!  I'm only half kidding - I think I'd feel infinitely more confident about all this if I knew I had a knowledgeable physician waiting on the other side of surgery.

What kind of doctor do you recommend for treatment following surgery? I honestly have gone from worrying about finding a good surgeon (I think I've done that) to wondering who will treat me from that point on AND what is involved in getting the best possible follow-up treatment?

I realize initially, maybe for a matter of months, numerous blood tests will be required. But, once a patient finds the optimal dosage of the medication that works for them, how often do you have to be re-tested.

I've never shared this with you guys but I am *THE WORLD'S WORST* when it comes to blood tests. It's all I can do to walk from my car to the lab when I'm going for blood tests. I have to lie down. For my nuclear stress test I had to have a "baby needle". I give new meaning to White Coat Syndrome!!


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## webster2

I am sorry about the blood tests. I am much better, used to faint 100% of the time. I think it is every 8 weeks. I drink a ton of water before I go. I don't know if it helps physically but mentally it does!

My doctor and I have already had a difference of opinion. He feels TSH is adequate and I said not. As we left it, we'll test the frees too. He feels it is unnecessary but...I live in an area where there is a teaching hospital, and go to a practice mostly staffed by residents. My last was one was fantastic. He has left for Ohio. This new one can be taught! I am hoping to have the GP do most of the blood work and see the endo periodically for the Graves.

I just found, and lost, of course...a great article on testing after surgery. It explained in very simple terms the role of T4 replacement as well as the chain of events when the T4 is not being converted correctly. I had hoped to bookmark it to educate myself. I hope to find it again.

Best wishes to you & hope you feel better!


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## Lovlkn

> For me to find 5 different doctors who are that knowledgeable about treatment will probably mean having to go out of state! I'm only half kidding - I think I'd feel infinitely more confident about all this if I knew I had a knowledgeable physician waiting on the other side of surgery.
> 
> What kind of doctor do you recommend for treatment following surgery? I honestly have gone from worrying about finding a good surgeon (I think I've done that) to wondering who will treat me from that point on AND what is involved in getting the best possible follow-up treatment?
> 
> I realize initially, maybe for a matter of months, numerous blood tests will be required. But, once a patient finds the optimal dosage of the medication that works for them, how often do you have to be re-tested.
> 
> I've never shared this with you guys but I am THE WORLD'S WORST when it comes to blood tests. It's all I can do to walk from my car to the lab when I'm going for blood tests. I have to lie down. For my nuclear stress test I had to have a "baby needle". I give new meaning to White Coat Syndrome!!


Any GP will be able to write a prescription for levothyroxine replacement meds, there is absolutely no reason to see a endo after surgery.

I had 2 GP's work with me for about 18-24 months each before they insisted on reducing my replacement due to TSH. At that time I tried a DO and have been with him for 2 years he's the best, has addressed my low D levels and prescribes Cytomel and doses completely by FT-4 and FT-3.

Post op I am tested every 6 months unless I insist sooner. Right after surgery I was tested every 6 weeks for several months until I received the proper replacement. I have been stable for about 18 months on my current medications and could go annually but my doctor insists I come back every 6 months.

While on anti thyroid medications I was tested every 3-4 weeks for 4.5 years.


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## Linty

Hi

I also would like to know there is a downside to the op? I have the decision of meds/Rai/ thyroidectomy. For some reasons the meds are no options (due to non safe for pregnancy, Rai - well i am not sure and then the op.

What is all the tests they require before the op and then after the op. I have a vitd and iron deficiency. Do they want the thyrod to be normal and not hyper (graves) before the op?

Sorry for all the questions, i posted alot in Graves also (blush)


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## I DClaire

I don't know any of this, Linty. I go back to the hospital Thursday for all my pre-surgery stuff. I've got a lot of questions.

I originally thought I wanted RAI but my endocrinologist suggested (as I understand it) that with multiple nodules, that was not an option for me. I've also opted not to have fine needle biopsy.

Maybe I'll learn more later this week. You mention pregnancy - you're probably a whole lot younger than I am.


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