# Advice needed from all you Wise surgery experts



## peaches (Sep 29, 2009)

How did your doctors determine that you needed surgery. I understand those of you who had cancer that, that was a given but I have heard from some that they had surgery and it was not because of cancer.

I am just wondering how bad it has to get before a doctor starts the surgery talk. And once you've had your thyroid out what then, medication and health wise?

I know that some of you have not had surgery but have had procedures done to kill the thytoid. I'm interested in hearing about that as well.

I am just trying to prepare myself for the inevitability of one procedure or the other. My uncle had his surgery(cancer) about 2 years ago and his daughter my cousin had hers "killed" as she puts it. I think she had it irradiated.


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## CA-Lynn (Apr 29, 2010)

Peaches,

I haven't had thyroid irradiation or surgery, but I am very interested, too, in learning about it.


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## Andros (Aug 26, 2009)

peaches said:


> How did your doctors determine that you needed surgery. I understand those of you who had cancer that, that was a given but I have heard from some that they had surgery and it was not because of cancer.
> 
> I am just wondering how bad it has to get before a doctor starts the surgery talk. And once you've had your thyroid out what then, medication and health wise?
> 
> ...


I was not responding at all well to the anti-thyroid med and liver enzymes were becoming elevated...............

There "are" many other reasons; I do hope you get plenty of input.


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## GD Women (Mar 5, 2007)

RAI was no BIG deal.

I had RAI, once, and have no regrets. I still have my thyroid and its still has some function, a little under 3/4% function. So what the thyroid doesn't do the meds compensates for. I function as a normal person, perhaps a little hyper but that's the way I like it for it keeps me going. I didn't nor do I have most the symptoms as most say they do.

Whizzed right through RAI with only a little sore throat. Blood pressure shot up and put on meds. for control. Month later blood pressure back to normal and was taken off meds. Went on levoxyl approx. three months after RAI. Have no problems with the meds either.

The word is ablative - killing is a misconception.

Treatment choice is a matter of life style and personal preference. All three options are not a 100% guarantee.


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## wickets_mommy (May 5, 2010)

My very first visit with my endo and he mentioned surgery for a diagnosis of mild/moderate thyromegaly with slight substernal extension. The only symptoms of mine he even paid attention to were the mild intermittent sore throat and intermittent hoarseness. He based this off of an mri. He said that if symptoms don't improve or worsen over the next 6 months he wants to schedule me for surgery. I wasn't given any in depth testing for hypo/hyper nor any ultrasound or scan. All I was told is that in cases like mine meds are ineffective and surgery will eventually be my only choice.


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## Lovlkn (Dec 20, 2009)

I decided after 4.5 years on anti thyroid medication that I was not going to reach remission so I had a total thyroidectomy.

The reason I chose surgery over RAI is because I knew of too many people who had issues and worsening TED symptoms and I did not want to chance that happening to me.


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## peaches (Sep 29, 2009)

I appreciate the input and hope there is much more. I have very severe symptoms which are controlled to some point with medication. I was to the point of literally going insane. I had one episode where I was driving and an attack hit me and the anxiety was like a mad rush on me. I wanted to pull the car over and run screaming into the field I was driving by. I wanted to get away from my body it was an awful attack and I was living on about 2 hours of sleep a night. I had been living like that for about 3 years. After all those nights with interupted or no sleep I really felt like I was going insane on top of all the terrible physical symptoms. The medicine has reigned the symptoms in quite a bit but not fully. I was just wondering if there are certain triggers that have to be met before you can opt for RAI or surgery or if it is more of a personal preference that you and your doctors can reach together. I am getting about 4 to 5 hours of sleep a night now which feels like a God send but it is still not enough to help me get back to a healthy state. People don't realize what damage lack of sleep can do to a body and on top of the other symptoms of thyroid disease it can destroy you pretty quick. Which I know all of you can understand better than anyone else.
I have had such extreme symptoms for so long I just want to get everything over with. It amazes me when I see some peoples TSH levels at 16 or higher. I felt like I was going to die when mine reached above a 4. I only have seen it tested at a high of 6.51 but know that it has to have been higher we just didn't catch it on a test at the time.


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## GD Women (Mar 5, 2007)

Surgery will not save a person from TED. Ted has a different antibody then thyroid disease or Graves', although close as in cousins, these antibody attacks the eye not the thyroid.

Thyroid dysfunction and the eye disease probably have a similar etiology but the thyroid dysfunction does not cause the eye disease per se. In most cases is unrelated to the course of the thyroid disease and good control of the thyroid disease does not necessarily prevent TED.

TED eye signs can also be seen/associated with other autoimmune diseases as diabetes, arthritis and in rare cases myasthenia gravis. Serious ocular problems occur in only 5 per cent or less of patients.

A recent retrospective study supports the use of thyroid ablation in managing patients with active severe TED. ....55 patients with Graves disease and mild to moderate Graves ophthalmopathy, who underwent near-total thyroidectomy
and of whom 16 had standard ablative doses of radioactive iodide. They found that the prevalence of inactive ophthalmopathy, both short and long term after treatment, was significantly higher in the group of patients who underwent thyroidectomy and 131I ablation, and suggest that this is a more effective means of inducing and maintaining inactive ophthalmopathy.

Some physicians believe that early ablation of the thyroid inhibits progress and promotes resolution of TED. Later in the course of ophthalmopathy this treatment may be less or ineffective because orbital antigens may then drive the immunologic reaction.

A cyber friend said her TED got better after RAI.

It is also said the persons with TSI is more prone to TED regardless of treatment.


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## prettynikki5 (Dec 9, 2009)

peaches said:


> How did your doctors determine that you needed surgery. I understand those of you who had cancer that, that was a given but I have heard from some that they had surgery and it was not because of cancer.
> 
> I am just wondering how bad it has to get before a doctor starts the surgery talk. And once you've had your thyroid out what then, medication and health wise?
> 
> ...


Hi Peaches,
I was diagnosed with Hashi's last November. I have had normal thyroid levels with a long list of symptoms.I also have 2 small nodules, they did a FNA on them but couldn't get enough fluid for a conclusive test result. I have been on Synthroid for a few months now, I have responded well to the med, but my thyroid is quite enlarged and presses on my trachea, doc offered surgery or continuing to increase the synthroid to see if it will get it to shrink. I opted for surgery, scheduled for June2. I, like you, am wondering what lies in store for me once my thyroid is out. I have been all over the boards trying to read up on the others' stories, I suppose we all respond differently and it will be a wait and see type of thing. Best of luck!
:hugs:
Nikki


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## Andros (Aug 26, 2009)

GD Women said:


> Surgery will not save a person from TED. Ted has a different antibody then thyroid disease or Graves', although close as in cousins, these antibody attacks the eye not the thyroid.
> 
> Thyroid dysfunction and the eye disease probably have a similar etiology but the thyroid dysfunction does not cause the eye disease per se. In most cases is unrelated to the course of the thyroid disease and good control of the thyroid disease does not necessarily prevent TED.
> 
> ...


And I am here to vouch for what you have said. Anything can trigger GED/TED; any trauma, giving birth, anti-thyroid meds, surgery just a whole host of things (or not.) Treating the thyroid does not treat the eyes and vice versa.

I am so glad to see someone finally say this. hugs1 You are the bomb!


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## GD Women (Mar 5, 2007)

I forgot to put in that hypos are just venerable as well. Not saying that everyone will get TED, just more of a chance of getting it.


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