Graves' Disease Support Group

I just sent you a message! ;)

I just wanted to add...I used to come around this site when I was first diagnosed a year and a half ago. I think most of it was different people than are on now. So I don't know many of you anymore. From what I've been reading the past few days...it seems this is all geared pro RAI, anti TT. I will not tell anyone which decision to make...though I will say my choice was based on my own educated research. The complications with my surgeon were less than 1% damage to the vocal cords or parathyroids. Yes...1%. You have to check with each surgeon their statistics...how many they perform...and so on....but surgery should not be made to be thought of as extremely risky. I would not put myself in that kind of danger. Anyway, it was my own choice...and it IS another option for Graves Disease. I'm just saying this because the vibe I got from reading around here is that it is almost looked down upon.

That is amazing..less than 1% risk. And from what Ive learned in this short period of time is that it has 100% success rate. In the 9 months that I have been on this site I dont recall it being discussed as a viable option. Has anyone else had this done and what was your outcome? Do you run the same risks with TED with TT as you do with RAI? Thanks Mandi..this is very good info..Im actually excited that there is another option...Kathy

TED is not the same with TT as RAI. My endocrinologist strongly advised against RAI if you have any eye involvement whatsoever. When you have RAI the thyroid releases massive amounts of antibodies...these are the ones that attack your eyes. When you remove your thyroid, none of these antibodies are released and actually you stop making those antibodies since you no longer have a thyroid to attack. You can google TED and TT...most patients that have TT's not only stops the progression of TED, but shows marked improvement in their existing cases. This is another reason why I opted for surgery...I was having eye pain and slight lid retraction in one eye....that obviously means I had some form of TED, which automatically ruled out RAI for me.

Thanks, Mandi!
I really appreciate you talking about your procedure. My Aunt had a TT when she was pregnant with my cousin, due to her goiter which was constricting her airway and making her miserable (it was enormous!) She could barely swallow anything and would actually pass out and fall down.

She has been doing just fine, but her scar is much larger than yours. It looks like they have made some advancements since she had it done. (My cousin is graduating college and getting married, so it was a long time ago.)

Thank you for posting about it, and thank you Kathy for starting this discussion! The more we know, the better off we all become.

Thanks, ladies!

Love,

Heather

Now they do something called "minimally invasive thyroidectomies" where the incision is really small. You can't tell from the tape on mine, but my thyroid itself was large...it wasn't constricting my airway or anything, I didn't have a goiter sticking out, but the actual thyroid was large...and my incision itself is 4 mm long. That is small. I will post a pic when the tape comes off. I can only imagine how small they are when someone has a smaller thyroid than mine! Oh and they do it in the natural crease of your neck..so eventually you shouldn't be able to see it at all.

I want to get the TT done on myself, i feel if something is bothering u get rid of it if u can. I don't want to live another day with this problem but since im pregnant i have know choice untilt he baby is born so soon as my child is born i will ask about it, i heard in texas they have a great doctor that has performed tt many times, people actually go to this doctor just to get this done and i might plan on having it done theere if i can. i DON'T KNOW THE NAME EXACTLY BUT 1% SOUNDS GREAT. I have to read more up on it but im sick of my thryoid ruining my life!

I would keep this in mind for a TT if the ATDs didn't work for me and I did too much yo-yoing around because of it.

Is it easy for people with TT to stay stabilized on replacement meds? I mean with being able to stay on a relative same amount of dose for a number of months?

Take care... :-)

I guess you could say I have been on 'both sides of the fence' with the desision of TT and RAI.
As it turned out, the desision was taken from me not by choice but by wanting to stay alive.
Originally I wanted Surgery (as some know here) as I too was scared of RAI and the 'after effects'.
Mandi....I am not against Surgery or RAI...I believe it is up to the individual and really no-one elses business.
My attitude is that regardless of the treatment, you should respect that persons wishes.
I had RAI on 27th June 2008 and am scheduled for TT on 15th September though mine is keyhole as the thyroid is now dying off fast.
My attitude to that is....I had ThyCa (thyroid cancer)...no nodules, no goiter just a damn thyroid that was completely cancerous.
There are risks with BOTH treatments and as I have said in other postings...there are even risks 'breathing' in this world with all the chemical pollution lol.
In regards to TED, I would also have reccommended TT as RAI can accellerate the antibodies but also there is argument that the antibodies die off as the thyroid dies with RAI.

There is so much controversy regarding treatments for the thyroid and if you read my journal you will see that I wrote in it that I REFUSE to apologise to people for my treatment done and this is the attitude you should take.
IT IS YOUR THYROID, YOUR ORGAN, YOUR BODY, YOUR CHOICE!
To hell with anyone who says different ...in my books.
Every case is different as is every treatment.
Basically what I am trying to say........even if the Butcher took your thyroid out (like mine offered too and believe me, I came close to saying YES lol) as long as you gain quality of life from it so be it.
It is good to see you post here and also good to see your pics as most people think that TT is a slashed throat when in actual fact it is not.
I think a lot of it all boils down to vanity in most cases but as far as I am concerned.....
If I couldve had Surgery, I wouldve but COULDNT so I live with the choice they made for me that saved my life ...RAI.
It is good that there are both sides of the fence displayed here now ....you with Surgery and a few others (including me) with RAI.

Kathy....with TT, the T4 replacement is usually started straight away even though the body does store iodine that slowly depletes. They usually start you on a small dose and do weekly or fortnightly labs until the levels are brought up to what the patient is comfortable with.

Mandi......please dont think anyone is attacking you for having TT as I most certainly am not.
You believe in your choice(TT) as I believe in the choice made for me (RAI ) and hopefully you will be a great asset to those thinking of surgery just to let them know what is involved.

Kick butt Girl and you will recover very quickly lol!
And good to see everything went well for you.

P.S
There are a lot of people who on the net dramatise their treatments telling ghastly stories.Those people we dont need as we need the basic truth...no lies, no bulls@@t.....just an update on how things are. If we feel like crap, tell people. Dont fabricate the truth...thats what I believe.

You will probably hit a 'low' when the iodine depletes from your system ...the same as I am expecting in the next few weeks as I go Hypo but we are battlers Mandi and with the support here , we will both get through it.
Its only a hiccup and not as big a hiccup as trying to deal with ATDS and levels.
Believe me, you will feel 100% better.

So please dont feel like I once felt....a Leper.
We are only human and we are all looking for the same thing ...
QUALITY OF LIFE.

Hugs to you and yell out if you need to know anything.......always here for you
Debs

smilerdeb...I am not on a T4 replacement. I am also not expecting to go hypo. I started my synthroid and am hoping it was the right time and right amount to keep me stable...as I was before I went into surgery. I know that is a possibility in happening with the surgery...but at the moment it hasn't happened. I have spoken with other TT patients...that didn't go hypo after...it doesn't have to happen. I had a good surgeon and I am trusting that she is treating me correctly. I will have blood work soon to see. As for telling it how it is...so far my experience has only been positive...if that changes...don't worry, I feel no hesitation in stating so.