# Officially Diagnosed.... Graves...



## CareBear3030 (Jun 9, 2010)

I've been diagnosed Graves Disease. I've been given the normal 3 choices, stay on meds hoping after a year to be taken off and return to normal, RAI, surgery. My endo tells me due to my high TSI count, I'm not an idea candidate to be able to be taken off meds. He is very supportive and is willing to let me make my own choice. But he did feel playing the waiting game would not be fruitful and would just drag this on longer unnecessarily.

So, my choices are between RAI and surgery. Well surgery just always seems like it should be a last chance. To have an organ removed that the good Lord gave me just doesn't seem right at all. Also, the risk of anesthesia, damage to other organs around it, and you'd think today's medicine could remove it without a huge scar right across the neck. Geez aren't we going through enough? I live in South Carolina!! It's not like I can run around with a turtleneck on all year!!

Then there is filling your body with so much freaking radiation it kills part of your body the good Lord gave you. The sickness, the risk of other parts of my body absorbing it. Just the thought of willingly putting such a substance in my body!! The biggest thing that worries me about RAI, is the fact that I have an 18 month old baby at home. What I read on the internet doctors saying minimum 11 days for infants. He's not quite an infant, but close enough. My endo says no hospital time at all. Just make sure you eat off paper plates and use separate bed, toilet and flush alot. He didnt seem concerned. Well, I read the radiation comes out through perspiration in my skin. There is no way I'll be able to not hold my baby. I cant reason with a child to explain that he wont be able to sleep with me. Maybe for a couple days I could go to a hotel by myself, but not 2 weeks??? So are the reports on the internet over exaggerating or is my doctor not making enough of it? Then you have the risk of needing to do it again??

If I choose surgery my endo said no FNA, but will do one if I choose RAI due to my risk of cancer. He said I'm definitely Graves, but also have multiple nodules that need addressed. So I may end up with no choice at all anyway. He said due to the nature of the multiple masses, it could indicate cancer, but dont go home worrying because its indicates a chance. This is all so very overwhelming!!

What is your opinion of what I should do, and why. Surgery and the pain/recovery associated scares the crap out of me, but trying to keep myself away from my 18 mo old son for 2 weeks seems absolutely impossible!! Here are my lab results:

•TSH <0.006 (untraceable), ref range 0.45-4.5
•T3 231, ref range 71-180
•T4 Free 2.82, ref range 0.82-1.77
•TSI 545%, ref range 0-139
•Uptake Scan was at 28% at 4 hours (normal 5-15%), 52% at 24 hours (normal 15-30%). There were no focal areas of increases or decreased radiotracer activity to suggest a hot or cold spot. 
•Ultrasound indicated one solid nodule in right lobe 1.3x1.5cm, and one exophytic solid nodule 1cm with cystic components in left lobe. Said thyroid enlarged and exceeding 2 cm and heterogeneous echo pattern. I'm not sure what it all means, but figured it to be pertinent information.


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## Debbie from Milwaukee (Apr 18, 2010)

CareBear:

Welcome to the forum! So sorry that you have to deal with not only the symptoms of Grave's but now disconcerting treatment options. You are understandably concerned, and I think you are asking very good questions.

My 20 year old daughter was diagnosed and treated with RAI for her Grave's 3 years ago, but now we find that she has significant thyroid tissue! She spent a good 5 months fighting though the physical and emotional symptoms before she was diagnosed, and because RAI was not initially offered, she didn't get her RAI treatment for almost another 5 months. Since I have not experienced the RAI treatment, I cannot tell you firsthand what it is like. However, in light of my daughter's experience, I wish we had known more about the option of a TT (total thyroidectomy) and then RAI following it (to destroy any remaining thyroid tissue).

I think you will hear from folks who have gone through all 3 of the treatment options. I would recommend that you research all 3 of the treatments (sorry I don't have links available for you, but I do remember reading the research when my daughter was treated). After you read the research, discuss any of your questions with your physician as the research relates to your own case and circumstances.

I wish you well as you go through this decision RE: best treatment for you. Keep in mind that you have a serious autoimmune condition that will not go away on its own but will continue to make your thyroid gland overproduce thyroid hormone without intervention. One more thought: as your doctor orders blood tests prior to your treatment, you may want to ask your doc to test for the antibodies that would indicate Hashimoto's thyroiditis (I think the tests are TPOab and TGab). It turns out that my daughter may be positive for Hashimoto's, which was either not active or not tested for 3 years ago. Hahsimoto's is another autoimmune condition that affects the same enzyme that Grave's antibodies messes with, except that it triggers a reaction that slowly destroys the thyroid.


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## Andros (Aug 26, 2009)

CareBear3030 said:


> I've been diagnosed Graves Disease. I've been given the normal 3 choices, stay on meds hoping after a year to be taken off and return to normal, RAI, surgery. My endo tells me due to my high TSI count, I'm not an idea candidate to be able to be taken off meds. He is very supportive and is willing to let me make my own choice. But he did feel playing the waiting game would not be fruitful and would just drag this on longer unnecessarily.
> 
> So, my choices are between RAI and surgery. Well surgery just always seems like it should be a last chance. To have an organ removed that the good Lord gave me just doesn't seem right at all. Also, the risk of anesthesia, damage to other organs around it, and you'd think today's medicine could remove it without a huge scar right across the neck. Geez aren't we going through enough? I live in South Carolina!! It's not like I can run around with a turtleneck on all year!!
> 
> ...


This is an example of the usefullness of T3 (total) when it is so blatantly high, we know something is wrong. Wonder what the FREE T3 looks like. Whooooooooooohoo! Over the top, I am sure.

Anyway, over the years (even though I had RAI), I do have a tendency to recommend surgery for this because it would seem that cancer and hyperthyroid are bed fellows. We are finding out so much now with technology and medical advances and this happens to be true.

And your endo definitly has a handle on the the pros and cons.

So...................now; you have to make the decision. The ball is in your court. Let us know what you decide.


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## CareBear3030 (Jun 9, 2010)

Thanks for the responses... I guess I just need to flip a coin!! I've have my mind seriously made up several times today... heck even over the past several weeks as I knew what was coming. I just have to keep praying.

A little background on my doc... he was very patient, did not make me feel rushed, definately helped me to feel that he will work with me and support whatever I want. He laid it all on the table for me to decide, pros and cons. He seems to lean toward RAI, but said if surgery is my choice he will support and aid my recovery. I even feel I'll be able to come to him post-op/rai to adjust meds if I dont feel right... I'm certain he will listen and not shew me aside as I read others have dealt with.

Something that has me even more perplexed... When I asked him what would he recommend... He said that both have the same end result-dead thyroid. RAI is the more preferred method due to its convenience and ease, although in Europe its just the opposite. I said really?? He said "They tend to be a bit more aggressive in the treatment, and they are a bit more afraid of using radioactive medicine unless necessary, but here in the states we use it alot, so we are more versed in how to use it."

That makes me wonder if its our wonderful US insurance companies "preferred" way to treat because wouldnt convenience and ease translate into less cost??


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## CareBear3030 (Jun 9, 2010)

And he did take more blood yesterday. He's testing my white blood cell count, liver, and also more thyroid tests. When I get those results I'll be sure to post them. FYI- i have not taken my meth since I came off of it for my uptake scan. It made me break out in BAD hives on my hands and elbows, and hair fall out. I think he said he is going to put me on ptu once he gets my new labs.


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## Andros (Aug 26, 2009)

CareBear3030 said:


> Thanks for the responses... I guess I just need to flip a coin!! I've have my mind seriously made up several times today... heck even over the past several weeks as I knew what was coming. I just have to keep praying.
> 
> A little background on my doc... he was very patient, did not make me feel rushed, definately helped me to feel that he will work with me and support whatever I want. He laid it all on the table for me to decide, pros and cons. He seems to lean toward RAI, but said if surgery is my choice he will support and aid my recovery. I even feel I'll be able to come to him post-op/rai to adjust meds if I dont feel right... I'm certain he will listen and not shew me aside as I read others have dealt with.
> 
> ...


I believe that the insurance companies play a role in that; I surely do. However, you are the patient and you are the payee of your insurance premiums so you should be able to chose the method you are comfortable with.

Your doc sounds awesome.


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## Lovlkn (Dec 20, 2009)

Carebear,

I used a fantastic surgeon from Charlotte NC who does minimally invasive - my scar is 1" and you cannot even see it.

I never covered my scar - if anything I had issues with things covering it for a long time - not pain just irritated it to be covered.


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## CareBear3030 (Jun 9, 2010)

Lovlkn said:


> Carebear,
> 
> I used a fantastic surgeon from Charlotte NC who does minimally invasive - my scar is 1" and you cannot even see it.
> 
> I never covered my scar - if anything I had issues with things covering it for a long time - not pain just irritated it to be covered.


Would you care to share your surgeon's info? I'd be willing to go to Charlotte for the procedure. Its only 3 hours from here in Charleston.

I'll be honest that is probably the biggest item for me in the CON list for surgery. I swear I've never been a vein person, never bothered looking at wrinkles and my skin. Maybe its my age, and I'm just realizing that I'm getting older. So, maybe not "older" but certainly well out of the range of being young. Right now at pushing 40 my neck does not have any wrinkles, and it bothers me to think about that big scar like I've been mugged by someone trying to kill me!! God I sound like a HORRIBLE person! Of all the things to worry about.....

And yes, I still need to loose 50lbs, get my arms and thighs lipo-sucked, and yes while we're at it lets fix up the girls too! LoL!!


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## CareBear3030 (Jun 9, 2010)

Andros said:


> Your doc sounds awesome.


I was very worried about some of the stories I've heard about so many of the endo not listening. At one point in the days before I met him I even had to tell myself to walk in with an open mind, because I've been thinking so negatively lately, that I knew I'd get one of those quick in and out dont care about you doc. I got WAY better than I even expected. If you know me, I can talk and talk and carry on to explain a story, and he let me.

I've not yet had to deal with him on the level of getting my meds evened out, so I cant speak fully on that. But, in asking about his idea about the ease of getting the right med combination post surgery or RAI, he did respond as I hoped. He said "With surgery, the thyroid is gone, so finding the right does yes will be quicker, but the RAI will continue to work up to 6 months, therefore continue to kill off thyroid. So with RAI, we need to check levels often and change meds often even up to a year. But once we get it right, its smooth sailing." That tells me he is very aware of slight fluctuations in levels.


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