I'm a married mother of 4. Have a full time job, life is crazy and looking to the next several months I'm scared to death! 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 medication waiting game would not be fruitful and would just drag this on longer unnecessarily. And I need some relief! I need my life back now!! I feel I'll be in a mental hospital soon!! I am always on edge and the head fog is horrible! I cant even remember my phone number sometimes! The same phone number I've had for proabably 8 years. And if I'm not divorced before this is all over, I'll be very surprised! Someone help!
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!! I'd like to hear all of your stories, good and bad, about RAI and surgery. I need to make this descision very soon and keep going back an forth about every 5 minutes. Its driving me crazy!!
Here are my initial 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. 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.
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 baby to explain that he wont be able to sleep with me, and I cant even hold him. 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!!
When I asked him what he thinks I should do he said in the US we are more versed in using nuclear medicine so it is more recommended here, but in Europe its the opposite. They are more aggressive in treatment, and a bit uneasy using nuclear medicine since they use it less so they typically just remove it. So, is this an indication that maybe our US insurance companies have a play in this?
Please give me your experience with either. I really appreciate any input any of you can offer. I feel all alone and scared. We just moved to South Carolina from Ohio, and I have no one here to help me through this... except my husband and some days he doesnt like me so much the way I've been acting...
So the question of the day is "To Nuke or Not to Nuke"