Originally Posted by Gemsrite
Oh he did tell me that there is a possibility that the thyroid can be completely killed using RAI treatments. So my question is doesn't that mean meds forever? So why can't you try meds first?
I second KB. I will go one up though. My family is thyroid autoimmune central station. My mom is one of eight surviving children, all five of the female children either have Hashimoto's, Graves, or Hashimoto's and Graves. Yes it is possible to have both. My own blood proved it to many a MD that disbelieved me. Hard to ignore lab results, but some MDs will.
I am the oldest daughter of the Oldest sister of five. I developed Hashi's and Graves during pregnancy with my son... ugh over 9 years ago. It took four years of fighting tooth and nail to get a group of MDs to work with me and treat me properly. One other female cousin has come up positive for Graves during her third pregnancy. So we have a crop of 7 family members to pool notes from and host family vent sessions. Those are scary and our men folk hide.
So let us go step by step here. I may have to post twice to give you the complete Graves treatment experiences of my family and the treatment plan we all finally have settled on for our future generations.
My mom was the first to test positive with Graves a precancerous nodule 5 cm x 4 cm on one side. Given the nodule and Graves and a wonderful family allergy to the Iodine dyes and RAI treatment. (If you are allergic to seafood get tested for a reaction before they inject that lovely stuff in your veins). They killed my mom and brought her back during her diagnostic RAI Uptake scan. She was contaminated and had to stay in the spare bedroom stripped bare except for a bed covered in plastic sheeting. We had to throw away the bedding and plastic and clothes she wore during the week after that lovely treatment. A RAI treatment regime was out for her. So the wonderful Endo decided to do a partial lobectomy. They surgically removed one half of her thyroid and sent her on her way. Never had her have a follow up or check her blood work ever again. Half an over active thyroid will support you like a full normal thyroid you know. WRONG! Untreated Graves can burn out a thyroid from over work. It often happens to many graves suffers that is why anti-thyroid meds should be tried first. Another neat fact about thyroids is they regenerate. My mom's missing thyroid half grew back bigger than ever in a ten year span of time and this time cancerous. Also antibody testing proved she had Graves and Hashimoto's. Versus just Graves as diagnosed by that bad Uptake scan. So back under the knife for her, two years past. I fought and found her an Endo that listens to me and does not shirk her treatment anymore. SHe is good on straight T4 supplementation.
Aunt Be, second oldest sister. Graves TD. She had an MD that only believed in an RAI treatment regime. She trusted and listened to him. She had her FIRST RAI followed by two weeks of isolation and lost work. Only to have her Graves rebound stronger than ever with a true thyroid storm. It seemed to just tick off her thyroid. So what was the solution? Less than a year after the first RAI, she had a second. Yep! This was before the MG family support and gain up on MDs network arose. Guess what? The RAI failed again. More issues hyperT/hypoT. Finally a suspicious biopsy convince the idiot Endo to request a thyroidectomy. It took three different Endo but she is finally optimal and steady on a mix of Synthroid and Armour.
Aunt Ba, Middle sister. Hashi-Graves, Graves dominant. Had one RAI that drove her hypoT, but didn't kill off her thyroid completely. This resulted in a five year attempt to medicate a hypoT Graves roller coaster. End result Thyroidectomy and T4-T3 supplementation regime.
Aunt R, sister #4. Hashimoto's suspected for a LONG time argued and argued but MDs refused to run the antibody tests. She kept having odd little thyroid storms. Not as common with pure Hashimoto's. MG family support and proof that Hashi's and Graves was dominant in our family. Final testing showed HEY she had Graves two and was living through a thyroid AI pitch battle. Those suck. MD said they would treat her when Hashi's had killed her thyroid off completely. Uh-Uh! It took a lot of ring around the Endo before finding an ENT that would remove it given a suspicious biopsy and enlarged size. She is on T4 only right now, but we are working on getting her some T3 as well.
Now for the non-Graves horror story. Aunt N. Youngest of five. She developed pure Graves.. no Hashi's tossed in for skitter and giggles. SHe got lucky and found a young female newly credited MD that had a hyperT mom. She got on anti-thyroid meds. She occasionally has to take 25 - 50 mcgs of T4 because her dosage is driving her more hypoT these days but she has been stable on meds after a 9 month adjustment period.
#6 Me. I had DOMINANT Hashimoto's with a chaser of Graves. It took five years, but my Hashimoto's obliterated my thyroid and now my Graves antibodies just sit and spin with nothing to do.. poor babies. GO HASHIMOTO's! I am optimal on 175 mcgs of T4. During my second pregnancy I had to add a grain of Armour on top of that to meet her demands and an inefficient conversion. Post breastfeeding it took 9 mo to stabilize again.
#7 Cousin S. She is just beginning ATD treatment with her mom's MD. She is Aunt N's daughter. They are doing well right now.
So what was our take on things. RAI's? FORGET ABOUT IT! Give ATD's a years worth of try to stabilize things. If the ATDs do not seem to help then yank the sucker out. It has been easier for us to medicate and stabilize with out a thyroid or with a dead and atrophied lump of tissue than with a misbehaving lump full of surprises. That is just our personal opinion. But CAREFULLY research the side effects of RAI. If more people were educated about it less might be willing to do it. Me? I inherited that iodine dye and treatment allergy. It really is aweful to be injected and react to it. Yeah! I had a MD tell me that you can not be allergic to Iodine. True. But the dye and compound they inject you with is not ~PURE iodine. Thus allergic reactions do occur.
Well that is my families story with Graves with a little Hashi's tossed in for flavor. Hope it helps.