My adventure in thyroid withdrawal and RAI treatment.. the short story

(this entry was actually an email reply to someone I had forgotten to 'update' on the latest with me, but am including it here as it might fill in the blanks for some of you as well)
Oh I am doing okay so far. As ever, there was still a lot of confusion or should I say a lack of agreement as far as how long I should stay away from Leila. My doc in Chico (where I live) said basically to stay away from her for 7-11 days totally and then to spend time with her during the day afterwards at varying degrees of proximity. The doctors here in southern California where I was treated with the RAI had the usual cavalier attitude.... just stay away from babies and pregnant women for 7 days. flush 3 times and launder seperately for the first 4 days.

They gave me 98.4 millicuries which I asked why it wasn't 100 mci? They said that as long as it is within 10% of the "dose" it still counts as the full dose.....I said "okay... that is weird", but what the hell do I know about radioactive iodine.

I didn't get a whole body scan (WBS) before treatment. they said they don't do that here as a rule... that they were giving me the dose or RAI no matter what an WBS would show. so much for hoping for that miracle from God saying I wouldn't need the RAI after all. hahahah pardon my sarcasm, it is keeping me relatively sane. I will get my WBS Mon Nov 29th. I have no idea what it entails, how long it takes, if it is an MRI etc... as usual they are keeping me in the dark until the day of the procedure. I have long since given up the idea of control in my life otherwise I would be looking for someone's butt to chew.

the whole hypothyroid roller coast was HELL...!! it was everything I had read about online from all the other people who had been through it - about the neurotic feelings, dropping things, standing in front of the refrigerator for 10 minutes looking for the hairbrush, losing the train of thought in the middle of a conversation. I said my brain became like an etch-a-sketch - all nice and pretty one minute and a blank screen the next. Interestingly enough the tendonitis in my thumbs which was very painful went away when I was on NO Levoxyl. So it confirms what I thought which that either I can't tolerate high doses of levoxyl or that just having high doses of synthetic thyroid in my system does not agree with my joints and tendons since I end up in chronic achy feelings in all kinds of places.

Then there is the low-iodine diet a.k.a welcome to the "land of bland". My doc at home was sort of ... well, he didn't seem to think it mattered whether or not I did the low iodine diet before treatment!! I didn't believe that. I chatted with too many other thyca patients on yahoo groups to know that it IS important to help assure a better treatment, especially the first time. I like my doctor and all, but he also didn't take me off of the thyroid meds early enough. So when I got here they tested my TSH and it was only 1.8. Not high enough to give me the RAI. I had to WAIT ANOTHER WEEK!! Another week on that diet too. I was ready to go ballistic on someone, I tell ya. I exercised a lot of self control and did alot of praying for strength and acceptance. Unfortunately I live in a small community and my alternatives for treatments and doctors are very limited unless I travel 3 hours to San Francisco every time.

The doc here that gave me the RAI told me I could start taking the Levoxyl the morning following treatment and I sure did. 175mcg Levoxyl which made me extremely dizzy and achy for the first 4 days after I started taking it. I guess it was a shock to my system. Howoever it has been 10 days on it and I already feel better, not as heady and weird, not as forgetful and certainly NOT AS TIRED! hallelujah. When I get home I will consult with the internist, not the radiation oncologist, about my correct dosage because I don't think I should be on such a high dose for a long period of time or it could bring on heart problems and osteoporosis. Just what I don't need.