Re: A suggestion regarding the current discussion on RAI... - Laurie

[Guest guest]

I know that Hypo is a

> probability for me but with as closely as I'm being watched and

> tested, monthly blood test or sooner if I feel bad, I will be caught

> before it turns into Hypo hell.

BINGO! You're getting the monitoring you need that I know I wouldn't have

got from ex-endos #1 -3. (Again, I'm not a difficult patients but these

guys were quacks from the endocrinology duck pond.)

Maybe I should review the top 20 list again. I'm a bit fuzzy on it but am

severely apprehensive about RAI because of

- the risk of post RAI-thyroid storm that I would have been at had I had

RAI as soon as the doctors wanted me to since I was so hyper

- the increased risk of TED

- the fact that had I let any of my first 3 drs. do it I don't believe I

would have got the followup I need

- something that doesn't apply so much to me but gives me pause - the

anecdotal experiences concerning infertility.

About Liang's second study from Spain - the followup: Knowing what I do

now, I would rather face relapse and go on ATDs again, and as many times

as necessary. Right now, 2 years into remission my numbers are off a bit

(low TSH but low FT4 too). I was supposed to see my endo this week but

had to reschedule and for now it's set for early Dec. I think I'll know

one way or the other by then because my hands are itchy and some nails

are peeling - hyper signs, despite the fact that for the first time in

ages I'm sleeping decently. Yet this doesn't bother me and here's why:

- my descent into hyperT - and Liang's study doesn't say this but it may

pertain there as well - will be much gentler and shorter because we're

catching it earlier. (IF I am going hyper again.)

- I know so much more about ATD management and have this group to bounce

things off of.

- my head's a bit more together. I don't get freaked out by going to my

basement at night, or even walking to the car in the dark; if I get angry

I can step outside myself for a minute to figure out what's going

on...maybe it's because I'm not that hyper yet, but I think it's because

I've spent the nearly 4 years from my initial diagnosis taking better

care of myself physically, emotionally, and spiritually.

At this point, Laurie, you don't need support in the way of monitoring,

gleaning from the experiences of others on various thyroid hormone

replacement, etc. If you do, there are people who have been through that

here. There's also a group I was on a few years ago but was so

overwhelmingly hypo that I left. I think you can find it at something

like thyroidmaelstrom@.... And the way you're going, if you do

become hypo it will also be a gentle descent, hopefully nowhere near hypo

hell, or even one of the lesser levels of hypo purgatory.

So do take care, and please don't just share your positive experiences

with RAI with people but explain why you believe it's going well. You

will likely be appalled with how ill-informed most people are when they

make this decision, and how incompetent the care they may be getting is.

Take care, Fay

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