Re: Re: has anyone,,, POST-RAI?/ Mirela- my experience

[Guest guest]

I read all the replies in a very

> detached manner and noticed that the people who are on either PTU or

>

> Methimazole, are up and down.The health problems come and go.

When I remember, I sign off adding that I'm in remission for 2 years

after 14 months on Tapazole. I'll share with you a brief history: I

developed GD post-partum. With no prior history of goiter and no family

history it's a good assumption it was caused by hormonal stress. BTW, it

was definitely GD, not post-partum thyroiditis.

> I asked myself other questions. Luckily, my heart was still healty.

> But I had side effects from the Propanolol(beta-blocker0) which I

> had

> to take at all time because of my fast heart beats and tachycardia.

> After the RAI my heart functions properly. Thank God for that.

> Or the fact that this is a recent support group anti-RAI. For how

> long these peple struggled with GD ? What is the REAL success rate

> without the RAI?

I never went on beta-blockers, just straight onto Tap. Beta-blockers are

literally life-saving and people usually should go on them, especially

if they're not going on ATDs immediately. They do have annoying side

effects, and possibly dangerous ones, which is why a doctor should know

enough about his/her patient to determine if calcium channel blockers

wouldn't be more appropriate. The major thing to remember is that once a

patient starts anti-thyroid drugs, the patient can start to be weaned off

them! It may take some people more time than others but ultimately the

patient should be stopping or greatly reducing the intake of

beta-blockers.

I did something else that was risky and I don't advocate it: having

learned early on that sore throat can sometimes be caused by GD, and

having a pretty much constant sore throat, I decided not to mention it to

my doctor at all for the first month on ATDs. I really didn't have good

feelings about him and my later instincts were born out - I couldn't

trust him. I figured that since the sore throat was stable with no more

symptoms developing, it was most likely GD related and that the CBC at

the end of the first month would tell me otherwise. I was right - I could

and did tolerate ATDs, thank G-d.

So here I am 2 years post ATDs. My thyroid levels are stable, and

emotionally I am and have been stable. Incidentally, just as GD gives

many of the us the impetus to make important physical health changes, I

also have worked these several years on my spiritual and emotional

health. (I'm not referring to religion here though that's certainly

always productive AFAI'm concerned.) The primary health issue I have now

is insomnia which, with some detective work I'm beginning to think might

be linked to ovarian decline rather than thyroid. It's possible that the

two are linked but I'm far from convinced that I would have had an easier

time in this dept. had I had RAI.

Last word: I'm a pretty lazy person. I think, what would I do if the

Graves recurred. It jus seems so much easier to me to go back on ATDs.

Let's weigh the two optimum outlooks:

ATDs- start on ATDs at a recommended maximum dose. With regular bloodwork

gradually decrease the dose until I'm able to stop in 12-24 months, or

stay longer term on a very low maintenance dose. Never develop TED.

RAI - Synthroid works for me. Need regular bloodwork to determine

stability. (Since this is the optimum picture I won't bring up the

possibility that just when I find my stable point, perimenopause kicks in

with a bang.) Have to take the stuff for life, have to make sure I don't

take my supplements within 2 hours of synthroid, which for me will mean

forgetting to take supplements. Never develop TED.

I've been on this list long enough to know that the optimum for ATDs is

more likely than for RAI. There's a secondary optimum level for post RAI

- when synthroid doesn't work, to have an endo skilled in all options for

thyroid hormone supplement. The essential necessity of finding a topnotch

endo, and realizing you'll need him/her for life, cannot be stressed

enough for people contemplating putting themselves in a position where

they'll be hypo for life.

Way too long. Sorry. Take care, Fay

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[Guest guest]

Wanted to mention that the 2 potentially fatal side effects of ATDs mentioned

in Mirela's post occur in less than 1% of patients and have been exclusively

related to inappropriately high doses. With newer technologies for detecting

agranulocytosis and fulminant liver disease as well as new treatments such as

colony-stimulating factors, these rare side effects are no longer considered

potentially fatal or irreversible.

Also, the long-term cooperative study by Ron et al shows a significant

increase in cancer mortality from radioiodine used in the treatment of GD,

particularly thyroid cancer and small bowel cancer. And this study only reports

mortality rates. The actual incidence of cancers from RAI that are not the

ultimate

cause of death is unknown.