Re: Newbie has RAI/eye question

[Guest guest]

Hi,

I suspect you'll be hearing from lots of people.

With RAI, eyes often worsen especially if there's a pre-existing eye

condition. And RAI is not a good choice for women of childbearing age. In Europe

and

Japan RAI is rarely used and never on young women.

PTU is a safe alternative. Keep learning all that you can and don't rush into

anything you can't later change. Take care, Elaine

[Guest guest]

I guess your doctor didn't tell you that it's suggested you wait 1 year

before trying to get pregnant after RAI?

I guess he also didn't tell you that there is a significant chance that RAI

is going to make your already bad eyes worse?

Did he tell you that if you take PTU you can get pregnant as soon as your

levels are normal (usually a couple of months) if you are really in a rush?

And if you are not in so much of a rush that either of the anti-thryoid

drugs have a the best chance of getting you into remission in 1-2 years?

Then you will have your thryoid working and will be in much better shape to

go through the major changes of pregnancy and motherhood.

Pam B. - who did none of the above but is doing great on no meds now after

one year of alternative treatments - off herbs now for almost 4 months.

http://www.webmosaics.com/thryoid/

-- Newbie has RAI/eye question

Was planning to get pregnant this year. With this in mind my endo has

recommended RAI.

I am worried about my eyes. Right now my eyes pop to varying degrees -

it depends on the day. And I get double vision when I am tired.

I know that no one can tell me what will happen to my eyes. I am

seeing an eye doctor tomorrow to see how bad it is.

Would like to hear RAI affected others (re: eyes and in general).

Thank you!

[Guest guest]

Actually, my endo did NOT tell me that I could take PTU and get

pregnant soon thereafter. He only said that RAI would be the quickest

way and that I could try to get pregnant 6 months after it. He also

said, " If you take medication it could take years before you go into

remission and I can guarantee that you will be on medication during

part of your pregnancy. "

It was all very ominous.

As for seeing another endo, it is such a long wait to see another

one. I do have an appointment with another on July 2nd and I just

don't know if my legs will hold out that long.

I know that no one has the answer for me. But I am glad to have found

a place where there is some kind of support.

Thank you,

Amantha

>

> I guess your doctor didn't tell you that it's suggested you wait 1

year

> before trying to get pregnant after RAI?

>

> I guess he also didn't tell you that there is a significant chance

that RAI

> is going to make your already bad eyes worse?

>

> Did he tell you that if you take PTU you can get pregnant as soon

as your

> levels are normal (usually a couple of months) if you are really in

a rush?

> And if you are not in so much of a rush that either of the anti-

thryoid

> drugs have a the best chance of getting you into remission in 1-2

years?

> Then you will have your thryoid working and will be in much better

shape to

> go through the major changes of pregnancy and motherhood.

>

> Pam B. - who did none of the above but is doing great on no meds

now after

> one year of alternative treatments - off herbs now for almost 4

months.

> http://www.webmosaics.com/thryoid/

>

> -- Newbie has RAI/eye question

>

> Was planning to get pregnant this year. With this in mind my endo

has

> recommended RAI.

>

> I am worried about my eyes. Right now my eyes pop to varying

degrees -

> it depends on the day. And I get double vision when I am tired.

>

> I know that no one can tell me what will happen to my eyes. I am

> seeing an eye doctor tomorrow to see how bad it is.

>

> Would like to hear RAI affected others (re: eyes and in general).

> Thank you!

[Guest guest]

Hi Amantha,

I am in a similar position--just diagnosed with Graves' and planning a

pregnancy, doctors saying I should get RAI, etc.--and I have decided to go

the medication route (PTU). A lot of pregnant women are managed on PTU, and

you may even be able to stop the meds later into your pregnancy (when the

immune system is suppressed). Just make sure you are monitored carefully by

a good OB (such as one who specializes in maternal-fetal medicine). The

Graves' may return after pregnancy, so you should continue to be monitored.

Hopefully the PTU will put me into remission, and I think I have a good

chance as I have a mild case with no or very small goiter. The information

I have seen suggests that RAI is the most problematic for those with eye

symptoms.

P.S. If you try PTU, it is probably best that you wait until you are

euthyroid until you try to become pregnant, which may take a few months.

You also should wait to see how you tolerate the PTU, as a small percentage

of people have side effects.

At 04:23 PM 6/25/2003 +0000, you wrote:

>Actually, my endo did NOT tell me that I could take PTU and get

>pregnant soon thereafter. He only said that RAI would be the quickest

>way and that I could try to get pregnant 6 months after it. He also

>said, " If you take medication it could take years before you go into

>remission and I can guarantee that you will be on medication during

>part of your pregnancy. "

>

>It was all very ominous.

>

>As for seeing another endo, it is such a long wait to see another

>one. I do have an appointment with another on July 2nd and I just

>don't know if my legs will hold out that long.

>

>I know that no one has the answer for me. But I am glad to have found

>a place where there is some kind of support.

>Thank you,

>

>Amantha

>

>

> >

> > I guess your doctor didn't tell you that it's suggested you wait 1

>year

> > before trying to get pregnant after RAI?

> >

> > I guess he also didn't tell you that there is a significant chance

>that RAI

> > is going to make your already bad eyes worse?

> >

> > Did he tell you that if you take PTU you can get pregnant as soon

>as your

> > levels are normal (usually a couple of months) if you are really in

>a rush?

> > And if you are not in so much of a rush that either of the anti-

>thryoid

> > drugs have a the best chance of getting you into remission in 1-2

>years?

> > Then you will have your thryoid working and will be in much better

>shape to

> > go through the major changes of pregnancy and motherhood.

> >

> > Pam B. - who did none of the above but is doing great on no meds

>now after

> > one year of alternative treatments - off herbs now for almost 4

>months.

> > <http://www.webmosaics.com/thryoid/>http://www.webmosaics.com/thryoid/

> >

> > -- Newbie has RAI/eye question

> >

> > Was planning to get pregnant this year. With this in mind my endo

>has

> > recommended RAI.

> >

> > I am worried about my eyes. Right now my eyes pop to varying

>degrees -

> > it depends on the day. And I get double vision when I am tired.

> >

> > I know that no one can tell me what will happen to my eyes. I am

> > seeing an eye doctor tomorrow to see how bad it is.

> >

> > Would like to hear RAI affected others (re: eyes and in general).

> > Thank you!

[Guest guest]

In a message dated 6/25/2003 11:12:02 AM Eastern Daylight Time,

chacha_tsaros@... writes:

> I am worried about my eyes. Right now my eyes pop to varying degrees -

> it depends on the day. And I get double vision when I am tired.

>

Hello,

I also had these eye symptoms prior to RAI. Two weeks after RAI, I was

disfigured with constant double vision. My advice to you would be to stay far

away

from RAI and take PTU instead. You can see before and after RAI pics of me

here and also read my story.

God bless,

<A

HREF= " http://hometown.aol.com/lisareynolds64/myhomepage/personal.html " >http://ho\

metown.aol.com/lisareynolds64/myhomepage/personal.html</A>

[Guest guest]

Hi Kim,

thanks for sharing your story. It should help others.

The eye disease often develops or worsens after RAI because RAI stimulates

the immune system to produce more thyroid antibodies. Thryoid antibodies are

also released from dying thyroid cells.

The original immune system defect that caused GD worsens after RAI, but

without thyroid tissue to attack, the antibodies react with orbital tissue. You

can

help your immune system heal with stress reduction techniques,

diet...primarily avoiding iodine, sugar, saturated fats and anything you might

be allergic

to. Certain nutrients, especially B vitamins and flaxseed oil will also help

reduce some eye symptoms. Best to you, elaine

[Guest guest]

I had RAI in Feb. of this year. I didn't have any eye problems before RAI but I

do now. I also told my endo that we wanted to try for another baby this year and

he told me that the RAI would be best for me. I didn't know any thing about

Graves so I did it. I went hypo last month and I'm in remission as of now, but I

still have swollen eyes. I see my eye dr. again today. If you can have a safe

pregnancy without doing the RAI thing. DON'T DO IT. I wish that I knew then what

I know now about RAI. I pray that you are blessed with a healthy pregnancy. God

Bless. Kim H.

chacha_tsaros wrote: Was planning to get pregnant this

year. With this in mind my endo has

recommended RAI.

I am worried about my eyes. Right now my eyes pop to varying degrees -

it depends on the day. And I get double vision when I am tired.

I know that no one can tell me what will happen to my eyes. I am

seeing an eye doctor tomorrow to see how bad it is.

Would like to hear RAI affected others (re: eyes and in general).

Thank you!

[Guest guest]

Hi,

I am newly diagnosed with Graves...had RAI two weeks ago and have had trouble

with my eyes pretty much ever since the treatment. They seem swollen..very

irritated. I was rushed into RAI..wish I had foiund this site first. I think

I would have waited. How long do you feel crappy???? I have had about 1 1/2

days I felt " normal " or at least what I remember normal feeling like! I have

absolutely no energy, but still feel hper at times....

M

[Guest guest]

> I am newly diagnosed with Graves...had RAI two weeks ago and have

> had trouble

> with my eyes pretty much ever since the treatment. They seem

> swollen..very

> irritated. I was rushed into RAI.

Hi M. There are many here in the same boat as you. In fact, on the

homepage there is a letter to the newly diagnosed; maybe someone can

write a letter to the new members who were rushed into RAI and the found

us. Because I think that there are a lot of common points that people in

your situation go through and need to learn.

1. Don' t kick yourself. That won't be easy because this group is pretty

anti-RAI, pro-ATDs. Still, this is a good place to be because many

members (including Elaine , a medical researcher who actually wrote

a book on Graves Disease after learning more about this post-RAI) made

the same decision as you and will provide you with invaluable support and

information.

2. You will now learn how to deal with the medical community.

Inexplicably, 80% of endos push RAI and of those 80% not too many inform

the patients of their options, prepare them for RAI as well as can be

done (i.e. getting them euthyroid first, giving steroids with RAI which

may, or may not, decrease the risk of developing TED later), and monitor

them properly afterwards.

About monitoring afterwards: Here's what you need to do and learn -

- Get copies of all your bloodwork and share them with the group. People

here on thyroid hormone supplement will be able to offer you advice on

proper dosing.

- Learn what your HRT options are. Your doctor will probably start you on

synthroid and many people do well on it. However, if you keep having to

rachet up your dose and still not feel well your doctor should feel

comfortable with offering supplements that work on the T3 hormone such as

Cytomel and Armour.

- Books that I think are good on hypo (I'm not hypo so my opinion is not

as good as others on this) are Shomon's Living with Hypothryoidism

and Thyroid Power by the Shamuses (or something like that). BTW, Elaine's

book is called Graves Disease: A Practical Guide.

- Get a good testing schedule and find out what the most important

testing is. TSH, FreeT4 and FreeT3 are important. Your doctor may say the

FT3 is expensive and irrelevant. It is NOT irrelevant and call your

insurance - likely it's approved if your doctor orders it. There may be

some antibody testing that's important too, especially if your TED gets

worse.

3. About thyroid eye disease, or TED: Unfortunately RAI increase the

chances of it developing or exacerbating. There are things you can do

about it. Find an ophthamologist in your area who specializes in TED.

There are eye exercises you can do and nutritional changes that may help,

such as omega 3 supplements. Getting your thyroid stable will help also.

I think that Elaine's coming out with a book on TED soon.

4. In many ways you will feel better soon and may be feeling better

already - no diarrhea, tremor, rapid heartbeat, and all the other fun

stuff that goes along with hyperthyroidism. Let yourself enjoy the good

days! That's why you made the decision you did and with competent medical

care, which I hope you won't have to fight too hard for the good days

should become the norm soon.

Take care, Fay (who took the anti-thyroid drug Tapazole so isn't too

familiar with the info you'll need)

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