RAI

October 4, 2001

Hi,

Swelling and sometimes pain are common symptoms in the first week or so after

RAI. It's sometimes referred to as radiation thyroiditis. Your thyroid cells

are in the process of dying so the inflammation is a natural reaction.

Take care of yourself with proper nutrition as you heal. GD causes a number

of vitamin and mineral deficiencies that you might want to start correcting.

Usually, people with GD are deficient in vitamins A, C, E, D and most of the

B vitamins, and also essential fatty acids. Supplements can help the healing

process and compensate for any free radical damage.

It's too late to worry about your decision now. The stress of worrying about

it can only make things worse. Just focus on healing. Any symptoms of

hyperthyrodism you had will start winding down soon, and the swelling in your

neck will also subside. Many docs prescribe low dose steroids after RAI to

help prevent eye symptoms so they'll be helping in this regard too. Hope

you're feeling better soon. We're all here to help with any of your concerns,

Elaine

October 4, 2001

Try not to worry. You will get well.

Radioiodine is very effective at reducing symptoms of hyperthyroidism.

And hormones are very potent chemicals. Right now you're going through

tremendous changes. Many symptoms of hyperT are increased in the first week

or first few weeks after radioiodine. This is caused by the release of

thyroid hormone and thyroid antibodies from thyroid cells. As those levels go

down, your hyper symtoms, including your anxiety, will diminish.

You'll likely eventually become hypothyroid and need to take replacement

hormone. Many of us here have spent years figuring out how to manipulate

things so we can have the optimal thyroid hormone dose. When the time comes,

we'll help you with that. We'll also help with interpreting your symptoms in

the next few weeks and help you watch for symptoms of hypothyroidism so

you're treated early.

Let your husband help with the baby now and spend time taking care of you.

For most people, hyper symptoms start resolving after the first week to 10

days, and soon your energy will return. Having youth on your side is a bonus.

Read up on symptoms of hypothyroidism too since it can creep up early

depending on how hyperthyroid you were. I had mild hyperthyroidism and became

hypothyroid by the second week. You'll soon be hearing from and Jody

and others who had RAI. If I recall right, didn't become hypothyroid

for six years. Much has to do too with your ablative dose and the size and

density of your thyroid. You may end up one of the lucky people who end up

euthyroid, with normal thyroid hormone levels, for many years. Take care,

Elaine

October 4, 2001

Thanks so much for the fast response. This is so new and scary to me. I'm

not able to take care of my 19month old son because I am so worried about

myself. My husband is very understanding but for some reason I think I'm

never going to get well.

_____________________________

Sonya

I.S. Administrator

Diamond Offshore Drilling

Direct:

Fax:

Email: srharris@...

> Re: RAI

>

> Hi,

> Swelling and sometimes pain are common symptoms in the first week or so

> after

> RAI. It's sometimes referred to as radiation thyroiditis. Your thyroid

> cells

> are in the process of dying so the inflammation is a natural reaction.

> Take care of yourself with proper nutrition as you heal. GD causes a

> number

> of vitamin and mineral deficiencies that you might want to start

> correcting.

> Usually, people with GD are deficient in vitamins A, C, E, D and most of

> the

> B vitamins, and also essential fatty acids. Supplements can help the

> healing

> process and compensate for any free radical damage.

>

> It's too late to worry about your decision now. The stress of worrying

> about

> it can only make things worse. Just focus on healing. Any symptoms of

> hyperthyrodism you had will start winding down soon, and the swelling in

> your

> neck will also subside. Many docs prescribe low dose steroids after RAI to

>

> help prevent eye symptoms so they'll be helping in this regard too. Hope

> you're feeling better soon. We're all here to help with any of your

> concerns,

> Elaine

>

October 4, 2001

Hi Sonya,

You will begin feeling better. What day did you have RAI? Once this part

is over, you will need to familiarize your self with hypo symptoms so that

as soon as you begin to see them you can call your doc and get labs run so

that you can begin your thyroid hormone replacement meds.

There is a symtom list at about message 3700 in the archives, or if you want

me to send it to you privately let me know.

Elaine is right, take care of yourself right now. Once we have done RAI

there is no turning back, but you can prepare yourself for the future so you

can be as healthy as you can. You will be taking care of the little one

again soon

Take care,

Jody

_________________________________________________________________

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October 4, 2001

I had my RAI treatment 03-Oct-01. I will look in archives to find the list

of hypo symptoms. Also I am worried about weight gain. I have always been

thin and I fret gaining weight.

_____________________________

Sonya

I.S. Administrator

Diamond Offshore Drilling

Direct:

Fax:

Email: srharris@...

> RE: RAI

>

> Hi Sonya,

> You will begin feeling better. What day did you have RAI? Once this part

>

> is over, you will need to familiarize your self with hypo symptoms so that

>

> as soon as you begin to see them you can call your doc and get labs run so

>

> that you can begin your thyroid hormone replacement meds.

>

> There is a symtom list at about message 3700 in the archives, or if you

> want

> me to send it to you privately let me know.

>

> Elaine is right, take care of yourself right now. Once we have done RAI

> there is no turning back, but you can prepare yourself for the future so

> you

> can be as healthy as you can. You will be taking care of the little one

> again soon

> Take care,

> Jody

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

> -------------------------------------

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> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

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>

> Advertisments placed on this yahoo groups list does not have the

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>

October 7, 2001

Hi Jody,

Sorry for not giving my name--it's Jinny. :-) Actually, my doctor sat me

down and told me that I had three choices, which included the meds, surgery,

and RAI. She said there was only a 30 to 50% chance that medication would

work. She said surgery was very rare today and would leave a scar. She did

lean towards RAI because supposedly it would only attack my thyroid... in

other words, I would not have to worry about my ears falling off. :-)

Admittedly, surgery scares me, and if there's only a 30% chance that

medication would work, why bother at all? I will definitely take your advice

though, and read though the archives before making any decision.

No, I am not planning to have any more children. Did you or anyone else have

heart problems associated with Graves? I am now on Inderal and it is helping

to slow my heartbeat down.

Best Regards,

Jinny Husty

hustyt@...

October 7, 2001

Hi Jinny -

Welcome to the group! I've just got a few additions to the already good info

you've received from others here. To add onto the surgery issue, the scar

might not be as bad as you think. My neighbor's daughter had a thyroidectomy

a couple years ago and you can barely see her scar unless she stretches her

neck up. The key is to get a surgeon who routinely does thyroidectomies.

They try to bury the scar in the folds of your neck. The one who did my

neighbor's even accounted for aging and how the skin would lie as she's

older (she's only 16 now). It is a beautiful scar as they go! Also, surgery

will reduce the GD antibodies (as does the ATD's). The incidence of

hypOthyroidism after surgery is lower than that of hypO after RAI

(Consultant, January 1989, p 21-28), particularly if a subtotal

thyroidectomy is performed. There is a risk of hypoparathyroidism (caused by

damage to parathyroid glands during surgery) or damage to vocal chords, but

these risks are minimal, especially with a skilled surgeon.

For RAI, it's true that it will kill just the thyroid, but other organs

(such as the kidneys, ovaries, intestines, stomach) will absorb some of the

radioactive iodine. Something to think about. ATD's are a good way to go for

at least the short tem while you are deciding if you want to do one of the

more " permanent " methods. ATD's also have their associated risks. You may be

allergic to one (most people aren't allergic to both). Side effects can be

liver damage, low white blood cell levels, and agranulocytosis (bone marrow

stops producing white blood cells - rare).

I, too, had a rapid heart rate with GD. Was given a beta blocker, but ended

up not taking it. Instead I take between 500 - 750 mg of Magnesium which

seems to bring mine down to between 75 - 85 bpm. However, mine was only

90-100 bpm to begin with. There are others here who are on Inderal and some

also have arrhythmia's.

I'm sure that everyone here would agree that the best thing you can do now

is to read everything you can find about GD. Books, medical journal

articles, anything. Also, don't rush into a decision. Take your time and

consider all your options carefully. Good luck and keep asking questions!

RAI

>Hi Jody,

>

>Sorry for not giving my name--it's Jinny. :-) Actually, my doctor sat me

>down and told me that I had three choices, which included the meds,

surgery,

>and RAI. She said there was only a 30 to 50% chance that medication would

>work. She said surgery was very rare today and would leave a scar. She

did

>lean towards RAI because supposedly it would only attack my thyroid... in

>other words, I would not have to worry about my ears falling off. :-)

>

>Admittedly, surgery scares me, and if there's only a 30% chance that

>medication would work, why bother at all? I will definitely take your

advice

>though, and read though the archives before making any decision.

>

>No, I am not planning to have any more children. Did you or anyone else

have

>heart problems associated with Graves? I am now on Inderal and it is

helping

>to slow my heartbeat down.

>

>Best Regards,

>Jinny Husty

>hustyt@...

>

October 7, 2001

Hi Jinny,

Yes to the heart problems. I went into thyroid storm before being diagnosed

and was in congestive heart failure, admitted to the hospital for 8 days

when I signed myself out after being diagnosed with everything but GD or

thyroid problems...long long story there. Anyhow, came home, found another

doctor who would look at thyroid tests, did the follow ups and diagnosed me.

He also has done 2 echo cardiograms on me to make sure I had not permanent

heart damage... the rapid heart all the time can increase the size of the

heart, just as exercising will increase muscle mass in the rest of the body.

I was on PTU and Inderal for just a few weeks, as my first endo (fired the

first 2) told me my choices where RAI or surgery, that I wasn't a candidate

for long term ATD's...I was to afraid of the surgery (God forbid *I* should

never be able to talk again LOL)...she told me how easy RAI was, one little

pill and in six months I would see exactly how sick I had been...well she

LIED...I have been sick ever since, but am doing much better than I was a

year ago now that I am on Armour Thyroid...should you decide to go with the

RAI or the surgery, make sure your endo will prescribe Armour OR T3/T4

therapy, not just synthroid, which the FDA has given them 2 years to remove

from the market because of its inconsistencies.

The Inderal will settle the heart down right away for you and help you feel

better...did she give you any ATD's, either PTU or Tapazole (or the generic

form of Tap? When people have reactions to one or the other, it can often

be attributed to the filler that is used in them. As said, very

very rare is the person who can not take either. As said, 30% of GD

people go into remission on their own, I believe with ATD's it is somewhere

between 70-80%, maybe a bit lower...in Europe where they use the BRT (block

and replace) remission is somewhere in the vicinity of 90% or better...with

this they use ATD's to block your thyroid from making any hormone, then

begin giving you thyroid hormone replacement and wean you from the ATD's, in

time you can be weaned from the replacement hormone also...If memory serves

me right this treatment is used for about 5 years or so. A (who is

from Spain) has several posts in the archives on this...and I have now heard

of 2 docs, one is in Reno, Nevada can't remember the other, but 2 are now

doing this in the States.

My endo is in Buffalo, NY if you need a good one, also I have a friend in

Pittsburgh who also has a great endo. I am really partial to my doc since

she told me on my first visit that she does NOT do RAI anymore except as a

last resort, usually when thyroid cancer is involved...she has seen the

light (YEAH!) For other parts of the country you can go to this url and see

what patients in your state have to say about docs they see...this is where

I found my doc.

http://thyroid.about.com/library/weekly/bldoc1.htm

Don't get me wrong, yours may be a good one, I'm really glad she did tell

you about all the treatments. Two great books you may want to get (you can

get both at Amazon.com) are Dr. Arem's book The Thyroid Solution and Elaine

s book (Elaine is in group Graves Disease, A Practical Guide. I

don't care for Sara Rosenthals book after reading an article where she

stated that Armour Thyroid is too new a drug and she really pushes

synthroid, (excuse me Sara, but Armour has been around a LOT longer than any

of the synthetics!)... sorry my sarcasm is showing .

Here are a few url's for you to look at too...

http://www.thyroidmanager.org/

http://www.thyroidmanager.org/Chapter10/10-frame.htm

http://www.brodabarnes.org/

http://thyroid.about.com/library/weekly/mpreviss.htm?once=true &

http://thyroid.about.com/library/weekly/aa021199.htm?once=true &

www.suite101.com (do a search for graves disease)

Also, when reading the archives, read A's about relaxation techniques,

this is essential to us! Stress makes our symptoms worse. There are also

several articles about foods, supplements and life style changes. Oh ... I

forgot, RAI can also bring on the Graves Opt homology (TED or GED) the eye

disease we can get. I am dealing with that now, and frankly it is scarier

than any other part of this disease! RAI can bring it or can make it worse

Another thing you may want to consider, most of us do it here and that is

get copies of your lab works! ALL of them from the first one. They are

yours and you have a right to a copy, I signed a form at the lab that draws

me and I pick my copy up right from the lab. I have to sign it every year,

but no hassles this way. Anyhow, if you share them here Elaine (there I go,

volunteering you again Elaine <ducking> can help you to understand what

is going on better.

I think I have blabbered on long enough .. if you have questions ask, and

keep doing your homework. Be honest and frank with your doc, if you decide

to try the ATD's for awhile while you research (usually the best way to

approach them) tell her that. Once the beta blocker is working and you get

on ATD's you will feel so much better and be able to think much clearer and

understand so much more of what you are reading. Around message 3700 there

is a post from Terry ding that has the symptom list broken down into

hyper, hypO and eyes...you may want to look at that also as many docs don't

recognize most of these symptoms (but too many have them for it not to be

GD) and may make you think...ahhhhh so that is why that is happening kind of

thing.

Take your time Jinny, we are all in this together, no matter what our choice

of treatment is

Take care,

Jody

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October 7, 2001