Re: Meds not working going to RAI

[Guest guest]

Hi CatfishJo,

I feel for you having to make a decision like this now especially after

doing the meds thing for so long. I'm wondering if the natural ATDs would

work for you - bugleweed/motherwort/lemonbalm. They do have less side

effects. Something to think about.

Something else to think about, you are worried about the " downtime " after

surgery, but I'm wondering if any doctors have told you about the " downtime "

after RAI. You know, like staying away from people, especially children for

how long? Well, I've heard different amounts of time, some docs say a few

days some say a few weeks... There were some posts awhile ago about some

cats getting RAI and having to stay in quarantine for 6 weeks because they

were too radioactive to go home to their families. Apparently the cats get

tested for the amount of radiation they " radiate " and don't go home until

those levels are almost gone, but people are not ever tested? As a school

teacher or someone who works around kids, you really have to look into that

aspect of it all and really start asking those questions of your doctors,

and probably warn the school you work at about the procedure and risks to

the students. I really think you would/should have to take a month or more

off of work.

Also, if you haven't already, please read the " 20 Reasons I will never have

RAI " in the files section of the site, there are many risks on there that

most doctors fail to tell people about.

If I were in your shoes, and having to make such a tough decision, I would

try the herbal tincture to see if that would work, and if not, then opt for

surgery, making sure you get the best surgeon available in your area. I

don't think RAI is the quick and easy fix it is chalked up to be... though

I'm sure some would disagree.

Pam B.

http://www.webmosaics.com/thyroid/

" Life is what happens when you are busy making other plans " - Lennon

Meds not working going to RAI

> Unfortunately PTU and Tap have decided that they no longer like my body-

have

> been having severe skin rashes and red/purple splotches show up on my

body.

> Dr. advises that I am having an allergic reaction to these drugs. I was

on

> PTU for 3 years when I went off earlier this summer for about a month (was

> having reactions in April and May). Symptoms came raging back so they put

me

> back on since I freaked over being nuked or going the " cut and scrape "

route.

> I was on 300 ml daily when I went off in May and they put me back on at

200

> ml daily. Within 3 weeks I started having skin problems again. I may feel

> great back on the meds but can't stand the rashes and splotches coming

across

> my skin - very unattractive and itchey! Am also having problems with

minor

> boo-boos healing in a timely manor.

> Against my inner feelings I have decided to go nuk as the idea of cut and

> scrap sounds much more invasive and also sounds like more down time. I

work

> at a school and just started back yesterday.

> This is the 3rd dr. I have gone thru but the one I like the most. He has

> never " urged " me to do anything but encouraged me to research and ask

> questions, and " think about it " . The last endo gave me an ulitmatium to

have

> RAI or find another dr. which I did.

> Personally I do not care for any of the choices: meds, surgery, RAI but am

> realizing I am getting to the point of not being able to ignore this much

if

> any longer.

> I can only hope for the best of the worst and take it from there.

> Anyone else have these reactions to meds - and what became of your

" problems "

>

> Sign me off as " resigned " to my fate.

[Guest guest]

I have said before, and will continue to say, that there are times when

RAI is the best choice. I think all three treatments are pretty

crummy; we really don't have any GOOD choices, so we just have to do

the best we can. Lots of people, including myself, have had it. It is,

after all, the most common treatment for Graves in the US. If it is

what you decide, you will at least have peace of mind, having tried both

TSD's first. I also didn't care for the option of surgery. I don't

respond particularly well to anestesia, and I don't heal all that well.

I also was very uncertain to trusting such a vulnerable part of my body

to a surgeon's knife when there was a less invasive treatment

available. I used to work in radioisotopes in a research lab, so I have

a lot of respect for radiation, but I don't fear it as strongly as some

do. Like any other treatment for Graves, the most important thing seems

to be getting monitored regularly. You will end up hypo, and there is

no point in letting your balance get all thrown out in that direction!

There is some small chance that you will be one of the incredibly lucky

people who come out of RAI or surgery euthyroid, but it is rare and

usually not permanent, so don't count on that. I'm still experimenting

with dosage, but am feeling pretty good most days now that my synthroid

has kicked in. I am sleeping pretty well, my brain is clearing, and I

am much better emotionally than I have been in ages.

-- in Fla.

CATFISHJO4@... wrote:

> Against my inner feelings I have decided to go nuk as the idea of cut

> and

> scrap sounds much more invasive and also sounds like more down time.

> I work

> at a school and just started back yesterday.

> Personally I do not care for any of the choices: meds, surgery, RAI

> but am

> realizing I am getting to the point of not being able to ignore this

> much if

> any longer.

> I can only hope for the best of the worst and take it from there.

> Anyone else have these reactions to meds - and what became of your

> " problems "

>

> Sign me off as " resigned " to my fate.

[Guest guest]

CATFISHJO4@... wrote:

>

> Against my inner feelings I have decided to go nuk as the idea of cut and

> scrap sounds much more invasive and also sounds like more down time. I work

> at a school and just started back yesterday.

Well I assume if you have RAI ablation you'll have to have

longer off work than if you had surgery - especially if you work

at a school - wouldn't want you teaching my kids to 'glow in the

dark' (I bet Devin hates that expression as well).

But I assume with an 8 day half life for Iodine 131, if you are

suppose to keep away from kids, you'll have to do it for 3 or 4

halflives, till your not quite so " hot " (We always use to use 5

halflives in Physics as a rule of thumb - the body will have

excreted some of the radioactive Iodine, so the metabolic

halflife will always be shorter than the halflife of the

radioactive material). Hence Devin sending his kids away for a

month.

Surgery is a few days in hospital, apparently the Japanese make

a real meal of it and stay in hospital for 2 weeks, but that is

more cultural (and financial) than medical.

I was in for 3 nights, but one of those was before the operation

so I didn't get stuck in a traffic jam or eat breakfast by

mistake, many are in for one night, mainly to sleep off the

general anesthetic AFAICT, one person I know went home the same

day.

Still I wouldn't leap back into work after a general anesthetic

- I had a desk job in computing, and got bored stiff sitting at

home after surgery, when I could be sitting at work thinking.

YMMV

I'm not sure where the " scrape " comes in, it is more like

pruning from what I can gather. Grave's is usually treated with

partial thyroidectomy, as there is no need to remove every last

piece of thyroid (as in thyroid cancer where a total

thyroidectomy is done, followed by RAI treatment to catch any

bits lurking). So all they do is cut the bit that looks like

butterfly wings back towards the bit where the butterfly's body

should be.

I know where there are some nice photos of thyroid surgery ...

but they probably won't help convince you

The main preference for RAI in the US is down to cost, RAI is

cheaper to your insurer than surgery. The original studies

showing the risks being equal predate the current knowledge of

increased cancer and eye disease risks from RAI ablation.

So the reason RAI is offered, is it was considered just as safe

and effective, but cheaper at the time practices were being

established. Now RAI is just the way it is done in the USA, and

is the leading cause of hypothyroidism, having overtaken

Hashimoto's thyroiditis.

Invasiveness is a matter of perspective, the surgeon can only

damage what he cuts, the RAI can and will damage tissue

immediately adjacent to the thyroid.

For example;

Damage to the parathyroids is always quoted as a risk in

surgery. But it isn't always quoted as a risk in RAI. Why? I've

no idea, certainly the radiation doesn't think " must be careful

not to damage the parathyroids " , and damage to the parathyroids

is a common complication of RAI. I think there is a certain

amount of " out of sight - out of mind " operating.

Either way you elect to do a certain amount of permanent damage

to the thyroid, from a thyroid function perspective it doesn't

matter much how you destroy 80% or so of your thyroid.

Some recommend against RAI for those who can't tolerate the

drugs, as RAI leads to hyperthyroidism.

Some recommends against surgery for those who can't tolerate the

drugs, as surgery usually requires the thyroid to be shrunk

through treatment (Postassium Iodide can be used for this).

Anyway I hope you'll give surgery a little bit more thought,

modern surgery is incredibly safe, despite our natural

resevations over being cut open. Face it some people opt for

more major surgery for cosmetic reasons.

Most patients don't suffer significant complications from either

treatment, the main problem being sorting a suitable treatment

if they are hypothyroid afterwards.

Sorry to hear the drugs disagree with you,

What ever you decide, I hope it works out well.

Simon

[Guest guest]

the rashes and splotches coming across

my skin - very unattractive and itchey! Am also having problems with minor

boo-boos healing in a timely manor.

These are signs of too much medication.

What were you lab results ( and the normal ranges ) at the time ?

ATDs should be closely monitored with labs.

You need to get copies of these results each time.

ATDs should never be stopped and started like that. It will cause you much

misery.

If you had labs in hand, and had small frequent reductions, more than likely

things would be much different.

Did you see the post last week from Devin ? He works in the nuclear

industry, and he did have RAI...he sent his entire family away for one

month.

-Pam L -

[Guest guest]

Hi Catfish,

I am so sorry you are having to face this. I know you have been wrestling

with this decision and sometimes a permanent decision is all we have to go

with.

>>>Against my inner feelings I have decided to go nuk as the idea of cut and

>>>scrap sounds much more invasive and also sounds like more down time. I

>>>work at a school and just started back yesterday. This is the 3rd dr. I

>>>have gone thru but the one I like the most. He has never " urged " me to

>>>do anything but encouraged me to research and ask questions, and " think

>>>about it " .<<<

I use to feel the same way regarding surgery, no way, now how, was I going

to allow anyone to cut into my throat and risk never being able to talk

again <YIKES!> I have since changed my mind on that, I would opt for

surgery in a NY minutes, but that only comes from talking with several

patients who have gone the surgical route. There are 5 or 6 of them now at

http://www.mediboard.com/cgi-local/ubbcgi/ultimatebb.cgi?ubb=forum & f=1 & DaysPrune\

=1000

All have rebounded much quicker than I or several others who have gone the

RAI route ever did. They are on replacement hormone much quicker than many

of us, and doctors tend to know a good starting dose once the thyroid has

been removed. Also with surgery, the surge of excess hormone and antibodies

being released into the body doesn't happen. That is not a fun time.

If you go to the link above and do a message for 'all who have had surgery'

or message to Shari <sub-total> globee, rugratsmom, , and I know I am

leaving a name out...but I do know they could give you their experiences if

you wanted to look one more time at the surgery vs RAI issue. lil Deb in

this group who is a singer made a decision several months ago, if/when faced

with permanent treatment she will go with the surgery, she may be another

one to talk ot.

Caroline <under in the older archives> did the

surgery and she shared her decision making, the surgery and the recovery

with us, in full detail. You can find her posts from Sept of 2000 -

Novemeber of 2000, her surgery was in October of 2000.

And Simon right here in this group had a sub-total and I *know* he will be

helping out right now too.

Anyhow, if surgery is definitely out of the question, know that we will be

here for you and will help you at any time.

One caution, since you work at a school, make sure you take enough time off

to not be an exposure risk to the kids. In Germany they still isolate

people who do I-131 ablation for 2 weeks in a special wing of a hospital

before allowing them to go home <article from spring of 2002>...they use to

keep them 4-6 weeks until they no longer set off radiation detectors...so

maybe staying home from work for at least that long would be something to

consider so none of the little ones will have any unnecessary exposure risk.

Take care and *HUGZ* for you Catfish, I hope you will feel better much

sooner!

Jody

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Hi,

Just wanted to mention that poor healing is a hypo symptom, and rashes are

generally caused by an ATD dose that's too high. Be sure that you're being

monitored with FT4 levels as well as TSH levels or you could easily be hypo.

Also, when I had RAI, I registered high levels of RAI for 8 weeks and

contaminated the nuclear chem department where I was working. While most

sources recommend avoiding contact with children for 1 week (because the

thyroid cells of children multiply much faster than ours, causing more of a

risk of mutation), you will be emiting radioine rays for about two months.

Take care, Elaine

[Guest guest]

hey all, now you guys have officially scared me. my RAI is sceduled for the 27th

of this month. now i m worried. how long do i stay away from my kids? my doctor

told me 24 hours. i wold hate to put my kids in jeaperdy. if possible could

anyone give me ideas on the subject. i wold greatly appreciate it. thanks george

and peggy

Pam B

wrote:Hi CatfishJo,

I feel for you having to make a decision like this now especially after

doing the meds thing for so long. I'm wondering if the natural ATDs would

work for you - bugleweed/motherwort/lemonbalm. They do have less side

effects. Something to think about.

Something else to think about, you are worried about the " downtime " after

surgery, but I'm wondering if any doctors have told you about the " downtime "

after RAI. You know, like staying away from people, especially children for

how long? Well, I've heard different amounts of time, some docs say a few

days some say a few weeks... There were some posts awhile ago about some

cats getting RAI and having to stay in quarantine for 6 weeks because they

were too radioactive to go home to their families. Apparently the cats get

tested for the amount of radiation they " radiate " and don't go home until

those levels are almost gone, but people are not ever tested? As a school

teacher or someone who works around kids, you really have to look into that

aspect of it all and really start asking those questions of your doctors,

and probably warn the school you work at about the procedure and risks to

the students. I really think you would/should have to take a month or more

off of work.

Also, if you haven't already, please read the " 20 Reasons I will never have

RAI " in the files section of the site, there are many risks on there that

most doctors fail to tell people about.

If I were in your shoes, and having to make such a tough decision, I would

try the herbal tincture to see if that would work, and if not, then opt for

surgery, making sure you get the best surgeon available in your area. I

don't think RAI is the quick and easy fix it is chalked up to be... though

I'm sure some would disagree.

Pam B.

http://www.webmosaics.com/thyroid/

" Life is what happens when you are busy making other plans " - Lennon

Meds not working going to RAI

> Unfortunately PTU and Tap have decided that they no longer like my body-

have

> been having severe skin rashes and red/purple splotches show up on my

body.

> Dr. advises that I am having an allergic reaction to these drugs. I was

on

> PTU for 3 years when I went off earlier this summer for about a month (was

> having reactions in April and May). Symptoms came raging back so they put

me

> back on since I freaked over being nuked or going the " cut and scrape "

route.

> I was on 300 ml daily when I went off in May and they put me back on at

200

> ml daily. Within 3 weeks I started having skin problems again. I may feel

> great back on the meds but can't stand the rashes and splotches coming

across

> my skin - very unattractive and itchey! Am also having problems with

minor

> boo-boos healing in a timely manor.

> Against my inner feelings I have decided to go nuk as the idea of cut and

> scrap sounds much more invasive and also sounds like more down time. I

work

> at a school and just started back yesterday.

> This is the 3rd dr. I have gone thru but the one I like the most. He has

> never " urged " me to do anything but encouraged me to research and ask

> questions, and " think about it " . The last endo gave me an ulitmatium to

have

> RAI or find another dr. which I did.

> Personally I do not care for any of the choices: meds, surgery, RAI but am

> realizing I am getting to the point of not being able to ignore this much

if

> any longer.

> I can only hope for the best of the worst and take it from there.

> Anyone else have these reactions to meds - and what became of your

" problems "

>

> Sign me off as " resigned " to my fate.

[Guest guest]

Good luck Catfish, you may be one of those who lives happily ever after.

But you can never be sure. Make sure your doctor protects your eyes.

[Guest guest]

Peggy gullotto wrote:

>

> hey all, now you guys have officially scared me. my RAI is sceduled for the

27th of this month. now i m worried. how long do i stay away from my kids? my

doctor told me 24 hours. i wold hate to put my kids in jeaperdy. if possible

could anyone give me ideas on the subject. i wold greatly appreciate it. thanks

george and peggy

The University of California, Medical School suggest 2 to

4 days depending on dose (0-10 2 days, 10-30 millicuries 4 days,

since a medium dose for Grave's may be around 10 millicuries,

although some have less if aiming for euthyroid not hypothyroid)

During this period you should shower frequently, sleep in a

separate room, use disposal eating utensils, and wash your

clothes and bedding separately. Avoid contact with kids, and the

pregnant (especially the just pregnant - as if you can tell!),

and prolonged exposure (i.e. spending hours in the same room

with) to anyone.

For the first week you should continue to avoid contact with

kids and the pregnant.

Following such a protocol the maximum likely doses family

members will be exposed to are around 100 millirad in 10 days.

By extrapolation I assume total treatment is likely to expose

your nearest and dearest to about the equivalent of two to three

years naturally occuring background radiation over the course of

a month, or the equivalent of three or four chest X-rays each.

These aren't huge doses of radiation, but they are of the same

order of magnitude as the maximum recommended annual dose.

The cancer risk from such doses is very low. Some reports of

contamination from sweat (and face it Grave's patients can sweat

a lot) are appearing, including contamination of jewelry, so the

'shower a lot, wash your clothes separately' tip is probably

sound advice.

The more care you take in the protocol, the lower the exposure,

remember those who were used to measure such things were wearing

radiation meters, so had a constant reminder to stick with the

protocol.

Where did Devin disappear to?

Simon

BTW: I've also seen a suggestion to double flush loos, as most

of the radioiodine is excreted in urine, again a couple of extra

gallons of water won't cost much.

[Guest guest]

--- This is my first post, so bear with me.

I had a total thyroidectomy in July 1999. It seemed like the lesser

of two evils (RAI or Surgery). I went home the day after the

surgery. I didn't require any pain medicine after I left the hospital.

Surgery is always scary and I certainly understand your reasons for

RAI. However, I just wanted to put in my two cents worth to let you

know in my experience, the surgery was alot easier than I had

anticipated. Of course I did have an excellent surgeon with big blue

eyes who would hold my hand and ask " how you are feeling! "

I didn't choose RAI for several reasons, some have already been

stated. For one, I didn't want to have to stay away from my daughter

for several days and didn't think I could deal with flushing 3 times

after each use or using different eating utensils. But the main

reason is that I sought out people with the disease (amazing how many

there are) and ask them what treatment they used. I got the most

satisfied results from people who had the surgery.

Good luck on whatever you decide, it is a tough decision to make

and I wish you all the best

H

[Guest guest]

While I think some of the talk about weeks or even a month in quarantine

is overkill, I suppose people have to do what makes them comfortable...

A lot depends on your kids age, too. I have a son who was 2 1/2 when I

did RAI, and he was visiting my parents when I had it. We decided to

leave him there for a week. He was too young to understand about

keeping away, and it would have made me miserable. I think I wouldn't

want to cut it shorter. My DH slept on the couch for that week, and I

used disposable dishes. Here they advise that you stay about 6 feet

away from anyone who is pregnant, or from small children, just to be on

the safe side, but they only tell you to stay at home if you are getting

a dose for thyroid cancer, which is much higher. The iodine is present

in body fluids, that is what you need to watch out for. Careful hand

washing is one of the most important things, really.

I really hated the " unclean " feeling I had with this, but I am glad I

chose it over surgery. Nothing about Graves is quick and easy, and

neither is this, but for me it was certainly less stress on my body than

the surgery would have been.

-- in Fla.

[Guest guest]

I posted on a paper I received from The Cleveland Clinic Foundation in

Cleveland, Ohio. when I was going to do the RAI. It is post#1603. This

is a basic paper given to all patients and then when they determine how much

I-131 you need it can change if you need more than the average, which they

told me I would need more than average.

Debbie

-I've been off PTU since 07-05-00-

[Guest guest]

When I asked my dr. about my eyes he said that since I have no current " eye "

problems that I should not have any post RAI.

Tell me more,,,,,,,,,Catfishjo / Debbie in Texas

[Guest guest]

Not true, Catfish. Here is the abstract of Bartalena's study. If you decide

to go with RAI, I would suggest a course of steroids before, during and

after.

http://content.nejm.org/cgi/content/short/338/2/73

God bless,

[Guest guest]

Jody,

You give me too much credit, but I luv ya!

Catfish, I have more studies if you would like to see them, but the Bartalena

study is the " standard " right now and until proven otherwise, it is proof

positive.

[Guest guest]

Jody,

You give me too much credit, but I luv ya!

Catfish, I have more studies if you would like to see them, but the Bartalena

study is the " standard " right now and until proven otherwise, it is proof

positive.

[Guest guest]

Hi Debbie, I was looking for a specific article about RAI and TED, (I'm

still looking) but came across this and thought it was interesting and

applicable:

From: http://www.suite101.com/article.cfm/graves_disease/84000

" The idea of destroying the thyroid gland to treat an immune system disorder

is no longer the viable option it once was. Studies conducted in 1999 also

show that radioiodine is much more problematic than originally thought.

Studies of survivors of Hiroshima have also contributed to our knowledge of

the carcinogenic properties of radioiodine. The November 2001 issue of Life

Extension contains an elightening article discussing recent studies

conducted by Dr. Gofman, the former director of the Atomic Energy

Commission's Biomedical Research Division of Livermore Laboratory. Anyone

who has had radioidine ablation would benefit from reading this article. It'

s also imperative that anyone contemplating radioiodine ablation read this

article. The bottom line, according to Gofman, is that there is no safe dose

or radiation. "

I can't find that link right now, but I'm SURE and Jody have tons of

information for you about this... if they don't pipe in soon, just post

again with their names in the subject line.

I'll keep looking for that link - I have it somewhere.

Pam

[Guest guest]

Hi Debbie,

Write a post with in the subject line, she has been over to a

University Hospital in her state making copies of many many studies and

research papers regarding RAI and it's affects on the eyes.

I, too, was told before ablation that I had no signs of the eye disease and

if I didn't have it then, I would never get it. Just another LIE by my

first, now fired, endo.

I have had eye involvement on and off since ablation, but it didn't become

chronic until about 18 months ago and is NOT a fun thing to deal with, I

assure you of that. But is the resident expert in this area...her

before RAI and after RAI pics of her eyes are in the file section of group,

which you can access from the home page, go to photos and open the first

folder there I think it is. Within 2 weeks of RAI her eyes became severe

She is the bravest person I know, sharing this with us, and fighting the

good fight against her first endo...there are too many studies at PubMed and

Stanford and I think Medscape that back this up, RAI can either bring on the

eye disease or make it much worse...in my opinion, this is a crapshoot.

I don't envy you having to wrestle with your decision...have you thought

about getting another opinion on your graves?

Take care Debbie,

Jody

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Here is the link for Gofman I think your looking for Pam.

Jody

http://www.ratical.org/radiation/CNR/synapseP.html

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hi Debbie:

It sounds like you are coming here as one last ditch effort to convince you

one way or the other? (I may be totally wrong!) Surgery certainly does seem

to me an option to seriously consider. But, I'm going to assume you have

already deeply considered it and have ruled it out, along with the ATD

treatment.

You may have seen posts from me recently and/or in the past regarding my

Joe's choice to have RAI. He did, and like in FL has said,

sometimes it does seem to be the right choice. I however want to caution you

(because I feel obligated to do so) that both and Joe have only

just recently had RAI and the long term effects for each of them are

impossible to guess at right now. Personally, I believe that Joe WILL be

okay -- even great -- long term, but " if wishes were horses ... " time will

tell.

I don't believe that Joe or (I hope you don't mind me using you as

a comparison/example ) are going to experience the years or even

months of untreated Hypo as some in the group have simply because they KNOW,

thanks to this group, what to watch out for. I do think it is possible for a

post-RAI patient/person to live a very close to normal life. (Sorry guys, I

have to hang on to that!)

The choices aren't wonderful ones, and nothing is a " cure. " I will say this:

Joe knows now more about the choices he had, and he still says he would

choose RAI over the other options, because it was most right for HIM.

Knowing him as I do, I know in my heart of hearts he is right. It was best

for HIM. And just like everyone else here, he doesn't want to have to suffer

further complications from Graves like eye disease. It's evoked an

incredible and positive change in him and how he feels about his life, and

how he takes care himself and has become " in tune " with his body.

Whatever you choose, it is your choice. I've been so heartened by all in the

group on this very delicate and " personal journey " subject -- everyone

appreciates that the decision is a tough choice and no " right " or " wrong "

lines have been drawn. You have my best thoughts with you.

Ann

[Guest guest]

,

I don't give you too much credit, where you have been and where you are

going and the tools you are using to get there with your eyes is amazing to

me!

You going to chat tonight?

Love,

Jody

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Debbie -- Not sure if others have replied yes, but your doctor is wrong.

RAI can *trigger* and worsen the eye disease, particularly if you smoke now

or ever have. This is pretty common knowledge and the fact that your

doctor is giving you the wrong information should give you cause for alarm.

B

Re: Meds not working going to RAI

> When I asked my dr. about my eyes he said that since I have no current

" eye "

> problems that I should not have any post RAI.

> Tell me more,,,,,,,,,Catfishjo / Debbie in Texas

>

>

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

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

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

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement

of

> the listowner. I have no input as to what ads are attached to emails.

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

------------

>

>

[Guest guest]

Hi H,

Welcome to the group and I'm glad you shared your post and decision with us.

How are you doing now? What treatment are you following?

I hope now that the first post is over <always the hardest ;-)> you will be

joining in and sharing again, often.

Take care,

Jody

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

My two cents: what ever the path you take, make frequent monitoring of your

free T3 and free T4 a planned part of your journey. Not doing so seems to be

the number one error I hear about - for all the possible treatments.

Devin

Re: Meds not working going to RAI

Hi Debbie:

It sounds like you are coming here as one last ditch effort to convince you

one way or the other? (I may be totally wrong!) Surgery certainly does seem

to me an option to seriously consider. But, I'm going to assume you have

already deeply considered it and have ruled it out, along with the ATD

treatment.

You may have seen posts from me recently and/or in the past regarding my

Joe's choice to have RAI. He did, and like in FL has said,

sometimes it does seem to be the right choice. I however want to caution you

(because I feel obligated to do so) that both and Joe have only

just recently had RAI and the long term effects for each of them are

impossible to guess at right now. Personally, I believe that Joe WILL be

okay -- even great -- long term, but " if wishes were horses ... " time will

tell.

I don't believe that Joe or (I hope you don't mind me using you as

a comparison/example ) are going to experience the years or even

months of untreated Hypo as some in the group have simply because they KNOW,

thanks to this group, what to watch out for. I do think it is possible for a

post-RAI patient/person to live a very close to normal life. (Sorry guys, I

have to hang on to that!)

The choices aren't wonderful ones, and nothing is a " cure. " I will say this:

Joe knows now more about the choices he had, and he still says he would

choose RAI over the other options, because it was most right for HIM.

Knowing him as I do, I know in my heart of hearts he is right. It was best

for HIM. And just like everyone else here, he doesn't want to have to suffer

further complications from Graves like eye disease. It's evoked an

incredible and positive change in him and how he feels about his life, and

how he takes care himself and has become " in tune " with his body.

Whatever you choose, it is your choice. I've been so heartened by all in the

group on this very delicate and " personal journey " subject -- everyone

appreciates that the decision is a tough choice and no " right " or " wrong "

lines have been drawn. You have my best thoughts with you.

Ann

[Guest guest]

Hi Everyone

This is the post I sent yesterday on a paper I received from the Cleveland

Clinic in 1997 when I was thinking about RAI. They did talk to me at the

time about the TED and that it could get worse after the RAI. I choose not

to do the RAI. After reading the paper it scared me. At the time I had

just had my son and my doctor told me to take the time and bond with him.

So, I did for three years and finally my levels tested normal after 5.5 yrs.

on ATDs.

We had several storms go through our area yesterday and I had computer

problems besides trying to hurry between storms to post. The information I

was given on I-131 is in Post# 1603. If you go to the graves support page

then click on messages at the top of the page it will say msg# Type in the

post number in the box next to it to read what I was told if I did the RAI.

I am sorry if people misunderstood that I was doing RAI. All I wanted to do

was share the post on the paper was given to me. My thyroid levels have

tested normal since 2000.

Debbie R.

> I posted on a paper I received from The Cleveland Clinic Foundation in

> Cleveland, Ohio. when I was going to do the RAI. It is post#1603. This

> is a basic paper given to all patients and then when they determine how much

> I-131 you need it can change if you need more than the average, which they

> told me I would need more than average.

>

> Debbie

>

> -I've been off PTU since 07-05-00-

>

>

>

>

>

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

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

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

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

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement of

> the listowner. I have no input as to what ads are attached to emails.

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

> --------

>

>