Re: RAI or Tapazole

[Guest guest]

A permanent solution? What you will be dealing with after RAI is having to

take Synthroid for the rest of your life...become hypo and overweight in many

cases, and possibly dealing with the eye condition which happens to a number

of people after RAI.

I have heard that one third of all people on medication go into remission.

Why not try the medication for a year or so, as well as the supplements. If

it doesn't work out, you can always do the RAI later.

If you want more info..try reading the Hypothyroidism message board on the

AOL Better Health web site. You will see that being Hypo is not fun and that

synthroid is not a miracle drug...

[Guest guest]

Dear Marisa,

DO NOT DO RAI!!! Please do the meds and try the supplements--see our files

for extensive discussion on this subject.

AntJoan

[Guest guest]

Dear ,

When I had Graves, I was on a very low dose--5 mg. per day--but even that

became too high. You don't have to take the amount the dr. says--just listen

to your body. If you start to become hypo (e.g., begin to gain weight, feel

sluggish, etc.), just lower your dose on your own until you feel right, and

keep getting your blood tested to make sure you're on the right track. Also,

beta blockers are very helpful while you are getting well, as they protect

your heart. Remember, we all must take control of our own treatment--the

drs. don't know all that much.

AntJoan

[Guest guest]

Marisa,

My name is and I was diagnosed with Graves about 1 year ago, and I

think I had it for about 4 years prior to that. My case was probably

about a 9 out of 10. My neck was visibly swollen. Anyway, I went in for

RAI and the nuclear doc was tapping out some numbers on a calculator

and he came back to me and something like " we're not sure how much RAI

to give you, but we'll figure it out and get back to you " . At that

point I decided to do my own research. To make a long story short, I

have been making various lifestyle changes the last 4 months or so and

I have seen marked improvement. See Dr. Stolls site more info (search

Dr. Stoll).

One major disadvantage of deciding your own course of treatment is that

your endo will probably become very frustrated with you. I put mine off

on the RAI for about 9 months and he finally made the RAI appointment

for me (the second time). Also, I have no more Tapazole. I just saw a

Homeopath MD yesterday and I think he may be a quack. Another strange

thing he said is that I cannot tell my endo that I'm seeing a Homeopath

because the endo could report him to the AMA suggesting that he is

" subverting " the endo's treatment. I said " but it's my decision " and he

said it doesn't matter. Just be prepared for this political nonsense.

Keep in mind that none of these anti-thyroid drugs cure the problem

they only reduce your T3, T4 levels so you feel better. Somebody here

is using a bugleweed solution that has proven thyroid heling properties

(in case you can't get Tapazole for some reason).

I think the bottom line is that if you want to cure this problem, you

need to make as many lifestyle changes as possible. It was hard for me

to do several changes at once, but you can slowly add more as you go

along. Here are some of things you should think about:

1. Take the supplements recommends. You will get a little nauseous

at first but trust me it will stop after a while. I got mine at

vitaminshoppe.com (very convenient). I also added vitamin B1, B2, B6

(100 mg each) before meals and a good multiple B after meals (based on

recommendation by Dr. Balch's book).

2. Diet: Cut out all refined starches, sugar etc. Cut out milk, coffee,

sodas, chocolate, salt etc. Eat ONLY natural foods. I basically eat

only fruits, vegetables, nuts, eggs, fish and lean meats. Also,

supplement fish oil (good for the heart which is stressed) and Flax

seed oil. Try to eat more frequent, smaller meals. It's hard at first,

but you'll feel better from this alone.

3. Exercise: Light to moderate exercise 3 times per week (walking,

bicycle etc.)

4. Stress reduction: get the book The relaxation response workbook.

Also, for me working less and just thinking " relax " when I start to get

stressed helps. I think resting heart rate is a good indicator of how

you are doing and I measure mine alot. When I was first diagnosed, my

resting heart rate was 120!!!

Good luck,

" marisa z " <marisat-@...> wrote:

original article:hyperthyroidism/?start=33

17

> I just got back from my 1st appointment with my endo. While Tapazole

> is an option he recommends RAI. If you've done the radition option

and

> you had to do it all over again would you? Or would you opt for the

> medications? The doctor said my case was moderate (not mild). On a

> scale of 1 - 10 he he would put me at 7, which is why he would prefer

> the " permanent " solution, he didn't think I would have a chance at

> remission. Marisatz@...

>

[Guest guest]

Marisa-

I just got back from seeing my endo today, also. I have a severe case of

hyperthyroidism due to Grave's disease. At my last appointment, he was

pushing for RAI, but at this one, he gave me the option of Tapazole

instead. I took the presciption over RAI. He has me on what I consider a

high dose tho-30mg twice a day. Of course, neither of the pharmacies in the

area had it on hand, hopefully they will get it tomorrow and I can start. I

guess my question for the group would be has anyone been on a dose this

high? I really don't want to go hypo right away, since my endo is a 2 hour

drive away. My next appt. is in March..........

Marisa Z wrote:

> I just got back from my 1st appointment with my endo. While Tapazole

> is an option he recommends RAI. If you've done the radition option and

> you had to do it all over again would you? Or would you opt for the

> medications? The doctor said my case was moderate (not mild). On a

> scale of 1 - 10 he he would put me at 7, which is why he would prefer

> the " permanent " solution, he didn't think I would have a chance at

> remission. Marisatz@...

>

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

> Looking for educational tools for you kids?

> Find everything you need at SmarterKids.com

> 1/645/5/_/6563/_/947092414

>

> -- 20 megs of disk space in your group's Document Vault

> -- docvault/hyperthyroidism/?m=1

[Guest guest]

Responding to the message of <84vu3i$t4c6eGroups>

from hyperthyroidismegroups:

>

> I just got back from my 1st appointment with my endo. While Tapazole

> is an option he recommends RAI. If you've done the radition option and

> you had to do it all over again would you? Or would you opt for the

> medications? The doctor said my case was moderate (not mild). On a

> scale of 1 - 10 he he would put me at 7, which is why he would prefer

> the " permanent " solution, he didn't think I would have a chance at

> remission. Marisatz@...

>

>

Marisa,

RAI is a permanent solution that gives you a new set of problems: permanent

hypothyroidism along with any other side effects of radiating the thyroid. It

is indeed a treatment option, but one that shouldn't be viewed as a single, easy

fix.

Here's a summary from a survey taken by people with hyperthyroidism who post on

the National Graves Disease Foundation's Bulletin Board. The survey assessed

the success of the three standard allopathic treatment options: surgery, RAI or

antithyroid drugs.

Jeanette from the BB surveyed people who posted and posted the following results

on the NGDF BB on 5-8-98 at 00:45:33. In her post, she says there are other

survey posts on 7-26-97, 7-27-97, 7-29-97 and 9-12-97.

Of the 124 people who had been treated with RAI, 17 reported in their own words

that they were " feeling better. "

Of the 72 who were currently taking or had completing their course of

antithyroid drugs, 31 reported they were " feeling better. "

of the total 217 respondants, 49 reported that they were " feeling better " post

treatment.

You can figure out the percentages -- the bulk of those feeling better were

treated with ATDs. Close to half the people treated with ATDs felt better. Only

what, 1 in 7 or so of the RAI folks felt better?

You can review this BB yourself and search for the survey. The URL was just

posted on this list.

[Guest guest]

,

Re the survey: It seems a small number reported feeling better after RAI. I

would be interested, however, to find out how long it had been after these

people had this " treatment. " From what I have gathered from being on this

board (I was here at the beginning), some people may feel better initially.

Within 2 years or so, however, most become hypoT, and have a whole different

set of symptoms. Also, RAI may INCREASE the possibility of eye involvement.

As those who have been on this board for a while know, I totally rejected the

RAI option when posed to me by my endo--it absolutely was not open for

discussion. I asked for medication to address the symptoms, while I searched

for alternate cures. I have been fine for about 2 1/2 years now, thanks to

acupuncture, supplements, diet, etc.

Most articles in popular magazines, and most medical books for the general

public that I have read re thyroid disease offer RAI as the treatment of

choice, claiming it has few if any side effects. It would be great if we

could come up with some kind of massive publicity campaign to alert the

public as to the dangers of this barbaric " treatment " option.

AntJoan

[Guest guest]

AntJoan,

> Re the survey: It seems a small number reported feeling better after RAI. I

>

> would be interested, however, to find out how long it had been after these

> people had this " treatment. "

I would guess you're right, that the majority were within the first two years

and were unaware of the pitfalls ahead.

> I totally rejected RAI option when posed to me by my endo--it absolutely was

not open for

> discussion. ... It would be great if we

> could come up with some kind of massive publicity campaign to alert the

> public as to the dangers of this barbaric " treatment " option.

>

> AntJoan

We're really on the same page, here. As soon as I heard about RAI, I had an

instinctive negative reaction -- probably not as strong as yours, because I did

some research on the issue and it took me a couple of weeks to officially rule

it out. Then, I was left with (as I saw it at the time) two treatment options:

surgery or ATDs.

Thank goodness that a couple of people who routinely post on the NGDF BB

contacted me privately and offered me something I'd never thought of: stepping

away from a conventional understanding of, and approach to, hyperthyroidism.

I'm forever grateful for these two women.

I absolutely agree that we need to educate people about what I would also call

the barbaric " treatment " option of RAI. The NGDF has managed to get Jan 6 - 10 I

think as National Graves Disease Week, devoted to educating people about the

disease. While I know everyone at NGDF has the best of intentions and the staff

seems to be utterly devoted to helping the Graves community, it still makes me

shudder to think what that education will entail. It's really too bad the

organization can't offer any perspective that's not financially and

philosophically (if there's indeed a distinction that can be made between those

two) supported by the medical and pharmecutical industries.

[Guest guest]

Dear :

Why do you say to cut out milk products?

thanks

[Guest guest]

ladrisczill-@... wrote:

original article:hyperthyroidism/?start=33

61

> Dear :

> Why do you say to cut out milk products?

> thanks

One reason is because as discussed earlier milk has residual iodine in

it from cleaning the equipment. However, this is probably not a valid

concern as pointed out in his infinite wisdom that excess iodine

probably does not exacerbate Graves.

The other reason, which I realize not everyone will agree with, has to

do with the fact that the adult human body is not fully adapted to

using milk as a food source, even in individuals that are not lactose

intolerant. When a adult consumes milk, the body does not fully

recognize the milk proteins as a food source and there is a small

immune reaction. It may not be a big deal in the scheme of things, and

the benefits that milk provides may outweigh the negatives for some

people. I think it's a personal decision. In the context of somebody

suffering from Grave's, my philosophy is to eliminate as many

physiological stressors as possible so that the body may devote as much

resources as possible to fighting the disease. Coffee, sugar, alcohol,

smoking, inactivity are more obvious examples of other stressors. Also,

I have studied nutrition (informally)and finally settled on what's

often referred to as a paleo diet for my needs. The paleo diet can be

simply described as eating only foods that are natural, unprocessed,

and available to humans 50,000+ years ago. If you're interested there

is plenty of info at http://www.panix.com/~paleodiet/

[Guest guest]

Thank you for this link. I am hypthyroid, but also have lupus and

fibromyalgia. This diet is the way I have eaten for quite a while now

(though I didn't know there was a name.) I have just found by years of

trial and error and personal research that this is the way that makes

me feel the best (or should I say the least bad.) Dairy especially

causes me real trouble. But sugar, refined grains and processed foods

totally contribute to what feels like lead in my blood. I am really

excited to have found this site and 's advice on nutrients. I am

heading out to the health food store with today's paycheck for some

micronutrients, mmmm.

Siuan

" alex h " <alex-@...> wrote:

original article:hyperthyroidism/?start=33

62

> ladrisczill-@... wrote:

> original article:hyperthyroidism/?start=

33

> 61

> > Dear :

> > Why do you say to cut out milk products?

> > thanks

>

> One reason is because as discussed earlier milk has residual iodine in

> it from cleaning the equipment. However, this is probably not a valid

> concern as pointed out in his infinite wisdom that excess iodine

> probably does not exacerbate Graves.

>

> The other reason, which I realize not everyone will agree with, has to

> do with the fact that the adult human body is not fully adapted to

> using milk as a food source, even in individuals that are not lactose

> intolerant. When a adult consumes milk, the body does not fully

> recognize the milk proteins as a food source and there is a small

> immune reaction. It may not be a big deal in the scheme of things, and

> the benefits that milk provides may outweigh the negatives for some

> people. I think it's a personal decision. In the context of somebody

> suffering from Grave's, my philosophy is to eliminate as many

> physiological stressors as possible so that the body may devote as

much

> resources as possible to fighting the disease. Coffee, sugar, alcohol,

> smoking, inactivity are more obvious examples of other stressors.

Also,

> I have studied nutrition (informally)and finally settled on what's

> often referred to as a paleo diet for my needs. The paleo diet can be

> simply described as eating only foods that are natural, unprocessed,

> and available to humans 50,000+ years ago. If you're interested there

> is plenty of info at http://www.panix.com/~paleodiet/

>

>

>

>