Re: Tosha

[Guest guest]

I wouldn't let my child swallow radioactive waste for any reason other than

thyroid cancer. RAI was the worst mistake of my life. You can see my before

and after pictures of me and get linked to my story at Mediboard at this link:

<A

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

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

Also read the thread there called " Thyroid Awareness 101 " ...a great

collection of info for the newly diagnosed. You may want to post any questions

you

have to Boatkitten, her son Austin is on antithyroid meds for Graves and is

doing

fine.

You certainly don't need to make a decision by Friday. You are being

pressured unnecessarily. Your best bet would be to get baseline Total Blood

Count

and a liver panel and get your child on Tapazole, an antithyroid medication that

is taken twice a day, has the lowest risk factors of your treatment options

and helps to heal the immune system which is the real culprit here. The

thyroid is just the victim. I would personally stick with this treatment as it

is

the only option that offers the possibility of remission. The meds will get

the hyperthyroidism under control and you can take your time and do more

research.

(who really is not an a-hole, just busy living life)

[Guest guest]

Tosha,

Here is a welcome letter written by Pam Brisse, a veteran on this list (it

is located in the " Files " section). It includes a lot of helpful info:

First of all I want to welcome you and congratulate you on reaching out for

support and for beginning your education on this disease. I know this is a

very frightening time in your life, but now that you found this site and a

group of people that know what you are going through, take a deep breath

and realize you are not alone! Part of you must be so relieved to know

there is a reason for all of your symptoms - that it's NOT all in your

head. As long as you are getting proper treatment, you will not die from

this - in fact you have a really good chance of going on to live a

perfectly normal life. It's going to take some work and some time, but know

that it's possible and let that be your goal.

Becoming educated about this disease and your options is the most

important thing you can do right now. This is an autoimmune disease, which

means that your immune system is sick. You thought your thyroid was sick?

No, your thyroid is the victim - your immune system is attacking it and

causing it to release too much thyroid hormone. And when that happens, it

affects your whole body. Here are some great links that will get you

started learning about Graves' disease, autoimmune diseases and your

treatment options:

http://www.bbc.co.uk/dna/h2g2/A688241 - This is a great overview of Graves'

Disease and treatment options.

http://www.suite101.com/articles.cfm/graves_disease - This is a wonderful

collection of articles by the author of " Graves' Disease, A Practical

Guide " , Elaine .

http://www.niaid.nih.gov/publications/autoimmune/ - An explanation of

autoimmune diseases.

http://www.webpak.net/~deecee/spouseletter.htm - This is a letter to

spouses of those with Graves' Disease, very informative and will help your

family understand what you are going through.

There are many books available. The most informative on Graves' Disease and

hyperthyroid is " Graves' Disease a Practical Guide " , by Elaine . This

book contains the latest information about treatment and triggers, and has

lots of personal stories in it - what real people have done to get better.

The second book you might want to read is " The Thyroid Solution " by Dr.

Ridha Arem - it has some excellent chapters on the mental aspects of this

illness.

Another great source of information and personal stories is in the archives

for the many support boards. Go to the home pages of these boards and

search through the archives for the subjects you are interested in. This is

an incredible sources of information.

None of the treatment options are perfect. They all have costs and/or risks

involved. You have to learn about them all and decide for yourself what is

the best one for you. Right now you are probably not thinking straight,

your hormone levels are making you impatient and anxious. Many people in

this phase of the disease are looking for a " quick fix " , but there really

isn't one. Your doctor should have given you a beta-blocker, which will

help slow your heart rate down and give you some relief. It may help you to

sleep better too.

If your levels are more than just a little high, you should have been given

a prescription for one of the anti-thyroid meds (ATDs), PTU, MMI or Tapazole.

These steps will help you to get your head back and make you feel better.

It may take 4-8 weeks to get all the excess hormones out of your system,

but you WILL start to feel better soon.

Don't let ANYONE, including your doctor, rush you into any permanent

treatment solution (e.g. RAI or surgery). Unfortunately, the information

you get from your doctor may not be up to date, or accurate. Research the

information they give you and don't be afraid to ask questions. In a little

while you might actually know more about Graves' disease than your doctor,

and that really will be empowering.

If you have a doctor that will work with you and is open learning about the

information you are learning about, take copies of articles with you for

your doctor to read. I have had great luck taking Elaine 's Graves'

disease book with me to my doctor. If you're doctor isn't up on the latest

studies about antibodies and treatment options, or isn't receptive to the

research you present, you may need to keep looking for one that does.

From now on, you should get and keep copies of all of your lab work so

that you can monitor your progress. What works really well for many of us

is to write a little note about how we are feeling on the day we get our

blood drawn, and when the results come back, we staple that note to our

copy and file it away. This will prove to be a really helpful tool when it

comes time to figure out what your optimum levels are -everyone is

different and only you can tell when you feel your best. Don't let any

doctor pigeon hole you into a range and tell you your numbers are normal.

They may be within the normal ranges, but not normal for YOU.

If insurance is paying for your labs, insist on the following labs every

4-6 weeks at a minimum: Free T4 and Free T3, TSH.. Your doctor may want T4

and T3 as well. Every several months or so, get your antibodies done.

You can read all about antibodies here:

http://www.suite101.com/article.cfm/graves_disease/54459. If you are

currently taking or plan to take ATDs, your doctor should have ordered a

WBC and CBC for your liver, and again at 4 weeks and 8 weeks. This will

help identify if you have any liver problems from the drugs.

If you are paying out of pocket, get the WBC and CBC before starting the

ATDs, and again at 4 weeks and 8 weeks. Then get at least the Free T4 and

if you can afford it, get T3 as well (Not Free T3, which is much more

expensive).

You can post your labs (with ranges) to any of the support boards

(http://groups.yahoo.com/group/graves_support/ or http://www.mediboard.com/

are my favorites) if you need help interpreting them.

Now, what many doctors won't tell you is that is it possible for Graves' to

go into REMISSION. Ideally, that should be your goal. You will know you

have reached remission when you no longer have any of the antibodies for

Graves' Disease. It usually takes about 2 years with ATDs. You can also do

it using alternative medicine and therapies. Some combination of the two

usually produces the best results.

Since this is really a disease of the immune system, using a " big picture "

approach will benefit you the most. This will include dietary changes,

stress reduction, and possibly life style changes. Only you can decide

which changes you can live with and how much you are willing to change.

Here is a list of suggestions, many of which will help you to feel better

right away:

1.) Quit your coffee, black tea, chocolate and/or soda habits. Alcohol too.

Drink lots of water.

2.) Cut down on iodine. Replace your iodized salt with natural sea salt or

salt without iodine added. Watch out for shellfish and processed foods that

contain MSG or " Flavorings " . Try to buy organic foods whenever practical.

3.) Some of us have improved our health by eliminating dairy (dairy is high

in iodine) and/or by eliminating wheat. People with Graves' have a higher

chance of having celiac disease, which is a gluten sensitivity. Gluten

intolerance can in some cases trigger Graves', and some people who have

eliminated wheat from their diets have resolved their autoimmune thyroid

disease.

4.) Find a good quality multi-vitamin/mineral supplement that you have to

take more than once a day. This should not contain iodine and should

contain copper. My favorite one is here:

http://www.drz.org/asp/store/DetailPage.asp?ProductID=369

5.) Add Omega 3 foods or supplements (flaxseed oil, fish oil, or omega 3

eggs) to your diet. This will help your eyes if you are feeling any

symptoms of thyroid eye disease. More on the benefits of flaxseed oil:

http://www.totaldiscountvitamins.com/Merchant/flaxinfo1frame.htm

6.) Try to eat 60-75 grams of protein a day, including protein with every

meal or snack. Some good ideas for protein include nuts and nut butters,

fish, poultry & meats, eggs, yogurt, humus beans, lentil soups, etc.

7.) Let yourself rest, be kind to yourself and learn to say " no " when you

really need to. Learn some relaxation exercises or yoga. Here is a link

that will help you get started:

http://www.healthy.net/library/books/jahnke/index.asp

8.) Avoid products with herbs or ingredients that " stimulate " the immune

system (such as echinacea, goldenseal or ginseng for example). You want to

avoid anything that will stimulate your already overactive immune system.

There are many herbs and foods that " support " your immune system which is

completely different, but this can

be confusing if you don't know the difference so you may want to consult an

herbalist, naturopathic doctor or nutritionist.

And finally, I want to warn you that there are lots of products out there

that promise to " cure " thyroid problems. Much of this is garbage; you

should always research any product or herb before you try it. Read product

labels on all over-the-counter drugs and stay away from cold medicines in

particular - you can really harm yourself with some of these

over-the-counter drugs.

Take care and good luck in your journey to good health. Remember the only

stupid question is the one you don't ask.

Pam B.

PS. My website outlines in more detail the changes I have made and the

alternative therapies I've chosen to help my body to heal. You can read it

here:

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

www.aconner.com

www.cognitive-behavioral-therapy-ny.com

[Guest guest]

does anyone know where this has gone?

Terry

>

> Reply-To: graves_support

> Date: Mon, 11 Aug 2003 23:04:23 -0400

> To: graves_support

> Subject: Re: Tosha

>

> http://www.webpak.net/~deecee/spouseletter.htm - This is a letter to

> spouses of those with Graves' Disease, very informative and will help your

> family understand what you are going through.