Helen asks…

I had radioactive iodine treatment 10 years ago…?

I had graves disease. I am taking a set dose of synthroid that I have to take for the rest of my life. When I got it done my neck or goiter shrunk. My eyes improved as the graves disease affected my eyes. The doctor told me that there was a slight chance of my gland regenerating later in the future. I just got my blood levels checked and everything seems to be normal…but I have been feeling a little shakey and I have noticed a change in my eyes and how they look. My husband noticed and pointed it out. I am getting worried because I don’t know what is going on. The other day I got an anxiety attack during class time. The last time tha happened it was when I had full blown grave disease. I don’t know what is going on. Is it possible for my immune system to attack my eyes? or am I on the wrong meds? Is there anyone out there that has gone through the same experience as me? If you did, tell me your experience and what you did to take care of your self better.

Helen answers:

Yes it is possible for the immune system to attack the eyes if another type of autoimmune disorder could be going on. It’s also possible it could be side effects of the treatment. I would recommend a consultation with the eye doctor as well to see what they say.

In the mean time here’s the link to a site that may help you find even more experiences: http://thyroid.about.com (click on the section that says, “forums”)

John asks…

What foods should I avoid with Graves’ and hypothyroid?

I have GravesDisease (hyperthyroid) and had the radioactive iodine treatment twice. Now I am hypothyroid. I understand that treatment doesn’t remove the Graves‘. I am trying to eat healthier and there are Graves‘ foods to avoid and eat and there are foods to eat and avoid if you are hypo. The lists conflict. What foods should a person with GravesDisease and a hypothyroid eat and avoid? I would appreciate any food advice.

Helen answers:

Most foods are ok in moderation, just eat a balanced diet. Avoid foods high in iodine such as Kelp or other seaweed food, beef liver and iodine salts.

Checkout the websites below.

Ruth asks…

What is the best website for the latest Graves’ Disease info?

I’m trying to make an informed decision on my treatment and I want to be armed with some knowledge before I next see my doctor. Specifically, I would like info on radioactive iodine treatment (pros-cons) and if that treatment should be done by radiologist or an endocrinologist.
I was diagnosed almost 5 years ago and I have been off and on Tapizole. 2 1/2 years ago I was in a short remission but then I went back on the meds about 6 months later.
I am considering the radioactive iodine because I basically just do not want to deal with the pills anymore.
I guess a supplemental question would be: Why can’t they just give you enough radioactice iodine to destroy just some of the thyroid instead of all of it? Why does it have to be destroyed completely?

Helen answers:

I had Grave’s Disease. After a few years they found a tumor on my thyroid and they removed half my thyroid. I have taken thyroid medication (Synthroid) for 20 years and Levothyroxin for about 9 years. Recently I had a bad problem with hair loss and all the Grave’s symptoms came back to me, but I was taking my medication. It turned out to be soy products blocking my thyroid medication. Once I quit the Nutrisystem diet and quit eating any soy products I started to feel better after a couple of months. I am on Armour Thyroid now and I feel better than I have in decades.

If you do not have a tumor then I would try other treatments first but be warned you are playing with time if they do not work and you may get worse.

If you have a thyroid condition do not do the Nurtisystem diet.

Robert asks…

graves’ disease?

My thyroid was overactive for about two years. The first year it went untreated because the docter failed to inform me of the test results and the next year he decided to wait for treatment. My thyroid function did go back to normal and has stayed normal for a couple of years now. My worry is that my grandmother had Gravesdisease and had to have radioactive iodine. Was my situation just a one time event or could I still have or get Graves‘?

Helen answers:

Graves’ disease can be caused by a group of different factors that come together to cause thyroid problems, including heredity, your body’s immune system, your age, sex hormones, and possibly stress.

You can inherit a greater likelihood to have hyperthyroidism, which means that you may develop Graves’ disease at some time during your life.

This page talks about most all of your concerns…Good luck…………

Donald asks…

I have hyperthyroidism, graves disease. Has anyone been treated with anti thyroid drugs or radioiodine ?

I have seen a endocrinologist and he is leaning towards radioactive iodine treatment. I would like to hear from someone that has had either treatment

Helen answers:

Did the endo tell you that after the radioactive iodine you will still have Grave’s disease?

Did he tell you that after the radioactive iodine, you will have an additional disease? (Hypothyroidism?)

Did he tell you that you will have to be treated for the hypothyroidism every day, for the rest of your life?

Did he tell you that after the radioactive iodine the Grave’s disease is likely to attack other areas of your body? Like your skin, and worse yet, your eyes, possibly damaging your vision?

Did he tell you that no matter how sick you are, and no matter what hypothyroid symptoms you have, if your TSH lab test comes out at a certain number, he will deny you further treatment, causing permanent damage to your body?

I didn’t think so. In that case, you need a new doctor. The one you have is lying to you and commiting malpractice.

I’ve personally been on anti-thyroid drugs for years. I plan to be on them for as long as it takes for my Grave’s disease to go into remission. Even if it takes years, or the rest of my life.

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