Radioactive Iodine Treatment

July 13, 2005

Hello, I am new to this board and is very interested in everyones

comments. I recently had radioactive iodine treatment to treat my

graves disease. I was putting it off for many years until the Ptu i

was taking started effecting my white and red blood count. My doctor

was also trying to put off the radioactive treatment. But suggested i

needed this asap. Well, now i am regretting it because I'm afraid of

the long term effect to my health. Can anyone who has had this done

tell me anything about how they are doing.

July 14, 2005

Sheena... before you even consider surgery... you really need to have the proper labs done to see what kind of production your remaining thyroid tissue has. (TSH, Free T4, Free T3).

Goiter is often a signal that the thyroid gland is doing some major struggling to produce the hormone that your body needs to function correctly. The RAI is meant to destroy thyroid gland tissue. Depending on how much is destroyed you will have either reduced production or no production. The fact that your gland is enlarging (goiter) signals you that it is trying to increase production to meet your body's needs.

Taking the tests will confirm that... you most likely need replacement hormone.

Now... the reason for RAI? what was your diagnosis, the reason that they gave you the RAI to reduce gland production? If it was cancer (which is not very common) or if it was Hashi's.... you may be one that needs full replacement levels of hormone to reduce the activity of the remaining thyroid tissue.... If you have Grave's... there may still be enough of the gland that was destroyed to leave you with insufficient production and then, too, the gland will enlarge to increase the production....

Bottom line.... go have the labs run and find out what is going on... .Goiter is not normal, natural, or okay... it's a sign that there is something that needs to be corrected.... the sooner, the better....

IMHO of course....

Topper () *15 years post RAI, no remaining thyroid function... now on natural thyroid hormone*

On Wed, 13 Jul 2005 22:36:32 -0400 "Sheena " writes:

Hey!

I had radioactive iodine treatment to treat my hyperthyroidism less than a year ago. It certainly has calmed my body down, but As a result, I have quite a large goiter now. Most the time I feel fine, but sometimes I feel like I have symptoms of hypothyroidism; I get tired really easy, even though my blood tests say I'm in normal range. I'm not currently on anything because of that....

And now since my neck has gotten to a considerable size, I've been recommended by a few doctors for surgery.

How are you doing and how do you feel?

Sheena

July 14, 2005

Sheena... before you even consider surgery... you really need to have the proper labs done to see what kind of production your remaining thyroid tissue has. (TSH, Free T4, Free T3).

Goiter is often a signal that the thyroid gland is doing some major struggling to produce the hormone that your body needs to function correctly. The RAI is meant to destroy thyroid gland tissue. Depending on how much is destroyed you will have either reduced production or no production. The fact that your gland is enlarging (goiter) signals you that it is trying to increase production to meet your body's needs.

Taking the tests will confirm that... you most likely need replacement hormone.

Now... the reason for RAI? what was your diagnosis, the reason that they gave you the RAI to reduce gland production? If it was cancer (which is not very common) or if it was Hashi's.... you may be one that needs full replacement levels of hormone to reduce the activity of the remaining thyroid tissue.... If you have Grave's... there may still be enough of the gland that was destroyed to leave you with insufficient production and then, too, the gland will enlarge to increase the production....

Bottom line.... go have the labs run and find out what is going on... .Goiter is not normal, natural, or okay... it's a sign that there is something that needs to be corrected.... the sooner, the better....

IMHO of course....

Topper () *15 years post RAI, no remaining thyroid function... now on natural thyroid hormone*

On Wed, 13 Jul 2005 22:36:32 -0400 "Sheena " writes:

Hey!

I had radioactive iodine treatment to treat my hyperthyroidism less than a year ago. It certainly has calmed my body down, but As a result, I have quite a large goiter now. Most the time I feel fine, but sometimes I feel like I have symptoms of hypothyroidism; I get tired really easy, even though my blood tests say I'm in normal range. I'm not currently on anything because of that....

And now since my neck has gotten to a considerable size, I've been recommended by a few doctors for surgery.

How are you doing and how do you feel?

Sheena

July 14, 2005

Gossimer.... !!!! are you talking about me when I'm not around!!!!! hehehehehehe

Topper ()

On Thu, 14 Jul 2005 02:18:13 -0000 "gossimerwingz" writes:

hi, There are quite a few people on this board that have had RAI's. Topper (), one of the co-owners of this group, has had RAI and is great at answering questions in regards to what has helped her.As well as sharing what she has learned from all the rest of us.Gossimer

July 14, 2005

Gossimer.... !!!! are you talking about me when I'm not around!!!!! hehehehehehe

Topper ()

On Thu, 14 Jul 2005 02:18:13 -0000 "gossimerwingz" writes:

hi, There are quite a few people on this board that have had RAI's. Topper (), one of the co-owners of this group, has had RAI and is great at answering questions in regards to what has helped her.As well as sharing what she has learned from all the rest of us.Gossimer

July 14, 2005

Hi, ....

RAI is not the first choice, in most cases, that's for sure... but when it comes to the point where your body can no longer handle anti-thyroid meds you have to make choices... Having had RAI (in my case I had no choice... whole long story there that I'll most likely be doing again soon) I think I would have preferred surgery... but... RAI having been done already, your questions are about what happens after....

I had mine about fifteen years ago. They destroyed my entire gland. I had a genetic defect that caused me to start going hyper as I went into puberty and gradually speeded up until I went into thyroid storm at about 30.... They used the RAI to stop the storm before it killed me.

I went in for tests every two weeks for the first six months after the RAI, they were monitoring my hormone levels to see if there was any gland function remaining.. there was not and when I was totally bottomed out I was started on replacement hormone.

My body had difficulty accepting the Synthroid that my endo started me on.. we tried two generics with the same results... nausea, panic attacks.. that's mostly what I remember.... we worked for two years on various dosing routines and gradually increasing the dose until I was eventually able to take 200 mcg in a single dose. I'd gained about 150 pounds during that period of time....

All the docs I saw after that never adjusted my dose... ever..... My health declined and I ended up in chronic pain and needing crutches to walk... then I was out of insurance and couldn't get meds anymore.... then it got worse....

I found a source for natural thyroid and started medicating myself... using self monitoring techniques to determine dosing adjustments... timing and the time needed between increases....

That was three years ago this month..... I've not needed crutches, for walking (I use them to dry home made pasta now!) since a few months after starting the natural thyroid, chronic pain is gone, hair is growing...Body temp is up, heart rate is up, respiration is up (all back to normal).

I had labs done last February that showed that even though I'd had vast improvement in 2 1/2 years on natural that my thyroid hormone levels were still too low. I started increasing them again.

I'm currently up to the equivalent of 360 mcg of Synthroid (mathematical formulas used to determine levels in the natural thyroid I take to allow comparison between natural and synthetic) and feeling much better than I had for ALL the years that I was on synthetics.

Some people do well on synthetics (like Synthroid, Levoxyl, Levothyroxine, etc) and others do better on natural thyroid (like Armour, Time Caps Labs, Thyroid-S) it's a very individual thing... how your body responds to the meds. How well your body does conversion, all kinds of things.

Okay.. that all said.... how do you care for a body post RAI?

It's VERY important that you ....

determine if there is any gland function left

test more than just TSH (thyroid stimulation hormone).... you NEED to test Free T4 and FreeT3 more than you need to test TSH now

be sure that your Free levels are at the correct level and not just 'in normal range'

consider your symptoms along with the labs to determine if your replacement dose of hormone is sufficient for your body's needs

be aware that your body needs a source of Calcitonin... the RAI may very well have destroyed your parathyroids as well, they are where most of our Calcitonin comes from... it's used to regulate the calcium in our blood, allowing it to be moved back into the bones too keep them strong. You can get Calcitonin in a nasal spray or in Natural thyroid (like Armour brand and it's generics)

learn foods that are good for you to eat and those which you need to moderate or eliminate... it's hard at first to adjust your diet... but in the long run the benefits are VERY much worth it.

the worst side affect that I've experienced so far from having RAI is that I've developed secondary lymphedema... most like as a result to lymph node damage in my upper chest from the radiation. You need to be aware of this so that you can keep an eye on it... symptoms may not develop for up to 20 years after receiving the radiation.

In my case RAI was my only choice... in that respect it saved my life, it was a good thing... but earlier treatment (as in the doc not telling me to go away cuz I was 'too fat to be sick') would have allowed me the option of antithyroid medication or surgery...

Do I recommend RAI? No... only if there are no other options.

Can you live after RAI? Yes... with proper testing and proper hormone replacement.

Can you live with ZERO thyroid function? Yes... again.. with proper care and proper hormone replacement....

I'm sure that you'll have more questions.... I've just given a taste of what I've dealt with... others will add to my comments and then you'll be coming up with more questions....

A couple of questions for you...

When did you have the RAI?

What have your labs been showing since then?

Welcome to our little family!

Some reading, if you like, at our website... www.thyrophoenix.com/thyroid_101.htm runs through the thyroid hormones, tests and various types of meds.... www.thyrophoenix.com/self_monitor.htm talks about some simple tests you can do on your own, between labs, to see how your body is doing.

Topper ()

On Wed, 13 Jul 2005 17:55:01 -0000 "dianargv" writes:

Hello, I am new to this board and is very interested in everyones comments. I recently had radioactive iodine treatment to treat my graves disease. I was putting it off for many years until the Ptu i was taking started effecting my white and red blood count. My doctor was also trying to put off the radioactive treatment. But suggested i needed this asap. Well, now i am regretting it because I'm afraid of the long term effect to my health. Can anyone who has had this done tell me anything about how they are doing.

July 14, 2005