Should I have RAI treatment?

[kidsnchicks]

It was strongly suggested by the Endro that I have the Radioactive Iodine Treatment for my hyperthyroidism.  I have questions about this.  This was my first appointment with him.  The test results that he had on me were three months old and he stated that they were truly only good for one month.  I understand that this is probably the best option for my situation but should it be suggested on the first visit and wilth old test results?  He said I had hyperthyroidism.  Should I know, if it is possible to know, what caused this?  I feel my sysmptoms changing/flipping between hyper and hypo without any medication or treatment.  I just want to make sure I make the right decision.  If I have the RAI, I understand it will change me, over time but still change me.  What do you think?  Should I request more blood tests before making a decision?  He did say that they would not administer the RAI until after the uptake results, but should that be all that they go by?  Am I being unreasonable?  I'm not trying to undermine the doctor but I still have questions.  Thanks for listening.

[Smilerdeb]

I have Graves Disease and had Hyperthyroidism where eventually, the meds did not block the production of thyroid hormone.
I initially wanted Thyroidectomy but due to thyroid storm (fibrillation) 3 times in 2 weeks (hyperhtyroidism was uncontrollable) , I has RAI.
I was tested for Graves from the very beginning.
Three days prior to RAI with an uptake scan, it showed my thyroid to be completely cancerous so after RAI (june 2008), I had keyhole TT as I was hypo after 5-6 weeks and the TT was done on a day patient proceedure and I havent looked back.
My case was severe.
But that doesnt mean that every case of Graves should have RAI.
Its taken a lot of time, effort and research to get where I am today.
I am 99% back to the person I was but know I will never reach that 100%.
As far as I'm concerned...99% is good enough for me and better than being dead which was on the cards if RAI wasnt done.
But I tried ATD meds for a year and it did nothing.
It seems I had Graves for many years, and it was never picked up even though I was diagnosed with Post Traumatic Stress and panic disorders and Agoraphobia.
Needless to say....I have none of those conditions now.
I only get anxiety if I am hypo or hyper (drug induced by too little/much T4 med)
Get the antibodies test done.
The ATD meds will block the thyroid and the beta blockers will help the FT3 to come down a little as that is what causes the fast heart rate.
Hope that helps.

[kidsnchicks]

I called the office and spoke with the nurse.  She stated that the scan would give them the information they needed.  I aksed about blood work.  She didn't seem to think the doctor would want to have any blood work done but said she would talk with him about it.  I told her that I was not ready to do something permanent until I knew more.  I'm still waiting to hear back.

[kidsnchicks]

I called my Endro to request the additional test.  I'll let you know how it goes.

[laura1967]

Let me know when you get your results so I can take a look at your numbers.  :)
Get a copy of your last labs for your thyroid as well.....remember to always get copies so you can reference back to them. We need to make sure you are feeling good!!! lol
Glad to have ya here!! :)

[Ariom63]

lat time I had my lab tests done was about 3months ago....I know this sounds crazy but not sure if they did any at the hospital before surgery.  Guess I am going to call my doctor today and get an appt., possibly before leaving for Texas this Thursday.  Normally when she runs my blood she checks all of them...but I am going to make sure she does this time.  

Yeah..I finally came over ..thanks to you for letting me know!  Again Laura thanks for everything!  happy to be here!

[laura1967]

Hi there!! :) :)  Glad to see you over here.  :)
What were your most recent thyroid lab results?? Did you have all 3 tests done? TSH, Free t3 and Free t4?
You probably are on way too low of a dosage of synthroid.......how long ago were your labs done?

[Ariom63]

I had it done..no big deal..then had surgery to remove left thyroid gland.  Had hyperactive thyroid.  Since then which was back in 2002...have been on Synthroid 50mcg's..I cannot tell the difference of I take the medication or if I don't.  I just don't get it.  

[skeeterknitwit]

Tests to request:
TSH
Free T4
Free T3
Thyroglobulin
TPO(antibody test for Hashi)
TSI(antibody test for Graves)
CBC with differential - looking for high white count
Sedimentation rate - High would indicate inflamatory process

Don't be afraid to question your Dr. or to get a second opinion.

A very wise man once told me to always remember that doctors "practice" medicine because they don't have it right yet.  And not every doctor graduated top ten in his class.  At some point in your life, you are bound to run into one who nearly flunked out and there is no way for us to determine that.

[kidsnchicks]

Thanks Unsure613 & Smilerdeb for the replies.  The office to suppsed to call me today with an appointment.  I have decided to request more time and testing before I make such a final decision as RAI.  If that is what I need, then fine but lets find out for cerain first.  If this doctor is unwilling or treats me as though I am being rediculous, then I will request another opinion from another office.

I'm assuming I need to request a full panel thyroid test and an antibody test - anything else?  I'm assuming as long as my levels not changing by extremes, then I can wait as long as I want or can stand the sypmtoms?  Also, on the anithyroid or beta blocker meds, how do they work?  Do they block the effects of the thyroid so that the heart, etc. are not affected and the symptoms are not felt?  Do they kill off the thyroid or make it work less?  He did say that if I took the meds, that when I stopped that the situation would still be there.

The scan I had done in February showed a greyed area in the upper left lobe.  I do not remember seeig the entire thyroid greyed by any means.  Does it have to be the entire thyroid for it to be Graves?  Does Graves get treated with RAI?

Have I missed anything?  Anything else I need to talk with the Endro about?

Thanks again for the replies.  They have confirmed my own feelings & thoughts.

[Smilerdeb]

Have you had the Graves Antibody testing done to rule out hyperthyroidism from Graves Disease?
If not...then ask for one straight away.
Take time to research and go on ATDS (anti-thyroid meds) before you make a desision.
There is not rush.
Dont let anyone tell you there is a rush unless you are having fibrillation problems.
But you DO need an antibodies test done for Graves Disease (an autoimmune disease).
let us know how you go :)

[unsure613]

I would find another doctor.  

I was diagnosed with hyperthyroid, multi-nodule goiter.  I was on the PT meds for a little over a year, had an uptake scan, about 5 blood tests and 2 ultrasounds before it was suggested RAI or surgery.  The Dr. first wanted to see if my levels changed again once they were stable.  He took me off the meds for six weeks, went for blood and ultrasound to see if my levels changed or my nodules changed, my TSH went back down, hence the next level of treatment.

I would think the first step would be the meds for at least a year, if necessary, but I'm not a Dr.  Only know what I read. Get a second opinion.  

I opted for the surgery, which I will have in about 8 weeks after my levels stablize again.

Good Luck.

[kidsnchicks]

Thanks again for the reply.  I have decided to request more blood work and time before I make a final decision.  If RAI is what I need to do, then that is fine.  I just feel the need to make sure.  A nurse friend supports me in this as well (as well as my family).  She even mentioned it could be more of the pituitary gland than the thyroid.  I just want to make sure of everything possible before I do something that is irreversible.

Are there specific tests I should request?  What time frame should I wait?  Should I wait until the symptoms are unbearable?  Currently my worst symptom is the heat intolerance.  I can deal with about everything else.  My poor family thinks they are living in subacrtica!  LOL!  I don't feel it.

I did have an illness before we found the overactive thyroid.  It was a stomach infection - H. Pylori.  The miscarriage I mentioned was nearly 19 years ago.  I mentioned it to have something to compare on my emotions after the appointment.

I'm glad to know I am not the only one that needs to know for my own peace of mind.

[skeeterknitwit]

Oops.  Should have said - The ultrasound says thyroiditis inflamation.

[skeeterknitwit]

You just go ahead and ramble!  If I were in your shoes, I would question it too!  And certainly repeat the blood work to see if this is resolving itself.  The scan says thyroiditis.
Here's a clip from one of the web sites
**thyroiditis

Subacute. Subacute thyroiditis produces an abrupt onset of thyrotoxic symptoms as hormone leaks from an inflamed gland. It often follows a viral illness. Symptoms usually resolve within eight months. This condition can be recurrent in some patients.

Lymphocytic and Postpartum. Lymphocytic thyroiditis and postpartum (subacute lymphocytic) thyroiditis are transient inflammatory causes of hyperthyroidism that, in the acute stage, may be clinically indistinguishable from Graves' disease. Postpartum thyroiditis can occur in up to 5 to 10 percent of women in the first three to six months after delivery. A transient hypothyroidism often occurs before resolution **

You can also get support while you are having hyper symptoms.  A beta blocker is very effective, works fast, and is inexpensive.  When your T's get back into normal range, you can taper off.

[kidsnchicks]

Thanks for the reply.  That is sorta how I feel.  I had my tests ran back in February.  The results were as follows:

TSH - .05 (normal 4-.4 I think)
T3 uptake - 39
T4 - 18.2
Free T4 - 7.1
Ultasound - thyroiditis/enflamed
Scan - right side dcreased from the left (I saw the results and it showed a darkend area in the upper left lobe), no nodules, no goiters
4 hour RAI uptake - 16% (normal 4-14%)
24 hour RAI uptake - 51% (normal 15-30%)

Because the tests were three months old and because he said they were no longer accurate after 3 months, I question if I should have new blood work done - at least.  I'm not sure if I am simply getting used to my symptoms or if they are subsiding but that makes me question if I am true hyper still.  Make sense?  I just don't want to kill part of me just because.  I want to make sure.  I would like to know why/how it came about.  He did ask how long this had been going on.  I wasn't sure but suspected since before Christmas or Thanksgiving of last year.  I've dealt with anxiety/nervousness in the past and just figured I was having to deal with it again.  They said I could do what I felt was right for me.  I don't think I have ever been so emotional after a doctor's apt (not even after I miscarried - I had peace about that baby and knew where that baby was; I have no peace on this).  I've been emotional all weekend and just don't understand what is going on.  Sorry to ramble.

[skeeterknitwit]

He didn't tell you the cause!!!?  Surely someone has done blood tests already.  Do you have any results to share?
When I was diagnosed hyperthyroid, I think I read every article on the www. three times.
OK, hyperT causes racing thoughts and that was the way I dealt with it.
http://www.aafp.org/afp/20050815/623.html
http://www.aafp.org/afp/20000215/1047.html
Write down your questions and take them to your appt.  
When I had my I 123 scan & uptake, I actually asked the radiologist what the % was and asked to see  the scanned images before I left the hospital.
You have every right to understand why they need to kill your thyroid.  I didn't give up without a fight.  Silly me, the end result was the same.  RAI for a toxic nodule.  But I NEEDED to know for my own piece of mind.

[Eliza150]

I had the RAI treatment in 2004. It just takes adjustments in thyroid medication afterwards..

Two years before my treatment the doctor put me on an antithyroid drug called propylthouracil. Was on that for two years. It also needs adjusting with bloodtests etc.