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Thyroid  (Expert Forum)
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Graves and Radioactive iodine
Answered by
Mark Lupo, M.D. - Thyroid Nodules, Thyroid Cancer, hyperthyroidism, hypothyroidism, Thyroid Ultrasound
Thyroid & Endocrine Center of Florida Sarasota - FL
Questions in the Thyroid forum are answered by Dr. Mark Lupo. Topics covered include goiter, graves disease, Hashimoto's thyroiditis, hyperthyroid, hypothyroid, thyroid cancers, thyroiditis, and thyroid stimulating hormone (TSH).
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MedHelp Member's Question

Graves and Radioactive iodine

by lswen, Oct 06, 2005 12:00AM
I am scheduled to get irradiated tomorrow and really have some questions about doing this.  I have had the same results for about 10 years but this Endo that I have now says that this needs to be done.  I have never had any symptoms other than rapid heart beat and shaky hands.  My blood results are (normal ranges in parenthesis) TSH 0.01 (0.3-5.0), Free T4 1.33 (0.8 -1.9), T3 3.5 (2.3 - 4.2), Thyroperox Ab 40.8 (0-35).  I am just wondering if I am doing the right thing by having my thyroid irradiated when I have no symptoms.  Any help or just suggestions would be so great to hear.  Thanks!
Doctor's Answer

by Mark Lupo, M.D., Oct 07, 2005 12:00AM
A TSH <0.1 year after year is not safe (high risk of heart rhythm problems and bone loss).  So if this has been a consistent state of affairs and a thyroid uptake has been done and is elevated, RAI is a good and safe solution -- much better than having a stroke from atrial fibrillation due to untreated hyperthyroidism.
Member Comments (29)

by Ussie, Oct 06, 2005 12:00AM
I will just tell you my experience after RAI for Graves disease. For a few months I had red,dry eyes, and had to use artificial tears for about 2 months. I started having palpitations and was on a very strong beta blocker, also taking PTU.It did calm down after awhile, and what a relief it was.



So, it had caused a rise in my thyroid hormones for awhile. Not sure if this happens to everyone.

by doodlebug1, Oct 06, 2005 12:00AM
To: Iswen
You know, Iswen, though I didn't have RAI, my mother did. And I've met LOTS of folks on the internet who did. And I have yet to find someone who was happy with the results. You should go to http://www.geocities.com/ibayoa/--it's a site called Atomic Women. If it was me, I'd do ANYTHING before I did RAI.

by ancientmariner, Oct 07, 2005 12:00AM
To: Iswen
I had RAI 3 years ago, and have been miserable ever since. Is your diagnosis Graves' disease or Hashimoto's disease? (From your antibodies, I would have thought Hashi's). Have you been on ATDs (anti-thyroid drugs?) My endo gave me 2 choices - RAI or surgery - he never mentioned the third option, medication. He also never tested my antibodies, though it's clear now that I had Hashi's. Before you allow your body to be irreparably damaged, please research RAI - start with the site mentioned by Doodlebug1 above. Did you know your chance of developing thyroid cancer is greatly increased after RAI? Don't have the procedure tomorrow - take some time to research first. There's really no rush, and if you decide you still want to go through with it AFTER you learn more, you can always reschedule!

by JDrake, Oct 07, 2005 12:00AM
To: Iswen
I totally agree with ancientmariner!  I had the RAI treatment in February of this year and I totally regret it.  Biggest mistake of my life.  I wish everyday I could go back and have made a different decision.  You should definitely do research on it and then make your choice after that.



Jenni

by Ussie, Oct 09, 2005 12:00AM
To: Jrdrake
Yes, taking RAI was just a big mistake for me too. Should have stayed on the antithyroid drugs, but most of the time was hypo on them.

by JDrake, Oct 11, 2005 12:00AM
To: Ussie
I never tried the supression therapy because my endo at the time told me I have a large thyroid and the anti-thyroid drugs pobably wouldn't do me any good.  Well I would like to tell him that the RAI definitely didn't do me any good. This is like living a nightmare you can't wake up from.  Not only am I hypo for life but I have to watch what I eat because I will gain weight in a minute, my hair is falling out, I have back acne and I suffer from depression.  All of those symptoms never existed until after the RAI.  And now the doctor wants to tell me that none of the above symptoms pertain to my thyroid.  Yeah right!  They just appeared out of the blue?  I don't think so!



Jenni

by ancientmariner, Oct 11, 2005 12:00AM
To: JDrake
Oh, I can so sympathize with you. My endo treated by labs, and as soon as they were in range, the same problems were suddenly not thyroid-related. I switched to natural desiccated thyroid in February, found a different doctor, and have been increasing the dosage. I'm now at 3 grains (180 mg) desiccated thyroid, and feeling better than I have in a long time. There's still room for improvement, but I feel as if I'm making progress.

by Ussie, Oct 12, 2005 12:00AM
I had thyroid tests done. My TSH was suppressed under 0.01(which has always been suppressed since Graves disease(took PTU for two years, then RAI Feb.2004). My T4 was 11.3 range 4.80-13.90. I feel just fine right now.No heart palpitations, pulse at rest is 60.



Also, I am on estrogen replacement, and have heard that estrogen can interfere with the T4 test, making it show higher.



My doctor only checked TSH and T4.







by JDrake, Oct 13, 2005 12:00AM
To: ancientmariner
I am going to see yet another doctor today.  I am hoping he will be able to prescribe me something besides levothyroxine, I am on 150 mg of Synthroid.  Dr. Mark said that if I increased from the 125 mg to 137 mg or 150 mg that my hair wouldn't fall out, well he was wrong (sorry Dr. Mark), since my increase to 150 mg I am losing more hair.  I wish I could take the Armour but for some reason it doesn't agree with me, I have the worst stomach ache and nausea from it.  I have heard that Thyroid-S or Westroid is suppose to be another good dessicated thyroid hormone, do you know much about it?



Jenni

by ancientmariner, Oct 13, 2005 12:00AM
To: Jdrake
I only know what I've heard at other forums about Thyroid-S and Westhroid. I think the basic difference is the fillers and binders used to make the medication. I also have heard that Thyroid-S is cheaper than Armour and seems to be about the same strength. Too bad the Armour gives you a stomach ache - have you tried taking it sublingually? I do it that way because it doesn't interfere with other supplements I take, but maybe that would be easier on your stomach?

Best of luck finding abother doc and getting what you need to get well!

by Ussie, Oct 13, 2005 12:00AM
To: Jrdrake
I had a large goiter before being put on PTU, and after awhile it got smaller.



It has been such a horrid time since having RAI. And, that is because of not being able to find a doctor that knows about post RAI patients.



I have had to take care of my own needs without a doctor for almost a year. Right now I have one, but had to explain why my TSH is so suppressed. Then, he gives me a T4 test while I am on Estrogen replacement, and Estrogen can cause a higher T4.Should have had a Ft4 and Ft3.Grrr!!!



Of course, so far I feel pretty good. Have to keep a close watch on my body temperatures and pulse