[Stacy777]

#1059942

Hi Friends,
I was diagnosed with GD last year and made RAI in October. Thyroid went back in size very fast. Somewhere in December i started very low dose of hormones. But in several weeks i got very high HR and doctor said to stop hormones and monitor levels.
Since that time i do not take hormones at all. Blood work is good in hormones all the time but TSH is still very low (0.07 week ago) and what is worse TSI is even growing (722 week ago).
I feel very good now and i do not understand what to do in this case. TSI is high but it does not affect hormones at all for long time.
Doc has idea that thyroid was not dead complitely and continue to work but produce much lower hormones now. He says that best idea is to make second RAI soon. But i do not know if there is sense in it.
PLEASE, PLEASE, PLEASE give me your ideas about my situation, may be somebosy had situation like my or know about close situations.
I REALLY NEED YOUR HELP!
THANK YOU
Stacy

[Kimberly]

#1178934

Hello and welcome – We are fellow patients here, not doctors…but I’ve not personally heard of doing RAI when thyroid hormone levels were normal and antibodies were high. In fact, RAI itself can cause antibody levels to spike in the months after treatment:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.eje-online.org/content/158/1/69.long

It’s definitely important during this time to keep an eye on your thyroid hormone levels and initiate treatment if you do start to go hypER again. If that does happen, the three original options are still available to you: another dose of RAI, anti-thyroid drugs, or thyroid surgery. The “Treatment Options” thread in the announcements section of the forum is a great place to research the pros and cons of each option.

Take care — and please check back to let us know how you are doing!

[Stacy777]

#1178935

Dear Kimberly,
Thank you for your quick answer!
I gave incorrect info may be – but when i was diagnosed with GD hormones were very high (like 3 times higher). Hormones went to normal after RAI and after RAI TSI start to grow high. So now after RAI:
I DO NOT take hormones
T3 and T4 are good (middle ranges)
TSH is LOW (0,07)
TSI is VERY HIGH (700+)

Does it tell you anything? Do you think i should just wait and see if hyper will be back? Is there any other problems with high TSI then possible rise of hormones some day?

THANK YOU!!!
I hope to get more comments.
Stacy

[Kimberly]

#1178936

Hello – Some doctors believe that there is a link between TSI and eye symptoms, although this is *not* a perfect correlation.

There is another Graves’ antibody test called TRAb that measures both stimulating and blocking antibodies. (TSI specifically picks up the antibodies that cause thyroid stimulation). Most of the research and medical guidance that is out there focuses on TRAb instead of TSI. Patients who have high TRAb levels are at higher risk for getting eye complications after treatment with RAI, and excessive TRAb levels can also increase the risk of a pregnant woman passing on Graves’ to her child.

Having below normal TSH but normal T3/T4 is referred to as “subclinical hyperthyroidism”. The American Thyroid Association and American Association of Clinical Endocrinologists released some guidance last this year on treating subclinical hyperthyroidism. Here is a quick excerpt:

“When TSH is persistently <0.1 mU/L, treatment of SH should be strongly considered in all individuals >=65 years of age, and in postmenopausal women who are not on estrogens or bisphosphonates; patients with cardiac risk factors, heart disease or osteoporosis; and individuals with hyperthyroid symptoms.”

You can find this guidance in the second link in the “Treatment Options” thread in the announcements section of the forum. This would definitely be a good resource for initiating further discussions with your doctor.

Take care!

[beach45]

#1178937

Stacy777,
I had RAI exactly a year ago.

I had a very good endocrinologist who is also a professor at a Medical University and supposedly up on the latest.

My TSH, FT4 and FT3 all showed hyperthyroid for almost four months post RAI; my endocrinologist told me if I still showed signs of hyperthyroid in my blood work six months post RAI, that I may need another round of I-131/RAI.

My TSH did go to 60 some time end of summer 2012. Then I went on Synthroid; yet endocrinologist did tell me some people their FT3 and FT4 can be normal yet TSH can be very low for a while post RAI. He actually had some patients who went eurothyroid post RAI.

He did not believe in antibody testing after RAI. He did not see the necessity.

MY TSI was high back with original diagnosis in Summer 2010; my TPO antibodies were normal back then.

I had my own TPO antibodies tested recently since none of my doctors will do antibody testing. They are now high which suprised me.

My thyroid eye doctor told me that my antibodies could be high 3-5 years post RAI. I was diagnosed with moderate Thyroid Eye Disease (TED) prior to having RAI yet my thyroid eye doctor told me it was okay to have RAI anyway.
My current MD told me not to worry about antibodies. What I do not understand is why some doctors do not test antibodies as I am experiencing thus far with three out of the four endocrinologists I have seen in the course of three years. Since I am becoming more stable on thyroid hormone, I no longer see my last endocrinologist as he released me to my primary MD who like I said does not do antibody testing.

Thank you Kimberly for the explanation about the TRAb antibody test.

I had subclinical hyperthyroidism for years prior to official Graves diagnosis with low TSH off and on about 15 years. No doctor tested me further and my symptoms went out of control at the end as then my FT4 was very high, FT3 and antibodies.

Well those are just my experiences as I’m always learning more and more about this disease from listening to others!

I wish you good luck with this situation and please keep us posted.

Beach

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