[Nicoletta]

#1058771

I had my 1st RAI approximately 7 weeks ago. My doctor tells me after blood tests that the RAI didn’t work. He wants me to have another dose (smaller dose the 2nd time). In the meantime, I am taking 10 mg. of Tapazole. He wants to see me back 1st week of December to schedule the 2nd RAI. This is all new to me. Initially, I just went to my doctor feeling tired and lethargic with a bad case of diarrhea. All of a sudden, I’m diagnosed with Graves Disease. I don’t know what to expect with this 2nd RAI. I was beside myself contemplating the 1st dose. What am I facing here? I’m frightened. This was just tossed at me so fast. I’m at a loss as to what to think – what to do. Can someone who might have had to take a 2nd dose give me some advice. Thanks.

[Bobbi]

#1169884

Hi, Nicoletta:

It’s not unheard of to have to have a second dose of RAI. It happens about 10% of the time, from what I’ve been told. What is somewhat unusual, though, is the timing. Typically we are made to wait months, not weeks. If Ski sees this post, she will undoubtedly write you, because she had to have a second RAI. (Also, my mom did, as well.)

That said, the dose of RAI that we get as Graves patients is significantly less than the dose given to people with thyroid cancer, who have had their thyroid removed surgically BEFORE their RAI. Typically they get at least five times (or more) the dose we do. So even if you add your second dose to the mix, you would still, most likely, be getting lots less radiation than they do. And their level of radiation has not proven to be harmful, long-term, to them. Obviously, it would have been better for it to work the first time around, but it isn’t necessarily something to be afraid of having to do twice.

That said, I would want to have the doctor’s best guess as to WHY it didn’t work. Was too little given? Had there not been enough time between stopping the antithyroid meds and the RAI dose? It would help to maximize the possibilities of a second dose actually working, if there was analysis of why things went wrong the first time around. In Ski’s case, for example, the dosing doctor gave her too little the first time, trying for "euthroid" (normal levels of hormone, with no need for medication) rather than elimination of the thyroid. But there might be other reasons.

Also, MnMama has just posted to talk about her second dose of RAI issues. You might want to read her thread.

Wishing you good luck

[Nicoletta]

#1169885

Thanks Bobbi for taking the time to read my post. I thought it might help to give you a little more info about myself. First of all, I am a 78-year-old female with no knowledge of parents, grandparents, aunts, uncles or cousins ever having mentioned anything at all about thyroid problems. Stress has always been a factor in my life. However, in 2/11 I had right carotid artery surgery and this summer I had double cataract surgery.

I saw my PCP on September 12 of this year when he told me that some of my recent blood tests were not good. He sent me to the lab for some thyroid tests. I also have diabetes 2 and I had an appointment with my diabetes doctor the very next day. He saw the same blood test and immediately diagnosed me with Graves’ Disease. My diabetes doctor talked with my PCP and it was decided that the diabetes doctor would handle the Graves’ Disease. At this time I had the uptake for further results. I was told my numbers were extremely bad and I needed the RAI immediately. I was told I was an emergency. I did not take any thyroid medication previous to the RAI.

My numbers were as follows: On 9/2/11 my Free T4 was 2.7 (0.9-1.7) and my TSH Cascade was 0.01 (0.27-4.20).

I had my RAI on 9/28/11.

I had blood tests on 10/27/11 and, at that time my Free T4 dropped from 2.7 to 2.1 (0.9-1.7) and my TSH Cascade remained the same at 0.01 (0.27-4.20).

I went to see my diabetes doctor on 11/3 and he told me the first RAI didn’t work and I needed a 2nd RAI with a probable lower dose. In the meantime, he prescribed Tapazole 10 mg., one daily until I see him again on 12/6/11 after having some more blood tests. I am feeling fairly good but not quite as good as the 2nd, 3rd and 4th weeks after the RAI. Does this further info re T4 and TSH Cascade help in clarifying my situation. There was a note on the lab report stating "requests for "thyroid Panel" (TSH/T3T4, T7 or FTI) are converted to an updated and more comprehensive thyroid screening algorithm, TFC (Thyroid Function Cascade). Single requests for total T4 are converted to Free T4. Reverse T3 and T3 Uptake are no longer available. I appreciate any and all responses to help me clarify my situation.
Nicoletta

[Kimberly]

#1169886

Just to add to what Bobbi said, there was an article by Dr. Douglas Ross in the New England Journal of Medicine published in February 2011 that notes that it can take 6-18 weeks for the full effect of RAI to occur. He notes that "if the degree of hyperthyroidism is minimal 3 months after the initial treatment, hormone levels may slowly approach the normal
or hypothyroid range, obviating the need for retreatment."

I agree with Bobbi that a discussion with your doctor is in order as to why a second treatment is being recommended so quickly.

I’m not that familiar with the "Cascade" test, but it appears to be a hierarchy of tests that starts with TSH and then proceeds on to T4 and T3 if abnormalities are found. Post-RAI, it’s really important to look at your Free T4 and Free or Total T3 numbers to determine whether the treatment worked or when you need to start on replacement hormone. TSH can remain suppressed for quite some time and is not a good benchmark for treatment decisions early in the process.

[Nicoletta]

#1169887

Thank you Kimberly. I will take this matter up with my doctor at my next appointment.

[snelsen]

#1169888

Hi, I am also in my 70’s. Some of your experience with your docs is a bit perplexing to me, so I echo Bobbi and Kimberly’s comments. Ask more questions. I think you have learned from other comments that TSH cascade is not familiar to us, not can I recall anyone having mentioned it on this board before. But, as Kimberly said, " Post-RAI, it’s really important to look at your Free T4 and Free or Total T3 numbers to determine whether the treatment worked or when you need to start on replacement hormone. TSH can remain suppressed for quite some time and is not a good benchmark for treatment decisions early in the process.

I am wondering if your primary care person is more up to date than the endo who is treating your diabetes? I have no idea, but it certainly would be in your best interest to have a doc familiar and current with Graves’.
Another question for you to ask him, is for you to ask him why it was such a big emergency for you to have RAI? Generally speaking, when we are diagnosed, ATD’s are prescribed to reduce the amount of circulation thyroid hormone that is out of whack, and a beta blocker for rapid heart rate, high BP, and symptoms associated with your body racing at warp speed.
Then, you should be presented with three choices for treatment (if you have read this board very much, this is all a repeat for you) The treatments, based on what YOU want, and your own circumstance, are: continue with ATD’s, move forward to either RAI or surgery. After any of these, we need to be followed for the rest of our lives, with the thyroid panel that has been mentioned, TSH, and the T3 and T4 labs.

You are already in the RAI mode, but I would sure ask a lot of questions before I had another RAI in this short of a time period.
Do you live in the US? Or someplace else? Best wishes with your next appointment.

[Nicoletta]

#1169889

Hi snelsen-

I reside in Michigan to answer one of your questions. I am feeling fairly well at this time except for frequent low right-sided back pain. I totally agree with you about confronting my doctor with the question of what the hurry is to have that second RAI. I will be visiting his office soon and will post any new info. Thanks for your post.

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