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Hyper and RAIU question


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Old 11-01-2013, 11:57 AM   #1
Cecic
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Question Hyper and RAIU question

Hi,

I was diagnosed with hyperthyroidism by my PCP last month and saw an endo. She did an ultrasound and after seeing the nodules on one side, said she wanted me to have a radioactive iodine uptake test and a thyroid scan in part to rule out cancer. She didn't give me any instructions to prep for the test, but I read online that you should stop any multivitamins for at least two weeks, so I did that.

I had the test yesterday/today and two techs asked me if she had told me to go on a low-iodine diet beforehand (no), the second asked at the 24 scan with a frown on his face as he looked at the screen when the machine finished. I asked him if she should have and he said not all doctors do. But I'm wondering, could not being on a low-iodine diet before negatively affect my test results or make them useless? Considering that the radiology people caught that her orders were for the wrong radioactive iodine (I-131 instead of I-123) and she forgot to order the test in the first place when she said that was what the next step was, I'm not super trusting of this doctor already!

 
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Old 11-01-2013, 10:25 PM   #2
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Re: Hyper and RAIU question

She ordered I-131 instead of I-123?!?! I would be running away from that woman posthaste. Seriously. She's untrustworthy, and you're wise to be skeptical. Aside from that bonehead, dangerous mistake, the uptake scan is NOT used to "rule out" cancer. If those are the exact words she used, she's pretty stupid. Furthermore, this test is no longer considered necessary and has been mostly replaced by the TSI antibody test. Have you had a TSI test? What was the result of that? If you'd like to post your other lab results and ranges, we might be able to tell if she's making any other misinterpretations.

As for the low-iodine diet question, a quick search of mine on the subject shows that the diet might be wise if you regularly take supplements heavy in iodine or eat a high-iodine diet; otherwise, it may not be really necessary. It's probably a moot point anyway, since the test isn't all that conclusive for the two commonest thyroid diseases - Graves' disease and Hashimoto's thyroiditis. These conditions are more accurately diagnosed with blood tests and signs/symptoms.

If she's making this many mistakes in diagnosis, she cannot be trusted not to do the same with treatment protocols.
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Old 11-01-2013, 10:43 PM   #3
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Re: Hyper and RAIU question

Thank you for your reply! Yes, the tech showed me the note on her prescription pad - I-131. He said they never would have done it, but had to get her to change it over the phone before they could do the right one. The only labs I have had were run by my internist who referred me to the Endo, so they were the bare bones ones she runs on all female patients in their 40s. I actually had not talked about my symptoms with her and had explained them away to myself.

TSH 3rd generation with reflex to FT4: 0.01
FT4: 2.0 (range, 0.8 to 1.8)

Symptoms are shaky hands, resting heart rate over 100, sweating, anxiety. When she did my ultrasound, she said my right lobe was "extremely small" but "I could have been born that way" (what's the alternative? Leaving it on a bus bench?) and on the left I had several nodes, 1 large, 2 or 3 small. But she didn't tell me the actual sizes.

I have to see her to get my scan results Wednesday, but I will get my records and go somewhere else going forward! Glad to know I'm not blowing it out of proportion. I get the sense she is a diabetes focused Endo. I need a thyroid person...

 
Old 11-02-2013, 09:03 PM   #4
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Re: Hyper and RAIU question

Hi there;
my pcp also dx me hyper and sent me to an endo. she ran the TSI (positive) and ordered the RAIU test too - I did not do a low-iodine diet prior to my testing. The only time I hear of the low iodine diet is after a TT for cancer and prior to RAI.

Here is what my testing showed:
TSH - <0.006 (0.450-4.500)
T4, Free - 3.85 (0.82-1.77)
TPO - 76 (0-34)

RAIU 6 hr 53.8 (normal 8-20)
24 hr 64.8 (normal 12-30)

I was dx with Graves disease. I tried thyroid meds for over 9 months without a positive result, was on beta blockers to slow my heart rate and ended up having a TT a year after the symptoms first presented.

I had the TT due to other complications - they did find thyroid cancer on my thyroid after removal, so for that, I am glad I had the TT...I am not thrilled with my current state post-TT, hard to find an endo that "listens"...tired of being told that I am fine when I don't feel fine.

Please be sure to find a "good" endo that you can trust before you make any long-term treatment decisions...

 
Old 11-02-2013, 09:20 PM   #5
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Re: Hyper and RAIU question

Thanks, Caymus and so sorry you still don't feel well.

I am researching Endos and despite living in southern CA with a surplus of doctors, I'm not finding anyone with glowing reviews or any reviews that mention being treated for hyperthyroid (lots for diabetes and hypothyroid).

And there are some total losers too! One arrested for writing illegal prescriptions to professional athletes, one arrested doing "the deed" in his car with his physicians assistant while snorting cocaine, several doctors with good reviews who are now dead... One woman swore her doctor healed her by "laying hands" on her. Argh!! Just give me a doctor who listens, doesn't want to immediately jump to destroying my overachieving thyroid, and doesn't submit erroneous test orders. Doesn't seem like too much to ask.

 
Old 11-04-2013, 11:35 AM   #6
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Re: Hyper and RAIU question

I haven't seen my doctor yet, but I got the results of the RAIU and scan.

6 hour uptake was 16.2%
24 hour uptake was 30.6%

Ranges:
0-10% = Hypothyroid
10-30% = Euthyroid
30-40% = borderline Hyperthyroid
41% and over = Hyperthyroid
(6 hour normals 1/2 to 2/3 of above)

The radiologists notes were: "The uptake levels are in the upper limits of normal or borderline hyperthyroid. There is intense uptake noted involving the left thyroid lobe which is significantly larger in size in comparison to the right thyroid lobe. The findings may be due to post surgical change (I've never had surgery) or modular goiter with a large nodule involving the left node."

My TSH was 0.01 and my FT4 was 2.0 (range 0.8 to 1.8)

I will discuss it with my doctor, but being on the very low end of borderline hyper, is it crazy to not want to start the methimazole I was prescribed? I feel like that will take me from on the edge of normal to hypothyroid when I'm not that hyper.

Are there any other valid treatments to knock me back the short distance into normal that don't involve methimazole or RAI? They just seem so extreme.

 
Old 11-04-2013, 01:23 PM   #7
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Re: Hyper and RAIU question

I can't help you interpret the uptake results. As I said, it's just not that precise or useful a test. You should insist on an order for TSI antibodies. They are the definitive marker for Graves' disease, the most common condition that causes hyperthyroidism. Be aware that any titer of TSI indicate Graves', no matter if the standard reference ranges consider a low titer to be "normal". It isn't.

That aside, you have above-range FT4, suppressed TSH, and symptoms that are hallmark hyperthyroid. The goal should be to reduce your FT4. It should NOT be to raise TSH, because if the cause of that is TSI antibodies, it will be quite a while before TSH will normalize. The main hormone levels to watch at this time are free T4 and free T3. For people without thyroid disease, the "normal" levels for those are between 50 and 70% of the reference ranges. The optimum varies among the population; each person has their own "sweet spots" within the ranges. Symptoms are produced from inoptimal levels for the particular individual.

It would not be unwise to begin taking the methimazole, given how it will lower your FT4 and make you feel better. You also should have been given a beta blocker. Was that done? It will slow the conversion of T4 to T3, also reducing symptoms. But, the dose should be conservative, since your FT4 is not terribly excessive.

If it turns out you indeed have Graves', I'm almost certain you'd find it helpful to read Graves' Disease: A Practical Guide.
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Old 11-04-2013, 01:52 PM   #8
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Re: Hyper and RAIU question

Thank you so much for your advice, Midwest! Yes, she gave me a beta blocker (Atenolol 25mg). I will ask her to run order the TSI antibodies test.

 
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