[jenm05]

#1059730

I’m new to the forum. In hindsight I had MANY symptoms but chalked them up to life with 3 kids and a husband with serious medical issues. I have no doubt that 3 years of chronic stress has triggered this. Anyway, it was a change in health providers, that my new GP (never had seen one previously) took some blood tests for baseline measurements. Turns out my TSH was <0.01 and Free T4 was 1.7 (0.8-1.5).

I got an immediate referral to an Endo. I just had the appt, he did an u/s and I have small nodules, thyroid appeared larger than it felt. He believes I have GD and started me on Methimazole. I’m happy that he isn’t pushing the other treatments to start.

He wants to do an uptake test. I’m not sure it’s necessary. I know it’s a small amount but is the radiation worth it? Are there alternatives or other less invasive ways to get confirmation (i.e. TSI)?

What is the benefit of the uptake test over the other possible indicator tests, how does it change the course of treatment?

[Kimberly]

#1177113

Hello – Antibody testing (TSI or TRAb) is often used to get a definitive diagnosis for Graves’. However, for patients who are definitely hyper, but don’t have conclusive antibody test results, the RAIU uptake & scan can help identify other causes of hyperthyroidism, such as thyroiditis and hot nodules.

I would talk to your doctor about the risks & benefits of the RAIU uptake & scan vs. simply doing antibody testing. It might be that he suspects that the nodules might be overproducing thyroid hormone.

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

[cmac]

#1177114

Hi Jen, as far as I know the uptake scan is the gold standard for diagnosing GD. It will allow the radiologist to see the shape and size of the thyroid, the presence of nodules, and whether they are hot or cold, which can indicate thyroid cancer. The percentage of uptake is also important for diagnosis. I would definitely have the test. It uses a tiny amount of radioactive material that leaves no ill effects. Talk with your Endo about your concerns, I’m sure he/she is well used to explaining the benefit of the uptake scan. Good Luck.

[adenure]

#1177115

Hi Jen,

I got Graves after my 4th baby was born. There was a question as to whether it was postpartum thyroiditis. I was also breastfeeding so I didn’t want to get the scan as I’d have to wean temporarily for 3 days. My endo. did antibody testing (which was positive) and he diagnosed me with “95% certainty” of having Graves. He started me on methimazole. Unfortunately, methimazole caused me liver issues, so I had to choose RAI or surgery (I opted for surgery).

Before taking such a big step like surgery, I got the uptake scan done to be 100% sure I had Graves (which I do). I weaned temporarily and did the scan. It wasn’t a big issue.

As far as what is used radioactively for a scan, the radioactive iodine is not the same that is used with RAI for ablation and destruction of tissue. The nuclear doctor explained it to me this way: Iodine-131 for ablation destroys tissue it comes into contact with. The uptake iodine (I-123 I believe) “bounces off” the tissue and does not destroy anything. There is an I-126 I believe mixed into the I-123 which is considered an impurity and has a long 1/2 life. But, the I-123 half life is very short (hence why I only had to wean for only 3 days). So, it is in and out of your system quickly. Because of my breastfeeding, the doctor made sure the dose I was getting was practically entirely I-123. Some doses have more of the impure I-126 and take longer to get out of the system. If you’re very concerned about it, you could do what I did and ask for a dose with very little impurity.

[jenm05]

#1177116

Thank you for your replies it was very helpful as I can’t seem to find more than the standard explanation via Google. My concern is I have little ones and we do co-sleep at times – half the reason I never considered being tired an issue . I’ve also heard of “ANA” test regarding antibody testing…is that different than the TSI? He didn’t seem concerned about my nodules…I asked him directly if he considered cancer a possibility and he said no. He just said it was to confirm his GD diagnoses. I will try to email first. He wasn’t in a hurry so I want to make sure this is safe before scheduling it.

[Kimberly]

#1177117

Hello – ANA testing is often used to diagnose other autoimmune conditions, such as lupus and rheumatoid arthritis. Here’s some additional info from the Mayo Clinic:

(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.mayoclinic.com/health/ana-test/MY00787

A positive ANA test generally just leads to further testing for other conditions, but TSI/TRAb are considered specifically diagnostic for Graves’ disease.

Hope this helps!

[Naisly]

#1177118

A lot of doctors are now discouraging the uptake if antibody tests show confirmation of graves since it is a bit out dated. Basically they do the test to know how much RAI I-131 to give. Healthy people don’t have antibodies. If there are nodules and concern, then an ultrasound is the best test for that.

I will say that even without the radiation worry from the uptake – what’s even worse is the large amount of iodine given.

From personal experience, I had it done June 14th and I regret it. My thyroid became swollen and wasn’t before, so much so at times it was hard to swallow. I was so sick and had a hard time walking as all my muscles hurt. My TF4 went from 32 to 58 in the matter of a couple of weeks after the test. I would have never done it if I knew what I know now and I would just stick with the antibody tests. I do blame the uptake for me feeling so much worse.

I did ask both my internist and endo about this and they both said – Of course you would feel worse, your feeding your thyroid with the large amount of iodine.

[snelsen]

#1177119

Well, you sure are getting a lot of opinions!
Just so you know, and can again check with your doctor to review, ATD is always the first step in the treatment of Graves’. Goal is to get you safely in the euthyroid state.

I am not sure that it is correct that if a person choses RAI as their final treatment, that the dose they give is based on the initial diagnostic ultrasound,
so this is a good question for your endo.

The TSI, TRAB and related diagnostic testing are quite a bit more expensive than lots of labs. I am not sure of the “state of the insurance art” at this time, but if you choose to have them, call the insurance company (not the doc or the office) and ask them if they are covered. Just so you don’t get a big financial shock. As you know. all insurance companies vary widely, and some of them, week by week!

As Alexis said, the dose for an uptake is minuscule, and I am pretty sure that there are no precautions with anything for this test. But again, check, with the endo (who might or might not know) or nuclear medicine, where you will have the test (I think.)

I’d probably want the uptake to be sure that the nodules are benign. Most are. But nice to know.

WElcome to our club. You will find a group of amazing folks here.
Alexis is a nice resource for you, cause you both have little children.

Shirley

[Naisly]

#1177120

Hi there,

As I said, TSI test is fundamental in testing for graves disease. This test is needed no matter what the out come. This test will help with your path to recovery as you and your doctor need to know how your treatment is progressing.

TSI antibodies not only occur for GD but for TED as well. This is why RAI (same with surgery but not as much) have a higher chance to develop TED.

The dose for the uptake might be small (for you information it is about 2-5rad, where as chest xray is well under .1rad) but that’s not the problem, it is the high amount of iodine one must take.

Even on ATA it states high amounts of iodine are not good while hyper – This is a fact. And why some doctors are not doing it. It is a contradiction to give the uptake while hyper.

An ultrasound (which is different than the uptake) CAN detect cancer and see nodules, this is becoming the preferred rule.

And just to let you know, I have 3 children as well. My son who is 17 was just diagnosed with ASD (google it). This is something I have been advocating since he was a baby. Some with my other son.

[Kimberly]

#1177121

Hi all – a couple of quick notes…

1. An ultrasound is useful for *identifying* nodules, which jenm05 already knows she has. The benefit of the RAIU uptake & scan is that it can identify whether those nodules are “hot” (overproducing thyroid hormone) and contributing to hyperthyroidism.

2. Interestingly, it seems that most doctors’ offices are using the TSI test (which is specific to stimulating antibodies) for antibody testing, although the latest medical guidance actually recommends TRAb testing (which captures both blocking and stimulating antibodies). Many docs do use TSI testing to help monitor the course of TED, but it’s not a perfect correlation.

[jenm05]

#1177122

Does anyone know more info about a false positive TSI?

My endo’s concern of relying on TSI over uptake is false neg/pos with the TSI. So my thoughts for meeting in the middle is doing the TSI as a first step.

If it’s negative, I will proceed with the uptake to make sure it’s not a false neg and confirm the GD diagnoses or not.

If the TSI is positive I’m leaning toward assuming GD and moving forward with the same diagnosis and treatment as planned. At some point if treatment is not working and he wants additional diagnoses info I will then reconsider the uptake then.

Before proposing this, I want to understand the risk of treating as GD with a false positive TSI. Either way I “think” meds in year one was the plan.

I’m new to this so if you see a flaw in these thought processes please feel free to let me know and I can investigate more.

[Kimberly]

#1177123

Hello – Obviously, you will want to make any final decisions on testing/treatment in conjunction with your doctor. It certainly doesn’t hurt to test the TSI, though — it’s a highly accurate test (95%+), although not 100%.

The issue that might be concerning your doctor is if you might actually have “hot” nodules, but are misdiagnosed with Graves’. Although the treatment options are the same, the latest medical guidance places more emphasis on RAI or surgery as the preferred treatment options for hot nodules. The use of methimazole is not as common. You can read more in the guidance from the American Thyroid Association and American Association of Clinical Endocrinologists in the “Treatment Options” thread in the announcements section of this forum.

The section on nodules starts on page 607 of the original journal article (or page 15 if you download as a PDF).

Take care!

[Khadijah]

#1177124

Hi! I had my first doctor say the uptake was necessary in order to decide how severe it is and how much medicine to give you. Also, I co-sleep with a 5 yo 😮 and I don’t remember that being a problem as I am pretty sure I asked about that. Along with the uptake they did lots of other X-rays. I was in there for a while.

Now, if you or someone doesn’t have insurance possibly you could skip it and eyeball the dosage since you end up tweaking the dosage throughout the process. I just remember thinking how expensive it would be had I not had insurance. Unbelievable.

[Kimberly]

#1177125

Just a quick note that there are two methods for determining a dosage of RAI. One (called calculated dose) does require the uptake test, as the results are factored into the dose. The other option is for the doctor to estimate the thyroid gland’s size and give a “fixed” dosage.

[Naisly]

#1177126

Kimberly You are correct when you give the methods for determining dosage for RAI. But still, doctors usually use the calculated dose.

I must add as well that most new patients have not even started on treatment before the uptake. So doing the uptake first is like adding fuel to the fire.

The un-educated endo will schedule a uptake even before anything else is determined. An educated endo will palpitate the thyroid gland and see if there are any nodules, order a thyroid panel including TSI and or TRAb and order an ultrasound. At which point the scan can see size of thyroid and if there are nodules and size of nodules, the scan can also give ‘clues’ to whether there is any cancer (I should have made myself more clear before on this). The uptake cannot see any cancer. After all is said and done, at this point the endo can make the diagnoses. If there are concerning nodules, the endo can order a FNA, which the FNA is the only test to see if there is cancer.

The thing with the uptake is – it actually cannot give a ‘true’ diagnoses of GD because it could be anything such as – diffuse thyroid hyperplasia, toxic nodular goiter, thyrotoxicosis with hyperfunctioning adenomas. Hot nodules could be caused from something else. And yes it is treated the same if this was the case, as jenm05 said, her endo was looking for a diagnoses of GD.

Also, the uptake relies on the patient and if they followed guidelines of no iodine 2-3weeks prior to the test. Problem with this is the uptake can give a false/negative results because of this. And since it is not common knowledge on what food items actually have iodine in them makes if quite difficult. IE: Seafood, dairy products etc. (Yes, I do have a list of foods that contain iodine). Actually some technicians take this into account when evaluating the scan, but it is still hit or miss.

So my question is, why take the chance with an uptake when in this day and age we can get better results from less invading tests?

~Naisly

[Author]

Posts