[Batgirl November 17, 2017 at 6:35 pm Post count: 2]

#1060869

I was diagnosed with Graves disease over 3 years ago and have been on and off methimazole this entire time trying to stabilize my thyroid levels without success. I had been suffering for years without the proper diagnoses prior to this.

Recently my endocrinologist and I decided it was time to do the RAI treatment. I finally felt a sense of relief with my decision and I could finally see the light at the end of the tunnel after making this decision.

I went this week for the radioactive uptake and thyroid scan so they could determine the dosage of radioactive iodine that I would require. After completing the 24 hour scan, however, I was told my iodine uptake levels were too low and that they couldn’t give me the radioactive iodine dosage since it wouldn’t work since it wouldn’t be absorbed by my thyroid.

My endocrinologist and the radiologist talked and don’t understand why this happened because I stopped taking the methimazole 2 weeks prior to the test as I was directed and my TSH has been 0.01 for the past 3 months despite the medication and my TSI antibodies are high as well at 324. From what I was told and asked I have no thyroid nodules and my thyroid scan was consistent with patients who have Graves disease and there is currently no thyroid inflammation.

I was directed to take lasix which is a diuretic for the next two weeks in an effort to flush out any extra iodine that my body might be absorbing somewhere other than in my thyroid. I then have to repeat my thyroid levels and repeat the uptake test.

I’ve been researching how and why this could happen and can’t seem to make any sense of this either since everything I’ve read is that thyroids in people who have Graves usually have very high radioactive iodine absorption rates.

Has anyone else had a similar experience with the uptake test because once again I seemed to have stumped the medical community.

[KimberlyOnline Facilitator November 20, 2017 at 2:50 pm Post count: 4288]

#1185198

Hello and welcome – hopefully, someone here with a similar experience will be able to comment.

This is certainly unusual, given that you have no inflammation and a definitive diagnosis of Graves’!

The only other thing I can think of would be to ask whether your diet includes a lot of high iodine foods (such as the seaweed wraps that come with sushi) or if you’ve recently had any type of diagnostic testing using contrast dye.

You might also ask your doctor if a low-iodine diet might be helpful as you prepare to re-do the test. Most endocrinologists do NOT require this for a scan, but mine did. You can find more info on this at the ThyCa.org website, as the low-iodine diet is standard practice for thyroid cancer patients who undergo RAI. (It’s the same treatment that Graves’ patients receive, but with a much larger dose).

Take care – and keep us posted!

[emmtee November 24, 2017 at 10:36 pm Post count: 148]

#1185199

Did they give you a copy of your test results? Did they tell you what the actual numbers were or did they just say they were too low? How long did you have to lie still for the scan? (The lower the uptake, the longer it takes to do the scan).

What dose of methimazole were you on before you went off of it? You never took any sort of “thyroid supplement” did you? Do you eat a lot of seafood or high iodine foods?

I only had one thyroid uptake and scan, and it was when I was first diagnosed – before I started methimazole. I wasn’t told to avoid foods with iodine, but in any case, I don’t like seafood or sushi, and even the salt in my cupboard at the time happened to be without iodine. My results were 57% after 4 hours and 73.5% after 24 hours. I think the scan took about 10 minutes.

[Batgirl December 6, 2017 at 6:40 pm Post count: 2]

#1185200

No I definitely don’t eat sushi or any fish for that matter as I don’t like seafood. I don’t eat seaweed or even really add salt to anything and the salt I use is not iodized. I have never taken any thyroid supplements either. I was on 10mg of methimazole prior to the uptake test which I stopped 2 weeks prior.

I didn’t get a copy of the test results from the scan or uptake and I was told as I was leaving that the radiologist needed to talk to my doctor which is when I found out the bad news.

I repeated my labs last Friday and finally got the results today and more bad news that my TSH is “normal” at 1.0 now so the test can’t be repeated. My TSI antibodies increased however from 3 weeks ago and my doctor literally told me tonight that he doesn’t understand what is going on and doesn’t know what to do.

I’m at my wits end and continue to feel worse by the day and every morning have to drag myself to get out of bed and go to work. I’m trying to find another doctor to get a second opinion and some help because my current doctor obviously is of no help and I’m so tired of feeling so awful!!

[Liz1967 December 7, 2017 at 5:11 am Post count: 305]

#1185201

Have you considered thyroidectomy? It is a definitive cure for hyperthyroidism and the hypo is easily managed with hormone replacement. It also tends to lower antibodies as the target, the thyroid, is removed.

[KimberlyOnline Facilitator December 7, 2017 at 7:46 am Post count: 4288]

#1185202

Yes, sounds like a second opinion and a fresh set of eyes might be helpful!

I’ve not heard of a normal TSH precluding a repeat uptake test – although certainly you might have to stop meds for a period of time.

One note on surgery: this is only a good option if you have local access (or the ability to travel) to a high-volume surgeon. There are always risks with any surgery, and while you can never get the risk of complications down to zero, the risk can be significantly reduced in the hands of a highly experienced surgeon that does a lot of thyroidectomies.

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