[Kimberly]

#1171086

Oberon wrote:

What type of eye doctor is recommended before RAI? I am also noticing mild eye issues now too. I am trying to get a referral from my Endo.

Hello – An ophthalmologist who has expertise in Graves’/Thyroid Eye Disease would be the best choice to give you an opinion. Patients with suspected optic nerve involvement will want to see a neuro-ophthalmologist.

[snelsen]

#1171087

Just a brief comment for oberon.
I’d like to add to Kimberly’s comment about seeing an opthalmologist who is familiar with TED. My word of caution is that the docs who have the equipment, and the additional tests, to watch the optic nerve carefully, are, in my opinion, neuro opthalmologists. The wiggling finger that eye docs do is not adequate to test visual fields. The eye docs who are familiar with TED, do not have the same tests to check for pressure on the optic nerve. It is possible the might SEE it if they take a look, but you want to know if there are issues long before that time. The color charts, plus the Humphrey visual field machine is the way to really know. Anyway, that is my experience and opinion.
Shirley
**I suggest you call (if your insurances allows it) and refer yourself to an eye doc familiar with TED. I imagine this is driven by your insurance, but I rarely need a referral for a specialty. I just call for an appointment. I suggest that you perform due diligence first, do everything you can to find out an eye doc who is familiar with TEd, as Kimberly said.
S

[nann]

#1171088

Hi, I was just diagnosed yesterday, I guess I’m pretty early on – I’ll be going to pick up my meds in a bit. I’m very happy to have stumbled upon this place so thankyou to whoever made it. Also very good to know that there is no way to fix this naturally – as I was thinking of trying to find something in those terms. It will be a while before I have to make the decision of RAI or surgery. Has anyone taken the surgery? how did it go? thanks.

[Kimberly]

#1171090

Nann – Hello and welcome! There are quite a few posters here who have chosen surgery as their treatment option. If you use the “Search Posts” feature in the top right-hand corner of the screen, you can search for “Surgery” or “thyroidectomy” to read their experiences.

The Foundation also included an article about surgery in our most recent print newsletter. If you’d like to send your street address to info@gdatf.org, we can put a copy in the mail to you.

Take care!
Kimberly

[nann]

#1171091

I will do that – thank you.

[snelsen]

#1171092

As you have already learned, all three options there for us, and all have pros and cons, both medical and personal. I had surgery, super happy with my decision. Think I have posts about my experience if you search for them.
Shirley

[Oberon]

#1171093

Had my consult with nuclear medicine doc today. Leaning towards RAI again. He was very casual about the treatment. Instructions if i go that route are just no seafood until i take the treatment. He said that with the dose I would have I would not need any precautions after i returned home. Really? That is contrary to what I have read. My Endo also told me that. He also said that with Graves, patients often eventually go hypo because the thyroid burns out. Is that true? Surprised I had not heard that before. Ready to be active again so the thought of zapping the thyroid seems tempting. Is taking synthroid really that bad? What are people experiencing on it?

My symptoms that were eye related have subsided. Really only had that for a few hours. Tightness in the throat ebbs and flows.

Meeting hematologist tomorrow to find out if methimazole is an option for me.

What is a typical iodine-131 dose? I had 66 percent uptake with the scan.

Thanks for the help with the neuro-ophthalmologist help.

Oberon

[StephenE]

#1171095

Hi Oberon,

My doctor report explained that dosage is based off of the size of your Thyroid and your uptake. Based of the size of my gland and uptake the recommended dosage for me is 20mCi.

[Oberon]

#1171096

Thanks Stephen E. Just back from the hematologist. He had the same news that my Endo did. My risk is greater due to my WBC being on the low end. He found some studies that reported that my auto-immune disorder may be lowering my WBC. That said, my risk is higher than most for the side effect with methimazole. Considering that the ATD is not a cure but a gamble that I may go into remission, I think I am headed for the cure of RAI. I have had several people and doctors so far (even the hematologist) recommend RAI. The thought of dealing with drug side effects and long term balancing of the meds hoping for remission does not sound appealing to me. My hope was that I could have been a candidate.
Everyone tells me synthroid is not that big of a deal. True? Has anyone had a hard time with that?

Oberon

[Bobbi]

#1171094

Many people online, Oberon, confuse our RAI with the dose thyroid cancer patients get and that’s where at least some of the different “recommendations” after RAI come in. Cancer patients get many, many times bigger a dose than we do, even though they’ve already (typically) had their thyroid surgically removed. As a result, their bodies are eliminating much larger quantities of radioactive materials for a few days than we are. Again typically. What you have to do is talk with YOUR physicians and nuclear med doctors to find out what you should do, based on your dose.

It has always been my understanding that the constant antibody “attack” on our thyroid cells eventually wears them out, hence the natural progression of the disease is for us to go hypothyroid eventually. I know there are people online who suggest differently. But from my study of the disease, and things that I have read from reputable sources, it is likely that, over time, we will go hypo. Your best source, again, is your doctor.

Synthroid IS thyroid hormone. It is chemically identical to thyroxin, which is the form of thyroid hormone that the body naturally breaks down into T3 which is the active hormone for the cells to use. I tend to think of it as a “timed-release” T3. It has a relatively long life span: hormone “life” is measured (much like radioactive substances) in “half-life” terms. So the half-life of thyroxine (T4) is approximately six and three-quarters days. After that period of time, half of the original amount is still available for the body to use. As a result, we develop sort of a pool of hormone ready to use when we need it. I’ve been on it since 1997, and I think it works really well.

[Kimberly]

#1171089

@Oberon – Restrictions after RAI will be explained by your nuclear medicine team, but I would be really surprised if there were *no* restrictions at all. Here is some general guidance from the American Thyroid Association on post-RAI safety guidelines.

http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/thy.2010.0403.pdf

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

The tables are on page 5 of the PDF document (page 339 of the original journal article). Be sure and take a look at the ones for hyperthyroidism vs. thyroid cancer.

As for Graves’ patients eventually going hypo, we had a presenter at our 2009 conference who believes that this is due to antibody activity, as opposed to loss of thyroid function. In Graves’, the more common scenario is for antibodies to *stimulate* thyroid hormone production, but they can also end up blocking thyroid hormone production as well.

Take care!

[Bobbi]

#1171097

I thought that there were two (at least) different antithyroid antibodies. One, as in Hashimotos, which blocks thyroid activity (hence hypo), and another, different antibody (Graves) which stimulates thyroid activity. Why would a stimulating antibody start “blocking” thyroid function?

[gatorgirly]

#1171098

I echo the comments Bobbi and Kimberly made. My endocrinologist is amazing but he isn’t a radiologist, so he wasn’t the one who could explain RAI to me in great detail. When I got to the hospital to swallow the pill, both the nuclear medicine technologist and radiologist explained the implications and 72-hour restrictions to me in great detail. I actually called a few times during the weeks preceding my appointment to make sure my endocrinologist gave me all the right “preparation” restrictions (for me, there were none) and they were very understanding of my questions and concerns. If you’ve scheduled your RAI, go ahead and contact them – I’m sure they’ll be very helpful. Nuclear medicine is a totally different department than endocrinology or even radiology and I think the staff are used to patients’ concerns.

[Kimberly]

#1171099

Bobbi wrote:

Why would a stimulating antibody start “blocking” thyroid function?

At one point, the theory was there was one antibody, and depending on how it attached to the TSH receptor, it could either block or stimulate thyroid hormone production.

Now it’s believed that there are actually two different TSH receptor antibodies, TSAb (stimulating) and TSBAb (blocking). The blocking antibodies are different from the TPO and TG abs that are associated with Hashitmoto’s thyroiditis.

Here’s an abstract to one study, although much of it is medical jargon. I’ll post a better reference if I can find one.

http://www.ncbi.nlm.nih.gov/pubmed/11383928

[Oberon]

#1171100

Thanks for the answers and link to the after treatment precautions article. It was very informative. I am very surprised by level of precautions considering what I heard from the nuclear med doc. I was really told just to stay home for the first day and then nothing else other than avoid holding babies or children with developing thyroids close to my neck.
I have already cancelled a business trip next week, but I have two trips scheduled in the next two months. What is going to happen at the airport? Has anyone had to deal with setting off radiation detectors? The article I read said I may set off detectors for 4 months. Really? Is that the higher dose or the hyperthyroid dose?
My trips are to see family. My best friend just had a baby and there are tons of kids around. How many weeks should I wait before I see them?

The plastic trash bag is also necessary?

Worried again. Every time I get settled on RAI, I get freaked out by something.

Oberon

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