[Anonymous]

#1020507

I went in for my RAI this morning and left concerned about my current endo! I have not had a thyroid scan for over two years, and it was at a different medical facility when it was done. My current endo knew this because I told him and his staff at three different times. Plus I called Monday to ask about preparation for today, they asked about the scan and I reiterated it had been over two years at a different clinic and nobody said I need a new scan. When I got to the hospital for the RAI this morning, the radiologist won’t do it until I have a new scan. Well I can certainly appreciate that and felt relieved that someone has my best interests at heart. It appears my current endo doesn’t have a copy of my scan from the other facility at all. The radiologist today said it’s a life-long and irreversible decision and he wouldn’t be comfortable doing the RAI without knowing where things are NOW. I completely appreciated that from him. But I am irritated and concerned with my endo for not ordering a new scan in the first place. I suspect my endo has never seen the scans from my previous medical facility; It appears nobody has those records. Anyway, looks like I can’t get scheduled til May 17th for a scan.

[Anonymous]

#1077445

First, information. Hyperthyroidism is determined by levels of thyroid hormone in the blood, not by a scan. Degree if SICKNESS, if you will, is determined by the level of hyperthyroidism, not by anything on the scan. The scan shows whether the uptake of iodine in the thyroid is “diffuse” (i.e., everywhere) or contained in discrete (sp?) individual spots (nodes). If it is “diffuse” it is one indicator of GRaves. So, it doesn’t matter when the scan was taken for that part of things — if your diagnosis came up Graves, then your scan showed that the iodine was everywhere. The scan also shows the size of the thyroid — which is the information that can be helpful in determining the dose of RAI needed to effectively treat the condition. IT is still a guess of sorts, but it helps to hone things in. The uptake portion of the test shows the percentage of iodine taken into the thyroid in a certain period of time – and this number can also be used to help figure out the amount of RAI needed. The size of the thyroid can be palpated, typically, so doctors may be able to make a fairly good guess based on what they feel when they check our throats. Uptake obviously is less guessable, but I would be interested to have that radiologist show me chapter and verse in studies that demonstrate that there are VAST differences over time in the results of this test on the same patient. Because what my doctors (including the ones I know as friends) have told me is that someone having a high uptake is not necessarily sicker than someone with a low uptake. The degree of sickness is determined by how much thyroid is c oursing through our veins AND how long we’ve been suffering from it.

The radiologist’s comment about your decision being a life-long one, and irreversible, is puzzling. Of course it is irreversible. That is why you put off having surgery or RAI for two and a half years. Graves disease is also life-long, and irreversible. — at least with modern medical knowledge. So what was the point of the statement??? To try to change your mind? But that isn’t his/her job. I dont’ understand where that comment came from.

I’m sorry you are frustrated. I’m sorry you have to wait another few weeks before you can get on with your decision. I’m not at all sure, however, that you should be annoyed with your endocrinologist — especially until you get in to have a chance to ask questions. The radiologist may carry the lion’s share of blame.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1077446

Thank you so much Bobbi…I find what you said so interesting! I will call my endo to ask if they understand why it wasn’t done. The other thing the radiologist said is that if the scan is over 60% they would do it, if under 30% they wouldn’t. He also said they would make sure there aren’t nodules…I know two years ago there weren’t and whatever confirms graves was over 60%. I’m wondering if nobody could find my scan from two years ago or something. I have been encouraged to do RAI by three different endos this entire time, so naturally it kind of threw me yesterday. One more question, my T3 and T4 were stabilized for a few months and I went off the meds, but during that time my TSH remained suppressed as it has this entire time. Due to the TSH suppressed, my endos didn’t believe I would be able to stay off the meds. When a person is stable with T3 and T4, but TSH remains suppressed, can a person be in remission? Just wondering.
Thanks again Bobbi!

[Anonymous]

#1077447

The 30% & 60% comments about RAI: That refers to percentage of uptake of the test RAI — i.e. the “uptake’ portion of the uptake and scan test. This percentage uptake does not “determine” whether you are hyperthyroid or not. Bloodtests determine whether you are hyperthyroid. Someone can be hyperthyroid, but have a low uptake on the test. But if someone who has a low uptake — within the normal range somewhere (and 30% was within the normal range for the lab where I did my test), the RAI might not “take”. Or you would have to give such a large dose of it, given the size of your thyroid, that doctors might prefer to do surgery instead.

As to nodes: individuals with hot nodules (the distinct areas of super-active thyroid tissue, with the rest of the thyroid being normal) can still do RAI. It is a treatment of choice for hyperthyroidism caused by an autonomous node. Why? Because the parts of the thyroid that are normal are shut down by the pituitary’s lack of TSH. They are not active. They do not take up the RAI, and do not get damaged (or at least not much) by the treatment RAI. The hot nodules which take up the iodine DO get damaged, and removed.

My endo does not look at T3 and T4 numbers when it comes to determining effectiveness of treatment. She looked at them occasionally when I was in early treatment, but the TSH was considered the most important number. Why? I was told the TSH test is much more accurate than the tests for the actual thyroid hormones. You can discern teensier levels of it. Also, TSH is a bit like a “moving average” of thyroid hormone levels, whereas the T3 and T4 tests are a brief window in time. The actual thyroid hormones can fluctuate, without the TSH moving much, if any. But if, over months, the TSH is still suppressed, it is usually thought to be an indication that the brain/pituitary is still perceiving too high a level of hormone in the blood — at least most of the time.

Bobbi — NGDF Online FAcilitator

[Anonymous]

#1077448

Hi Bobbi…Thank you again for all the valuable information. I am still trying to figure everything out. I did not call my endo today, but received a call from the hospital and they moved up the date for the new Uptake Scan for this coming Monday and Tuesday. I was glad they moved it up…I asked them if they reviewed my previous scan. She simply said it wouldn’t matter because it is their policy to not do the RAI unless the scan had been performed 6 weeks or less PRIOR to RAI treatment. I’m not sure if anyone else out there has had this happen but I’d love to know. You’ve given me a ton of input and I appreciate it. I hear about other people’s doctors pushing them to do it and now I have someone else saying, “Hold on just one minute”. Part of me is glad for being thorough, the other part confused! Is it due to all the lawsuits out there? I have no clue! But believe me…after mentally preparing for this after so long, I find myself second-guessing my decision. But I’ll go ahead and do the scan coming up, it certainly can’t hurt!

[Anonymous]

#1077449

I’m glad the hospital is not making you wait weeks to get the scan done. I remember how sick I was while hyperthyroid, and the thought that “rules” could make someone who is sick like that wait weeks to get a test is horrid.

I hope everything works out for you.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1077450

Thanks Bobbi…I will let you know how the results turn out.

[Anonymous]

#1077451

I read through your ‘conversation’ with Bobbi. I am glad that you are able to move forward with the scan and RAI. Just wanted to toss this out for others. Each hospital has established protocols for treatment etc. that it needs to follow. That doesn’t mean that you have to agree or that it’s right but it something that the doctor’s office should be knowledgeable about and communicate to patients.

I had RAI (with an uptake scan just prior) last September. Went into severe hypothyroidism by January. I have been taking the Synthroid since then and am feeling so much better. A lot of my energy, enthusiasm and sense of humor is back. I sometimes have conversations with people who also take Synthroid because they have ‘a little hypthyroidism’ without Grave’s Disease but that they sometimes forget to take it. This appalls me, I am very careful to take the medication just as prescribed and directed. I never want to be that sick again!

[Anonymous]

#1077452

So for some reason I am freaking out about having this done. I keep reading and rereading all the posts on it to reasure myself that this will be ok. This may sound strange but I am so used to dealing with this and I have been feeling good that I think I am afraid that I will all of a sudden feel bad and not be able to get back to “normal” I know that is silly seeing how I actually am still very sick. My last labs showed my levels back to where they were originally. I do not want to be away from my kids either:( They said 3 days minimum so I am planning on just being in my room. Luckily I have a computer and tv in there. I know I am rambling on here but I just needed to vent a little and all though hubby has been very supportive and is going with me today he does not understand fully how I am feeling. Thanks for listening all. Renee

[Anonymous]

#1077453

Hi, Renee:

I do not know if I am “in time” to give you some encouragement. I do know how you are feeling, however. Despite the fact that my mother had Graves, and her RAI treatments (she needed two of them) made her well again, I was still very nervous when I went for my own treatment. And I’ve read the same from lots of others. I hope all goes well today.

Wishing you well,
Bobbi — NGDF Online FAcilitator

[Anonymous]

#1077454

Thank-you Bobbie

I Just got back from taking the RAI and am feeling relieved. I will keep you all posted on how I’m doing.

Renee

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